Wednesday, December 30, 2009

The medicaide application is IN! Now we wait....

I submitted an application for Medicaide (State assistance) on Mom's behalf  today.   This means we've exhausted her existing cash resources and we are asking the state to contribute to her rent/care at the assisted living center.    Before compiling all the relevant paperwork I tried for four months to get some information from the State of Idaho about a couple of things but I got know where.   We have an odd situation concerning Mom's property - which I'll save for another post - so I wanted to understand what the state would do.  Starting 4 months ago, I began emailing, calling and contacting friends who work for the Idaho Dept of Health and Welfare.  I got little information other than a standard reply, "we must consult our manuals and get back to you".  Well, I heard nothing until I bugged just the right person and got a number for a "customer service center".  They  readily found someone who could actually answer my questions.  I called them three times to see if I'd get a consistent answer.  I did so figured it was safe to submit the application.

I'm not trying to "game" the system but I needed to understand how the State would approach some jointly held property and just what evidence the state wants to see regarding taxes and assessed values.   I felt pretty good after submitting an 1 inch thick packet of material, that is until I spoke with the Director at her ALF.  My mood quickly soured.  She told me some not-so-good stories about applications getting lost, delayed more than 60 days and in general, made me concerned.  I kept copies of everything so I can resubmit the materials if necessary but I'm just worried about paying for her care until Medicaide kicks in.  We worked out a plan to use Mom's Social Security and pension plus some funds from me for the time being but I can't contribute much for long.   So - I'm left waiting again.  At least I have a short-term plan until we know more.

I must admit to having qualms about being so open that Mom's applied for state assistance.  On one hand, she's proud and I'm proud; I hate to admit that she's broke.  On the other hand, she's never taken a dime from anyone else and my parents worked hard to provide for themselves, their parents, their kids and other extended family.   Often they went without and lived simply.  They never let anyone go without food, shelter and the basics even when it meant they didn't save a thing.  In her old age, she's paying for that "take care of your own" attitude.   What's worse, to let many go without years earlier or have one person accept some help now?

This is by no means a free ride.  The state will ensure that she contributes all she can (social security and pension) and will permit her to keep $90 a month for her personal needs.  She's spent just about that much on hair appointments and minor things each month.  It's not a lot so I'll have to supplement for things like clothes, shoes, treats or soda pop.  I'm happy to do that for her; it's relatively little money and if it makes her happy then it's worth it.    Her sacrifice years ago meant that I and our family had what we needed so now we can give up some to ensure she's comfortable.

Tuesday, December 29, 2009

Reverse mortgage - approach with CAUTION!!!

A friend recently helped her mother get a reverse mortgage on her home.  Though I'd hear of them, I didn't know the specifics until she shared some details with me.  Some company offers to give you money for "ownership" of the home.  The home owner gets to live in the home for as long as they wish - but I believe there's a 10 year maximum on this one - and when they move or pass away, the bank sells the house to recover the amount.   It all sounds terrific until she told me about the $11,000 in fees and that her mom was still responsible for upkeep and property taxes.  I suppose the fees are no different than a standard mortage one would take out to buy a house.  By the time you add realtor fees, "points" and a down payment, it could be more than $11,000.  BUT to take it for something like this; from elderly people who need the money, just seems mean and WRONG.

I have another concern about this situation.  I learned later that my friend's mom used $40,000 of the $100,000 she received for cosmetic "fixes" to the house.  This really disturbs me because the only one to really benefit from the beautification is the bank; they'll reap the added equity and the elder won't.  She will be more comfortable with her surroundings and will worry less about what the neighbors think.   Some of the $40,000 went for "real" repairs to keep it safer and cleaner which is readily understandable.  If it were my mom, I'd try to be very cautious and to maintain as much of the original principle as possible.  The remaining $60,000 or so will only pay for  2 to 2.5 years in a quality assisted living center and much less in a nursing home.   That $40,000 might be greatly missed later.

Worry, worry, flashes and indigestion, you'd think I have teenagers

For the third night in a row, I woke up about 4am and just could not return to sleep.    My mind races. I wake up with all sorts of worries on my mind; here are a few
  • paying for Mom's needs/comfort as her funds run low and I have no job
  • paying off the debt I've incurred for Mom's comfort over the past 6 months
  • how she'll get in/out of her room now that she's wheel chair bound
  • upkeep of her little old house and yard now that it's temporarily occupied by my brother
  • property taxes for her house
I've always considered myself a worry-wort but until now I was able to handle it.  I tackled stressful things by DOING something - I'd make a plan to fix the matter or I'd make something to take my mind off it.  Those approaches just aren't working this time because there is little that I can do for Mom other than BE there. Being there is difficult because I've established my life in a different location.  Jobs in the region where she lives are scarce .  I worry most about paying for everything but the bigger concern for me is keeping my MOM from worry.   I don't want her to go without the basics, especially things like new socks, undies, warm slippers or hair cuts.   I want her to always have her favorite cookies on hand because it's a simple indulgence that will enhance her quality of life and make her feel at home.

Getting all worked up at my age means two things - hot flashes and / or indigestion.   So far the hot flashes pass quickly but the indigestion lingers and fails to respond to anything like tums, milk or water.   I've remember my Dad going through the same thing.  I'd wake up in the night and hear tinkling glasses in the kitchen; he was after milk or tums to kill his heartburn.  He'd lay awake at night and fret over work issues, adult kids and their kids, things he had to fix around our home or his parents or in-laws.   Friends tell me their worries about (and FOR) their teenagers and young adult kids - paying for college, helping with first cars, recovering from illnesses or surgery.   It's all part of being human I guess... we want good things for those we love; being unable to help them get it is painful.  I feel the need for the old prayer:
Lord, grant me the ability to change the things I can, 
the strength to endure the things I can't
and the wisdom to know the difference. 
My parents quoted this often in various forms.  Dad worried in silence and told the rest of us NOT to worry.  Mom worried out loud and worked at fixing things but she always slept well and never needed tums.    I am trying  to follow her example but my nature is more like my Dad.  I'd better stock up on the Tums...

Friday, December 25, 2009

Names on bank accounts - approach with care

A few years ago my Mom added my name to her bank accounts. I didn't give it a second thought until tax time when I got statements for earned interest. She didn't make enough to pay taxes but I did. I had to report it as income on my tax returns!

That impact on me is relatively minor but it made me think - the risk to my Mom is much greater. She ADDED me as a secondary owner of her checking and savings accounts. This means if I were to file bankruptcy, I'd probably have to list half of the value as MY asset. I wonder if creditors could go after half of HER money to pay my debts? What if I were elderly and needed to apply for medicaide - would they make her use half of her funds for my medical expenses?

I've not asked her attorney about it because it was a relatively small amount and it will be consumed for her rent at the ALF soon enough. However, if my financial situation were less stable I'd be quite concerned. 

1st Christmas in assisted living is ho hum...

Mom's first Christmas Eve in assisted living was bitter sweet.  She was full of "bah humbug" attitude when we went to pick her up.  Even a couple of days before Christmas she was excited for the season. She had some goodies and wanted to share them with hot coffee and good company.   We did that on the 23rd. On the 24th the bright mood she had faded into the blues.  As I helped her get dressed she complained about everything - she's sick of the Christmas tree and decorations; the aides ate her little candy canes too fast and didn't leave any for her; the food at lunch was too tough to cut and she's sick and tired of their under cooked rolls.  She didn't want to go in the wheel chair, she's embarrassed to use it; she could walk if it weren't for "that thing". She wanted her fancy black shoes (forgetting that her feet are too swollen to fit any longer); her hair was mess....etc, etc, etc.   There was nothing to say that would lighten her attitude so we didn't try.  We bundled her up and got her in the car.

At my brothers house my husband and nephew sat her ON the walker and hoisted her up the 3 steps.  (She weighs about 90 lbs now so lifting her isn't bad.)  Once inside a hug and "hi gamma" from her great grand daughter (age 2 1/2) lifted her spirits.   We took turns sitting with her and talking.  We got her a plate of hot food, soda, pie and gave her lots of hugs and kisses.  We opened gifts and made fun of each other.  She was like a different person and enjoyed herself.   On the drive back to her ALF, she got a little weepy and returned to her theme - "If I were home, I'd be fine.  People would come over and I'd enjoy the holidays again."   Over the past two months she's said this more and more.  There is nothing we can say to make her agree that she can't be home.  It takes a fall or something else like that to make her say  - but only once or twice - that she feels safer the ALF.   We don't push it with her and perhaps that's the best gift we can give her - to NOT argue with her.

We never tell her she's forgetful; we never tell her she's weak. We DO tell her that her house and bathroom aren't safe for her any longer.  We ensure that she's as comfortable as possible, we take her out, we go for drives, we visit. We tell her she's loved and we make her part of things.  It's hard to do without getting upset ourselves.   We don't want to see Mom unhappy, feeling isolated or abandoned but at this point in her life, there is very little we can do to make her happy.  Even if she were home she'd complain about the same things - she DID complain about the same things and we all felt guilty because we couldn't do anymore. The fact that she's living in the ALF just makes us feel even more guilt.  Leaving her there room is still very difficult but we also feel some relief knowing that she has help 24-7.  I think we need to work on giving ourselves the gift of REASON and realize that we DO a lot for her.  We try as best we can and that's enough.  We saw our Mom do the same thing for her parents and in-laws. We know she felt guilty then and that the woman she was during that period WOULD NOT want us to feel guilty now.  It's a gift we must realize and accept from her but it's a hard gift to take to heart.  

