Momma Mia made me cry over my own Mom.

This blog is supposed to be about my mom but often it ends up being about my feelings - I suppose that's natural since I'm writing from my personal point of view and there is so much anxiety and guilt associated with sick and aging parents that it would not be right to exclude that from my various topics.   I've not added any posts since Mom's latest health scare because I've had little to share that's positive.  I've not wanted to whine, moan or complain.  This morning though, I was overwhelmed by such a deep sense of sadness that I must write about it.

For several years now I've wished so badly that I had the money to buy a big house, hire a staff of 4 to help with Mom and then just live, doing all the things that I enjoy and finding some way to make her a part of it - making jam, gardening, sewing - just those day to day things.  My mom is still curious - she wants to watch CNN and PBS, the history channel or animal planet but the set up in her room at the nursing home doesn't permit it.  I want to have her at home where she can have HER favorite chair, HER large screen TV, HER 4 walls around her - but she needs so much assistance, I just can't do it all.   I know she's not as happy as she could be; she longs for company from her family but my brothers never see her.  The saving grace is a neighbor who's tried to see her at least once a week and a cousin who's gone by now and then over the summer.   

My sobbing melt down came as I was reading news and watching Momma Mia on TV.  Meryl Streep was singing about loosing her daughter to adulthood.  The lyrics have her remembering sitting at the kitchen table with her little girl, spending simple times just eating or doing the day to day things.   It just hit me so hard to think of my mom enjoying those times with me, then watching me get my first car and taking off, leaving her in the house alone.  I remember leaving for college; she and my dad weren't getting along and I was in such a hurry to escape it.  I didn't think about her and that she might feel abandoned with no ability to drive herself (she had a stroke during my delivery which left her partially blind and with epilepsy), no job, no money of her own - she must have felt awful but that didn't occur to me.  I was happy to get the hell out of there, to be free to have fun.  I left and didn't look back to see her sad face.   To be fair to myself - I did visit often and called her every Sunday but it's not the same.

Now she's in the same boat - she's stuck there and I end up driving away. At least I always come back!  She has people around her but it's a string of different people and she can't do the things she enjoys. All she wants is to sit in her comfy chair with a remote to a TV she can easily see.   That's not too much to ask and I can't make it happen.   She's never asked for much of anyone yet she's done a lot for others just by creating a home where we could all feel welcome and supported.     I hate that I can't do that for her. Even taking her to her little house isn't possible - it needs so much repair and would require total remodeling to accommodate her wheelchair.  

As for me, I also miss my mom but the "mom" I miss doesn't show herself often due to pain, hearing loss and naps.  She has a good sense of humor; she's smart and witty.  She's done so many things and remembers how to do most of it - she's a wealth of information!!  She's also wise - which I miss, she always has good advice for me, though now I don't ask much because I don't want her to worry.  There's just so much I want to know about her, about my dad, my grandparents- I want so much for her to look forward to a good meal, to taste freshly picked berries, ice cream when she wants it not when it's on the menu; to sleeping in and eating when she wants not on someone else's schedule... to sit hear her roses and enjoy their color and scent in the warm sunshine..  this is how growing old should be not in some institution where she's a "client" not a person.  

Ah well, my crying won't help her and now I've got a head ache... all I can do is try to get there to love her and make her feel as loved as possible.   If anyone out there reads this - do me a favor - go love on your family.  Young or old, listen to their stories and ask them about the most important things in their life.   Talk WITH them and Listen; share things WITH them and you'll feel better about everything!

Grandpa came through - sort of...

Update on my last post of March 30 - my friend grandfather WAS as sharp as we expected.   "G" went to his bank to advise them of this death and look for outstanding checks. She learned she was his one and only beneficiary on several accounts.  She has also been in touch with insurance carriers who advise her that she is the beneficiary of those accounts as well - it's enough to put her two youngest kids through college and start a nice retirement nest egg for herself.    

