Wednesday, December 29, 2010

CAUTION: Sores that won't heal may be skin cancer!!!

I've had several family members with skin cancer and can share several stories to drive home the need for regular skin cancer screening but a recent event does a much better job.  I hope that the following story will prod anyone to get a check up ASAP for themselves or their loved ones.  The short story:  a friend's mom had a Moh's procedure to remove all the skin on the side of her nose.  For 2 years, she asked her doctor about a sore spot  and he told her it was due to sensitive skin.  He was clueless and it cost her a lot in medical procedures, pain and suffering - especially the pain and suffering. 

The long version: A friend called in a panic just before Christmas - her Mom had skin cancer on the side of her nose and they had to operate immediately.   She was especially upset because she'd asked her mother's doctor about the sore for more than 2 years.   She finally moved her mom to another state and took her for a check up.  Before her Mother sat down in the doctors office, he asked about the sore on her nose and sent her down the hall to a dermotologist.  She was in surgery within a couple of days.  It was a severe basil cell melanoma and had nearly spread to the skin around her eye.  

The surgery and subsequent reconstruction were gruesome and hard on her 84 year old body.  After all the the skin was removed from the side of her nose, ( Did you HEAR ME???!!!ALL THE SKIN!! from the side of her nose *OH MY GAWD!!)) she had to have a flap of skin grafted from her forehead to her nose.  The bad part is that the flap had to remain partially attached to the forehead AND stitched to the nose. It remained this way - an open bloody wound -  for 3 weeks.  The flap permits blood to flow to the tissue to keep it alive while the graft grows into the skin surrounding the surgical wound.  Eventually the grafted skin will get enough blood supply from the skin around the nose so the flap can be removed.   

This was hard on her Mom, it was hard to make her understand why it was necessary and what happened to her.  She's a sweet kind woman and has become quite forgetful so it was hard for her to process it all.   The really sad part is that it could have been avoided, literally, years before if her doctor had taken it seriously.  All the doctor had to do was refer her to a dermotologist. Why he didn't is a mystery but he deserves to be charged with malpractice.   My friend is in the process of filing complaints in 2 states where he sees patients - Washington and Idaho.  

This sort of skin cancer is NOT reserved for the elderly and years of sun exposure.  My own nephew, age 27, had the same surgery two years ago.  He had a recurring pimple on the side of his nose and he let it go a long time before seeing a dermotologist.  Because it was "just a pimple", he thought he'd get a prescription for a topical antibiotic or a chemical peel, he had no idea it was skin cancer.   The sore would erupt like a pimple then get red, bleed a bit and heal up.  This sort of cancer was new to all of us in the family.  We knew to look for dark spots that were not symmetrical.  We new to suspect anything that grew in size or had various colors - we didn't know to look for a wound like a cold sore.  Since his original Moh's procedure - removal of a whole nostril, a skin flap and reconstructive adjustments to the skin - he's had two smaller spots removed.  These were caught in time but he'll have to be vigilant - and watch the skin all over his body - for the rest of his life.

So - the bottom line is simple - CATCH IT WHEN IT'S SMALL  - the treatment is simple and relatively painless.  Wait, and you'll have to suffer a gruesome surgery and reconstruction - or it might cost your life.  

Here's a link that should scare you into a visit to the doctor early on:  CAUTION:  This site contains VERY GRAPHIC IMAGES that may disturb you.  It shows patients after surgery for skin cancer and before reconstructive surgery.    Some of these are really, really, gruesome and nearly made me sick but if it gets you to the doctor - then I did my job:

I have a cold sore that won't heal, what is it?  Grandma has a sore that won't heal. Grandpa has a sore that won't heal.  Do I have cancer sore soar that won't heal.

Tuesday, December 28, 2010

Finding Mom in the dark makes me SEE RED!!!!

My good mood over having Mom home on Christmas Eve disappeared quickly when I went to see her Christmas Day.   I found her sitting in her room in the DARK!  She was trapped, sitting in her wheel chair with nothing to do and no way to get out of the room.  Her call button was no where to be found - I found it wedged under her pillow and completely out of her reach. Her roommate was asleep and her wheelchair was between Mom and the door, Mom's TV (which is on a swinging arm) was above her head, off and out of her reach.  The lights were off - switches also out of her reach - and there was a table wedged between her and her dresser which holds her reading materials and pens.   She was just sitting there in the dark like some blanket they laid down on a table top. 

I was so mad - and so hurt for her.   There is no excuse for this - I told the aides who were circled around the nurses station how I found her and they said "she can call for help".  They didn't want to believe where I found the call button and that it was out of her reach.  They are so freaking clueless!!!! They all looked young and I'd never seen any of them before - a new crew, probably the newest hires since they were working Christmas Day.  It should not matter.  I expect an experienced nurse or aid on duty to prevent this kind of crap.   They might have thought she was asleep but they should have put her in bed or her easy chair NOT left her sitting in the wheel chair.

So - before leaving town I wrote a letter to the administrator and left it in her office.   She's had 2 days to read it and I've not heard a thing.   (She dislikes me already because I - justifiably - complained about the size of Mom's wheelchair and a worn out pad that meant she slipped forward and fell out of it. )  Tomorrow I'll call the social services office and see what they have to say.    If it happens again, I'm called a friend who works for the state department of medicaide and ask for an inspection.  If they're slipping up on basic things, then larger more severe problems are probably hidding in there too!!

Oh how I wish I could win the lottery so I could hire some help and take her home!!!  If I could, I'd buy a big house and invite a couple of her friends to live with her.  They could all have such a good quality of life with the right care givers and the right layout in a home.  They could sleep in or stay up late if they wished.  They could be active - they could do things they enjoy and only do as much as they could with help and continue to feel like they have something to offer.   UGH!! These nursing homes are just too large, they are run by huge for-profit companies that don't care about their residents.   It's immoral.  it's down right immoral!!

Saturday, December 18, 2010

What do I get Grandma for Christmas?

Buying gifts for elderly people is tough - they have health conditions that limit what we can give them.   They might want goodies but we should use caution given the rise in diabetes.    This year I'm giving Mom a lighted magnifying glass, some thick fleece socks to keep her feet toasty and a new hooded sweatshirt.    I'm also having her old watch reconditioned so she can wear it daily. No only is it useful, it's some thing very familiar that she had for years.  I hope it will provide her with some comfort.

I've surveyed some friends to find what they're doing for their parents and grand parents.  I hope you'll find some useful ideas here:
  • sets of blank cards,  "fat" pens and stamps so they can keep in touch with friends and family
  • a new address book - then help them transfer the names and addresses
  • photo albums with old and new photos - consider pictures of grand kids on the left page then a photo of  the same grand child as an adult or with their family.   This can help jog their memories too
  • Calendars with family photos.  You can easily up load photos to several services (Walmart, Kodak, Windows) layout the calendar and have it mailed to them.  It  takes all of 30-45 minutes!!  Thank Gawd for technology!!
  • Photos of them with friends and family - my Mom loves her photos with her and her great granddaughter
  • Calendars with their favorite flowers
  • If your elder is in a nursing home they;d probably appreciate anything that replicates the things they had at home - family photos, photos of pets or flowers.
  • People in nursing homes also need practical things:  lotion, socks, sweaters, undershirts, slippers, tissues to clean glasses, pens and paper, fanny packs or other bags that can easily strap on to walkers or wheel chairs
If you're still stumped call the nursing home and ask the social services or activities director if they have suggestions.   

what can I get my grandma grandpa for Christmas?  Grandma is in a nursing home what can i get for her.  gifts for nursing home residents. gifts for the elderly .

Sharing Christmas with Mom - what she really wants is time - my time now and her old times too..

The older Mom gets the harder it is to find meaningful gifts for her.  She is very content with so little and I usually buy things as I realize she needs them - new sweat pants, a hoodie, socks, etc.... I'm always stumped at Christmas time - it doesn't help that she insists she needs NOTHING and won't give me any ideas.  I did pick up on a couple of little things that might make her happy - her old large faced watch from home and a magnifying glass.   She always says she can't find the wall clocks throughout the nursing home and complains that reading the paper hurts her eyes. ( I am beginning to wonder if her vision is failing but that's another blog post...)

So - I found her old watch at home and I'll have it cleaned and the band repaired for her.   I'll give it to her at Christmas so she'll know the time.  I also found a light weight magnifying glass with a light.  I think it will help her read the paper and anything else she can find.   When I found it and realized how much it would help her, I bought 4.  I'll leave the extra three with the social services or activities office so that they can give them to the residents who need them most.  

The other thing I'll give Mom this Christmas is time at home.  We'll arrive in my home town on the 23rd and I'll go to get her the 24th.  We can cook together and then we'll sit down to eat together for Christmas Eve.   I hope she'll feel up to attending church that evening but we'll see.   The next day - we'll do it all again but we'll be at my nephews home. These plans mean a lot of work for us - we have to lift her in and out of the car, to the bathroom and wheel her around but we gladly do it all.    When I think of how she feels living away from home, I WANT to make her happy even though it's only for a few hours at a time.   I want to give her some normalcy - I want her to feel the way it was years ago when she cooked for a houseful of people and we all sat down together to eat and drink  and talk loud.   I miss those times too so if we can re-create them for a day or two, then all the lifting and wheeling is well worth it.

