Assisted living home for dementia

Hello ...
I kind of hit a brick wall yesterday when going to see my mother at her "assisted living home for dementia". But first, a little background:

Mom was living alone (at her insistance) from 1995 to mid-2011 - and was driving her car for approximately that timeframe ... until she fell in her Kitchen and could not get up. She went into the hospital for observation and when released, her doctor said she needed 24/7 care in her home. That was at the age of 93!

For the next 15-months, she did have a 24/7 caregiver living in her home - and actually kind of got used to it! I think maybe it was a daughter-like relationship for her - since the caregiver was in her mid-50's. However, during those months, Mom had three different episodes - all in the late evening - all screaming that someone was in her home trying to kill her.

The last episode was very bad, she was admitted into the psych ward of the local hospital ... and after over 4-weeks, the psychiatrist and her primary doctor both said she needed to go into a home that had nursing care or with a RN on staff. Mom's caregivers at home, were no longer able to contend with the level of dementia - in the psychiatrists opinion.

So ... the search for a home started ... and luckily one was found within two weeks or so that specialized in dimentia patients - and that had a lot of "home-y" type of things going on there. She was moved from the hospital to the Assisted Living home last September.

I suppose the very typical reactions happened - and for months - on and off. That is, she would ask "how long am I going to be here" or "when am I going to go home"? But, gradually she did get used to many of the nice aspects of this Assisted Living home - and I saw her enjoying herself very often when visiting.

Now ... over the course of the past 26-months of care (either in her own home or in the AL home) - her savings have dwindled down to pretty low levels. For 10-months now, her old home has been vacant and has been costing $500. or so/month to just barely maintain - with taxes, insurance and basic utilities.

Since she will never be going back home, and with her money account getting smaller, her home had to be put on the market for sale. The months of May and June were spent doing fairly minor things to her home - and it went on the market a few weeks ago. The home went into contract in a short period of time - with a closing set-up for the end of this month.

First ... the money from the sale of her home will allow her to stay in her current AL home - and delay or avoid going into a Medicaid Nursing Home. Second ... it is one responsibility off my back - going to her house 3x a week the past two months and once a week for the past 18-years. I am going thru major medical problems myself - including advanced prostate cancer (2+ years), kidney failure (2+ years) and COPD (5+ years).

Yesterday, I brought over to Mom some lighter weight clothes - her request from last week-end - in the colors she asked for. She immediately got nasty with me, wanted for us to go into her room for some privacy - and then it escalated to a level I hadn't seen for at least a year.
She did make up a few innocent-type of stories (signs of her deteriorating dementia I think) - and then (as she had been doing in the past for at least the last 15-years) complained to me that she doesn't know why she didn't have a daughter because "they do so much more for their mothers than sons do"! It's been well over a year since I've heard that criticism ... but she was telling me that over and over - for at least the past 15-years.

I did see a therapist, 18-years ago, for a number of things going on at the time - and the therapist told me my mother has been laying a guilt trip onto me since I was a kid! So ... this isn't from dementia!

I do not have any brothers or sisters (hardly my fault) - my Mom had been married three times and was an alcoholic (also hardly my fault) - and now ... my question for me is:

"What to do"???

Any thoughts would be appreciated!

What do you feel in your heart that you should do? Also, it will get worse, as litterly they go back in time to a kid. Mentally, they slip back as a kid and eventually, a baby but trapped in an adult body. It is extremely difficult and emotional for everyone. There will be "up's" and "down's" as they will also hallucinate as well. I had to learn during the down times to not let it get to me, as they do not realize what they say. You do what you are doing, continue to love, cherish, support her. We had to sell my gma's house too. And not all Medicaid homes are bad, it is just finding the right one. If you aren't able to keep her in that home, which I suggest to do as long as you can, but start looking for one just in case. Don't call ahead and schedule a tour. Show up out of the blue, on the spot. Talk to the residents, see if they are happy or not. By doing that you help cast away the not so good homes, and you see as they truly are. Visit her often, at all times of day, don't get into a pattern of visitation. I used to work in a nursing home, a pretty bad one at that, and the CNA's would let them be soiled for hours on end, til a diaper rash happened, it was horrific. The only ones that got the best treatment were the ones that had visitors that showed up on a routine. After moving Gma to a home, I showed up every day at different times for awhile, then I moved to every other day and I'd always change my habbit, and have some days I'd show up 3 days in a row, miss a day come back so on. They want a company to look good, to keep business going, its about money basically. So I did that to get my Gma the best care possible. I even stayed the night a couple times. That facility was Medicaid/Medicare and was really wonderful. I paid attention to all patients there, keeping an eye out for faults. Everyone was treated well. I am thankful I found that facility, but it is a man hunt. The facility had multiple buildings, ranging from assisted living to nursing, to respite to dementia to alz..it was nice. If the needs changed, she just changed buildings and rooms. Her care stayed the same - good decent care and they cared. I hope this helped, just some ideas to think about.