Wednesday, December 23, 2009

Mom's missing Christmas chaos and it upsets her

We got to my home town and Mom's apartment this evening.  I stayed and visited for three hours over coffee and holiday cookies.   Mom mentioned three times that she ought to be home baking, decorating and getting ready for company.  Of course, I gently told her that she just can't be at home anymore, she needs too much help.  The second time she said it, I realized that she's sorry she CAN'T do it anymore.   It's not that she isn't HOME, she can't bake, she can't put up decorations; she wants a houseful of people to tend to again.   I know how much I enjoy entertaining and I learned it from her.  For her to NOT be involved makes her feel awful and so very old and incapable.   I don't know how she can stand it.  I fear how I'll handle it when it's my turn.

So tonight, rather than feeling the joy of the season, I'm feeling so bad for my sweet little mom.  I don't want her to feel that she has nothing to contribute.  I don't want her to feel ignored and abandoned.  Tomorrow we'll take her, her walker, her wheel chair and bundle her up for a ride to my sister-in-laws house.  We'll get her settled at the kitchen table, get her set up to peel potatoes or something else and help her feel like she's part of things still.  She'll be slow, we'll probably have to do half the job but it's worth it to make her feel good again even for an evening.

Monday, December 14, 2009

The Plunger Incident caused some waves but we'll see...

I got an email from the ALF Director a couple of days ago.   She outlined the preventive measures they put in place after the messy plunger was left in Mom's room.  It contained all of the things I wanted to see but I am dubious. It's because I must rely on others judgement and sense of responsibility to help my mom and NO ONE will take as good care of her as I would.  

I fear what will happen - or really, what won't happen - when I'm not there to keep an eye out.   I wonder if they ensure she knows about the  nail spas, the music and singers that come to entertain and if they help her to the living room where she can have coffee and visit. 

My family and I are committed to keeping an eye out. We'll coordinate with each other and we'll report any problems to the state next time.  But, they don't visit as often as they should and I can't be there more than a week at a time, so what happens when we're not there?  What happens when she's on her own?  I spoke to a couple of the regular aides and they said they will try to keep an eye on her and on the other aides who might not care as much.   It's something - I hope for their good intentions to come true.  It's all I can do until I can get there again.

Friends judgement is hurtful enough to end relationship

A few of my friends are going through similar situations as me - trying to help a parent move into a smaller home or one who can't live home alone any longer.   One in particular gave me a really rough time the other day and I'm seeing some really old, deep-seated resentments bubbling up to the surface.   She's become mean spirited, unkind and makes catty remarks "at" me.  She's recently moved her mom into her home - which I admire because it requires so much patience and time.  Since then, when we speak she goes to great lengths to use the term "I can't be that self-centered...", "well, you don't have to give up anything like we do...".   When I speak about doing something with my husband like going to a movie, I get an eye roll and some comment like, "...if ONLY we had time to do that or, we can't, we have kids in college."

She seems to think that I've had it so easy, like I'm a spoiled child and do everything for myself.  Now it's my turn to pull the martyr act....If she only KNEW what I've had to do since my early 30's - that's 15+ years!  While she was raising a family, I was dealing with sick uncles, a terminally ill father and an epileptic Mom who needed special support to help prevent seizures.  For five years I drove 12  hours round trip every other weekend to help my parents.  I took jobs that enabled me to take 3 day weekends and that flexibility cost me raises, promotions and employers took advantage of my need for extra time.  I had no social life, no chance to meet new friends much less a nice guy.   Now I've got to work to make up for the retirement savings that I spent going back and forth.  Because I need to work now and because my Mom needs so much physical assistance, her living with me is just not a good idea.  She needs help 24-7 and I just can't do that for her. My husband and I are also trying to transition from our home in Indiana to Portland, Oregon.  We have no home to move her in to.  I also hate to move Mom to a new community because it would be difficult to find a physician willing to accept her medicare - though my "friend" would call that an excuse.

She judges me because I won't take my Mom into my home. She doesn't want to see that I can't - and there are a variety of reasons but she's too busy being judgemental and self righteous to listen to them.    I've spent years being understanding of her needs, attitudes, her choices and I've been happy that she's created a wonderful life and family.   I'm not getting the same understanding - I feel like I'm a supportive friend but when I need a friend, it's not there.   I see the need for the old saying...." with friends like that...who needs enemies."   I don't feel like I have a friend in her any longer.  I makes me really sad but I am also resolved to remove the toxic relationships in my life. She'd call that self-centered, I call it self-preservation.

Thursday, December 10, 2009

Caregiver study makes me say "Well, NO SH__!"

Listening to the radio the other day I heard a news article about a study that "revealed" (heavy dramatic sarcasm intended) that 30% of American's are acting as care givers for a family member.  The study of 2000 caregivers, called Caregiving in the US 2009, was conducted by the AARP with funding from the MetLife Foundation.    It revealed that care giving is - now I'm quoting Elinor Ginzler of the AARP here - "essentially a half time job."  Well NO SH__T!

The article further states: Many of the results of the survey are similar to those from earlier versions in 2004 and 1999. Two-thirds of caregivers are women. The average age is about 48. Almost all--86 percent--care for a relative. Most often, 36 percent of the time, it's for a parent. On average, caregivers have been providing care for 4.6 years, and three in ten report doing so for five years or more.

Ginzler says one of the biggest changes to show up in the survey this year is just how much caregiving can interfere with regular work. "Making accommodations in the workplace has increased in several ways," she says. "In most cases, two thirds of them, means they either go in late, leave early or take time off."

Again, all I can say is WELL NO SH__T!!  And I DO mean the SH__ word because I'm disgusted with studies like this and no other word expresses my disgust better than that.   Growing up it seemed that everyone I knew was involved in helping an elderly parent, grand parent, relative or neighbor.  It's just what you DID - it's what you DO because it's the RIGHT thing to do.  Why do we need studies to prove it?  Don't these decision makers look around at their own families and those of their employees?

I'm sure this study is well intended.  I know that the AARP and MetLife want to track trends, but if you got the same results in 1999 and 2004 - please DO SOMETHING PRACTICAL TO HELP!   Here are a few ideas:
  • Give them half or full pay for hours worked on programs to repair homes of elderly residents or to install ramps, tubs, counters, - any repair or remodel that helps people age in place.
  • Encourage employers to look at the WHOLE value of an employee and NOT penalize them with lower wages for flex time. 
  • Pay for respite care so your care-giving employees can have a day off away from work AND family responsibilities
  • Give tax credits to people who work to keep their parents OUT of nursing homes, the requirement to provide 50% of their support is too high too meet given social security and pension incomes
  • Sponsor care giver clinics to help people understand the legal issues that might come up when helping elderly parents and to identify what type of help is available to their parent/relative/neighbor
I spent the better part of my 30's returning to northern Idaho to help my own parents and I'm paying for it now in lower retirement savings.   I took jobs that permitted some flexibility so that I could travel often. It meant that, while my overall contribution to my employer was great, I got paid less, got a lot of the "crap work" and wasn't considered for promotions because I needed the flexibility.   I was in a bad spot and, more than once, my employer took advantage of it.   I've also had a couple of GREAT and supportive employers, I'll cover that instance in my next post but for the most part, mine and friend's experiences have been bad.

As our representatives in the US House and Senate fight over health care, I hope that they will be wise enough to look at the WHOLE picture and give some relief to those of us who just do the right thing.  I hope they would encourage companies to do things like this rather than listen to the insurance industry hacks who are worried about enrolling young, healthy people at the highest rate possible.   Most of us work for other people on their schedules.  In between those work hours, we raise kids, we clean, we cook, we help our families and each other.  We deserve a break!

To find the radio segment or read the article follow this link to National Public Radio (NPR):    

A hard talk with ALF Director and I still don't feel better

I discussed the "plunger incident" with the ALF Director on Monday afternoon and I didn't feel much better afterward. Though she was nice, I don't feel the matter will generate the attention and actions I think it deserves.   Apparently she got a call Friday evening and the staff discussed it that morning in their "stand up" meeting - I guess that means they all stand around and relay news.

I wanted to hear that she'd taken some more proactive approach to investigating this and then making a plan for prevention.  First,  she wanted me to relay exactly WHAT happened so I did in great detail.  I told her that I suspect the plunger full of poo had been sitting in the corning since morning because Mom said she smelled something earlier in the day.  The Director said basically said you're not SURE it was there all day?   That didn't make me happy... I finally said, I don't care WHEN it was used, I care that it was left in the corner full of poo and it's unhealthy and unsafe.   I care that my mom's room smelled like a fetid sewer for hours and no one investigated!

After 10 minutes I was not getting any idea of what she planned to do so I directly said: Look, I'm a "fixer", that's how I've made my living so here's what I want to see from you:
  • identify the aides that worked that day, if you can't identify the specific aide, talk with them ALL
  • train them on how to properly USE and CLEAN a plunger after it's been used
  • train them on the proper way to empty a commode and do it in two flushes
  • get different plungers that don't have so many surfaces for stuff to hide
I WANT to believe that she planned to do something like this but I want to hear it from her - I want to see PROACTIVE measures to prevent stuff like this. It seems totally absurd to me that I have to tell her this.  I HOPE that she planned to do this anyway and she just didn't feel comfortable laying it out for me or perhaps she thought I'd feel better if she just left me vent.   If that's the case - she's patronizing me and I don't like that either.  I'm not paying for patronizing, I'm paying for decent and dignified care for my mom and I'm not seeing it.