Saturday, November 27, 2010

Finding gratitude on the roof over Thanksgiving weekend..

This holiday Thanksgiving Holiday is a rough one for me. For the past couple of months, I've been really, really stressed out and finding something positive in each day has been tough.   It seems that anything I attempt is the wrong thing or gets way-layed by something totally out of my control.  Even my Thanksgiving plans were up-ended by snow and bad weather.  I planned to drive 6.5 hours from my home to take my mother to her little house for a meal on Thanksgiving afternoon.  The roads were so icy that the drive took more like 9 hours and it was so very cold that it was not wise for me or anyone else to take Mom out in the wind.  I felt terrible that she'd probably sit in the nursing home with no family on Thanksgiving Day. Now comes the gratitude part...

After realizing that I would not make it to see Mom until late evening, my sister in law and nephew went to join her for lunch.  It was a huge meal with all the Thanksgiving trimmings.  They had a good visit and left Mom with candies, decorations and lots of love and hugs.  I was so relieved she had visitors and that she felt loved and remembered.  Throughout my drive my 2nd other brother called every hour to check on me, it was nice to know someone was concerned about my safety and had a warm house and food waiting for when I got there.

Finally getting home to Mom's I got bad news from the 2nd brother (he lives in Mom's house and pays the bills, which is also something I found to appreciate), the roof had leaked in a couple of places.  A wind storm a week before blew off so many shingles that water seeped through and had stained the ceiling.  Given the cold and wet forecast, a new roof can't be done until after the new year which means more leaks and damage and long term problems.   When my eldest brother learned this, he suggested that we patch the roof until it's able to be replaced.  I was worried because this brother is nearly 70 and known for his wild ideas that don't quite work out too well, if they get completed at all.   But, I had no choice so we made a plan on Thursday night.  On Friday we made a quick trip to Home Depot for some basic supplies - black tar paper in rolls, 2x4's and lots of nails.   We grabbed a spare nephew and the three of us spent 4 hours on the roof, unrolling, over lapping and nailing and nailing this black felt paper.  It was warm enough when we started but the longer we worked the colder it got.  Icy snow blew into our faces and it was hard to hold the nails and hammer but we got it done.  2nd brother stayed on the ground and handed up things we needed - more nails, another roll of tar paper. 

Half way through I realized I was actually ENJOYING myself.  We were teasing each other, working together and laughing out loud WITH each other.   In doing something WITH someone else and FOR someone else's benefit, I'd forgotten my stress.  I felt thankful for family that would pitch in to help like that in frigid weather.  I felt good to be doing some physical work and happy that I hit the nail head nearly every time - no smashed thumbs at all!! 

It helped me to look at all the positive things over the past couple of days - I had a safe drive home when many other drivers ended up stuck in the ditch; my family pitched in to help mom when I couldn't get there, my family pitched in to make her house (and where my brother lives) weather proof and we found something to laugh about.  I found my Thanksgiving on the roof in the cold, cold wind!

Thursday, November 11, 2010

Kids gloves make Mom's wheels feel better...

Since Mom's been using a wheelchair she complains that her hands hurt from using the wheels to guide herself around.  Her hands are also dry and her skin is smooth, it's actually "slick" and hard to hold the wheels on the chair.   She's asked for "kid" leather driving gloves over and over but I'm hard pressed to find those.  She remembers them from the 40's and 50's when she still drove.

I finally found the remedy in the Christmas department of my local Fred Meyer store - grey knit gloves with rubber gripping "snowflakes on them.   The snow flakes are supposed to be decorations on the back of the gloves but putting them on the palms made all the sense for my mom.   Now she has something that protects her hands AND helps her grip the wheels much better.   I had to make one alteration.  I cut the fingers off so she can still feel things easily and hold her pends for her crossword puzzle.

What can I use to help mom's grip on her wheel chair.

Friday, October 8, 2010

Veterans benefits may be available

I was surprised to learn that there are veterans benefits available to provide for disabled veterans OR their spouses.   Called the Aid and Attendance Pension, it's intended to help vets and their families when they are unable to care for themselves. 

Here's the text from the VA web site.  To see more follow this link:


The Aid and Attendance (A&A) Pension provides benefits for veterans and surviving spouses who require the regular attendance of another person to assist in eating, bathing, dressing and undressing or taking care of the needs of nature. It also includes individuals who are blind or a patient in a nursing home because of mental or physical incapacity. Assisted care in an assisting living facility also qualifies.
To qualify for A&A it needs to be established by your physician that you require daily assistance by others to dress, undress, bathing, cooking, eating, taking on or off of prosthetics, leave home etc. You DO NOT have to require assistance with all of these. There simply needs to be adequate medical evidence that you cannot function completely on your own.
The A&A Pension can provide up to $1,632 per month to a veteran, $1,055 per month to a surviving spouse, or $1,949 per month to a couple*.
Eligibility must be proven by filing the proper Veterans Application for Pension or Compensation. (Form 21-534 surviving spouse) (Form 21-526 Veteran.) This application will require a copy of DD-214 (see below for more information) or separation papers, Medical Evaluation from a physician, current medical issues, net worth limitations, and net income, along with out-of-pocket Medical Expenses.

Can my Mom get veterans benefits for my dad's service?  How can we get veterans benefits for my dad?

Thursday, October 7, 2010

Tough moment with a tough old gal at Mom's nursing home

I had a rough visit at mom's nursing home a couple of days ago.   Walking down the hall, a relatively new resident reached out to me and asked for my help.  She had lived at Mom's assisted living facility and I remember meeting her there; Irene was her name.  She was relatively lucid then so I took her hand and asked what she needed.  She began to cry and said she had to get home.  "Oh no.!" I thought to my self..." here we do I get out of this?"  All I wanted to do was run away but that would be cruel.   She gave me a whole run down - her kids put here there;  her daughter in law is lieing and manipulative, rented out her home to her grandson; she could walk at home but they force her to stay in the wheelchair now.  She asked me to make calls for her, first her son in Vancouver, BC then her minister.   When I tried to move away from her she grabbed me again, "Won't you be my friend!?  Please don't leave me alone here. I don't know anyone!!."  More crying but I noticed no tears even though she dramatically dabbed at her eyes. 

I knelt down beside her to ask about her life - where she lived, what she did and who her kids where.   I was surprised at the change since I'd seen her last in February.  Her legs were now so swollen they were four times their normal size, her eyes were dull and didn't seem to follow me well.  In February she didn't look or act her 97 years -  perhaps 75 - but she sure looked it now.   I felt so bad for her.  I'm sure her fears and emotions were absolutely real.  Dementia is so damned cruel to leave her like this, in this child-like state, feeling abandoned, afraid and isolated.    Even though she's not my relative it made me feel bad that I felt even more guilt that my Mom lives there. I used to think that my mom's situation would be easier if she were more forgetful but at least she can understand that she has visitors, family who love her and friends who stay in touch.  And, she has made new friends and enjoys joking with the aides and staff.   Irene, can't do that. She forgets who they are; she remembers her kids as young people not the aging adults who manage her affairs. She can't understand the physical conditions that make her legs and feet swell.  I feel even more concern for my mother and fear that she'll reach the same state as Irene.  That will be so difficult to watch her suffer or if she didn't recognize me any more... OUCH!   I must keep in mind that, though it will be hard on me it's worse for her. 

Thursday, September 23, 2010

Mom's party is a hit; old friends made her feel remembered and loved

As I planned Mom's birthday party I really worried that there was no one left to come but I was wrong.  I'm SO GRATEFUL that I was wrong!!!   We held it at her church so a few of those people attended, then a couple of her cousins came from out of town and some old neighbors just happened to be in town on the same weekend.  After the cake and ice cream we all went to her house for a family meal.  More neighbors came from down the street and made it a special evening. 

Mom was thrilled to see them all.  I felt bad that it was a relatively short open house, only 4 hours and she only had a few minutes with each person;  she would have loved more time to visit.  However, I have names and addresses now so we can go to see them!!   And I WILL take her.   She has different memories and stories to relate with each one of those people.  And, what nice people they are!!  

Mom's lived in the same town since 1936 and the same house since 1943.  Decades!!  I can't say that I've lived in one place that long.  I worry that I won't have the long-time friends and relationships like she's had.  While I wouldn't trade my experiences for much of anything, I envy her stability.  She and my dad created a satisfying life in the same place. They were involved in their community and made lasting relationships; they were - they ARE - respected.   They might not have had lots of money, didn't travel or have expensive toys but they had something much more precious.

Wednesday, September 15, 2010

There's a special place for those who steal from nursing home residents!

Hell has a special place for those creeps who steal from nursing home residents!!!  And, trust me - it will be FULL!!

