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Dementia/Alzheimer's Disease

Discussion in 'Chit Chat' started by PatrickUK, Aug 21, 2021.

  1. PatrickUK

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    Okay, this is a fairly deep and difficult question, but one many of us may be familiar with if we have elderly relatives.

    A [hypothetical] relative is diagnosed with dementia or Alzheimer's disease and they begin to lose their memory and cease to recognise you and other family members. Do you continue to visit them if they are placed into a care home?
     
  2. Rayland

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    Of course, even if they don’t remember you, they are still your family member. I have worked in a nursing home and there were old people with Alzheimer’s and old people withouth Alzheimer’s all in the same nursing home and it was honestly sad.
     
  3. Mihael

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    My grandma suffered from an illness like that. I can't imagine not seeing her. I was close with my grandpartens.
     
    #3 Mihael, Aug 21, 2021
    Last edited: Aug 21, 2021
  4. Chip

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    It's my understanding (and I'm no expert on Alzheimer's) that even as the people suffering with it recede into dementia and lose recognition of family members and friends, they do retain some memory which resurfaces from time to time, and these memories seem to be triggered by more frequent contact. So to the extent that continuing to visit helps them maintain some connection, however tenuous, to their cognitive capacity, I'd absolutely want to continue to visit. I think, as well, that even for those who show no signs of recognition, the interaction (whether they think they're meeting someone new, or whether they are simply feeling the warmth of a hug or a hand holding theirs) improves their quality of life. And I feel like the benefit of that is absolutely worth the effort.
     
  5. quebec

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    I lost my mother on June 29, 2020. The last six months she was definitely suffering from memory loss. There were days that she did not recognize me very well. Sometimes after I'd been there for a while she would figure out who I was and other times she never did really know who I was. It didn't matter. She was my mother. I came there to visit her and to be with the woman who birthed me, who raised me. I was there with her when she took her last breath just as she was there with me when I took my first breath. Whether she knew I was there or not didn't make much difference to me. However, being there for her at the end did make a huge difference to me.
    .....David :gay_pride_flag:
     
  6. HM03

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    I'm not sure what I'd do or feel if they didn't recognize me and got panicked/angry about it consistently. I guess then family/friends would ideally rotate for our own mental health but so they would still have somebody visiting frequently.

    The last while of a couple family member's lives they got to they didn't talk/have obvious body language. At that point you just go for your presence, think aloud, ask questions you won't get answers to.

    Not to get too morbid, but often people die *after* people leave the room. Makes me think there is recognition and cognition, even after we think it's gone.
     
  7. Rayland

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    Even if the memories are gone they still have their soul and they can recall memories, even if it’s for a short period, if triggered. There are studies, that say how people with dementia can remember the songs they listened to, because the part in the brain that helps you memorise music is not entirely affected by the Alzheimer’s. It can definitely be hard, if they don’t recognise you, but I feel like, even just being there for a bit brings comfort for their soul and it also improves their quality of life.
     
  8. Andrew99

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    I would still visit. It would be very painful. I would bring pictures. I would not want to confuse them any further and I would not push the issue any further if they didn’t remember taking that picture or something we did together. My grandmother has been having a spotty memory later that I’ve noticed. Her mom, my great-grandmother, died of Alzheimer’s and if your mom gets Alzheimer’s you have a 50/50 chance of getting it yourself. I don’t think I would get Alzheimer’s because I have a really good memory right now, and if you pick out any date since I was 14, I can pretty much remember at least one thing that occurred either to me or in the world about each date.
     
    #8 Andrew99, Aug 23, 2021
    Last edited: Aug 23, 2021
  9. PatrickUK

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    Thanks for the replies. Was prompted to ask because a few people I know have ceased visiting relatives in these circumstances, believing there to be no recognition or knowledge of the visit.
     
  10. Canterpiece

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    This is a difficult topic for me because I have a distant relative with Alzheimer's...but I've never met her. She's been battling all kinds of aliments including cancer in the past. Which is why she's been in and out of hospital all of my life and we've never really had the chance to meet. Then she recovered, only to develop Alzheimer's which seems like a cruel joke. I guess I have no real reason to feel sad because I don't really know her, I only have stories of her and my other relatives updating me on her condition. Yet I find it painful to hear about it.
     