I ended the conversation by saying that I believe she WANTS mom to get good care but things like this are a risk.  If something EVEN CLOSE to this happens again, I'm calling the state to report it. Dealing with the "inputs and outputs" - food and poo - are the most basic necessities we have whether we're dealing with babies or elderly parents so I'd hope they'd have techniques and processes to deal with all kinds of scenarios.

Friday, December 4, 2009

I'm ENRAGED and ready to complain to the state Dept of Health!!!!!!!!!

After visiting Mom this evening, there are not enough colorful adjectives to describe my anger at her ALF, the aids, the management -the whole kit & kaboodle.   As I entered her room the stench of urine was over whelming and just GROSE!  She said she'd noticed it that morning - which meant it smelled BAD all day.  All day and no one there thought to look for the problem? I immediately went looking for the source.   Her commode was in the shower, empty so I cleaned it. That didn't do the trick.  Looking around the bathroom, I noticed an odd looking plunger near the toilet and it bad bits of paper stuck to it.  I picked it up and a pile of wet tissue, poop and urine PLOPPED ONTO THE FLOOR!!   I was ready to blow up right there but didn't want to upset mom. 

This was no ordinary plunger, it's got a very long "bowl" portion that has all kinds of "folds" like an accordian - that means more places to hold urine, feces and tissue.  My first thought was "What a stupid plunger!!"  I just wanted this stench to stop so I filled the plunger with water and dumped it in the toilet - even MORE stuff came out of it.   I rinsed it 4 times until crap - LITERALLY CRAP - stopped coming out of it.   I left the pile on the floor and went down to the nursing station to demand that someone come clean it up -  NOW

The CNA on the floor  had no sense of urgency about cleaning it up which made me even more angry.  I approached her and said "I am ready to BLOW UP, I am so mad right now...."  I explained what I found and what I did.  I told them that the Executive Director should expect a call first thing on Monday.  I did not raise my voice. I didn't want to upset the other residents so I stayed very calm but it was hard, very hard. I was shaking, I was so mad.   I told her about the stench, I told her it had to be there since the morning and that I left a pile in the corner that should be cleaned up NOW.  I got the standard response, "I'll send an aide down there."

30 minutes later, there was no aid and I was even more angry - if that's possible.  I had to leave or I was going to say a LOT of things at decibel levels that everyone would regret.   I stormed down to the nurses station to demand an aide NOW or I was calling the state.  I told them that if it happened again, I'd call the state. This is a matter of health and safety not just bad smells!   What if they'd got it on the floor and Mom walked through it?   An aide followed me back to the room and began to clean while I told Mom good night.

On my way home I called my sister-in-law to vent, my brother answered and after hearing about this told me that there were two other occasions when he noticed the plunger and he cleaned it too.   It didn't "contain" anything but there was paper on it so he figured it needed a rinsing.   I am SO sorry that I selected such a large place for Mom.   There are over 100 residents in this place and it's about 40 too many.   They ned more help and help that is willing to do the dirty work of taking care of other humans.   It doesn't matter if they are old, young, rich or poor - there is poo, pee, vomit, tears, food, smelly feet - all kinds of things to do whether it's a baby or an Elder.   BOTH deserve better care and attention than this.

Thursday, December 3, 2009

After 70-ish it's OKAY to lie to your Mom.... or Dad

I've come to feel it's necessary to lie my Mom; and I don't feel guilty about it.   It was hard to get over that guilt but it just makes life so much EASIER for her and thus for me.   Mom lived comfortably because she and Dad had little debt.  Their social security and pension monies were enough to ensure they had plenty and could easily meet the utility costs in their home.    Mom's rent at the ALF has consumed all but $3000 of her savings and I'm about ready to apply for state aid - in her state it's called Medicaide.   Mom would be horrified to take it and that her savings are gone so I lie.
I lie about her money, I lie about the condition of her little old house and I lie about my personal life - all to keep her content and feeling like things are just fine.   Over the past couple of years her ability to comprehend and process complex matters has decreased so I take advantage of that.   "..take advantage.." sounds negative but it's not at all.  Yes, I'm manipulating the situation and taking advantage of her diminished capacity but it's for her own good.   It's all to ensure she doesn't worry.

Often she'll ask me about the utility bills at her house or the property taxes or she'll an ad on TV and want something completely goofy.  I tell her that we paid the bills last week, "We wrote the checks out together."  I tell her that I'll order the object for her and bring it on my next visit.... By my next visit, she's forgotten all about the bills and the goofy object.

I've always been very  honest with my parents and both were very intelligent and able to tackle any complex topic or issue but that's way beyond my Mom now.  By lieing to her, I make her feel that things are just fine so she doesn't worry.  For her, it's very important not to worry.  As an epileptic she easily has anxiety attacks which will trigger a grand mal seizure which could be deadly at her advanced age.  Mom is still intelligent and curious and I'm happy that she is easily distracted by TV - the Animal Planet, How it's Made, the History Channel, the Discovery Channel and such...  I lie to her and she happily goes back to her programs to feed her brain and I feel good that she's content.

Wednesday, December 2, 2009

Old feet have special needs

Update: 12/18/2011:  another entry old caring for old feet
Update: 3/20/2011:  Please look at the comment section for some specific ideas on caring for old feet.

Original entry Oct 2009:
As a great display of respect and humbleness Christ washed the feet of his disciples.  There's a good reason why it was considered such a respectful act - feet were GROSE.  Feet are still grose but in Christ's time, it was even worse. Ancient people had less access to water and soap, shoes were basically sandals, and who knows what they walked in given that transportation was done with animals not gas-powered vehicles.   Last night I helped mom with a difficult task  - I washed her feet and cut her toe nails.   For elderly people cutting toe nails is often physically impossible and it's hard to find a foot doctor willing to do it. Our Elders are too stiff to bend down that far or pull their legs up that close.  Toe nails are often thick and really, really tough to cut.   Foot doctors, or podiatrists, used to cut toe nails but due to cuts in payments by medicare, medicaide and private insurance they say they make no money on the procedure.   

I've done this for my Mom for a long time and I'm the only one she really trusts to do a gentle job.  To start, I soak Mom's feet in warm water with epsome salts -  no soap or lotion added because that can cause dryness if I don't rinse it off well.   Epsome salt also has mild antibacterial qualities. The water can't be too warm and what's warm to me is hot to her.   Once her feet have soaked for about 10 minutes, I leave one foot soaking while I sit on a small stool and gently work on her feet.   I ease a wash cloth between her toes and delicately move it back and forth like floss to clean between her toes.  This is especially important because you don't want to leave this area damp and you want to remove all the dead skin or lint from sock and slippers.   To clip her toenails I use both flat and rounded clippers, it depends on the nail. I also use files to smooth the nails on top and picks to remove anything between the sides of the toe nails and her flesh.

Let's face it - feet are smelly and ugly but this is a necessary task for the health and well being of our Elders.   We need to be open about these basic elements of hygiene - toes, hands, skin, bottoms, ears and heads.  I'll bring these out of the bathroom so to speak and discuss each in detail here.  Though often overlooked, these are important to the well being and good care of our Elders.   It makes them feel better and what makes them feel better enhances their quality of life. 

Thursday, November 26, 2009

Source for helpful stuff

 As I help Mom, one of the things that frustrates me most is that that I can't easily find products to aid people weakened by arthritis.   I want a credible outlet with reasonable prices for things that will make daily things easier and help her live as independently as possible.   I FINALLY found a great source with prices that I think are reasonable.   They have an online store AND will send a catalog.  Here it is:

Happy shopping!

Wednesday, November 25, 2009

Two months away from Mom and I see a big difference

I've said before that I think Mom ages in spurts and I saw more evidence of that today.  I hate to admit it but she seems even weaker, paler and in some moments more easily confused but she is still trying very hard to  stay "with it".

She is using the wheel chair to move from her recliner to the bathroom and back and also to all of her meals.   Getting into and out of the wheel chair is exhausting for her.  Today, the maintenance man installed a floor to ceiling "grab pole" to give her something to hang onto as she gets moves from recliner to wheel chair and back.   I don't know if it will help or hurt.  She has no strength in her hands so I don't know if a vertical bar  will be beneficial; a horizontal bar seems more practical but they can't install something like that.  She grabs on to the arms of these chairs and tries to pivot on her feet but her poor old knees don't hold her up for more than a minute or two at a time.

After spending 30 minutes with her and the nurse from the ALF, we finally got on our way to a ride in the sunshine.   During the ride she was clear for the most part, she complained about the food - it's quality and quantity - given the nearly $3000 a month for rent.  She complained about the frequency of laundry and is concerned about her funds running out - which they are. She wants to pay rent and feels cheated at times.   She is able to be objective because she realizes she needs a lot of help and that the employees try hard to help her and always come when she calls.  Ten minutes later she had trouble remembering where we were and wondered about seeing a friend and finding their house.  Unfortunately the friends had been gone for years.   I gently pointed that out and she began to name the friends she's lost in the last decade... she got sad, as usual, and counted, on one hand, those that are left.  I'll take her to see them next week and hope that makes her feel better. 