I already wrote about Mom's brand new go-with-everything pants in brown and navy - but I have two new examples to gripe about.  Mom's roomate is a sickly little gal who is getting sicker all the time.  She is a dwarf and has suffered from physical problems and constant pain all her life. She has no family and has very few personal possessions so when something goes missing she is especially distressed and hurt.  She has no way to go looking for it and no money to replace it.   One of her favorite things was a quilt made JUST for her by a friend of her long-dead mother.  It was white with embroidered red roses and red bands between the white fields of flowers.   She went out of town for a biopsy and it was gone from her bed when she returned.  The aides gave her their standard answer, "It must be in the wash.."  Any dope would know you don't "wash" a handmade RED quilt!!!   Three days later it was still missing and she was quite upset.  She cried and cried.  I felt so very bad since there was nothing I could do.    She has NOTHING! - nothing to her name -  just this one thing that made her feel loved and remembered and it's gone.   She also told me that she is missing a few dollars but that is all secondary to her quilt. 

Another resident  - who is on medicaide and receives $40 per month for "personal" needs - told me through tears how her DVDs disappeared while she was away for an appointment.   She had saved and gone without things for months and months to buy a few movies to watch on a borrowed DVD player and now it's all gone.  Someone had to have known when she was out and gone in to her room to take them.   They knew just where to look, only the DVDs were missing, nothing else was disturbed.   If I had the money, I'd buy replacements for her AND a locking cabinet for her closet so her things would STAY PUT. 

I am flabbergasted that anyone could be so very LOW DOWN and  evil that they'd steal from such vulnerable people.   Often nursing home residents have nothing; their homes are sold off, furniture given or donated away and friends and pets long gone.  Some don't have enough room to hang a photo or put  a chair near their bed.  To take things from them is the WORST sin possible. 

Birthday party is a family affair - THANK GAAWWDD!!!

Mom's 90th birthday party is taking a little more coordination, planning and buying than I expected. But - I salvation - COUSINS!!... and my husband.    I'm blessed to have the kind of family who, when invited to anything, immediately asks, "What can I bring?"  Instead of asking for things, I asked for their time. Which at this point is much more important to me.  I'm also blessed to have the kind of husband who, when told about the party is brilliant enough to show up, shut up and do what he's told!

Dan will help me run around all day Thursday and Friday cleaning house, making food, picking up cakes and flowers.  He'll help me place table clothes, decorations and chairs... and I know he won't yell or fuss at me because he knows there's a lot to do -  he might give me a little attitude but it's generally all in fun.  We've been married long enough now that we sort of compliment each other when we're preparing to have people over or fixing something. 

I know getting Mom dressed will take at lest 30 minutes longer than I expect and her hairdresser will be there at 11am to touch up her hair.  I asked a cousin to go to the party early and start coffee and make punch before we arrive.  She'll also bring a couple of side dishes for a family meal afterward.  Other cousins are coming to the party and will help clean up.  My sister in law will arrive early to great guests if we're late getting to the church hall. 

I've made a schedule of things to do on Thursday and Friday so we can do our errands in "loops" instead of running back and forth from stores to church and stores to the house again.  I'm excited for the party but mainly excited to get help from FAMILY.  It means so much to know they'll help when needed.  They are a blessing and I MUST remember to tell them so!!  I hope I'm a blessing in return..

Thursday, September 9, 2010

Colon get's the all clear.... whew...

A colonoscopy at 90 is a HUGE deal and Mom had one two weeks ago.  It wasn an ordeal for her -  "cleansing" liquids all evening after a day of clear liquids and then more "cleansing" at the hospital before the procedure.  Long story short - she had 2  benign polyps and everything else looks good.

The original cleansing was awful; the stuff is basically soap or some kind of soapy tasting salt solution.  It really goes through the human body fast so she had to "go" within an hour and go again and again.  I sat with her in the evening while she drank all the stuff down and ensured that the aides responded quickly to her potty calls.   I actually helped get her up and down a couple of times - better that than have a mess and ruin her dignity.   When we were sure her colon was good and empty, she went to sleep and I went home for the night.  I met her the next morning at the hospital for the in-patient procedure.   She drank down more of the nasty goop and sat on the commode some more. She was exhausted and cold.  The nurses at the hospital brought warm blankets and we wrapped her up as she sat there.   After a couple of hours, she laid down and slept for a while.   She was up and down a couple more times before the procedure.  The colonoscopy itself took 30-40 minutes then she was in recovery for clean up and dressing.   She was starved so I fed her two small servings of custard and called the nursing home to hold some supper for her. 

I followed the van back and helped her eat and get into bed.   She was fast asleep by 8pm.   Given the "cleansing the evening before, it was a long day - 9am to 430pm - but she was a trooper. The aides and nurses were so very kind and helpful.  I am sure they'd have been just as professional and caring even if I'd not been there.    It was a lot to put mom through - 1 day of little food, 1 day with NO food, hours of diarrhea and a sore behind - but it's better to know if something is wrong.    I was worried about dehydration and low blood sugar which can cause a seizure given her epilepsy.  They gave her some IV fluids before the procedure and some dilantin to prevent an episode.   I don't think they'd have given it much thought without my questioning it ahead of time.   I just wanted to prevent a seizure when she was so vulnerable and it worked out fine.

Should my elderly mom have a colonoscopy?  should my elderly dad have a colonoscopy?  am i too old for a colonoscopy?  How old is too old for a colonoscopy?

Monday, September 6, 2010

Family wedding gives me a guilt sandwich

We attended a beautiful family wedding over the weekend and it left me feeling awful.   Mom would have loved to attend but it just was not possible - getting her around in the wheel chair would have been a terrible pain for us all.    I feel guilt because I didn't do all i could to take her to most likely the last wedding she'll ever attend.  I feel a sense of relief NOT to have taken her so I could relax and enjoy visiting, my own supper and dancing without worrying about her needs and comfort.  Then, I feel guilty for feeling a sense of relief!   Guilt - relief - guilt...  my guilt sandwich...

We would have been able to get her around the venue but it would be difficult, cumbersome and meant lifting her wheelchair up and down stairs.  There were also no grab bars in the restroom which mean I'd have to do all the lifting to get her off and on the commode - my back can't take that much any longer.   We talked about it weeks in advance and she said she'd go ONLY if it was easy to wheel her to the bathroom.  I toured the venue a week in advance and it was, clearly NOT set up for any sort of handicap. She let me off the hook and insisted on staying home. 

Even though we had this discussion I feel terrible guilt and I know there is no way I'll feel better. I must accept that and let it go but that's really harder said than done.   I speak with so many friends who go through the same thing so I feel better knowing I'm not alone.   I have to be content that I take her out for rides, lunch and we'll soon have her 90th birthday party - it will have to be enough.

Sunday, August 22, 2010

New sink and vanity might help prevent falls...

Today I noticed that my brother is leaning on a small bathroom sink for support and I worry it's risky.  He's probably 190-210 pounds and the sink is a 40's hunk of heavy vintage porcelain that's attached to the wall with a couple of large screws.   Mom's house is pretty old and the sink wavers just a little bit when I attempt to wiggle it. Given my brothers health issues, he'll likely lean on it often and with a lot of weight.  So - it's time to replace the sink with a vanity and lighter porcelain that will support his weight.

So - we'll add that to our "safety list":  remove old sinks and those with pedestals that might topple when leaned on.  The idea of a heavy porcelain sink falling onto my brother or my elderly Mom is just horrific!

how can i make the bathroom safer for mom? safer bathrooms for elderly 

Taking Mom for a ride and screaming inside

Getting Mom out has become a character building experience for me.   I try to take Mom for a ride at least once a week when I visit her home town.  I make a point to take her some place where she has good memories and ensure we have a good treat along the way.   The past few months she seems to have trouble remembering where we're going and continually asks where we are all along the way.  She marvels at things as though it's all new to her.  When I tell her where we are she replies, "Really??!!  I'd never have known; it's so different."  I'm left wondering, "Different from WHAT?"  

I suppose she is beginning to remember the familiar streets of town as it was decades ago - really, she's FORGETTING many things about her town and region.  She remembers buildings and landmarks that are long gone.  As we drive she gives me a running commentary about how staying in her "coop" makes her forget and how much things have changed.   It's a constant thing when we go out now and it's making me nuts!!   However, I NEVER let her know it's making me crazy.  Though I'm screaming inside, "YOU SAID THAT ALREADY!...and you said it last time and the time before that, can't you just accept it??!!!!"   I don't say a word to her about it.   I speak slowly and deliberately so that I don't have so much as a negative tone in my voice.   I calmly explain the changes she sees and I make excuses to make her feel better. 

She realizes that things have changed a lot and this makes her wonder about her own memory. She says, "Have I really forgotten that much?" I try to make her feel better with excuses about how quickly things change these days; how little she gets out and how much she has to remember after all of her 90 years.   I remind her that she remembers MORE than many, many people - often ME included.  Then I try to change the subject and ask her about something that I know will bring back good memories.  Most of the time, she tells me some story that I've heard by this time but now and then she reveals a gem - something that she and dad did together or some funny story about family or friends.   The new stories alone are worth sitting through a lot of rambling.     I'll continue to take her for drives and listen to the stories - old and new - because it's good for both of us.  I've not been the most patient person throughout my life so this is good practice I suppose but mainly it's good for my Mom. She needs the change of scenery and to relive the good memories we find along the route. 

Wednesday, August 18, 2010

The state of denial is a weird place to live...