The two things Grandpa did not take care of - the title to his trailer home and brand new Lincoln  - will require that she go through probate in the state where he lived and died.   The attorney tells her that it will, by law, go to her father but she's okay with that.   She was so appreciative for the savings and insurance that she will not argue over these assets.   In the end, she almost feels sorry for her father because of what he missed not knowing his dad.  She's taking the high road and I'm proud of her.  I'm sure her Grandpa is too.

Suggestions from "youngsters" are just so annoying...

Over the past couple of weeks people have tried to be kind but it in the end, I come away completely annoyed and want to smack more than a few faces...   I should be more grateful of their attempts to be supportive but people are just so, well, stupid.  ..And, they don't listen.   Friends, coworkers and even my own family, ask about Mom and what happened to her..  They nod, looking me in the face, as I speak, they seem to understand. Then  they say something like, 'Well, can YOU move to take care of her? Why don't you move her here,  closer to you..."  .I want to scream, ' SHUT UP DUMB ASS!!  Don't you think I've considered it? That I've investigated all the possibilities?  Don't you think I would if I could get some financial help? Do you know how hard it is to find a doctor willing to accept a new patient who's this old and on Medicare?"

Then there are those who think they know about medical care - they recommend ibuprofen, Ben-gay icy packs or hot bathes.  Hot bathes? Ibuprofen?  Come on, it's all I can do to keep from doing a huge eye roll.  Mom is so very far beyond some simple fix like Icy-hot.  Her sacrum is broken!  That's in her lower back!  It's connected to everything! Any movement is excruciating!!

She's on narcotics for crying out loud!  Ibuprofen won't help her now. Nothing that simple will ever help her again.  They act so smug, like it should be so easy and clear cut.   It's not easy and  the solutions aren't simple.   Old people have old bodies and old bodies require special care.  No hot bathes, that means hot water and it could burn their thinning and sensitive skin.   No heat packs, that might also burn.  

This stupidity is due to ignorance; they are uninformed about old people.  They don't know what they're talking about  and they don't wait to listen for an answer or explanation.  This means that they really don't care.   They're just making small talk.  Really, I wish they'd just talk to me about something else  less emotional.   On a much larger scale, I wish people knew more about the elderly.  I wish people realized the limits old people face.  I wish they understood the issues old people face.  I didn't until I began helping elderly uncles and my parents .  I had no idea the complexities of medical coverage, drug interactions or the basics of tending to an aging body.   I wish there was some module in health class in high school that described what parents and grand parents might go through; drug interactions, narcotics and Medicare Part D.  They might have an easier time helping their own parents and would be less self-righteous when others are trying to do the same.



 

Mom has a good day and we split up the visits

God bless my niece!  She's visits my Mom every day before she heads to work.  I can't be there during the week so I know that either of my nieces or my sister in law are the next best thing for Mom.   It helps SO much that one niece is a veteran nurse (25 years) and the other is a nurse in training.  When the weekend rolls around and I get to town, I'll take over momma-duty so my niece can have a break.  

Today my niece gave me a good report on Mom: she woke up hungry and ate 75% of her lunch.  She's asking what happened and how she can get better.  The physical therapists helped Mom to the commode and into a chair.  She was in the chair for 1.5 hours and the nurses told my niece that she was pretty uncomfortable for the last 45 minutes, laying on the call button - but they let her sit there because it's part of her therapy.   It's a good thing that I wasn't there because I'd have put her back to bed myself.  I hate that she's hurting but I'm thankful her appetite is back.  For her to stop eating and drinking enough now would surely be the end of her.

For the first time since I heard that Mom was being transported to the ER, I'm a little hopeful - hopeful but guarded.  I don't expect anything as far as she's concerned.  I will say that I'm so thankful for my family - brothers, nieces, nephews and cousins - they've all called and visited to show support.  We help each other when we need it - that alone would make my mom happy and proud.