Tuesday, November 17, 2009

The wheelchair milestone - Mom's got mixed emotions

After two rounds of physical therapy (PT)  Mom's therapist (also PT) finally called to discuss a wheel chair with me.  I agree that is necessary but know that the idea will depress my Mom.  She's already embarrassed to use a walker - which we use like a wheel chair anyway - so using a wheel chair will be confirmation that she is unable to move on her own. 

That said, I'm hoping for the best  but won't be surprised if the wheel chair gathers dust.  I hope it will enable her to be more mobile on her own, to get out and visit with other residents instead of waiting to be invited or be helped to the social room.Mom's hands are very weak and her fingers are deformed from arthritis so grasping the wheelchair to roll the wheels forward will be tough.   The PT will work with her to push with her arms and pull with her feet to manipulate the wheelchair.   This sounds great in theory but I have other questions:
  • Can Mom easily get herself in and out of the wheel chair to other chairs and the toilet? 
  • Will she decide it's too much hassle and time then just continue to sit alone?
  • She has an "urgent bladder" and often can't wait to go.  I know she'll move slow in this thing so can she make it on time and if she doesn't will she stop using it because of that?
It all makes me feel so bad for my mom - she's a prisoner of her body and her bladder.   Ugh!  So, I'm hoping for the best but not expecting much.  I hope Mom will surprise me... PLEASE MOM!! SURPRISE ME - it's all for your own sake.

Wednesday, November 4, 2009

Lack of communication by the Assisted Living Center - what a PAIN

For each week that Mom's in this assisted living facility (ALF) I find another reason that I want to move her. Some times it's based on Mom's comments or complaint, some time's it's because they just don't seem organized. Some times they do something that makes me wonder just how well they take care of my Mom.

Today it was a miss communication about a doctor's visit and now I'm ticked off. She had an appointment with the doctor at 2:45pm. The van was supposed to drive her there and my brother was all set to meet her. He planned to take her for coffee and pie afterward then return her to the ALF. So, I called the ALF about 1pm to remind them that she needs lots of notice to get ready, then I called Mom to remind her and she'd ALREADY BEEN THERE! She said the van driver took her in, waited and then drove around for about 30 minutes before taking her back. She was thrilled to get out and enjoy the sunshine. While I was happy that things went smoothly and that she enjoyed the ride, I was upset because my brother made arrangements to meet her there. He changed his schedule to be there and he also planned take her out. No one told us that the appointment was changed!

The doctor's office worked with the ALF to change the appointment from the afternoon to morning but the ALF didn't tell the family. The doctor's office left a reminder message on my NEPHEW's phone - he's not even on the contact list. He passed on the message but we didn't talk about the TIME. The ALF didn't call us even though they're supposed to tell us EACH time she has an appointment.

The bottom line for the ALF is that they just have WAY, WAY too many people to care for and not enough staff to tend to these details. It leaves me wondering about the other details that slip through the cracks. Or worse - WHO - slips through the cracks.

Feeling bad and Mom acts like "mom" to make me feel better

After my pity party yesterday, Mom did her motherly best and made me feel much better about everything. I did not tell her that I was frustrated, hurt, angry - all of that emotion I felt yesterday. I called her to discuss a doctor appointment and we chatted about some clothes that I sent last week. She thanked me and then got choked up and said, "I looked around yesterday and counted up all the things you've done to meet all my needs and make me comfortable. Have I said 'thank you?' You know I appreciate all of it and I hope you'll let me reimburse you."

That was all I needed to completely turn around my state of mind. Next week I might feel bad again, but her simple recognition today will last a long, long time. Of course, I won't take her money - unless it's for something big like a wheelchair or walker - those are beyond my budget. For a few clothes, some goodies, type writer ribbon - I can't take her money. I got some love today and that's enough!

Tuesday, November 3, 2009

Loss of logic and reason are hardest to handle

This morning I've hit a milestone. I'm fighting hot flashes, I have a migraine and I have not slept. I am so frustrated and upset that I'm ready to tell Mom to find someone else to handle her affairs. I feel that way right this second but it will pass. Stupidly, I never expected my logical, rational and sensible Mom to loose her ability to understand her situation. Here's what set this off:

Last night my cousin called to play a voice mail message that Mom left on his home phone more than a week ago. She requested his advice because she "doesn't like the way things are going here." Her voice sounded strong; there was her normal hint of stubborness she gets when she's feeling determined. My cousin understands that she's okay and her affairs are being handled well. He knows that I am not squandering her money. I, on the other hand, spent a sleepless night. Each time I began to drift off, I'd dream that I was arguing with Mom. I'd show her receipts, canceled checks for rent, prescriptions, shoes and such all to no effect.

Intellectually I know that she is dealing with a loss of control. Her body is failing, someone else is driving her routine, her funds are dwindling and she misses her own home. I guess I expect her to be at least a little grateful that I try to do so much for her. When I'm there with her and we talk about these things she gets it. She agrees that she can't be home, that her savings must be used for rent, that she needs things like new shoes. I leave feeling like things are okay then she makes a call to my brother, a friend or she gives me hell a week later.

I knew that dealing with my elderly Mom would be difficult but I just didn't expect to feel so drained by it all. I've always been a strong person, able to get a lot done and be practical and logical. There is no logic in her actions now and that's hard. I feel hurt - I know it's not Mom's intent, she can't help herself. The main reason my parents asked me to be their PoA and handle things is because I would NOT take such behavior personally and give up. But, the mom-child relationship is probably the MOST personal relationship we have - it's nearly impossible to separate the emotion from this relationship and respond to Mom's irrational thinking without hostile emotion. I need to respond with love and it's hard to do when she runs me down to others, when I have the same conversations about her needs and abilities over and over and over.

I remember my Mom sitting at the kitchen table crying in frustration and hurt after visits with her mother, Bertha. Bertha was in a nursing home, her short and mid- range memory long gone. She believed she was hospitalized after an appendectomy and expected to be released soon to go home to her husband and kids. She wondered to my Mom about the man that visited her.  She claimed he sold all of her nice glass ware and spent her money. The "man" was her eldest son; my favorite uncle and a good and honest man, who'd NEVER take advantage of her. For years she accused him of selling off her belongings -often things she never had at all. He finally stopped visiting. He was too hurt and felt that his mom was long gone. My Mom kept visiting out of a sense of duty, even after it was clear that Grandma didn't recognizer her as the daughter she longed to see at home.

I must admit to feeling better after venting here. I hoped to avoid venting on this blog but my feelings are honest and being honest is freeing. Things are coming full circle - I watched my Grandma help her elderly parents. I helped my Mom deal with Grandma, now I'm going through the same thing with her. I must remind myself that Mom is changed. Like my uncle, I feel my Mom is long gone. Because I love "that" woman, I will continue to help this one and hope that some portion of the logical and rational part of her comes through now and then.

Saturday, October 31, 2009

Take Power of Attorney seriously or don't do it at all

I just read about a couple of jerks in Portland, Oregon that abused their Power of Attorney (PoA) for an elderly aunt and I am TICKED OFF at these two dolts! After what they've done they should go to jail! When I learned about this terrible situation, I was pleased to learn they'd been arrested. I'll try to keep up with it and report back on their punishment.

To make a long story short: An 83 year old woman (I'll call her Elderly Aunt) was due for surgery, shortly before the surgery her age 60-something cousin and niece pressered her into signing a complete PoA. After signing it, Elderly Aunt was hospitalized in bad shape and her doctor told Jerk-Cousin and Evil-Niece she would likely die any time. In no time at all these evil creeps cleaned out the woman's accounts, her home, sold anything they did not want and then sold the house and car. The proceeds were distributed by Jerk-Cousin and Evil-Niece to their families. Well....Elderly Aunt recovered and was absolutely crushed to learn that she had nothing left but the anniversary ring on her finger. Jerk-Cousin and Evil-Niece claim an attorney told them to "spend it all" to avoid probate - that is absolute BULL-OOOOH-NEE! These two committed FELONIES; they abused this elderly Aunt at the most vulnerable point of her life. They are thieves. There is no way around it.

I feel so sorry for this Elderly Aunt, mainly because she is heart sick to loose all of the special sentimental things within her home and because a FAMILY MEMBER is responsible for this callous outrage. "Family" should be those people that we can trust to help us remain safe, loved and to live with dignity. A PoA should do the same - family or not! This scenario raises all kinds of issues and questions:
  • Elderly Aunt worked long and hard all her life and now faces a sparse existence during her final years. She might have been quite comfortable if someone who truly respected her acted as PoA and would work to ensure her comfort.
  • These creeps pressed her to sign when she was facing surgery and not thinking clearly. Why didn't she have a PoA before it was easy to take advantage?
  • Elderly Aunt must now rely on the paultry state stipend for personal needs like underwear and socks! After paying rent at a nursing home it's generally something like $50 per month, depending on the state of residence. This is terrible and just so unfair.
  • Does Elderly Aunt have grown kids? Where were they? Why didn't they step in to help?
  • Elderly Aunt might have a will that left things to family or charities. Did Jerk-niece and Evil-Cousin even consider this?
  • Elderly Aunt might have bills, debt or other commitments like tax liens that should be met before distribution of any assets. After Elderly Aunt's medical state, this should be the foremost concern of a PoA.
A Power of Attorney should not be taken lightly; these can be very powerful tools and give people a lot of control if not done properly. Before I write another word, I must include a disclaimer:
I am not an attorney. This blog is in no way intended to provide legal advice. You should consult an attorney in your local city or county if you have questions about granting a PoA or becoming a PoA.