I am watching someone live in a state of denial and it's hard to keep my mouth shut. The past couple of weeks I've been staying at my Mom's home where my brother is living. Mom's in a nursing home so it's just the 2 of us there. Normally he's an impatient jerk to family members but this visit, he's been pretty nice and that makes me wonder just what's going on.. He's been visiting a nurse practitioner about high blood pressure and they want to run stress tests in a couple of weeks. I can tell he's anxious about it all.

I can also tell he's suffering from bad emphysema and he mentioned something about COPD - chronic obstructive pulmonary disease. I also worry about colon cancer since it runs in both sides of our family and he's never been checked. At 66, he's terribly short winded and he can barely do anything requiring exertion. He has an ugly cough that rattles from deep within his chest. He can't walk to the mail box without stopping to catch his breath. He looks at least 10 years older than his age. However, he talks about things as though he's much younger and more able.

He talks about fishing, moving to the mountains and buying a boat. He talks about travelling to see friends in the Philippines, seeing beaches in  Hawaii and Mexico in winter.   He talks about others in health with disgust and complains about how they treat their bodies but still drinks several beers a day and finishes off one pack of cigarettes by evening.  I'm quite realistic so it's hard for me to listen to this.  I want to scream, "Look at what you've done to YOURSELF!"  "How can you even think of buying something at your age in your condition?!"  But I don't, I keep my mouth shut.   I say nothing to prevent arguements - for his sake, it's the last thing he needs and, selfishly, I just don't want to deal with his vile temper.   I know he can't have long, a year, perhaps 2 at most.  I wonder how much his body can take.  I patronize him I suppose but it's easier on him and on me.   I went through this with an uncle years ago.   He was terminal and we all knew it but we let him live in denial.  He had hope for every day.  He was interested in things and happy every minute.  I can only hope the same for my brother for every day he's got left. 

Waiting for a crisis - one thing we'll all do sometime

Speaking with a friend last night I realized that there is one basic thing that nearly all of us share when it comes to dealing with elderly family  - that is the waiting for some crisis event which forces a change for our loved one.  We wait for the fall that puts mom or dad in the hospital and then the nursing home.  It's the stroke or heart attack that signals the start of their decline.   Or, it's the car accident that means the loss of a drivers license and cancellation of insurance.

Elder care professionals call these "sentinal events" - some event that is often a tragedy and that means a big change in the living conditions of our loved one.   Most often the outcome of these events means drastic change or a tragic outcome  Think of the stories we read of elderly people found wedged for days between their toilet and the wall or someone who's fallen and never got up.  After waiting for so long we can only react to the circumstance; there are only a few options left by the time an event occurs.

Why do we end up waiting?  It's because we have no other option.  The parent/elder is not sick enough to be hospitalized or might have a chronic condition.  She or he might be right-minded enough to say "leave me alone" or there just are no funds to help provide any assistance to prevent the incident.   We WANT to respect our elders so we respect their need for independence. We don't want to hurt their feelings or pride or our relationships so we let things be.  We know something will happen, it's usually only a matter of time.  We wait and wait then deal with the outcome.

The waiting is hard.  We see the decline, the weakness, the potential; we know something is coming but we don't know what or when.  We grow anxious, we get stressed, angry or frustrated but there's nothing we can do.    In some ways the waiting is easier because if we let things go long enough the options for our elder are limited.  Their condition may be such that a nursing home or hospice is the only option.  I have to ask myself if this is so bad.   We might do things that prolong the life of our elders but what about the quality of that life?  For me, I'm glad my Mom was in her home for years and admitted to a nursing home late in life.  She was surrounded by her family, her favorite sentimental things, her own roses and friendly neighbors.   The house didn't get as clean as I'd like, the lawn was under-watered and the flowers often gangly but she didn't care. She was simply happy to be there.   So I had to be satisfied that she was content and worry less about the time she had left.  We chose to put her immediate happiness first.  It was hard and I often worried but looking back, I'd do it again the very same way.
What is a sentinal event , when should I move mom dad , mom doesn't want to ove what do i do , dad doesn't want to move what do i do ,dad won't stop driving what do i do 

Monday, August 9, 2010

Keeping mom's house as is...are we crazy or sentimental?

I've decided to make some changes at my Mom's house and I'm feeling a wee bit guilty.  Mom moved into assisted living more than a year ago and we've kept her house just as she left it.  My brothers and I never discussed what to do with the contents for several reasons. The two most important were that we knew mom would visit the house and we wanted her to feel it was still "home".  We didn't want to cause family issues because arguments over "who gets what" will surely follow.   

My decision to start making changes is two fold - I want to get rid of the junk no one would want later and I want things better organized.  Mom was a very organized person and she had a place to store everything.  She didn't accumulate a lot of "pretty' stuff or knick knacks - everything had to be useful; it's the art of living well on a limited budget I suppose.   As she got older putting things in their "right" spot became less important as finding the most-used items at arms length.  She couldn't bend over, kneal down or stand on a stool to reach things anymore - everything ended up on counters, shelves and table tops.  When she moved I got rid of half that "stuff" now it's time for the rest to go too.

Since she's 90 I intend to spend more time with her and this means more stays at her home while I'm in town.  I can't stand living around the junk anymore so it's got to go.  As I type this I realize that I'm trying to talk myself into feeling better about tossing, giving and storing her things away.  I know there are practical reasons too which helps make me feel better.  When she needs more of my time and attention I'll worry less about cleaning her home and yard if I get rid of clutter and get it clean now.    When she finally passes away, going through things will be faster and easier if three's less to do and if she's already designated who gets what.   

As I sort things, I can hear her voice telling me where it came from and pointing out that this or that still has some useful purpose.   It's still Mom's house, it will always be Mom's house and I'm sad to have to make changes but it's necessary.   If I must continue to stay here and if my brother continues to live here with his own set of health problems, we've got to make the most of the space with some extra cabinets and clutter removal.   Living at Mom's will always feel like her home but it will just be an improved version. 

Wednesday, July 28, 2010

Medicaide not covering some prescription costs due to missing info.. ARGH!!!!!

I just found several bills for 3 months worth of Mom's prescriptions at the nursing home - this is for her portion of prescription costs after payment by her supplemental insurance.   I was told that these would be covered by Medicaide but OHH NOOOOOOO!!!  No one told me she MUST be enrolled in Medicare Part D to get this co-pay covered!!!

Generally, if a person is on Medicaide, their Medicare premium is paid the the state (Medicaide) and their premium for Medicare part D is greatly reduced to $1-$5 per month.  Long story short, the Social Security Administration  which administers Medicare has no communication from Mom's state Dept of Health that she's been approved and receiving medicaide, there fore, she can get Medicare Part D to cover this co-pay but until the SS office gets word from the state - her monthly premiums and deductible are MORE than the co-pays!!  I learned all this after four calls this morning.  I was especially preturbed that I spoke with a woman at the Medicare-Medicaide service call center - I assume she's paid by the federal government or employed by a contractor of the federal government - who took down all kinds of information then suggested a specific PRIVATE company that would best meet mom's needs for the least amount of money.   This choice is based on her prescriptions - it seems that private companies are diving up the pie.

I HATE this confusing BS and it really makes me want to advocate for ONE SOCIALIZED system - as it stands now her expenses are covered by two government programs, one private program and I need to get her enrolled with a 2nd private company to pay what the other 3 (2 public/government and 1 private) will not.   It means 4 sets of paper work, 4 sets of billings, 4 mailings, 4 account numbers - IT'S INSANE!!! It's no wonder that Medicare fraud is so easy!   I don't want to reduce American jobs but I wonder just how many people are employed to manage this mess? How many people are employed by doctors offices and nursing homes to wade through this mess?  If it were in ONE program, might it cost less money to administer?    I get especially frustrated when I consider the number of people to manage this bureaucracy and the waste versus the needs of patients and the push to drive down the cost of their care.  If it were all under one umbrella plan, perhaps it could cost less and my Mom wouldn't suffer the indignity of the cheap solution!!

Tuesday, July 6, 2010

Lost clothes at nursing home a COSTLY pain!

Last month I noticed that two pair of Mom's pants were missing.  I alerted the staff and called social services with the brand names, size and color.  Today (3 weeks later) I called to check on it - the pants have been declared officially lost.

This REALLY ticks me off so BAD!   They can't loose the cheap sweatpants Mom wears most of the time. They have to loose the nearly BRAND NEW nice soft slacks that I bought for her last fall.    She had them at the assisted living facility but only wore them for a few special events.  I waited to take them to the nursing home because I wanted to see how she settled in..  I took them there one month ago, a week later they were MIA. I took 3 pair to her - light blue, dark blue and brown.  The dark blue and brown pair disappeared in one week.  ONE WEEK!!!  This makes me quiet suspicious.  I doubt she even had a chance to wear them.    They were a size 14, soft on the inside and out with pockets for her tissues.   They would be a good basic item in anyone's closet - obviously they are a good basic in someone else's now!!!  

The nursing home apologized of course and said they'd reimburse me replacement cost.  But replacing them is probably impossible.   First, it's middle of summer, so I can't replace these until late August or September when the fall merchandise comes in.  Second, the fabric - soft on the inside and velvety soft on the outside will be hard to find.  AND - third - pockets! Elastic waist pants with POCKETS are hard to find.  GRRRRR.... I am SO SOO MAD!!!

