The Journey Continues...the long goodbye

Hello everyone,

I am not new here, just don't come that often. My mom has been on her Alzheimer's/dementia journey now for almost ten years, she was diagnosed July 2003. From what I've read, it probably began up to ten years before her diagnosis and now looking back, some of the strange behaviors make sense. Mom was always an extremely independent woman, very secure, very sure of herself. She left school after 6th grade, she had to, because of Hitler, she is Jewish and Jews were not allowed to be educated in Germany. She was in ten slave labor camps for 2-1/2 years and managed to survive. She met my dad after the war, they left for the US after my sister was born and then went on to have two more girls, me and my other sister. My dad passed away when he was 51, leaving mom at the age of 41 to raise three teenage girls, I was the youngest at 13. Mom got a job and eventually became a department manager at Wards, then managed three departments, with a 6th grade education. She was responsible for hiring her staff, managing and ordering her inventory and taking care of customers and did this for 17 years. She volunteered for several organizations, played cards, and bingo. She was very interested in politics and watched CNN and C Span. Never did I think she would fall victim to dementia and yet she did. She is now 91 years old and only recognizes me and my sisters, on a good day. I feel very fortunate that I found a facility that cares so much for their residents. Believe me, it's not perfect, the staff are not perfect, but being there just about every day, I can see how hard they do try.

I tried to care for mom for a year in my home and I became very sick, emotionally as well as physically. I have fibromyalgia, depression and anxiety. My sister then took her for 3-1/2 years, then four years of assisted living and now where she is living, just 5 miles from me.

I realize there are some here that wouldn't dream of placing their parents or loved ones in a skilled nursing facility. Sometimes that simply is the best answer and sometimes you are lucky enough to find a good one. Well, not all luck, I really did my homework, for many years. I was just lucky that it happens to be close to my home.

I do have one question: Mom remains on Aricept and Namenda, now for ten years. I wonder if the meds are still working? I realize the only way to find out is to take her off of them, but if I do, and she takes a severe decline, and I put her back on them, I was told you cannot regain what was lost. Anyone here have any experience with this?

Thanks for listening/reading,

Miriam

Hi Bella

And thanks so much for responding. I agree with you about dementia, except my mom is VERY aware of her memory loss. She completely isolates herself in her room and refuses to socialize at all with any of the residents. She tells me "they are a bunch of nuts"...also tells me I put her in an institution, when she is on an alzheimer/dementia floor. She doesn't know the difference between memory loss and mental illness. To her, the residents are mentally ill and she feels she doesn't belong there. On the other hand, she doesn't want others to realize how bad her memory loss is, so she doesn't speak to anyone. I know how ridiculous it sounds. I do believe it is the Namenda and Aricept that is keeping her at this level and I don't even know if I am doing her any favors by keeping her on the medication. I see no quality of life, spending all her waking and sleeping moments in her little room. Staff tries so hard to talk her into coming out and joining into activities but she refuses. The only way she will, and it is rare when she does, is when I go and talk her into going to something and then I have to go with her. And I find it SO depressing, watching all the residents. Most of them are in a later stage than mom is. There is nothing good about dementia, nothing at all.

Again, thank you for responding. It would be nice if there were more people that were active in this forum.

take care

Miriam

MT Lady .......

  Namenda ... is one of the drugs that my Mothers new doctor took her off of late last Fall. She was on it for a little over a year - but this doctor actually believes less medication for a 95-year old is better than more. It seems that the only difference without the meds she was taking is that her occassional nightime episodes have stopped. Of course, no kind of medication will bring back her memory, stop its deterioration or reduce her level of dimentia - but it was surprising that the lack of Namenda actually improved probably the most frightening of her symptoms. The last nightime episode was last August, and it put her into the hospital (from her own home with a live-in caregiver). Her typical episode would be waking up in the middle of the night - then screaming that someone was in her house and trying to kill her. She once left the house and ran over to her neighbors house at 3am ... and once called the police herself ... and the last time, she actually had developed enough trust in the live-in caregiver to call for her. There were three times in a period of a year - not a lot of episodes - but they were horrendously frightening to her.

  One other thing - from your story of your Mothers history to current reactions - it sounds like she is a very strong-willed person. Mine is - as well. Picture, if you can, a 95-year old who was driving her 20-year old car until 2-years ago - still buying weekly lottery tickets until last August (and hiring a driver or taking a cab to get the tickets) - still wanting to control her money (even though I have been paying all of her bills and handling her taxes and small investments for three years) but understanding next to none of her bills - and refusing to ever go to a nursing home for the past 18-years, since my step-father died.