Let's discuss PoA's and their purpose: PoAs are generally done so that one person can act on behalf of another. PoA's can be broad or specific. In my experience I've held both complete ( or durable) and limited PoAs. For instance, my husband went on a military deployment to the Persian Gulf and before he left we completed a PoA that gave me permission to make medical decisions on his behalf if he were incapacitated. This is called a Medical Power of Attorney and outlined his wishes for end of life care, life support and such. It was important to him that I be spared tough decisions in a poor emotional state. We also did a limited PoA for property management that enabled me to collect rents, pay property taxes, change utilities and such for rental properties that he owned. This limited PoA also listed the things that he did NOT want me to do such as the ability to sell or trade the property. The limited PoA also had an expiration date of 12 months from the date of his departure. We did not consult and attorney for either document but used templates we found on line and had them notarized at our credit union. Thankfully, I did not have to exercise the Medical Power of Attorney but I did use the Limited PoA to make changes to some insurance coverage and hook up some utilities. In those cases, both parties asked for copies of the notarized PoA and I was able to get things done with no issues.

For my Mom I hold a Durable Power of Attorney - within the State of Idaho - it's the most powerful PoA. She and my father completed these years ago, long before anyone would question their judgement at naming me their PoA. This PoA and means that I could invoke it to to do anything on their behalf at any time. They felt this was necessary because my father had a history of heart disease and my Mom's family had a history of alzheimers. ( Thankfully she has no symptoms of that ailment!) I could walk into their bank with my notarized copy and take all of their funds; I could sell their cars, clothes and property. However, I have used it rarely and only with their permission or after discussing things with them. I realize that I could cause serious problems for them so I take it quite seriously. It's my job to look out for Mom's best interests and I use her PoA ONLY for that purpose.

If you are considering naming a PoA, think about these things:
  • Identify someone who you are sure will act in your best interests, not theirs.
  • Identify someone who will work to do WHAT YOU WANT, if it's possible.
  • Identify someone who will work to ensure your physical and emotional well being and your dignity when making decisions for you.
  • Tell your PoA what you want done and put it in writing.
  • Ask him/her if they are willing to do it -often it means that someone will be mad at the PoA. S/he needs to be tough enough to handle it.
  • Complete a living will or medical PoA so the person doesn't have to make tough decisions about proloning your life or suffering with artificial means or needless - and often costly = medical treatments.
  • If you don't have a trustworthy family member, consider your attorney, a paralegal or contact your local Area Agency on Aging about volunteers who might do this on your behalf.
  • Selecting a PoA that lives nearby or someone who can readily reach you in emergency situation might be a good idea. If decisions must be made quickly, you want to avoid delays due to travel.
  • Remember that most PoA's end upon a death so having a will and naming an executor is important.
  • Before completing a PoA contact an attorney in your state of residence for their advice. Each state has specific laws concerning PoAs, living wills and such.
  • Understand if the PoA must live in the same state of your residence.
  • A credible PoA, and one that will hold up in court, should be notarized at the very least.
  • The laws that hold a PoA accountable for malfeasance differ from state to state so it's important to understand what you can do if a PoA is misused.
If someone asks you to be a PoA:
  • Take it seriously and do it ONLY if you are willing to make tough decisions for that person. It's not likely to happen but it's possible. I almost invoked my PoA to move my Mom and it would have been UGLY. I knew that going in and know that my parents asked me to be their PoA because I'm strong enough to do the hard things on their behalf.
  • Remember that you can be prosecuted for mis-management of funds, theft or fraud if the person's funds are not used to pay for their care and debts.
  • If someone asks for your assistance to "avoid probate" take them to an attorney. Don't wing it; it's way too complicated and differs from state to state.
  • If someone asks for your help to meet criteria for state aid (generally called medicaide) also see an attorney. Each state has a "look back" period, often 3, 5 or 7 years. Distribution of assets during that time can disqualify an Elder from receiving assistance for months and even years at a time.
  • Remember that being a PoA DOES NOT make you an "heir". You do not havce the right to inherit anything and it does not mean you will be the executor of their will or estate. PoA's usually end upon the death of the requestor.
  • Talk with the Elder or requestor to understand what they want and how they want to live out their years.
  • Be prepared to work with them a lot, you must talk things over if it's possible and get their inputs.
  • Be prepared to be tactful and unbiased and to do research on insurance, medicines, treatements - all kinds of things that come up.
  • Be prepared to help create solutions for the individual - they might need new walkers, subscriptions to magazines, goodies in their apartment; help interviewing and selecting home health care workers - a wide variety of things.
  • Seek out advise and help from social workers, pharmacists, doctors and local aging specialists.
  • If you can't devote the time to be a good, responsible PoA, don't do it. The Elder or requestor is asking for your devotion, assistance and concern - so don't do it if you can't give these without resentment or great inconvenience to yourself.
  • Be prepared to give out notarized copies of your PoA documents. I've had to provide them to Mom's bank, insurance company, doctor's office, Assisted living facility and to the local DMV to renew auto licenses.
If your parent or family member DOES NOT ask you to be their PoA, don't be insulted. They have their reasons. They may want an unbiased third party to reduce the risk of family in-fighting or claims of favoritism. If you ARE a PoA, be prepared to be the bad guy. You can hope it doesn't come to that but be warned: if more than one person is involved, someone is bound to be unhappy with something at some point. It's just human nature and humans being what they are - self-interested - is the reason a PoA is so important and can be vital to the safe, secure and dignified final years of an elder.

Saturday, October 17, 2009

Keeping warm with a dowagers hump

Like many elderly people, my mom is always cold. She always had cold hands and feet and wore extra socks and gloves to keep warm. Now, at 89, she has a new problem - a dowagers hump. She is quite bent over which makes finding clothes difficult. Lately, I've bought a couple of hooded fleece jackets that seem to help. Her stooped posture and the added "hump" mean that many of her shirts and blouses pull down on the neckline. This leaves a lot of room exposed and she feels cold on the back of her neck. The hoods give some extra fabric that she can pull forward to keep her neck warm. It's not the best solution but it's one of a few tricks we use to keep her comfortable.

Don't expect to get your gifts back...

A friend recently had a several falling out with her sister over a gift one had given their mother. The mother had this vase for years then when downsizing gave it to the other sister. The "giver" was upset because she always expected to get the vase back. I've discussed this situation with other friends and it seems to be an issue over and over, one family to the next. A child give something to a parent expecting to get it back 'someday' 'when Mom loves' or dies. Within my own family, my brother claims many of the things in my mothers home, and says "because I paid for it" - which may or may not be true. The rest of us have households with enough stuff, so if he wants it, he can have it. It's not worth arguing over.

My friend's situation above, however, resulted in hurt feelings, not necessarily anger. The giver was upset that her mother gave away "her" vase and upset with her sister for taking it when she knew the giver wanted it back. The giver felt betrayed by both her mother and her sister. What to do in cases like this is difficult. One must understand WHY mom gave the vase to the other sister. Did the sister ask for the vase? Did mom forget that the giver wanted it back? Did the giver clearly tell Mom that she wanted the vase back some day? In this case, I know the Mom and I'm sure she just forgot about the arrangement to return the vase but I could see where Mom could resent such an expectation. In the end, the sisters talked without involving Mom and sister two gave the vase to the giver. I could imagine, though, that this type of thing could escalate into one of those situations that triggers an argument, grudges and the breakdown of a relationship.

If it were me, I'd tell my daughter that if she wanted the vase, she should buy one for herself and I'd wonder why she gave it to me in the first place. It is obsurd to present a gift to someone and then expect it back. It's a GIFT not a LOAN. There are all kinds of complicated scenarios that could arise and each is just one more chance for hurt feelings, disappointment and confusion. It's best to just avoid that completely.

When we give a gift, we must live with the outcome of that action. Once the gift is presented, it becomes the property of the recipient and is theirs to do with as they please. I would hope that people could be genuinely open and act from a loving place. If you like and appreciate a gift, say so and use it with pleasure. If you are presented with a gift but it's the wrong size/color/texture/smell/style/etc. then gently speak up and let the giver exchange or return it. When it comes to your parents, don't complicate their lives, especially if they are elderly. Give them things that they will use and enjoy. Don't give them something because you want it for yourself at some point you just risk hurt and disappointment if it's broken or damaged, or also desired by a sibling.

Wednesday, October 7, 2009

A healthy old age - use denial and adjustments..

I find that there are two critical things old people need to deal with advanced age - denial and adjustments. I had this epiphany the other day as I tried to plant a couple of lilac bushes in our yard.

I grabbed one pot in each hand, took two steps, felt a pain in my left thumb and dropped one of the pots. It was like being stabbed in the left thumb; the outer most knuckle to be exact. I was shocked. I'd done this very thing many times before but now I could not. I'd had some stiffness in that thumb but have been working on a lot of jewelry so thought it was an under used muscle. Not so; today it is a swollen red hot knot. I managed to get the pots across the yard by carrying one close to my body and wrapping my left arm around it. I carried the other normally but the whole chore was changed due to one knuckle. As I dug the hole, filled in the dirt and watered the plant, I favored that stupid thumb. For each task I made minor adjustments so I could just get those plants in the ground.

