some thoughts about "memory care" and loved ones

Discussion in 'Bad Dog Cafe' started by thunderbyrd, Aug 15, 2019.

  1. thunderbyrd

    thunderbyrd Poster Extraordinaire Silver Supporter

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    some will remember my posts from 3-4 months ago about my mom and dementia, and that i was able to get her into a very good memory care center, a clean and healthy place with good staff. she is being very well taken care of. (and let me inject a sincere thanks to all of you for your kind and thoughtful words. fine bunch of people here.)

    what brought things to the crisis point with mom is that my father went into the hospital with an infection in his spine. dad went into the hospital on march 15th and was in the hospital or rehab until about the middle of june. during most of the time he was there, he was pretty much out of his head, delirious. my sisters and i tried to take care of mom, but things just kept going from worse to more worse. in those earlier posts, i wrote a bit about my mom's rages. tell her "no" on anything and you are just asking for trouble. it was a very serious concern that she would hurt herself in one of her angry fits.

    the other day i was at my dad's house, waiting to take him to an appointment and one of the men from dad's church had come over to visit. this is a well-meaning, good man. he started asking dad about my mom and seemed to be of the opinion that dad should bring my mother home now. he made a comment something along the lines of "i've heard that people really go downhill in those places."

    that bothered my dad and dad didn't really know what to say to him. I, never ever at a loss for words, gently and kindly told him that there was more to the situation than people know about and that we had put off "putting her away" as long as we could. i don't know if the man paid any attention to what i was saying to him at all, but later my dad praised my even-handed handling of it.

    but i want to explain about this "going downhill" business. first, dementia only goes in one direction, downhill. make your loved one as happy as possible, help them as much as you can, but they do not get better. the other fact about this matter is that once the family actually puts their loved one into a memory care place, that loved one has already progressed pretty far "down the hill'. we did not "put mom away" as soon as she started showing symptoms. she has been in this for about 4 years. it became a problem when she refused to go and get diagnosed, (rage), was not to drive anymore(driver license expired, rage) and when my father became so sick he could not go up the steps to go to bed and get to his business papers (rage). (i also found out from my dad that mom would get up in the middle of the night and scream and try to tear the bedroom door down)


    i am very sure that most families do not put their people into memory care until they pretty much have no other choice. the money alone will prevent it.

    the fine, good people at my dad's church have just seen a certain side of mom over these past few years. she is perfectly capable of putting on a good, pleasing front in public, for the most part. but we know a different side. if any of those folks had been around when one of those rages was in progress, they would understand.

    but one big fat fact i have learned in all this: until you've spent some serious time with a dementia victim, you just don't know.
     
    Last edited: Aug 16, 2019
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  2. getbent

    getbent Telefied Ad Free Member

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    you did the right and good thing.

    We moved my mother in law into assisted living a few months ago. Without all the details, but suffice to say, it was time. What I have realized (she does not have dementia but her cognitive abilities are impaired) is that her expectations, ours and 'well meaning' folks are not aligned. She believes that she is recovering from something. I think she believes she is going to to 'get better' and go back to some earlier life where she was autonomous etc. We recognize that she has aged and is in failing health, is in decline and within a certain amount of time, will likely pass. We do lots with her (visit every day, go on excursions, meals etc) but, when the 'well meaning' folks visit, things get weird it is followed with unhappiness and questions and discontent.

    To ask that people be thoughtful and considerate and not just 'ring in' with whatever thought or comment comes into their head is, well, not very easy to do. Half of them see themselves as some sort of advocate or saw something on television or are projecting... Anyway, it is a drag and painful and needless... and yet...

    Hang in there... the 'well meaning' mean well, but they can create a mess and hurt people all too often... I try really hard not to be that guy.
     
  3. Milspec

    Milspec Friend of Leo's

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    You pretty much described what everyone goes through on that subject. My Father has been in a nursing home with ALZ for the last 4 years and it can be very tough. He had to do the same thing with his Father and begged me to not let the family do it to him, that he wanted to spend the rest of his life in his own home, but it didn't happen that way. I sure tried to defend him and spent every dime I had on visiting nursing care, but once he broke his foot kicking through the wall at night trying to get to the bathroom, and having no memory of it in the morning, it was time. He blamed me for the first year when he still had moments where he was lucid and even took a swing at me when I visited over Thanksgiving, but life was never meant to be easy. The good part is that his health is vastly better than at any other point in his life and has been removed from just about every daily medication that he used to take...just the mind doesn't get any better.

    One just never knows how life will go. A very good friend of mine for more than 30 years is dealing with the near death of his 16 year old daughter after she struck her head agaisnt the side of the pool performing a gymnastics back flip. Severely fractured her skull, bruised brain, internal bleeding, and a fractured neck...was in a coma for 4 days. I had to hep him hold her down while she kept screaming and thrashing around after the injury. Fortunately, when she came out of the coma, she asked for her cell phone (she didn't get it back) so she will probably be okay eventually.