The social service rep that called me said "unfortunately, this happens more often than we'd like..." My reply - THEN FIX THE PROCESS!!!  Obviously something is not working so analyze it and FIX IT!!!   How much are they spending on replacement clothes?  How many angry families are out there like me? What if a family can't afford to replace the clothes?    After our conversation, I could tell I made the gal angry - I told her I was ticked but ticked at the situation NOT at her.    It didn't seem to matter.   I always get the same answer - "You could write a letter to our executive administrator.."   The Director already hates me because I gave them hell for leaving mom in an uncomfortable wheelchair for two months!!!    She hated that I was right about the pad in the chair being all wrong and letting mom slip all over.  She'll really hate me now that I all but told social services that I think someone stole mom's pants.  I should have kept my mouth shut but it's just too suspicious to me!!!  

Thursday, July 1, 2010

Shoes and clothes actually MADE for mom!!

Finding clothes and shoes - especially SHOES!! - for Mom has become really difficult.   Often I have to run to several different places getting one item at each store.  I finally found a catalog called National, that has all kinds of comfy and practical shoes for Mom as well as clothes she finds attractive.  She has arthritis in both feet but one is worse and  made wider by bunions. To fit her well, I'd have to buy two different size shoes.  National has shoes with velcro closures that also open really wide to get off and on easily.   This enables her to get her own shoes off and on - THAT makes her feel more capable -  anything that makes her feel capable is terrific!

I find their clothing rather conservative but they have a variety of suits, house coats and easy-dressing tops and pants. National also has stuff that I might consider "old lady" products - old fashioned girdles, plain white garter belts, large size bras that close in front, sleeping caps and shawls with pockets!  While I wouldn't wear these (not yet), I can see where these would be helpful to my mom or to women with her limitations.
Where can in find tops for dowagers hump? shoes for arthritic feet, shoes for wide feet, easy on shoes,  easy off shoes. clothes for old ladies, house coats for old ladies, robes for old ladies

Catalog with sentimental things for mom (me too)

Mom often longs for familiar things from her childhood and trying to find them is really difficult if not impossible.  I did find one catalog, Vermont Country Store, that has a lot of things that she enjoys.  I found licorice, ribbon candy, soap and other things that bring back warm memories of her youth.   I've even found some things that I find useful and enjoy - a hand cranked food mill, replacement lids for pans, glasses.... all kinds of stuff.  I find that I like to get a catalog first then browse through the web site.   I also take the catalog to Mom in case there's anything she might want to order.

Where can i find old products that mom likes?  where can i find ribbon candy? clove ribbon candy, cinnamon ribbon candy, old-fashioned old fashioned products for mom dad grandma grandpa

Sunday, June 27, 2010

The catalog every caregiver needs....

Need things that make your elders life easier?  There is a one-stop shopping location: Gold Violin.  They have all kinds of things  - from clothing to safety items to transport chairs with wheels - that make your elders life easier and safer.   I originally began looking for small items that would help mom continue to do things she always did - like can openers or door handles. As she aged we needed more specialized items like hand holds for tubs or chairs for a bathtub.   You'll find this and more  in this catalog.   I can't recommend it enough.  If nothing else you'll see what's out there and you can take it to your local pharmacy to see what they can help you find.

Note:  The link below is repaired after a kind reader let me know I used the wrong URL.  ;)

On line, you'll find them at this Gold Violin site or
There's also a toll free number if you wish to order a catalog:  877-648-8400
Where can i find products for my elderly arthritic mom?  where can i find products for arthritis? where can i find products for aging in place? where can i find bathtub aides? where can i find bathtub safety products? where can i find bathroom safety products 

Thursday, June 24, 2010

Missing "Mom" and her understanding, wisdom and advice

Having a parent that is old and vulnerable is hard from many different angles.  Mom needs someone to conduct all of her business.  I'm advocate for her health care and quality of life issues.  I nudge family to go see her and help her write letters to distant relatives.  I made the hard decisions to move her, and broke the news to her.    I try to make her happy and minimize her stress.  The latter means that I don't share sad or stressful things related to my own life.  In short, I paint a happy picture for her even when it's really hard.   I've been doing that lately and it makes me realize that I really miss being able to talk to my Mom.  I miss her advice, crying on her shoulder - literally her hugs and whispers that everything will be okay.  

At those times when I had nothing or no one else, my Mom and Dad were always there.  They couldn't do much financially but I knew I was loved and that they believed I could do anything.  I knew that someone was always made happy just to hear my voice or see me talk through the door.  I know I'm lucky to have had parents like that, everyone SHOULD have parents like that.   Today I find my self grieving the loss of "that" Mom.  She would want to know that I'm upset; she'd try to make me feel better.  I won't tell her, I don't want to upset her.  Perhaps she'd even forget easily but I don't want to risk it.  

Today, I hate this; it's really hard.  I feel like I've been grieving the loss of my Mom for a long, long time.   It will continue so I've got to find some bit of advice, some wise words - probably some that she shared long ago - to lighten my mood and help me see something positive.   That's what she did so many years ago with her own mother, so I'll have to follow her example once again.   What a fine example she is.....

Wednesday, June 23, 2010

Medicare versus Medicaide

In the past week I've had three calls from friends about the difference between Medicare and Medicaide.  Basically, one is a federal insurance program for the elderly and the other is a state program that helps indigent  - or poor - residents.

Disclaimer before you read further:   This information is based on my experience and knowledge of Medicaide in two separate states.  Each state is different; to find out the specifics of your state, do your research.  I suggest that you search "(name of your state) AND  medicaide" or contact the your state agency for health and welfare.   The Area Agency on Aging within your local area is also a good resource to help you begin to understand Medicare and Mediciade in your state.

The basics:   Medicare and Medicaid are BOTH paid for by tax dollars - and you didn't think the USA has socialized medicine....
Medicare is government supported health insurance for the elderly, it DOES NOT PAY for nursing home or long term care.   Citizens 65 years and older pay premiums directly from their social security. You may select any doctor who accepts this as payment.
Medicaide is government paid nursing home (long term) care.  It may also help pay for Medicare premiums and for prescriptions.  Most of the funds for medicaid come from the federal government but the programs are administered by each state.   Each state still has to contribute something toward Medicaide.

Medicare is a federal insurance program available to US citizens over 65.   To pay for this plan, the federal government takes premiums directly from social security payments.   Most of us will be covered by Medicare at some point.   Even if you have health coverage as a retiree, those programs usually defer to Medicare once you turn 65 and you're likely to need more medical attention, prescriptions or procedures.   In some cases, the primary insurance you had through a pension plan or employer becomes your supplemental plan, meaning that it pays some of what Medicare does no. Medicare does NOT pay for long term care in assisted living or nursing homes.  They will not pay for on-going home health care or aides for elderly either.   They will pay for up to 120 days in a nursing home provided the patient shows improvement and any therapies administered help the patient improve to return home or return to assisted living.   As a citizen, you automatically qualify for Medicare and, near your 65th birthday,  you will receive a letter advising you of your status.   As of this writing, June 23, 2010, there are many doctors across the country who refuse to accept Medicare payments so use caution when selecting a doctor.

Medicaide is a state program (it may be called something else in your state) generally administered by the State Department of Health and Welfare.  Medicaide is not limited to the elderly and may also cover children of poor families, people with physical or mental disabilities or the most poor citizens.   It generally does not include dental or vision but in some states eye exams and dentures are covered one time during a set period, like onc every 5 years.  Medicaide DOES pay for long term care in assisted living or nursing homes and there are certain criteria to meet before an elderly person may receive Medicaide.    Generally these are:

  • Spend down to $2000 or $2500 in assets. This means that the elder MUST use all possible assets before they may receive medicaide.  They must consume all cash, CDs, stocks, bonds and savings. Note that if at anytime, an elders assets grow to MORE than $2000 or $2500, they may be disqualified from Medicaide until that money is spent.  If you know this will happen, you can plan for it and buy something that they need like depends, lap robes, eye glasses, dentures (medicaide will pay for eye glasses & dentures but only once every few years). Here's a link to an article about the Medicaide spend down on
  • Look back periods:  These can get you in to a lot of trouble.  Each state has a defined period where they look back at expenditures to determine whether someone qualifies.   This is to prevent transfer of ownership of valueables, gifting of cash, stocks, bonds, etc or deeding of any property before an application for assistance.    The object is to ensure that assets are used to provide for someone, that they consume their resources before receiving public resources for their support.   Some states have a look back period as long as 7 years!!  so be sure to thoroughly understand this before accepting anything from your elders.
  • Homes may be exempt: The elder may own a home and the state will not force the sale of it if a spouse, dependent child or other relative lives there.   The state may also permit the home to sit - without being sold - if the elder plans to return home.  
  •  Financial recovery:  most states seek some kind of financial recovery from an elders estate.  First they will put a lien on a home or proprety so that when the elder passes, the state will expect to recoup funds spent on care.  If the home/property is occupied by a surviving spouse the state may not use liens.   The state may also try to recover funds by forcing the sale of cars or other valuable possessions such as art or antiques.   
  • Pensions and social security must be spent toward care:  Any monthly income received by an elder must be spent on their care, this is often called a co-pay or care contribution.  In my mom's case, her social security and pension are deposited directly to her checking accounts and I write a check for her contribution each month.   The state pays the rest directly to the  nursing home,  I don't have anything to do with that.    
  • Monthly personal allowance:  Most states permit each elder to keep between $30-50 a month for their personal use.   This isn't a lot at all so I supplement when necessary.   I do not give the money directly to her but do pay for her hair cuts, permanents and regular hair appointments.   
Some other things to consider about Medicare and Medicaide: 
  • Medicare is your PRIMARY insurance after 65 but Medicaide helps: You'll still have to pay a monthly premium if you go on Medicaide but Medicaide will pay the premium for you.  So for doctor bills, procedures, tests, etc.   Medicare pays first, your supplemental plan (if you have one) pays second and Medicaide pays third.   Without a supplemental plan, Medicaide probably covers it all or the doctor may write off some of the charges.
  • Medicaide can start and stop payment so WATCH THEIR BANK ACCOUNTS!!:  If an elder is hospitalized, their care may be paid my Medicare for that period and for a time (sometimes as long as 120 days, 3 months)  AFTER they return to a nursing home.   BE CAREFUL and watch their funds during this period.  If their monthly income is NOT used for a nursing home while Medicare is paying, it can build up over the $2000 or $2500 in maximum assets.  This nearly happened to my Mom so I bought some personal items for her to ensure that she did not accumulate more than $2500.   I also started a burial fund - allowed by her states' Medicaide program) and plan to contribute to it if/when she begins to accumulate more than $2000.   On a personal note:  I don't feel like I'm ripping off the state or being dishonest in this case,  she would have been only $250-300 over the $2500 but that relatively small amount would cause all kinds of headaches and I'd have to redo her medicaide application all over.  
What's what is the difference between medicare and medicaid medicaide? what is the medicaide medicaid spend down spenddown? can mom dad give me money and still get medicaide medicaid?  Will medicare pay for nursing home.

    Tuesday, June 22, 2010

    Newly diagnosed anemia could mean bigger issues for mom

    Mom's doctor called today and wants to schedule a colonoscopy- the reason:  Mom's red blood count has been steadily falling over the past year; she is anemic.   She has no internal bleeding or other symptoms to indicate why she's anemic.  He fears she might have an ulcerated colon polyp.  She's had polyps in the past and should have a colonoscopy every 5 years to catch polyps before they become cancerous.   The doctor wanted my opinon on whether mom would want the colonoscopy and if she could stand the "preparation" for the procedure.   We agreed that it's best to do the prep at the hospital before the colonoscopy.  The prep is a complete cleansing of the colon with really strong laxatives; it can be nasty.  It means sitting on a toilet for long periods and possible dehydration.   Given her age and tendency to be slightly dehydrated it's best to do it at the hospital where they can quickly diagnose and address any complications.

    I did some brief research on anemia in the eldery and am more concerned for mom.    The immediate worry is cancer or pre-cancerous polyps.   If that is NOT the cause of the anemia then we must worry about finding the cause and the secondary effects of low iron in Mom's blood.   For healthy younger people anemia meand fatigue and reduced endurance.  In the eldery it can mean increased risk of heart attack and has been linked to vascular dementia - confusion and forgetfulness resulting from decreased oxygen to the brain.  Long term effects of anemia are organ failure and even peptic ulcers.

    I hate the idea of a prolonged diagnosis of the cause of this anemia.  I find myself almost wishing it is some polyp that is easily removed so she'll be fine but I can't help worry that there's something else wrong.  If it's not polyps then tests and procedures will wear Mom out and make her worry.   For now, I will tell her only that it's time for her regular colonoscopy and that I'll be there to help her through the prep and the procedure.  The rest we'll handle as it comes.

    Mom has anemia what does that mean? anemia in the elderly causes of anemia in the elderly dementia from anemia. Can anemia cause dementia? can anemia cause alzhiemers?
    colonoscopy in the elderly , anemia in the elderly should my mom have a colonoscopy.    , colon cancer in the elderly.  grandma has colon cancer. 

    Saturday, June 19, 2010

    Medicare takes a while to "buy" wheelchair -

    Mom's "free" wheelchair wasn't so free after all  and no one knew it - apparently, she had to pay for some of it even though deductibles and co-payments on her part had been met.   The whole situation has me frustrated and demonstrates that people just don't know all the rules and regulations about payments when dealing with Medicare and Medicaide.   I believe there may be some confusion over billing and with the three parties involved but I'm so frustrated with the matter, that I'll end up paying the $58 myself.

    When Mom got her wheelchair  we were told "Medicare will buy it.." "Outright, completely, 100% paid for by Medicare?", I asked the assisted living facility?  "ABSOLUTELY", the staff at the ALF assured me several times... Well, that's absolutely WRONG!   Medicare pays for the rental of a wheelchair for 16 months or so.  If the patient still needs the wheelchair by then it's considered paid for, so it's a rent to own program.    When Mom transferred from assisted living to the nursing home, we didn't know the wheelchair had to go back to the medical equipment rental company so it went into storage.   After two months they reached me and I took the chair back immediately.   At that time, I was disgusted with the whole process and asked for some kind of receipt; they were reluctant to provide it but I insisted.   Good thing I listened to my gut, because 2 days later I got a call asking when I planned to return the wheelchair!!!  At that time, I asked about outstanding bills, payments, co-pays ANYTHING and was told it was paid in full....

    They're FULL OF IT alright.....  yesterday an angry accounts receivable clerk from the rental company called wanting the $58.  It seems she's been sending invoices to Mom at the assisted living center. The ALF gave a forwarding address at the nursing home but they've received no money.   The nursing home finally told her to call me as the Power of Attorney (PoA).   Medicare has taken back two months worth of rent from the medical rental company because Mom was in a nursing home where wheelchairs are provided. Medicare wouldn't pay for the two months that the chair was in storage.  Thinking the chair was Mom's property, we put it in storage and that will cost us $58.  It's not a HUGE amount of money but it's money I'll have to take from her savings.  It's inconvenient.  It's frustrating to talk to people who assume you're trying to run-out on a bill.   It's frustrating that the "experts" don't know the process yet speak with certainty.  I've found this same situation over and over, things are so complex with billing Medicare, Medicaide, supplemental insurance, Medicare for health care, Medicare for prescriptions, Part B, Part D - never mind what happened to Part A and C!!- payments made, payments rescinded... It's all just too complicated.  I wish they'd put people to work figuring out how to make it easier, or put in some regional offices with case workers.  UGH!!

    Will medicare buy mom dad a wheel chair? How can I get medicare to buy mom dad a wheelchair? Wheelchair rental for the elderly. 

    Saturday, June 12, 2010

    Death isn't so scary if you believe in something greater.

    I've seen two people die - my uncle and then my father - and learned a lot from both.   Neither death was horrific but peaceful; neither left me a weeping mess because I expected it.  Both situations were very different.  My father had been home for weeks gradually declining and in pain.  We moved him to the hospital to better control his pain; we knew he'd never come home.  He lasted 2 1/2 days after he was admitted and we stayed with him the whole time.  My uncle was diagnosed with terminal cancer and in a nursing home. We expected he'd have another few months but got a call one evening that he was in rapid decline for unknown causes.  We rushed to the hospital to find him unresponsive with no idea how long he would last.  I opted to stay with him and sent my Mom, father and brothers home for the night and he passed away 2 hours later as I sat with him.

    My uncle died first and I was amazed just how easily it was for him to simply sleep and not wake up.   I didn't hear a last gasp, I didn't hear a thing.  The nurse came in and said his heart was barely beating and his breathing was very shallow.   He was very cold yet his internal temperature was quite high.  The nurse disconnected the monitors, the oxygen and then his chest just stopped moving.   He looked at peace for the first time in a long time.  The year before his death had been emotional due to his anger and frustration.  He refused to address the fact that he was terminal.  He refused to discuss his business affairs, to tell anyone about debts, savings accounts or anything like that.  He bought woodworking tools from HSN and QVC, wood and materials from catalogs, magazines and Christmas gifts.  He was in denial and we didn't have the heart to force him to face the truth.  After he passed, his peaceful appearance actually made me feel better; I was relieved for him.  

    When my father died we were all exhausted.   My family and I had gathered at their home daily for a week or so.  We knew my father didn't have long so we wanted to make the most of it.   When it was time to go to the hospital, my nephews, my Mom and I went with him.  My brothers and sister in law were waiting there for him.  He knew we were all there and it made him feel better.  We created a plan to ensure he was not left alone and then began our "shifts".  My Mom would not leave his side so we tried to tend to her as well.  She is an epileptic and prone to grand mal seizures so we - and my father - were very concerned about how she'd handle things; we worked hard to ensure she felt loved and supported.   My father had terrible pain in his shoulders due to tumors and had to receive ever-growing doses of morphine to keep him comfortable. ( I often wonder if he didn't pass from morphine over dose but that's another blog post...) After 2 1/2 days, he would not respond when we spoke but he squeezed our hands now and then.   About noon on day 3, a nurse came to me and said his heart was beating so seldom that he would soon pass.  I did not want Mom to see his moment of death so I positioned myself between her and my dad, holding his hand. My nephew was on the other side of the bed.   After taking my dad's hand, I noticed that it slowly began to turn grey. Then the grey color quickly traveled up his arm across his shoulder and to his neck.  As it traveled up into his face, he began to gape - his mouth opened then the grey color moved from his forehead down to meet the grey color that moved up from his hand.  At that moment I felt something rise up from him and move past me.  His body exhaled deeply and his mouth closed.  