Mom's heart stops in the MRI and now narcotics won't touch her pain

Since my last post Mom's been through a lot - the worst part is that, even with narcotics, her pain is increasing and she's often in great pain.   I went to see her on Presidents Day weekend and found her pretty uncomfortable.   I and the aides did what we could to help her and when I left town, she seemed fine.  Because the pain came and went, we thought it was her sciatic nerve; massage and change of position relieved the pain.   That changed after I left town.  By Wednesday evening, she called my brother to ask that he come take her to the ER. A call to the doctor and more pain meds helped.   By Thursday the Nursing Home called me to say that she's in such pain, that she's suffering so much that they must send her to the ER.  I agreed, of course I agreed.  Once there, the ER doctor ordered an MRI.  Mom died in the MRI tube before it could be completed.

They revived her quickly with some chest compressions and -"some shot" as my brother tells me.  Her doctor tells us that her heart beat was erratic - not in regular sinus rhythm - and when they sedated Mom is caused her heart rate to slow so much that it stopped.  They only resuscitate her because they did not know if she or her family signed a DNR (do not resuscitate order).   That evening she was resting comfortably.. but the next morning was hell..  Mom woke up in great pain.  She yelled, she asked what they were doing to her; she called them all devils and demanded to return to the nursing home.  The pain began again and they've increased her pain medications 3 times.   The nurse tells us that the amount of medication she's getting now could slow her heart or cause long term issues with her memory or cognition.   

So, now I'll rush home and hope we'll find something to make her comfortable or that she'll find some peace.   By writing "find some peace" I guess I mean that she'll pass away.  I DO NOT WISH THAT MY MOM WILL DIE!!  But, to see her suffer is so awful.  It's as excruciating for us as it is for her.  I'd gladly take her pain for myself if I could.  She told my niece - a CNA - "no tubes, no surgeries, leave me alone". She won't tell us because she doesn't want us to worry and get all emotional but she'll tell my niece  -perhaps it's just too emotional for her too.   I realize it's only a matter of time. She's 90, something will cause her death sooner than later but I'm not ready for her to go.   I've been preparing for it for 5 years but when the reality is right here, right now, I don't want it to happen.  Perhaps her suffering is for us - making it easier for us to let her go to find peace.    I can imagine life no visits to nursing homes, life without depends or wheelchairs or dentures on the bedstand but I can't imagine life without my Mom.   I miss her already.

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.

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!

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 go...how 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. 

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.

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. 

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. 

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

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.....

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?

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?

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.

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. 

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. Yet....no 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.

Getting sneaky to do what's best for our elders

Dealing with family members while your parents or elders are aging is often THE most frustrating and hurtful issue we face.   I hear all kinds of terrible stories about family who take advantage of elders or who are in charge of money and health decisions but don't care what the elder wants.  After being so protective of my own parents for so many years, I have an immediate and physical reaction when I hear bad stories.  I get passionate and angry.  My blood pressure rises, and at my age that means hot flashes and nausea.  My reaction is also because I just can not comprehend how someone would steal money or belongings, or fail to consider the emotional and "quality of life" issues when making decisions about elder or sick people.   I just can not understand how people could take advantage of the vulnerable and the lonely.   It's all greed and lack of a conscious I guess.

The situations I hear about most are caused by financially strapped people who think an older person doesn't need much anymore so they feel entitled to Grandma's money.  Because Grandma or Grandpa says, "yes", when asked to a request for money doesn't mean they have it to spare. And, it doesn't mean Grandma or Grandpa understands that "yes" will compromise their finances.  Some people also seem to believe that their idea of what should happen is better than that of anyone else; they have huge egos or a control freak personality.  They want control and will manipulate, lie, coerce their elders or siblings to become the decision maker, have control, get money or belongings.   When I've talked with such people, they often have sane-sounding reasons for doing what they do but they look at situations from THEIR filter and don't consider what's best for their specific parent or elder. 