    Life is tough...just have to do the best you can and never blame yourself if it wasn't enough. Only Superman has a cape, we don't.
     
  4. thunderbyrd

    thunderbyrd Poster Extraordinaire Silver Supporter

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    i learned a whole lot from the alzconnected.org forum. anybody new to this business will do well to go there and just read through a bunch of the posts. much is explained there.
     
  5. Lawdawg

    Lawdawg Tele-Holic

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    That's a really good and helpful post. You handled an awkward situation with your dad's friend very well.

    That strikes home for me 100%. My personal experience is that most families, certainly mine included, wait too long before moving a close relative into an appropriate memory care facility. It's just not a decision that anyone wants to make for a love one. I've now had two relatives, my mother-in-law and grandmother, that were not moved into an appropriate facility until an incident occurred with them being found wandering a street alone in the middle of the night. Thankfully, both were quickly discovered by neighbors who were able to help, but nothing brings the severity of the condition home like getting a call from the police at 3:30 in the morning. The reality for both was that they should have been placed in an assisted living facility at least 1 -2 years earlier, but it's just a tremendous emotional (not to mention economic) challenge.

    Thanks again for sharing your experiences, it really helps!
     
  6. Deeve

    Deeve Friend of Leo's Silver Supporter

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    I stand with you @thunderbyrd - the reality is that things do go "downhill from there"

    Mom is at a skilled facility now, unable to leave her bed.
    Her previous memory care was at a place that was a lot like a 5 star hotel (but not so cheap. . . ).
    Manager was a pretty good guy, who found it worthwhile to be candid with our family.
    Among other things, he said this about his job: "managing decline" - true dat.

    The friend of your dad - he spoke awkwardly, but may have meant well.
    As you already know, there are some folks (most?) who have not "managed decline" in the case of dementia.
    What do they know? Darn little. And mis-information is rife.

    It was weird enough getting comments/questions from folks after our mis-carriage experiences.
    Weird again as folks thought they were providing "supportive" comments during our adoption (and the 19 years since).
    And a little stiff after the sudden passing of my dad last summer, less than a week after a fatal diagnosis.
    But the least useful things I hear are comments from "outsiders" in ref to mom's dementia care.

    Strategy - just let the nonsense roll off.
    Folks who actually know you will make less mistakes and it'll be easier to forgive them.
    The other people - do I really value their observations? No; not much.

    Peace - Deeve
     
  7. Middleman

    Middleman Friend of Leo's

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    Yeah, the church person in this case is not a specialist. I've gotten very bad advice from church leaders around alcoholism in my family and so as much as they feel they are doing good, unless they are doctors themselves, advice should be taken with caution.

    Consult with doctors, learn your options. My mom just passed away after a 10 year struggle with dementia and intermittent psychosis. Your instincts are right based on my own experiences.
     
  8. P Thought

    P Thought Poster Extraordinaire Silver Supporter

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    That was a very good post, @thunderbyrd.

    My dad "ran off" and left my mom when I was 30, and I saw him only once or twice a year after that, there being 900 miles between his new home and my house. His second wife tried very hard to keep him at home as his Parkinson's and dementia progressed, and there were several scary incidents before finally. . . .

    At first Dad's wife insisted that he be somewhere near her, where she could visit him. We shopped around for "placements" for Dad in Southern California, but every place that accepted Medicaid patients was seriously overcrowded and understaffed; you could tell by the pervasive smell of stale urine.

    Finally--I'll always be grateful to her for this--Dad's wife consented and we brought him here to a memory-care and nursing facility, where I was able to visit him every couple days for the last two years of his life (his wife never saw him again). Our road trip was something, and just in time. He was very unsteady walking, needed lots of help in and out of restaurants, restrooms, and motel beds, and within a couple weeks after we arrived he was in a wheelchair all the time when he wasn't in bed. The staff people at the care facility were good, caring folks--some of them had been students in my class--but they were spread thin, and I am sure my dad's care was better than what some people got because everyone knew I might come in at any time.

    My dad was always a sweet, funny, intelligent person, and glimpses of that came through the fog from time to time, all the way to the end. He died around Christmas in 2015, and now that he's gone I am very glad I had those two years with him.
     
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  9. 8barlouie

    8barlouie Friend of Leo's Gold Supporter

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    Thank you TB, I do remember your post a while back. I think I might have responded to it then, but I went through this with both my parents. The doctors and nurses were very good at making them comfortable and keeping us updated with regard to their general health and progression of the disease, but the people who work specifically with memory and cognitive issues were indispensable in dealing with the day to day issues the patient and family faces. Many of them are volunteers iirc. Blessings on them.
     