Update .......

  I saw Mom yesterday and talked to her buildings nurse and to the social director. First ... she was much better (state of mind) - but looked and acted as though she had aged many months in a week.

  It was time for the patient review with the nurse and social director, and Mom has not withdrawn at all ...... that's a good thing.

  And the group did find her leather coat - that was missing the last time I was there. It always helps to believe your parent isn't getting ripped off at the Assisted Living Home.

  I had lunch with her there ... forgot how small the portions are! And believe it or not, too much salt on what I think was Beef Chop Suey - modified with non-chinese vegetables. The vegetables were very good though - fresh just like I've been told they use.

  Another day - but this time a pretty good one. 

Thanks for the kind thoughts and words.

  I wish there was someone else who could step in. I'm kind of disgusted that my Mothers closest two neighbors, for over 10-months now of Mom being in Assisted Living, have not gone to see her once - or even asked me how she's doing. For the past two months, I've been over to her house thre times a week (average) and for the eight months prior to that, was over to her house weekly. I guess the one neighbor that my Mother always asks about, got what she wanted from my Mother in the past ... at least one small diamond necklace (that I know of). And the other neighbor always has been so full of himself, if someone isn't praising him for one thing or another, he doesn't want any part of that person.

  Very sad!

Mom was used to "buying love" - at least from others.

  My youngest daughter - and an old friend of my Mothers (closer to my age though) both have been very helpful the past two weeks over at Mom's house. Coincidentally ... those two are on my Mothers old Living Trust as Successor Trustees - in case (or whenever) I cannot be the Successor Trustee. They both seem to have been working together pretty well lately - so that gives me a sense of comfort if I'm not able to do the things I have been doing on my Mothers behalf at somepoint in time.

 

  When I was in at my Oncologists office Thursday, a volunteer from the American Cancer Society was there - and spent a little time talking to me. He lost his wife to cancer just over a year ago ... and I think he has me convinced to seek a local support group. My social life has been nearly non-existant for more than to 2-years now. I'm not at all a hermit, but I have resisted developing close friendships over the past two years or more.

  Your point of forgiving my Mother was well taken. I think I have. Actually, if I hadn't, I don't think I would still be caring so much about what happens to her. And ..... your point about dementia being more difficult on the loved ones ... is very true ... I think!

  The forum at HW is something I found by accident a little over a month ago, and sincerely hope that I can bring as much or more to the forum - as I am taking away from it. It is a solid step forward in this most recent chapter of life.

Thanks again ... and peace to you.

Hello Minette ...

  Couldn't help but notice that you are new to HW - or at least appear to be. Let me be the first to welcome you. I will be giving the Cancer Society a call to find an appropriate support group for meetings.

Thanks again.

  I just got back from my Mothers house, and my youngest daughter worked her head off cleaning up the garage. She and a friend of my Mothers spent much of this week-end doing the final preparations for the closing of my Mother's house.

  With the closing scheduled for this coming Friday, I will soon have one large monkey off my back. Sad to see the end of an era ... but it's going to enable Mom to stay in her Assisted Living arrangement thru at least 2015 - because of the additional finances before having to consider a Medicaid Nursing Home.

Best wishes and peace in your life.

huggss gizzy.... i know how chemo is on the body I been off and on it since 2008.
you hang in there!
remember zofran zofran lol (top of line nausea med)
I love my zofran. And remember to rest, and it is ok to let others to help. If you ever need to talk about it, let me know!

I hear you Gizzy. We sold my parent's house about two years ago, and whenever I drive through the area I am reminded of all the good and tough times that we had -- but all in all, they are memories. I miss my Dad so much and miss my Mom being around the corner, but she is in good hands at her new home, and my siblings are taking great care of her. Take care Gizzy, and just wanted to know I'm thinking about you!

To MT Lady:

   I understand the financial situation - being from Illinois myself. There is one program not well-known, and I am certain it's a federal program. It is available only to former members of the armed forces or their spouse.

   If your Father was in the armed forces, and your Mothers total estate is worth no more than around 30k as I recall - then she complies with the requirements. The benefit is somehow prorated, but it typically is close to $1000. per month for the rest of her life.

   That's a drop in the bucket for Nursing Home costs, but it is available to people on Medicaid - so it ends up being a supplementary small income that helps with medication costs, miscellaneous items and can be partially saved for - eventually the final costs.

   Once my Mothers lifetime of savings, and the balance from the sale of her house tomorrow get down to in the area of $30,000. total balance left, I will apply for that aide, as well as, getting her on Medicaid (which I think has the same net worth requirement).