Sometimes the lieing and manipulating must be done by the "good" party - someone who comes into save the elder from another who's taking advantage.   An acquaintance of mine recently had to do a lot of work to get her mother out of a bad environment.  A grandson and his pregnant girl friend were living with the 78 year old.  The grandson completed credit card applications with himself as an authorized user - not responsible for paying the debt. He ran up more than $50,000 of debt in less than a year and grandma quickly fell behind on payment because he tossed the bills.    Grandma was buying all the groceries, including their cigarettes and alcohol.  When her daughter brought it up, Grandma felt that the kids needed her help and that they were there helping her.  She didn't s notice the dents in her car, piles of laundry, the dirty ashtrays everywhere. She didn't comprehend the added costs in water, heat and electricity.   She seemed relieved that grandson was "taking care of those details now..."  Actually, Grandson had not paid bills in months and Grandma was close to loosing her electric and gas service.  My friend was wise to collect more than 3 months of bills, canceled checks and receipts.  This was the hardest thing of all - to quietly collect information while someone was taking advantage of her Mother, but it was necessary.  Before doing anything she saw an attorney about filing bankrupty for her mother.  She also contacted the local county authorities about charges she could bring against her nephew for elder abuse and fraud. She was armed with information about the charges she could bring against her nephew and she got a restraining order. 

After collecting enough information, the daughter immediately went to work. She took Grandma to spend the week with a cousin and had Grandma sign a complete and durable Power Of Attorney.   With that she went to the bank and changed all of Grandma's accounts.  She closed the charge cards and changed the billing address for all bills to her own.   While the Grandson and Girlfriend were out, she put their belongings in garbage bags and placed them in the car port. She changed the locks on the apartment and warned the neighbors and land lord that they were evicted.  She found him and told him he could not return to Grandmas and gave him a copy of the restraining order.  She gave him $1000 in cash and told him that would help them get settled elsewhere.   Once that week was over, she still had more work to do  - there were legal issues with her Mom's debt but Grandson/Nephew was gone so dealing with Grandma/Mom was easier.  She sold her Mothers car, moved her to assisted living and now handles all of her business affairs.

This case took some sneaky work and it was the right thing to do on behalf of Grandma/Mom.  I suspect that the daughter glossed over the details of the Power of Attorney.  I doubt she told her Mother just how much power and control it would grant over Mom's affairs. I suspect the Daughter realized her Mom was forgetful and becoming needy.  In the strictest legal sense, Grandma/Mom was probably not 100% competent which might nullify the PoA if it were challenged, but WHO would do that?  Grandson/Nephew didn't have the funds or know how to challenge anything.  Grandma/Mom's competence was borderline and experts could probably be found to argue either way.    The Daughter is doing the right things at the expense of the relationship with her nephew and her Mom's grandson.  However, the relationship was not positive for Grandma, it was a life-sucking parasite.  Even though Grandma misses that part of her family, she is safer without them and that's the ultimate goal.

Sneaky family hurts grandma, how can i keep my brother sister from stealing from mom, sister brother lied to get POA power of attorney

Being a necessary pain in the ass - my latest role

I am a pain in the ass - or at least I'm made to feel that way all too often.  The past few weeks with each call I make on Mom's behalf I get attitude, impatience and the brush off.   My latest situation is Mom's dentures.  Nearly two weeks ago her lower denture was lost at the nursing home.   The social worker there assured me they'd take care of all the arrangements to get a new denture - except payment of course.

Without the denture Mom can't eat many things and I worry that she's passing over nutritious food.   She can talk fine but when tired she is not clear. We want her to meet others so speaking clearly is important when those hear by are hard of hearing.  And, for the sake of her dignity, she wants her teeth back;  she doesn't want to appear like a "toothless old crone".  On Monday I started to call the social worker (SW)about the appointment.  I leave 2 messages - Nothing. Tuesday I call twice and leave messages.  Nothing.   Tuesday late afternoon I reach another social worker who tells me that Mom's SW has been out sick. (Note no back up to check her messages or forward the phone! BAD, bad)  She checks and says they are waiting on the Transportation Coordinator to schedule the appointment.  Coincidentialy, the Coordinator has left for the day (it's 2pm where Mom lives :\). 