I have to admit that I knew the knuckle was getting worse but I ignored it. To admit it hurt and was stiff would be admitting that my age is showing, that I'm slowing down. I'm only 47! How could I be slowing down? I'm not OLD!!!? I am, however, in denial and it's not such a bad place to be! Denial enables me to keep trying to do anything I want. Denial removes the fear that I might not be able to do something. I can also deny that it will take longer, that I might suffer stiffness or that I might need help.

My mother did so many things throughout her life - gardening, fishing, canning, typing, laundry, chopping, dicing, slicing - all a lot of fussy little tasks to grow our food, fix our meals, support our work and school lives. We never noticed the minor adjustments she made so she could do it easily and quickly. She just made minor adjustments so that she could continue to do it all as she grew older, slower and weaker. She never discussed it she just kept going like nothing was wrong. She was also in denial over these necessary changes.

Before moving, Mom was proud that she did all of her own laundry. Never mind that it took all day, that she used a special "grabber" to reach into the washer and dryer or that she had to store the soap in a waste basket on the floor. She was happy to sit directly in front of the dryer, pulling out each individual piece then folding each ever so slowly on the kitchen table. She never complained, she just kept at it until the laundry was done.

After my own experience, I found that denial is required to keep going as our bodies stop working as quickly and nimbly as we once were. Dwelling on it would only mean frustration and depression. Mom just kept doing things because she had to. So, I'll follow her example. I will deny that I have difficulties, I'll make adjustments so I can keep getting stuff done.

Thursday, September 24, 2009

Mom's birthday - another guilty day for me...

I spent all of September 23 feeling terribly guilty. It was Mom's 89th birthday and I could not be with her. I sent flowers, I sent a gift and my brothers and their families were with her but I still felt bad. I called Mom after her breakfast and she was really upset. She wanted to have breakfast and sit over coffee talking with FAMILY. She misses all of us; she misses my Dad; she misses her mother, her aunts and siblings. Unfortunately, those of us that are left just can't be with her everyday. We talked for more than an hour - well, she talked, I listened and tried to reply but she can't hear well on the phone. It just made her feel good to know that a family member was on the other end.

I have day dreams of having a home in her town where I could bring her for the day or an over night stay but that won't happen. I don't have the money for a second home or the luxury of living where ever I wish. I would do it if I could because I know how much it means to her. All I can do is call often and tell her when I'll visit next and then visit her every day when I am near by. I know there are many others out there in the same situation so I know that I'm in good company- good guilt ridden, well meaning company.

Friday, September 18, 2009

Get empathic FAST or you'll pay later....

Emapathy: the intellectual identification with or vicarious experiencing of the feelings, thoughts, or attitudes of another (Source:

The key words in the definition above are vicarious experiencing of feelings...of another. If you've not been able to do this before, you'd better learn it while you're helping your parent or other elders. If you don't, I truly believe that you'll get some come-upance when YOU'RE old.

Learning to be empathic is key to remaining patient with Mom and diligent about her care. Mom is sharp of mind but weak in body. Arthritis and osteoporosis has distorted her back, neck and knees. Though she is not in much pain she is weak and her joints just don't work. She can't grasp utensils or glasses very well; door knobs are difficult to turn. She can only walk 10 steps or so then must sit because her knees won't support her 100 pound frame. She can't stand at the bathroom counter to brush her teeth. She can't make a pot of coffee without assistance. All of these limitations mean that she is a like a prisoner in her own body with an active mind and memories of an active life. Like many elders, the thing she fears most is a fall and broken leg, ribs or hip. Often that is the end of our elders; they just don't survive the surgery required to repair the injury and ease their pain.

Remembering this and understanding her frustration, her fear of falling and her isolation makes it much easier to be patient and loving toward her. I might not be patient with others, I may grumble, cuss, chew someone out - but I don't do it to her. I do say things like "this frustrates me too", " I am sorry you can't move around more easily" and "yes, it's a pain in the neck but I'm happy to do it for you" - it seems to make her feel better; to reassure her that I WANT to help her. Often I list those things that she might be feeling - fear, frustration, loneliness, anger - and then I WANT to help her. The old saying "put yourself in someone else's shoes" truly does wonders.

Feel the frustration then let it go

I find myself cussing a lot these days - I cuss silently, I cuss out loud, I send curses to others. "Stupid bastards" has become my favorite thing to say. Mom frustrates me, others frustrate me. Dealing with elderly parents and anyone associated with your parent or their needs IS very frustrating. Mom can't hear me on the phone and I'm tired of yelling into a piece of plastic. Calls don't get returned; people transpose numbers on her insurance claims...etc., etc.... there are thousands of examples but what it boils down to is that others just don't have the same sense of urgency that I feel. They have other customers, patients, kids, jobs and all that to deal with so it means that they get to me - or my Mom - when it's possible and that's not always on my timeline. In my last post, I spoke about control and since this is not something I can control, I've had to learn a new strategy: I feel the frustration. I cuss. I complain out loud ( often only to myself ). I let myself feel the anger, the disappointment and I say "Damn, this is maddening, frustrating - I'm ticked OFF!" Then I'm able to let it go. This was hard at first and it takes practice; after 6 months I'm able to do it.

I can't pretend this stuff doesn't bother me. I can't pretend that everything is A-okay and smile sweetly. It's not okay; often I'm not okay and that's, well - OKAY. It's much easier for me to deal with all of this if I say that I'm frustrated or angry and let it be - let ME be - for a while. It's easier to cool off and then go back at it and do what I need to do.

Sunday, September 6, 2009

Don't expect to control absolutely EVERYTHING...

Control; it's a very simple two syllable word. However, for me it also raises some complex situations these days. I want control. My mom doesn't want to give up control. I can't control doctors or aides. I need control to safe guard her finances, her health, her physical safety, her emotional well being and to very simply get things done in a timely fashion. Going through this with Mom has helped me to apply the old prayer: Lord grant me the strength to change the things I can, the patience to live with the things I cannot and the wisdom to know the difference. The wisdom is truly the hardest of all.

I've learned to wisely "position things", to "discuss", to finagle, to... well, maniupulate Mom and others to get things done. I don't like to use the word "manipulate" but that's what all of this positioning, discussing and finagling means - I must use my best manipulative behaviors and it's hard for me to do. Normally, I hate manipulators and I'm vulnerable to such people. I feel like a hypocrit but in this case I must feel okay with it. Sometimes it is wise to manipulate if it's for an unselfish and positive outcome. I use these skills so that Mom feels in control of the decisions concerning her life. I try to ensure that she feels heard; that she has some input over what happens - that it's HER decision or preference.

It's wise to understand when I CANNOT control something. I can't control the doctor's schedule, the type of toilet paper the ALF uses; how the ALF does laundry' whether my brothers visit or not. I can only control what I do in these instances. I am forced to ask myself whether I can do something about such situations. If I can do something, I will. If I cannot , then I wisely, give myself permission not to act, not to try and control. if Mom makes comments or asks for something I can't do anything about I try to talk it over with her and let her know I empathize. I ask what she thinks; what she wants and try to work on those if possible. Giving myself permission not to act, not to have control is really freeing and much less stressful.

I realized discussing control here in my blog was important after having lunch with a friend last week. Her elderly and frail in-laws just moved from their home to an apartment near her family. The intent of the move was completely honorable and she and her husband are doing all they can for his parents - more than many people might do. But, my friend must realize - for her own sanity - that she can't control absolutely everything. My friend complained that she sent a list of requests to the doctor with her mother in law. The list included many details, requests for tests and information; when the elderly in-laws came home, only 2/3 of the list was completed. My friend was upset. "Now I'll have to spend hours on the phone making these requests and pusing to getting it all done." The things left undone where basics like cholesterol checks, fecal smears for colon cancer and drug interactions. I thought - 2/3 of it was DONE?! Wow, I'd be happy with that!

She was so upset that I didn't dare say anything at this point but did try to take the heat off her in-laws by pointing out that the doctor might not be able to do the tests due to insurance restrictions. In this case, she wanted a whole lot of control. She wanted to know all of this information and wanted it all done by the new physician as a baseline for their care. It's an honorable intent but not necessarily possible. In a day or so, I'll send a card and write the poem about change and mention a word or two about control. I hope she'll get my message that we can't control everything all the time and to try that will only make YOU feel worse. If you're trying to control too much or too many people, think about whether you CAN do something that will have a positive outcome. If not, let it go. Your parent needs you to be positive and healthy as much as your spouse, your own kids and as much you do for yourself.

My 3am worry sessions...

So here I am, again, 3am, wide awake, worrying and feeling frustrated. To stave off the inevitable heart burn that comes with these episodes, I'm sitting up on the couch in the dark listening to NPR on my laptop. This has become a weekly ritual for me over the past two years. It's not a pity party, I'm not feeling sorry for myself. When this happens my mind races with issues about Mom - or other things but mostly Mom or her business affairs - and I just can't sleep. I often wonder if it's my subconscious trying to solve problems that I don't have time for during my waking hours.