    I remember this so vividly and 14 years later can still see it in my mind but it lasted only a seond or two.  My nephew who was right there didn't see it, he was focused on my mother.  I am sure I witnessed his soul passing from his body.  A week after his death, I dreamt about him each night.  In my dreams we talked about many, many things.  After the dreams I felt there was nothing left unsettled between us and I only felt disappointment that I couldn't enjoy his humor and ask his advice - for now.    This experience left me sure in my heart that this existence is temporary and that there is a spiritual world - our REAL existence - just beyond our ability to physically see, hear or feel it.    Our loved ones are all there, close by, waiting for us.  I am in no rush to leave this lifetime to get there and I would hate to have a lingering illness on the way to that place.  

    The next death I witness may be completely different but I will try to approach it with love.  I will be confident that the person will soon be with other family and loved ones and that I will get there some day too.  The most important part will be to ensure my loved one feels loved and supported.   There are all kinds of ways to do that and it really depends on the person.  I've found some good advice in all kinds of places.  One place where I find great spiritual support is Hay House Radio or Hay House Publishing.

    Here's a link to a Hay House Publishing online webinar that might help us understand what someone needs as they "pass over" from this physical life to the spiritual.  Though Hay House does not produce materials for any specific religion, the information found there is loving and kind, thoughtful and helpful for anyone.   I suggest that you copy and paste this link, or if it's broken go to and search for "death and dying".
    Hay House seminar on death and dying
    copy and pate this:

    is there life after death? dealing with death, dealing with death of a parent, what happens at the moment of death, what's it like to watch someone die?
    what dan i do for my dying mom, how can i help my dying parent,  what happens when we die, What should I expect as mom dad dies?

    Thursday, June 10, 2010

    Emphasyma & lack of oxygen can cause confusion & seems like early dementia

    Lately I've noticed my brother (18 years older than me) struggling to make sense of basic details and I fear that emphysema limits his ability to get enough oxygen. He seems confused easily; he has difficulty remembering conversations, newer businesses around town and where he put things.  He seems less able to understand basic issues related to his medicare coverage and banking.  He is also struggling to breath after even the most limited activity, like walking up a few steps or to the mail box on level ground.    He was diagnosed with COPD - Chronic obstructive pulmonary disease, a less scary term than emphysema - last year.  He was surprised at the diagnosis though it was clear to those around him for a long time.  He's been a heavy smoker since age 19, worked around all sorts of chemicals and vapors and has bad allergies.  I believe his confusion is caused by a lack of oxygen due to his severly diminshed lung capacity.   If he can't get much air into his lungs, he can't get much oxygen into his blood stream.

    He went for some breathing tests last week and said they want to do more tests.  I urged  him to follow through and not to be afraid to discuss using oxygen or a small oxygen concentrator  especially when he goes out.   I looked him straight in the eye and said, "It's better to use oxygen and be able to get around the store yourself instead of waiting for someone to do shopping for you."  We can't have direct conversations about his condition - or failing condition.  He just ignores me or he gets angry and leaves, so this indirect approach must suffice. I can't lead him to water, so to speak.  If he doesn't realize that he's ill, that he's become severely limited, I won't push it. To do so might be too cruel.  It might mean he passes away sooner than later but it's his choice. Deep inside I trust he knows something is wrong and perhaps he doesn't want anything that will prolong his life and his struggle.

    Death and emphysema? Death from emphysema. Does emphysema cause dementia? Does emphysema cause alzheimers disease?

    Wednesday, June 9, 2010

    Talking on the phone good for Mom but makes me crazy!!!!

    When I can't visit my mom I try to call every couple of days.  This has become torture for me and those around me because Mom just can't hear.   She won't wear a hearing aid and the longer she talks the farther down her face - and away from her ear - slides the phone.   After 15 minutes I end up screaming the same things over and over, finally saying "never mind".    When i want to hang up it's a three stage process.  Stage 1, I tell her I need to get going for what ever reason then she asks what we'll be doing for the next few days.  Stage 2, I tell her I need to get off the phone for what ever reason, then she tells me what she's been doing - this is all after about 30 minutes of the very same conversation.  Stage 3, I tell her again that I'll have to hang up and she asks again where we'll be going next, her voice waivers and I can tell she's ready to cry.   By stage 3, she is asking, what? what? again and I'm yelling the same thing over and over...  I'm ticked off, my voice is louder and the tone lower.  Anyone around me is ready to grab the phone from my hand and slam it to the floor.

    It's like having a little kid, I can't be mad at her because she just doesn't understand.  She NEEDS the calls and the company. She can't hear well, she's just happy to have a conversation with someone she loves and she knows loves her.  How can I rush that?  How can I hang up?  How can I NOT feel like crap for getting so frustrated.  I can't; it's just one of those things I have to live with .  I try to call her only from home where the only ones bothered are my husband and me.  I know it will take 3 tries to get her off the phone and I know she'll get weepy so I brace myself and get ready for the stages.  When she gets to the point that we DO NOT go through all 3, I'll know something is really wrong. 

    Monday, June 7, 2010

    Financial assistance for caregivers hard to come by...

    Caring for elderly parents often means financial hardships and sacrifices for the elders and their families.  In my own sphere of the world I've spent more money than I can count on travel to help my parents. My husband put a new roof on his mother's home and bought appliances as her old ones gave out.   Friends have taken their parents into their homes, paid supplemental insurance premiums and prescriptions.  Now some purchase clothing, shoes, personal care items and goodies once their parents go on medicaide.  Medicaide permits the elder to keep between $30-50 per month for personal expenses but often it's not enough even for a little splurge.

    I  read articles and questions/answers on and just noticed that they have a special section specifically for care givers and finances.  See it here:  Aging Care, financial articles. Remember that financial resources for care givers are FEW, someone might find some assistance so I feel it's important to share.

    Can I get paid for taking care of mom dad? Can i get paid for staying home with husband wife? Can daughter get paid for taking care of grandma grandpa grandmother grandfather? Will medicaide medicaid pay me to stay home with mother? will medicare pay me to stay at home with parent spouse? 

    Friday, June 4, 2010

    Sliding shelf makes storing and sorting canned foods easier

    My husband just installed a handy device for my brother - a sliding shelf inside a kitchen cabinet.    My brother is not doing too well, is over weight and suffers from emphysema.   He has a very deep kitchen cupboard where he keeps all kinds of canned goods and miscellaneous stuff.  Visiting last week I noticed that it was chock full of canned goods so I went through it.   I found multiple cans of the same few items - canned spinach, beans, soups - with expiration dates as far back as 2007.  We sorted the food into really expired, recently expired, about to expire and okay.   The first two categories went to the dump and the "about to expire and okay" went back in the cupboard.   Then I tackled the CAUSE of the build up.... My brother is too fat and too weak to dig into the back of the cupboard. Rather than find what's there, he just buys more.

    To make his search easier my husband installed a shallow drawer on slides. The drawer sits on the shelf and has a drawer pull so he can it out to see what's there.   This way he doesn't have to bend down low or reach into the back to find canned goods.  We were worried about the weight of the drawer and slider mechanism but they weighed far less than the 40 or so 15-20 ounce cans of food that we tossed away.   I also reorganized the cupboard so that little-used items are on the bottom shelf - trays, a blender, baking pans, electric fry pan, etc....   My brother will never use these things again so they went to the bottom and the food and few items he'll use went on the higher shelf and sliding drawers where it's easier to reach. 

    Just when I thought Mom was adjusting...

    On Memorial Day we visited more dead relatives than live ones... there were 14 graves and 10 people for lunch.  I returned Mom to the nursing home and she seemed okay.  However, when I returned the next day, she asked me "Do I have to stay here until I die?"  Each time she asks my heart sinks.  I never say "Yes, STOP ASKING!!"  I use my mantra:  "Your safety comes first, your house won't accommodate a wheelchair. The halls and doors are too small, the bathroom is too cramped.  You can't be alone since you're so weak...."  Then I change the subject, a distraction technique that parents use with little kids.   

    This time she came back to her point. She got teary eyed and said that she helped everyone else stay home.  She kept my dad at home.  Other elderly people simply say, "Take me home." My Mom wonders where she'll die.   It's heart wrenching and I wish she could be home.  I wish I was able to take her home but I just can't do it.  I've GOT to work.   Deep inside I realize she knows this, we began talking about it 15 years ago and she told me then to save for my own future.  If her doctor told me tomorrow that she only had a few months left, I'd take her home and live with her there.  I'd do anything she needed but, she's in great shape for a 90 year old and could live for several more years.  