Now it's Wednesday and I call again.  I called the main number and get the Exec Director on the line and learn that the Transportation Coordinator is probably gone already, again...  Hmm..."I've called for two days now.  I really want to know if she's made an appointment for my Mom" (translation, I'm not hanging up until I have an answer). The ED agrees to "go to the other end of the building to check." (Heavy sigh)  Next thing I know, the phone rings and Pam answers.   I have to explain things all over to Pam and ask if she's the Transportation Coordinator.  "Yes. Why!?"   Her tone is immediately defensive even though I politely say, please and thank you and "I know you're busy, but ...".  She tells me they are waiting on the denture service to verify Mom's status with Medicaide.    I say, "that's fine but I'm willing to pay because I want her to have teeth so she can eat". Pam doesn't care. Pam insists that they are waiting on the denture service; it's "their fault." even though I've not said anything negative about the delay. (I'm beginning to understand why they let her leave early everyday.)  I ask for their number.  This time I get a "tsk and ugh" and I could feel the eye roll through the phone.  I hate TSK's... I'm not some whining child - I'm a grown woman who's trying to do something for her Momma!!

I call the denture service and get more attitude.   I finally say, "Look, I just want to get my Mom in there so she can eat; I'm worried that she's not eating enough because she can't chew most foods well." The woman's attitude softened a little.   So - the woman there asks if I'll hold, "As long as you need." I tell her..... I hear her talking to someone, "open, now bite down. That needs to sit for a few minutes. I'll be right back..." She comes back to me rather out of breath and apologizes, "There are only two of us to do everything..." She explains that they are waiting for medicaide to confirm Mom's status and if they'll pay.  I tell her that it's okay, I will pay for the teeth.  If Medicaide comes through before the appointment and billing are done great, but it doesn't matter.  With that news, she's nicer. She's willing to call the nursing home to make an appointment for the next week.   She's trying to rush me off the phone by now but I don't let her get away until I ask that the appointment be after 2pm so my brother or sister in law can be there with Mom.  I also tell her I'll call the nursing home to confirm the time.  (Honestly, I don't want to talk with Pam again but I do want to be a bother to her since she was sort of rude. Passive aggressive perhaps, but I don't care.)

So - 3 days, 5 messages, 4 phone calls later - someone will call someone else to set an appointment for Mom's teeth.  Though Mom still doesn't have an official appointment, I believe it will get done.  If it's NOT done by tomorrow afternoon, no one will be surprised when I send attitude, tsk's, heavy sighs and eye rolls through the phone.  (I've actually learned that silence after a question, especially "WHAT??!!" is really, really effective. It's like they think you're ready to blow up.)  They immediately get nice and escalate your issue to get attention of someone who can actually DO something about it.

I've learned NOT to get pissy and mean even though often I really, REALLY want to.  I've learned to politely tell people who I am, why I'm calling and what I need.    I generally do not say "I want", I say "can you help me with..insert  topic here ". I always say please and thank you -  always "thank you" even though you don't mean it.  Don't include any sarcasm in the "thank you" they can feel that immediately.   I keep logs of who I speak with and note who will take what action by when.   When I call them back I remind them, very politely, " After we spoke last week, I hoped Mom would have insert concern here by now.  How that's coming?"  I never blame; never say "you".  When it's necessary I will say, "Someone should be accountable for this....insert your topic here."  That only comes after lengthy discussion of the facts, dates, details - so they are not surprised when I expect someone to take responsibility. When I, or someone in my family has made an error, I own up to it immediately and I work to fix it. They can't accuse of us being unreasonable.

All of this is really discipline. The discipline to take detailed notes, to keep every thing straight, to be responsible. Discipline to call or show up when I say I will. I pay when I say I will.   Thus I get especially frustrated when I'm dealing with people who make this sort of thing their profession and they are rude or can't get things done.  I get frustrated when they act as though my calls about Mom's care are a surprise and inconvenient for them.   They should expect calls and be prepared to answer in a professional manner.   They should NOT treat family members like a pain in the ass! 

It ticks me off, it's hurtful and I HATE it but I must take it.  They are in the power position; they are there working with my Mom.  They are there with her daily and I don't want them to take their frustration with me out on her.  I must say that has happened only ONCE after she had surgery years ago - I'll save that for another day.   95% of the time Mom's care givers are nice, patient and respectful.  I'll deal with their attitude as long as she's content and feels good.