  Upon leaving the hospital (first time with any psychiatric help or observation) in May of 2011, her primary doctor said she could not go home without having 24/7 care in her home. I live over 20-miles from her (for the past 23-years) and am fighting several life-threatening illnesses myself - and my house is a two-story with both bedrooms upstairs (impossible for her to climb). So ... a caregiver in her home was the only option ... not to mention there was no way she was going to move in to my house (her own words)!

  The next 15-months worked well. She had her independance. She was able to boss around the caregiver (and she did like that) - although one of them did quit and had to be replaced. She kept writing the checks for her hairdresser and for the weekly groceries - giving her a sense of purpose and control ... while I kept writing the checks for her utilities, taxes, insurance and other bigger bills. I did get over to her house every week (at least once weekly) to spend some time with her - and called her daily at around 5pm so she knew when to expect a call each day. It worked well for 15-months until her last evening episode which sent her to the hospital for tests and observation.

  Please note ... those 15-months were expensive from my Mothers account. Between the cost of the caregiver and operating cost of her home + food, insurance, etc. - half of her lifetime savings disappeared.

  When leaving the hospital the last time (last September) - her doctor, then the staff Psychiatrist said she could no longer live at home - even with a 24/7 caregiver. The caregivers are just not adequately trained - as a registered nurse would be. After walking thru 6 different facilities - from marginally OK to very nice ... I was directed to a facility that specializes in dimentia and parkinsins - only!!!

  She has been there for the past 9-months and even though she will occassionally still ask "when will she be going home" it is a good place for her. You see ... she always has been somewhat of a "loner"! She never would let any of the neighbors get close to her - even the same for her few close friends! One of the philosophies I really like at her Assisted Living Home is that they will not allow any of the patient residents to sit in their rooms alone (unless of course they are sick). They have a huge program of planned activities daily, they have live-in animals (dogs and/or cats) for therapy and a relaxed atmosphere, and they do have entertainment that comes in 5 or 6 times a month. In good weather, they have one outing a month and provide the transportation and assistance for it.

  My Mother is virtually always out of her room. She has become a "bingo addict" and she loves the entertainment (even if it is just a little corny sometimes). The big screen tv in the family or great room often has DVD's of "I Love Lucy" shows or "The Dean Martin Show" or others from the 60's and 70's! They have a large but very nicely done Dining Room with table clothed tables and very decent food. I've eaten there twice so far.

  Now ... this is not cheap, but it is less in cost than paying for a live-in caregiver and the upkeep of a house. For 9-months, I have gone to her house at least weekly for mail, to check the vacant house for any break-ins and to water her few plants. Last Friday, her home was just sadly put on the market. It had to be. She never will return to it ... the rest of her lifetime savings will be gone by next Winter ... and the sale of the house will keep her in this fine facility for another two years beyond that - if she is able.

  Besides the emotional difficulty of dealing with a parent having dimentia, the costs ultimately have an impact too. Over the past two years, I have done some research in financial assistance. If someone has $20K a year coming in (as my Mother does with SS + a small pension) as income, there are very few government programs available for cost assistance.

  Medicaid requires that the patients total net worth is no more than 30K - and that includes a house, car, bonds, mutual funds, etc. Once on Medicaid, the government will pay for a nursing home. TRUST ME - you don't want to send her there if at all possible. At the least, they are under-staffed, often dark dingy places - that shout "this is where you will die"!!@!!! If it's a Medicaid home, it is likely to be that way! I hope there are exceptions!

  There is another assistance program, but the person has to be either a veteran or the spouse of a deceased veteran. Here again, it is only available to people who have nearly nothing left financially (I think down to their last 30K of total assets). It is up to $1000. a month of cash, and if the person has SS and/or a small pension - as in my Mothers case, she could total by then be bringing in about $3000. per month.

  Summary ...... when I see the joy on my Mothers face and watch her clapping to an Elvis impersonator performing before 30 or so patients, I know for a moment at least, she is happier there than she ever would be now at home. Same goes for a Bingo game ... she actually has a reputation there of being a good bingo player. For your info ... the name of the place is "Silverado" and they do have many facilities in several states. My experience so far in 9-months, is that the caregivers I have talked to do care ... and there is a registered nurse on staff - 24/7!

  If the day comes for you to make that decision, try to think that this will be for her best interests - and try to find a place that specializes in the care of dimentia.

Peace ... and good luck to you ... and yours!               