There are so many things distract me from helping my Mom - or put it correctly - I don't have time to do all the things I want to do for my Mom. Today, I'm thinking of things that aren't vital to her physical well being but are vital to her emotional well being: can she easily get to the sink to sit and brush her teeth daily? Is she getting help to her weekly hair appointments? What about a permanent before the holidays, a new phone with volume control, getting out of her room for a 2pm coffee date with a new acquaintance, getting to resident meetings to stimulate her.... and on and on.

I believe that the emotional aspect of her situation - her whole life really - is equally important and most often overlooked in cases like hers. The staff at her ALF just don't have the time to work with her individually, it's no different from me. I don't have the time either and I feel terrible guilt because I don't. It would be a full time job, like being a stay at home mom with a toddler; I'd be a stay at home daughter.

When it comes to our parents I believe that most of us are all still narcissist kids and we just can't wrap our heads around the change in our roles. I don't mean narcissist in the most self-centered negative sense. I mean that we are looking out for our selves; trying to keep our own heads above water with jobs, kids, our own households to tend. There's just so much to do that we tend not to see how much help our parents really need. Once you're able to do that the role reversal from child to parent-of-parent seems complete. After decades of expecting them to consider our emotional state and help teach us how to handle our own needs, we have to put that training to work and turn the tables to help them. We have to turn our attention away from ourselves (and our kids if we'd had them) to our parents.

At this moment, I feel better. This blog is a quick distraction but Mom's needs remain so for now I'll do what I can at 3am. I'll search the internet for a new phone, I'll email my sistern in law about getting Mom to a hair appointment. I'll add some things to my to do list and keep plugging away. It's what my Mom would do if she were awake at 3am and worried about her own mother.

Thursday, September 3, 2009

Patience is THE most important word...

The past two years have forced me to become much more patient. I am ashamed to admit that it seems my patience with my mother was much shorter than with anyone else but I’m getting better with each visit. We’ve talked about it often and Mom – lovingly and patiently – says “Yes, I know. I was the same way with my own mother. We don’t want to break out of that parent-child role. We want our mothers to always be strong and have the answers. It makes the reversal of roles very hard.”

When dealing with our elders patience is key and the reason is simple – they are slow. They can't move fast due to arthritis and brittle bones. They walk slow, talk slow, move slow. They think more slowly so their ability to reason is slower. They can’t hear or see as well so it takes longer to read, to understand, to put all the details together to understand a situation or to make a decision. They even push buttons on the TV remote more slowly. It’s frustrating but they have no other option unless they just want to stop living altogether. The ONLY choice we have is patience. I hope I can see things with compassion so that I don’t have to force myself to be patient. I want to be understanding and just be thankful that Mom’s still able to do some things at all no matter how fast she does them.

Wednesday, August 26, 2009

Nurse error nearly cancels Mom's physical therapy

A few days ago I caught a nurse in an error that could have cost Mom a chance at some physical therapy. She really needs some regular PT to keep her as limber as possible and it's also some diverse activities to keep her mind active.

Here's the scenario:

  • Mom's doctor calls the ALF to order some physical therapy but the nurse tells them that the Physical Therapist (PT) won't return because Mom refused it last time.
  • Doctor's office calls me to get Mom to agree to do the PT and tells me she refused it. I tell the Doc's office Mom did NOT refuse it that she was discharged because they could not make any headway since her knee was so bad.
  • NOTE: The doctor was about to cancel his PT order until he heard from me that the ALF was mistaken.
  • So, I call the LPN at the ALF and ask her to check Mom's records. She INSISTS that Mom refused more PT. I had to press her to look in the files and she saw that Mom refused one day because she was ill but that she was discharged from by the PT.
  • The LPN then called the doctor's office to confirm that Mom HAD NOT refused PT so it was ordered and she began this week.

This scenario really got me worked up. This nurses ASSUMPTION based on something she was TOLD nearly cost Mom a chance for some needed physical therapy. The nurse would not have checked unless she had been pressed by ME. The PT is necessary to strengthen her muscles and keep her as limber as possible. It's necessary to keep her mobile under her own power even though that's limited.

What about those residents who don't have pushy family members? What about those who don't have doctors willing to call daughters to get another perspective? I realize that the ALF has budgets to worry about; I realize they are short handed and everyone does more than their share of hard work but..... My concern must be my MOM not their work load. If they can't handle it, they need to hire more people.

2 weeks in town and I'm tired and angry with the ALF...

For the past two weeks I've been in Idaho visiting my Mom and family. I always make a long to do list before I arrive but then something always happens to blow my plans and schedule totally out of the water. It always seems that I spend the last day or two cramming a couple of days worth of work into a few hours. That's one thing that all my friends mention as well - they never get enough done while they're visiting their parents. Whether it's for work or pleasure, they all want to do much more than time, energy and money permit. I like to think it's because we're such good people, we WANT to do too much.

I feel as though I'm doing a half-assed job of everything - visits with Mom, cooking for my husband and I, exercise for myself, visits with family or friends, my job search, my blog.... I don't seem to be able to do anything well... One thing is certain, Mom seems happier when I'm there and I'm rallying the care givers at her assisted living facility to pay her more attention and be more cautious.

This week the administrator asked to speak with me and she outlined what she did to address the 8 or 9 items I brought up to her two weeks ago. She was kind and understanding even when I added a couple of things to the list. I'm really irritated that I feel it's necessary to add to my list of concerns about this ALF! I feel like I must be on guard all the time. That's what we PAY THEM to do but... ... they can't train on common sense I guess. So, I'll just keep raising concerns and getting them addressed.

My latest concerns are these - these seem so very basic to me and I'm really frustrated that I'm forced to complain about something so basic:
  • Make the bed properly: Mom's bed is not placed properly after it's made. Often the top mattress sticks a foot out from the bottom box spring. If she were to fall against it, there would be no support there and she'd hit the floor. Sometimes the box spring and frame protrude out past the top mattress but the frame is hidden by the large comforter. I stubbed my own toes on the frame and cried because it hurt so very bad. If mom had done that with her osteoporosis, she might have broken a foot.
  • Move the commode then empty it: Six times now I've found that her bedside commode was not emptied. The commode is placed near her bed during the night and moved to the bathroom during the day. This is a tactic to keep her moving by getting her to walk to the bathroom. Visiting in the afternoon or early evening, her room reaked of urine so I checked the commode; it was properly moved to the bathroom but it was full, very full. To me it appeared not to have been emptied for a couple of days, not just one day. The first four times (I should've complained after the 2nd but I'm too patient) I noticed this full commode, I emptied it and told an aide what I did because I knew that they were busy. The fifth time, I was mad and told them I was mad. The sixth time, I hit the roof then told the administrator that it was unacceptable to pay more than $3000 a month for Mom to smell piss!!!!!! It seems to happen more on Fri, Sat, Sun and Mon - it makes me wonder if they are short handed for the weekend. Anyway - I'll ask my brother and sis in law to stop by now and then to check on it. When it happens I'll just call the Nursing director or the administrator.
  • Nurses fail to check details on Mom's care: There have been a couple of incidents where the LPNs or RN tell me something - generally negative - about Mom so I press for details. When they look in her file they can't find any information and tell me that they've confused her with another resident. This REALLY concerns me because it means that doctor or his nurse could get incorrect information when they call. Please see the blog entry Nurse error nearly cancels Mom physical therapy.

So - for now I'll continue to stand guard so to speak. I'll return to our home in Indiana soon and hope that Mom will be fine until I can return in November.

Wednesday, August 12, 2009

Mom's address book is a poignant tale

I found a sad and poignant reminder of the entirely of Mom's life the other day. I was helping her put together some clippings and a letter to her uncle when I opened her address book and something struck me as odd. Many of the names were crossed out with a single stroke, in many cases all the entries on entire pages were marked. Each stroke was deliberate and just the same. Mom began at the lower left corner of each entry and quickly drew a slash up and to the right over the city, over the middle of the address and the last part of the name. Reading the names, I realized they were friends or family that had passed away.

I asked if she had done it all at once or as people passed away. "All at once about three years ago. I update it when I learn that another one has died." I could picture her, looking for an address then realizing that there were more dead listed an alive. This list was of the people most important to her - aunts, uncles, distant cousins, friends from the years of church service, PTA, boy and girl scouts, politicians who helped with a tax battle, democrats and neighbors who moved away.

Her entries were always tidy and in ink. Early on each letter is clear; each digit carefully spaced for readiability. As she added new entries for grand kids, medicare, supplemental insurance, doctors and such, her writing became a little more slanted. Often the letters hovered above the straight lines or crowded another. For the most recent entries, I found an extra consonant in names or cities and states but the names were fine. The precision wasn't as important to her anymore as the recording of the information. Details are all there but her presentation is no longer tidy. It's like her hair, white, wiry and harder to control but still there making a white glow around her little head.

Meeting with ALF Administrator shows some quick results.

Five days ago I met with the ALF administrator and outlined my concerns in detail; already I see an improvement in Mom's care plans. I began my discussion by telling the Administrator that the request of Mom's physician to move Mom was forcing me to talk with her. The Administrator responded very positively to me. Over all, she claimed that more training was required for all the aides. I agreed but also said that the shear number of residents required MORE aides. At some point it becomes a matter of safety.

I tried to be tactful, to site specific examples, names and dates. This approach was well received. She took the complaints about the food in stride and said most residents complain about it because it's one of the few things that people feel they can control. Food likes and dislikes are also quite different across people so each person is bound to have some complaints at some point.