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  10. Greggorios

    Greggorios Tele-Afflicted Silver Supporter

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    Best thoughts and prayers for you and your folks. It's one of the hardest things that anyone can go through. Please be reminded to take care of yourself and the rest of the family. The healthier you are, of both body and mind, the better help you'll be to the folks. When we were going through similar situation one of the best pieces of advice I got was "Remember, they're like scared and confused children. Be patient."
     
  11. stevemc

    stevemc Tele-Holic

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    this is a good thread.thanks.
     
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  12. kingofdogs1950

    kingofdogs1950 Tele-Holic

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    I went through a very similar situation with my SIL's mother. It was a nightmare. I started the process with my brother finishing it when I had to return home to start a new job.
    It all worked out but what a fight it was.

    Mark
     
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  13. Nickfl

    Nickfl Tele-Afflicted

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    No one who has been through a parent's dementia would criticize someone for putting their family member in memory care when it gets to that point. People who haven't been through it should keep their opinions to themselves.
     
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  14. P Thought

    P Thought Poster Extraordinaire Silver Supporter

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    I have a friend from college days whose demented father wandered off and was never seen again. I know he wishes they'd taken other steps.
     
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  15. raysachs

    raysachs Friend of Leo's Silver Supporter

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    It's never easy - just varying degrees of hard and very very very hard, and impossible. My Mom didn't technically have dementia. But she had surgery for a benign growth on her brain when she was in her early 70's, either the growth or the surgeons did some damage to surrounding tissue, and when she came out of the surgery, she was never even close to the same again. It basically damaged her short term memory processing and without short term memory, you're screwed. You can't participate in a conversation because you lose track of what was just said faster than you can formulate a response, you have to check your purse or pockets constantly because you don't remember if you have some critical thing with you. You basically just can't function.

    She fought like hell for about the first 2-3 years, mostly to no avail, but she was trying and fighting and still had some spirit. And then she was just so exhausted and realized nothing was helping and she basically gave up and wasted away for several years before she died about 7-8 years after the surgery. It was the hardest thing I've ever seen or experienced in my life. I was only in my early 30s when she had the surgery. I'm 60 now and I realize that I only knew my mother in a functional state for the first half of my life at this point. And she's becoming a distant memory, harder and harder to remember in any meaningful way. Nobody who wasn't with her for most of that could really understand. It took me a while to understand it and I was there - I kept expecting her to get better. It made my Dad's life a living hell for the rest of his life, but he hung in there with her until the end. But they moved into an assisted living place shortly after she'd kind of given up on herself and that was so critically important for both of them.

    Fortunately my Dad outlived her by about 6 years and still had his faculties about him right up until the end. And he managed to reclaim some quality of life after she was gone. Which is a terrible thing to think, but her death was actually a relief once it came - I think not least to her. She was just worn out. Growing old is not for the faint of heart - nobody gets out of here alive, but some of us have an easier last stage than others. My daughter is a doc now and she's overseen quite a number of deaths and has come to refer to them as good deaths vs bad ones, and I know fully what she means.

    -Ray
     
  16. thunderbyrd

    thunderbyrd Poster Extraordinaire Silver Supporter

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    click to expand to read my comment. Doh! stupid brain!
     
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  17. thunderbyrd

    thunderbyrd Poster Extraordinaire Silver Supporter

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    that is frightening, Pthought. can you share anymore details? did they live in a rural area, or close to any large body of water?

    my best friend's mother went through all this and she would wander off sometimes.
     
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  18. JL_LI

    JL_LI Friend of Leo's

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    I watched my father in law slip deeper and deeper into an abyss he would never climb out of. We joked that he was just the same old Julie, only more so, but we knew deep down what was happening. There were some of us who helped where we could. There were others who denied the problem, and others who avoided dealing with it at all. This I can say for sure. If you know someone going through this, offer to help. If you know someone going through this with a family member, you can offer to help. Suggestions are rarely the kind of help anyone needs and criticism is never needed, wanted, or warranted. If you can't help, commiserate. If you can't help but feel you should do something more than commiserate, take the caregiver out someplace to be away from the situation for a little while. It will be appreciated.
     
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  19. P Thought

    P Thought Poster Extraordinaire Silver Supporter

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    I already told you more than I know myself. It happened probably 30 years ago, and I didn't hear about it until some years after it happened. Suburban Redlands, California. Never found a trace.
     
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  20. rocking rooster

    rocking rooster Tele-Meister

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    What a lot of people don't realise is that dementia is not just about memory loss. There can be severe mood swings, one minute they are fine, the next it's all kicking off. There's also the loss of inhibitions and social awareness.
    My late mother-in-law had full on Alzheimer's and for many years we had to deal with it getting worse all the time. We experienced all the different symptoms and at times I don't know how Mrs R kept it all together. To be honest it was a relief for all when the MIL passed away last year. It's an illness that affects the whole family.
     
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