    In this case, I just knelt next to her chair, put my arms around her and hugged her.  We both cried a little then she changed the subject.  I guess she's used the distraction tactic too.   It worked well enough for us to have an affectionate moment and say a loving good bye.  I know she'll ask again because her memory is starting to fail and home is always there where she was capable, had lots of familiar people around and where she felt best.  
    Mom constantly asked asks to go home what do I tell mom when she asks to go home?

    Tuesday, June 1, 2010

    Memorial Day at Mom's house was nice, she didn't mind returning to care center

    Mom's been asking to see her little house and yard but we've been afraid to take her home.  We didn't want any sad crying scenes or to send her into a seizure if she became too upset.   We've tried to avoid excuses and honestly, it's been too cold or too wet for to take her home until this weekend.   My cousin came over, we picked flowers from her garden and made bouquets for family graves then went to get Mom. She sat in the car while we left flowers on graves.  She got to see each bouquet and know that roses grown in HER yard honored all those we loved. It meant a lot to her. We joked briefly that we placed more bouquets on graves than we had people coming for lunch - a sad statement...

    After the cemetary we went to her house where my brothers and other family were waiting.  We had a nice lunch and all sat together at the table with Mom at the honored "head" spot.   She was very happy and ate a good healthy plate of food.  She was especially happy to have coffee and pie after supper - she doesn't get much pie at the nursing home.  

    When talking with her before going to her house I used my mantra:  "it's not safe, the wheelchair is too big, the bathroom too small, the doorways to narrow, you can't be alone anymore..."  She can't argue with these..   Mid way through the day she had to use the bathroom so I helped her. I had a plan to do it and walked through it a couple of times the day before. My plan meant moving her from the wheelchair to a seat on a walker then onto the toilet.  We did the same routine backwards to get from the bathroom back into the wheelchair.  I was concerned since each transfer means a risk of falling.  It was SO much work and I was so worried she'd fall or that I'd drop her.  She tried to pull herself up to stand at the sink but could not. She ended up falling back onto the toilet and sitting there for a few minutes.   After getting her re-routed from toilet to walker to wheelchair she said, I guess you prooved your point, I can't use the bathroom.  She was calm, not too upset but just matter of fact. I didn't say I told you so, I just said, .."yup.  I wish it was different but your safety is our priority."

    When it was time to go, I told her we'd have to deliver some supper to a nephew, look at his new house and then take her "back". I feared she'd become upset but she didn't. She was just fine and willing to go. It was a huge relief for us all.   This evening, a day later, she asked again, "How long do I have to be here?  Do I have to spend the rest of my life here?"  I applied the safety mantra again then changed the subject.  I have a feeling that I'll be using it weekly from here on. 
    Mom says she wants to go home all the time, she makes me crzy nuts.   I am so sick of hearing Mom demand to go home.

    Saturday, May 29, 2010

    Let go - realize what you CAN do versus what you WANT

    The past year I've learned a lot of hard lessons, the most important is that I can't do everything - I must let some things go.   I can't keep up our home & yard in another state, a full-time job, Mom's house & yard, take mom for outings and doctor appointments, mind her finances AND exercise and eat right.    Something is always getting dropped, most often it's something I want for myself - a lunch with the girls, a hobby or craft, a trip to the salon for a haircut....   I am not complaining, but I am confessing that I've become okay with letting some things go for my own sake and my mom's.   I had to prioritize:  People have become important and my relationship with my husband has become the most important thing.   He's been wonderful and patient and I don't know how I'd do this all without him.  

    After the past year here are my new priorities:
    • 1st:   my husband and my own emotional needs 
    • 2nd our financial well being - don't go into debt for others not even Mom, be thrifty & don't sacrifice your ability to save for your own long term care, pay our bills on time
    • 2nd Mom's physical needs, is her environment safe? is it clean, clothes cleaned & replaced often, does she get meds on time and in a manner that she's happy with ( she needs to take pills with milk or she gets nauseous)
    • 3rd Mom's emotional needs (does she feel loved and get enough mental stimulation?)
    • 4th Mom's finances
    • Maintaining our relationship with friends and family, keep in contact somehow, forget those who are demanding, fail to understand that you can't do everything
    • Our home and yard
    • Mom's home and yard
    This list has served me well.  I've learned that a few weeds here and there aren't the end of the world, that the roses look just as good without constant deadheading.   I've also learned that it's okay if Mom doesn't have visitors every day, that she WILL survive a brief check up at the doctor on her own and that she will get enough to eat with out my prodding.   She has not changed, my attitude is what's changed.  I've learned to give up some control and stop worrying about what others think of me or of the condition of our home or of her little house and yard.   It's not possible to do it all without killing myself and Mom would not want that.  She'd want me to spend more time visiting with her or taking her out and less time breaking my back. 

    Certain aides make life bareable for Mom - my thanks to them

    Since Mom's been in assisted living (ALF) and now a nursing home, I've found that certain aides make all the difference when it comes to her sense of well being.   At the ALF there were a four aides that really made Mom's life better.  At her nursing home there are a couple that tell me she's special to them. All have the same thing in common: they were firm but patient, spoke to her in a loving yet NOT condescending manner and showed her affection.   The MOST important trait common to all of these wonderful people is this: they realize that old age is hard and have empathy for the condition of these people.  They understand that they are frustrated by an inability to move or breath easily. They realize that people WANT to do things for themselves but the body is unable.  They give hugs and don't make the residents feel rushed even though there are too many people and not enough time.

    Don't get me wrong, not all of the aides and staff that deal with our elders are kind and thoughtful; I've seen plenty of jerks but for the most part, they are kind and try to do right by our elders.

    Wednesday, May 19, 2010

    Post vacation - Big "whew" as Mom seems great

    After three weeks of vacation out of state I was anxious to see Mom and was relieved to find her very well and content.   I spent more than two hours with her catching up on things she reads in the paper, her friends and sharing stories from our travels.   

    One concern continues with Mom:  How long do I have to stay here?  She means the nursing home of course... My answer is always the same:   Well, you can't be at home and you need more help than an assisted living facility can offer.  This is the safest place for you right now... then I ask about something she's read in the paper or if she's talked with a certain friend lately.  This tactic seems to work well for now and I hope it will be enough next time and the next and the next. 

    Mom seems more content in this nursing home. She's willing to ask for help and willing to stick up for herself if she feels things aren't right.   I think the time in assisted living actually made her MORE willing to request help and let the aides know when she's unhappy about her treatment.   Sharing a room seems good for her too -  even though she always insists she needs a room of her own.   She has table mates that are alert and able to carry a conversation.  She made a friend in a lady that was there to recouperate from a stroke.  I am concerned though if her friend is able to move to assisted living or home with her family.  Who will take her place at the dining table?

    Ah well... we'll just have to work on that matter when it happens.  For now, there is spring yard work, roof repairs and cleaning to do at Mom's house, plus planning her 90th birthday celebration.   She doesn't want to do a thing but it's a milestone we can't let pass.  
    Getting Mom used to nursing home how do i get mom to stop asking to go home

    Friday, April 23, 2010

    Brothers health might stretch my support thin...

    After a few hours of sleep I'm wide awake and worrying in the wee hours of the morning.   My husband and I spent the past week at my Mom's house with my brother who's 18 years older than me.  He's living at her home now, paying all the household bills and tending to the lawn, etc.  It's beneficial for Mom and also for him.  I don't care for some of the things he does and sometimes I don't care much for him but this morning, I'm really worried about him.  He seems different and weak and vulnerable.  I am afraid something is wrong and that some day, I'll have to tell my Mom that her son is seriously ill.  What's worse than learning that your child is ill or dieing?  It will be tough for us all.

    I can't help but think about my brother and feel for him - just WHAT I feel is what's keeping me awake.  My brother is not what I'd call a nice guy - at least not to those in his family.  He's been kind, generous and even loving to friends and even total strangers.  To us he's most often mean and impatient. He speaks with NO regard to people's feelings and drinks WAY too much which makes his attitude even more rude and crude. matter how much of a jerk he is, when any of us - parents, siblings, cousins, nieces or nephews - has really needed something or someone, he's come through.   For all his hurtful crap, he's as dependable as the morning; sometimes that's a cold, grey morning but it's still morning.  His attitudes indicate he doesn't like people, wants nothing to do with them or with us, yet lately he's showing some tenderness here and there that makes me reconsider what's really important.  His tendency to push everyone way might just mean that he needs some support all the more right now.   I won't do it because I care deeply for him or because he's been loving to me but I'll do it for myself.  It's selfish I suppose but I couldn't feel good about myself if I left him feeling that no one gave a damn.  I feel I owe him something, although I consider all "debts", both figurative and literal, well paid in full.   I just can't let him be completely alone and without a soul to care.  My husband and I fear that fate someday - no children and nieces and nephews scattered and busy with their own lives, who'll give a damn about us?  We'll have to be secure knowing that someone REALLY, REALLY loved us and cared dearly one point  in our lives even if one of us ends up alone. My brother doesn't have that to comfort him so I'll do what I can and feel good that I was able to show kindness to someone who could not show it to his family.  Some people might call me a martyr for that attitude but let them.   They don't have to live with ME.  I have to live with me, I have to look myself in the mirror everyday and I'd see something really bad if I weren't there for him.