The personnel matters I described were another matter completely. As a project manager, the behavior I saw on the part of the LPNs and RN indicate that there is an antagonistic relationship building and that the LPNs have no desire to work as part of a team. It's a hard thing to tell someone - that their direct reports are manipulative shirkers - and that I believe it stems primarily from having TOO MUCH WORK TO DO. Two LPNs to coordinate meds and doctors orders and one RN to over see treatment is just TOO few staff to safetly monitor 170 to 180 people. Some time, someone, some where will fall through the cracks. I just hope that the victim does not suffer needlessly. Until we can move our Mom, we need a strategy to ensure Mom receives quality care.

I, my brother, his wife and daughter realize that we must ensure that Mom doesn't fall through the cracks. We hope to plan our schedules so that at least one of us visits daily for the next couple of months. By then we hope a single room opens at the smaller assisted living residence. I hope this new approach will suit her physician and give him some confidence that Mom is getting good care.

Wednesday, August 5, 2009

Mom doesn't like ALF alternative - now what to do?

I took Mom to visit a small assisted living facility and she didn't like it. I believe she could be persuaded to move to the small facility IF she could have her own room. This ALF is the second of two recommended by her doctor; I ruled out the first after meeting the owner/manager's dog.

At the smaller ALF the only room available now is a shared room with an odd bathroom setup and Mom feared that she might fall. It's a valid concern and I don't want to push it. We are on a waiting list for an individual room so we'll just wait. I don't want to tell Mom's doctor, I fear he will be angry and expect me to force Mom to move into a shared room. He forgets that Mom is still cognizant enough that she should have input into her living situation.

Before I go into details I must admit to feeling very foolish at this point. I researched ALFs in Mom's town. I visited, unannounced, on more than one occasion. I snooped around; I talked with residents. I talked with others who've parents were in the same ALF. I did not decide on this ALF without great thought and investigation. Now I am regretting my decision and fear for Mom's long term safety and condition at this ALF.

Mom says that she's finally feeling at home in the ALF; she's become acquainted with people and enjoys her table mates. Honestly, I am surprised she said no to the move. Mom complains about something everyday - the quality of the food, the room, the lack of a view, the slow response of the aides; the laundry, the long corridors, the lack of good "company"..... on and on.. So- I will meet with the administrator and discuss my concerns along with the doctors recommendation that she move to a smaller facility. I hope I will get some positive results.

Mom's complaints are valid but my concerns are broader. On Monday afternoon I visited and the fire alarm went off. I was in the hall outside Mom's room and asked two aides - the ONLY aides for her floor of 70+ residents - what I should do. They said "we don't know, we have not been trained on that yet..." I was dumb founded. That event is the last straw, I MUST discuss my concerns with the Administrator. Other things I will brings up include:
  • Relationship between the RN as medical coordinator with the LPNs who handle records and coordinate prescriptions. The RN is new to the job and the LPNs seem to want to make her look bad.
  • Failure to empty her commode before lunch time. This has happened on four occassions and I'm disgusted by it. It can smell and I don't want Mom's room to reak.
  • Failure to help other residents. More than one lady is incontinent and during long visits I see them ( and smell them) wandering around. They are pleasant enough but as they walk past I can see that they have wet spots; their depends are full and should be changed. The aides just stroll by; no one takes them to their room to clean them up. They let them wander around reaking - it's disgusting and makes me wonder how they might neglect my mom!
  • The attitude of the LPNs toward residents who are sick; they are very abrupt with residents and make everyone feel like they are a pain in the neck.
  • I believe that one of the day LPNs lied to me. Normally I get a call when Mom falls. She fell last week and they told me that they can't get through to my cell phone. However, the night aides manage to call me when Mom falls. The night aides have called me four times; the day time LPNs won't return my calls.
  • There is no way to leave messages for a nurse or LPN; they have no voice mail and no one takes messages. When I've called I've been told to call back and when I do, no one is available. This is the same problem Mom's doctor described.
  • The food REALLY concerns me. For supper one evening Mom got half a sandwich, three pieces of lettuce smeared with oil and about 1/4 cup of fruit cocktail. I feed my cats better than THAT! Supper is supposed to be "light" with their lunch or dinner being the biggest meal of the day. I'll be watching for those dinners to see how big they are.
  • Overall lack of common sense among the aids. Here's an example: I go to Mom's room and find her trying to spread a shirt across her torso; her room is freezing and the AC is going full blast. She is like an iceburg. The aid said she was cold and asked for an extra shirt. Obviously it didn't occur to him to turn down the AC (ah duh??!!) or get Mom a small afghan that is on a shelf immediately above the shirt he pulled from the closet. I had to take her outside in the warm evening air and put her bare feet on the warm concrete to warm her up.
So - these are the things I'll discuss with the administrator. She is a sweet lady but I just don't know if she can be hard nosed enough to get these people in line. Many are kind and I think their intent is good but at some point it becomes just a job and they put in as little effort as possible. She likes to believe they have one big happy family but my family is fearful that theirs will not be good for our Momma!

Monday, August 3, 2009

Doctor limits new ALF choices causing problems for me

After a week Mom's doctor finally called me to discuss her situation. He feels that her needs mean she is on the high end for assisted living but not ready for a nursing home. He recommended two small in-home assisted living facilities. I visited both and believe Mom will hate them both.

The first was brand new, open, beautiful, the ladies warm and friendly but the owner/manager/main care giver has a small dog that jumped on me, growled on me and she didn't seem to care! The owner/manager/care giver is also a very small woman and she's there alone most of the day. I fear that she cannot physically provide the help Mom needs. I worry that mom's too far gone to live in this ALF. I can only imagine how mom would feel about the dog. She has never liked animals in the house and given her vision problems a small animal walking near her feet would make her fearful of falling over it. The growling is a completely different matter. The owner said the dog "likes to talk to people"... It growled at me, in doggie speak that is a hostile action and it should not be tolerated around elderly residents. The other disadvantage of this ALF is that they do not accept medicaide.

The second home was smaller, felt warm but the room available is shared with a failing 92 year old. Mom would hate that and it has a nursing home feel. They are more flexible especially with meal times which Mom would appreciate. She could sleep and eat on her prefered schedule not the ALF schedule. This place is also willing to accept medicaide so Mom can stay put if we can't sell her place.

SO - today, I'm doing another dreaded and stressful task - taking Mom for another visit. My brother and I spoke to Mom about moving during a Saturday evening family supper. She said she does not want to move; that she finally feels like she's getting acquainted and visiting with others. She's met a few people who are long-time acquaintances but several of those meetings were possible ONLY because I visited and took her to the large living room and outside where others gather. Normally she will not ask someone to take her there or attempt to go on her own. I will take her to the facility without the dog. If she does not like it, I'll take her to the one WITH the dog and see what happens.

I must say that I feel stymied at each turn; I feel it's a no win situation. Our options for facilities seem so limited; that's due to several factors - Mom's condition, her stubborness, her doctors preferences and opinions, the rules and conditions of each ALF and her possible need for medicaide. Ugh.

Tuesday, July 28, 2009

Doctor unhappy with ALF and I agree

My niece and sister-in-law visited the Doctor's office with my mother last week. His news was a shock: he feels that mom is not getting the individual assistance she needs at her ALF and he wants us to move her someplace smaller. I think I agree but hate the idea of going through it all again. I am concerned about Mom's state since she is getting regular healthy meals and her meds on time each day - which didn't happen at home. Why - after 3 months - has her condition deteriorated so much? She's lost more strength in the past 3 months than she had the prior year!

Before I go into much detail I must say that her doctor is great. He's been her physicial for 30+ years and is very thorough. I trust him and his judgement; he's kept Mom well and knows what he is doing. He has numerous small examples that amount to a very large issue for me - the ALF is not communicating, not with him and not with the family. Apparently he's made numerous times at various times trying to reach a nurse. He's been told that no nurse is available to discuss Mom's meds or condition. He's faxed her meds to them and received no confirmation. He's left messages but has not heard back from them after trying to reach them for three weeks.

I am also concerned and plan to raise hell. I've had a hard time getting mom on the phone - I call, she doesn't answer. I believe she can't hear it ringing. I hoped that she was out doing something but, it's not that good I fear. I came to town last night after being away for 6 weeks and found Mom asleep in her chair. During my visit, I learned from an aid that Mom had 6 falls in the week before my visit. SIX!!! I got a voice mail about one fall two days ago but not the other 5!

When I arrived I found Mom asleep in her chair at 130pm in the afternoon. We woke her up and she seemed groggy and very weak- much weaker than she was when I left 6 weeks ago. There is only one thing that it drastically different than her conditions at home - she is getting her medications on a regular basis. I fear that one of them is causing problems - plaquenil. Before moving into the ALF, Mom had used only one full, 30-day, plaquenil prescription during the prior 12 months. I was concerned that her arthritis was getting worse because she failed to take the plaquenil now I am worried that it's causing her decline! Possible side effects are:
  • hearing loss - Mom's has worsened in the past 3 months
  • muscle weakness - she is definitely weaker in spite of physical therapy
  • ringing in the ears - Mom's complained of this for 3 months
I hope that it's as simple as this because I want what ever time Mom has left to be good and her state is not good right now. She's totally dependent on others and I know she'd hate that. It makes me feel all the more guilty for moving her.