Thank you for your input...very much appreciated. I may not have been clear in my previous post. My mom currently is in a skilled nursing facility, on a floor for Alzheimer's/dementia. The facility is rated 4 stars out of 5 and has been for the past 10 years. They are considered one of the finest in the northern suburbs of where we live. And, thankfully, they accept Medicaid. They have a very long waiting list for Medicaid. My mom was diagnosed with Alzheimer's ten years' ago and at the time she asked to live with me, she was so afraid to be alone. Such a strong, independent woman all her life, but to this day she is very aware of her memory loss and it frightened her. So, I cared for her for a year in my home, with the help of a caregiver because I worked full time, but it still made me very sick, physically as well as emotionally. She then went to live with one of my sisters for 3-1/2 years, then went to private pay assisted living, a beautiful place with wonderful care and paid $5,000 a month for almost four years...and ran out of money. During that time, I began the process of filing for public aid...what a nightmare. We still have not hear if she will be accepted, but where she is now took her in with her paying one month's rent, $9,600, and that wiped out her money completely, so now she is public aid pending and living there. She has a private room, which is paramount for her. She could never live with anyone. She was never a social person and for ten years now has completely isolated herself. These places where she has and now lives have activities all day long; she refuses to go. She will go to bingo, but that is it, and she goes to eat her meals in a dining room where she does a little socializing with two people at her table. It is not that she is that high functioning; it is she believes that she is, she views herself as not needing any help when in reality she needs the help of that specific floor. Her room is very small and yet she has no idea where her clothes are. If she isn't prompted to wash up, she doesn't. She definitely needs their help and believe me, I am SO grateful that I was able to get her in this facility as a public aid resident. The staff are truly wonderful, they really care. She has been there almost three months, and I go there almost every day. I make myself known, I want them to know her family is watching. And still, this is so hard, so difficult to watch her decline.
Again, thanks for responding,
Miriam

To MT Lady ....

  It does sound like you hit on a winner with the skilled nursing facility your Mother has been in. From my search for a facility 10-months ago, I found one place that was beautiful - but it was the most expensive of those I checked - and did offer single rooms. I too, felt that Mom would never want to have a roomate, but as time went on, and I found many did not even offer single rooms - I decided to concentrate on a room with one roomate. The difference in cost, at the most expensive place, was close to $2500. per month more for the single room!

  The expensive place I mentioned above also did have a small amount of beds approved for Medicaid, but as of last August, the waiting list for a Medicaid room was over two years long ... and first preference was given to an in-house patient before anyone from the outside. It does surprise me to hear that a hefty entrance fee (or whatever it was called) was required before being accepted thru Medicaid. Otherwise, it sounds like the facility you found is very much a winner!!!!

  Please don't take this as a criticism, but is there a chance that your going to see her almost every day might be keeping her need or desire to meet a new friend to a minimum. Again, I think of my Mother, and in the 9-months she has been there, she has not made a close friend. I do think the dimentia kind of keeps that from happening. That is, the "lack of trust" in general was the first symptom I noticed a couple of years ago in my Mom. But I think encouragement in some way is necessary.

  A little over a month ago, I got a very rare call from Mom (with the help of a caregiver on staff). She seemed more distressed than normal. When I went over to see her, Mom wanted to talk to me in private and then said "I feel so lonely here"!!! A few minutes later, one of my two favorite caregivers there walked past - and I called her over. In front of Mom, I mentioned to the caregiver that my Mother was really feeling lonely. It greatly surprised the caregiver ... and she told me that Helen has never said that to anyone here.

  There-in lies a likely common problem with a dimentia patient - especially one that was never really out-going in personality. She still trusted me enough to tell me - but did not (and may never) trust anyone there well enough to state her real needs. At least, one of the better caregivers there now knows of the uneasiness of my Mother - and, thank God, there are caregivers there that really do care ... makes me feel better!!!

  Well - maybe, just maybe - that 3-months may not be long enough yet for your Mother to feel comfortable enough to allow herself to be open to others there. But ... glad to hear there are some places offering Medicaid assistance with "good" caregivers - and with programs to keep the mind busy!

P.S. - don't beat yourself up about any of this - you know you care - that is what matters.

Oh yes the old "take care of yourself thing". Well.... there is only 24 hours in a day. Truthfully speaking after I give my mom a bath and wash her hair then blowdry and change her into her night gown for bed I am dead tired to do it all over again for myself. Especially since doing this whole ritual is against her will so I am fighting her to get into the tub and the same to get out.

Yes I would love to take a long hot bath and read a nice fashion magazine then eat a peaceful dinner while having a lovely conversation with a few good friends. In order to do that someone would have to be home with my mom and that's not possible so if only one of us can get the royal treatment then I rather it's my mom.

I have not gone out socially since 7 years ago. At least I have a job and a roof over my head so I can't really complain. I always think it's actually better to not get a break because I'll get too comfortable and have to come back to this again and I will then hate my mom.

My 2nd brother maybe in denial about my mom but mostly it's because he doesn't want to deal with the illness. Not everyone is a saint like us. The oldest brother has health issues so he's in worse shape. I forgive him because I wouldn't want to be in his shoes. Whatever. I was born to be my mom's caretaker and here I am. Voila!