   It's not a great deal of comfort, but at some point, it will be needed ... as long as she survives to that financial point.

   I think you're fortunate to have a Nursing Home with a 5-star rating close to you - and one that also (as I understand it) works with Medicaid or has some Medicaid assigned beds. Sorry to hear that your Mother is that difficult. Mine can be - but she isn't always. It's tough!

Best Wishes to you and your family

    

Sometimes it's the little things that count!

   Yesterday, two of my Mothers friends went to see her ... and brought over a couple of pairs of slacks and blouses for her - lightweight for the Summer - and some of the balance from her house that was just sold.

   They went thru her little closet and grouped or paired slacks with blouses or lightweight sweaters ... asked her if there were any she didn't like ... and then hung them up as "outfits" for the caregivers when Mom is being dressed. It raised Mom's spirits!!!

   Then, one of the ladys took my Mothers lipstick (for color) and said she would pick her up another lipstick ... then asked what kind or shade of powder she wanted so she could pick up some basic make-up. I hear that Mom really liked that attention.

   I was just a small gesture ... but it was highly appreciated!

   I'll go see her today - dying to hear her story of her visitors yesterday! 

To Lonie:

   Thanks for your thoughts ... I was beginning to wonder about my Mother's few friends. But they DID come thru like champs on Friday.

   My folks used to show dogs - 30 to 40-years ago, so I brought over a throw pillow yesterday that I think was darned ... for her. It was of her first Westie "Buttons", and she just held it on her lap the hour that I was there. And I brought a large framed photo of their first two West Highland White Terriers ... and asked one of the caregivers if she could make sure it was mounted on the wall over Mom's bed sometime during the week.

   The house closing went fine. I still have quite a few things in my garage, so this week's goal is to get rid of some of my things, so I can move some of Mom's things in with me ... mainly seasonal clothing changes. And then, there's two suitcases + two boxes full of photos ..... that's going to be tough going thru! I guess it really isn't quite "time to close the book"!

Best wishes to you ... and thanks!

Gizzie -- did they hang the picture for you? We did the same thing with my Mom's room -- put a lot of of her memento's in her room. We have a picture of my Dad up there too, and she told me she likes it there because she can have words with him because he left her too soon. Then she gives a little giggle and she gets a little teary eyed. She really misses him...but they were married for 61 years!

Hope your Mom continues to do well.

I was at the Psychologists office today .........

   I did a little going back in the past with him - namely about losing three close friends to death in the past 7-years ... and about two failed relationships in the past 15-years.

   But ...... I did also want to know the differences between Alzheimers and Dementia. I couldn't possibly repeat what he said by memory but ... the Dementia is much more common and is essentially the deterioration of the brain cells. Alzheimers is much more complicated than I had thought.

   And while Dementia is typically a progressive deterioration of memory when someone gets older, Alzheimers can strike people in their 40's. This Psychologist specifically works with people with terminal diseases, and he stated that his youngest patient with Alzheimers died in his (her) 40's!

   Summary ... as I had suspected, my Mom has Dementia. My Grandmother who passed over 20-years ago just may have had Dementia - even though everyone called it Alzheimers. It is possible that 20-years ago, Alzheimers was misdiagnosed. The Alzheimers is more neurological in basis and can be treated with medications - to a degree. The Dementia can be caused by excessive alcohol or any other means of brain cell destruction - and it to can be treated to a degree, but much differently. 

   We didn't get into which of the two, if either, is hereditory. Just the bare tip of the iceberg ... of information.

  

Just an update ..........

   The last couple of times I've gone over to see Mom has been on a Monday now ... tried early aftrnoon last time. She was at the Beauty Shop there, so I stopped by to say Hi ... then went outside of that building to sit for awhile. It was another beautiful day out.

   When she came out, I suggested staying there because the shade was good - and her eyes are very sensitive to the sun glare. While we were out, a few of the house dogs came by - one sat next to us ... a half dozen of varying workers came by saying "hello" ... and about the same amount of patient/residents came by.

   What I saw in my Mother, was a sense of peace ... and actually a sense of belonging too. She started telling me some stories - and her stories were about where she used to live - about different people. It took me awhile, but I finally figured out she was really talking about where she's at right now - not her old home.

   Of course with dementia, she creates some things ... but now she's creating things (and people) from her surroundings at the home for Assisted Living. I really think that if she were able to go back to her old home, she would feel lost there. There's activity around her often even if she may not want to be a part of it at times. It's still there.

   After a little under an hour of outdoor sitting, I asked her if she wanted to join in on the Bingo game that was already going on inside. While we were sitting out there though, two of the care-givers that came by complimented her hair. Yeah ... her hair is still a big thing to her. She goes to the beautician there every other week ... just like she used to at home.

   Then it was time for Bingo. A nice day!