  11. Isbjorn

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    My mom suffered with Dementia and Alzheimers prior to passing almost two years ago. Most times she did not recognize me, but she knew I was a person to be trusted and she would find comfort from me visiting. I always hugged her and she would relax into my hugs. It is very important to visit. There may not be recognition apparent, but deep down subconsciously they know. It was so sad and frustrating to see her go through it, to see her know something is wrong, yet have no clue what is wrong or how to fix it.
     
  12. Mihael

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    It depends how often, maybe? If someone would need to neglect their own needs such as job or education or get depressed because they were constantly spending time with an ill family member, maybe that's the moment people stop. On the other hand, people differ when it comes to level of empathy and care, so maybe some people simply don't bond with their family or whoever, really.
     
  13. Shorthaul

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    This is one of those questions that there is not really a one size fits all answer for. I know in a few cases I have dealt with it was less about people not being recognized, but more in how uncomfortable or depressing it was for them to visit. Kind of in a way it was painful for them to watch the other person continually lose more of their memory. As while they still are alive, you are kind of watching the person they are pass away.

    I've been on the other side too and it was sad to be one of the very few people those people with Dementia or Alzheimer's ever saw because family never visited. So their only interaction with people was the people who worked at the care facility or people like me who showed up every week to take care of their oxygen machines and tanks. And the rare times I would see family you could tell when they were not comfortable visiting especially little kids because they don't understand why grandma or grandpa doesn't remember them.

    I think it might be worse for people who are very empathetic, because you care so much and want to help, but there simply is nothing you can do to help.
     
  14. Tightrope

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    I think there's a reasonable minimum that is expected of people. You want to keep family and friends comfortable in difficult times and with difficult conditions.

    One of the things I've seen with people and aging parents seems to come right back to what the relationship and the parenting was like. If the parenting was good and parents and kids got along, the children will go the distance to make sure they are there for their parents. If there has been a lot of abuse and a lot of friction, it might be more difficult to rise to the occasion. I have seen both sides of this one with people I know or knew. Someone I know just took a leave from work and moved thousands of miles to be with a more frail parent. They had their arguments but mostly they got along.
     
  15. Isbjorn

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    Spot on about the empathy. It was extremely hard on me to see my mother like that. If it were just memory that would have been hard enough, BUT Alzheimer's is heinous, taking away memory, cognitive skills and emotional stability. My mom was a computer programmer before computers were found everywhere. She was a programmer for Boeing when the Cuban Missle Crisis happened in 1962 and had a carrier in programing and program analysis. Was VERY intellectual and very professional. She was reduced to having hardly any cognitive skills, no memory to speak of, and emotionally a roller coaster of scared to pissed, with little in between. It was BRUTAL on me because she was my rock all my life. That being said no matter how much it hurt me, I sensed that she relaxed and trusted me when I was there, though she did not recognise me most of the time. That was why I went back as often as I could, to give her some relief from her torment. I was there for her, not for me.

    This being said, there is a lot of truth to what Tightrope said. I can definitely see where a lot does come down to what the relationship was with family prior to their malady. It is a good lesson in making the bed you end up sleeping in. I was there for my mom without question, because she was there for me throughout my life without question.

    In some ways, it is too bad I didn't figure out and come into balance with my sexual identity before she passed, and more specifically before Alzheimer's took her. I know she would have been my prime advocate and biggest supporter. I miss her terribly. Though, this last is diverging from the topic here.
     
  16. AwesomGaytheist

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    I struggled with this greatly. With hindsight being 20/20 my grandmother had been showing the early signs of dementia since at the very latest 2014, a year before she had a stroke. After her stroke she began seeing bugs everywhere and believing more and more outlandish things and she was diagnosed with Lewy Body Dementia. My mom and aunt (who were her caregivers for the last 2 1/2 years of her life) tried so hard to comfort her from all the bizarre things she was afraid of. She kept thinking that cars leaving the nursing home during shift change in the middle of the night was an ambulance coming to take her husband away. Another time someone was coming to kill her. None of this was true but she believed it and there was no consoling her.

    I would go every now and then but I constantly struggled with what to say to the things she was telling me. One day she told me she was going to pay me $1,000 a week to drive her around. Sometimes she would ask me to bring her random things (one day it was a frying pan). Other times the things she was saying just came straight out of left field. I would go on holidays and every few months (despite the nursing home only being 15 minutes away) while my brother would be there with my mom every single day.

    Every time I would go there I would walk out of the nursing home and ask myself "Am I okay with that being the last time I ever see her?" and usually the answer would be yes. One day I went there and she was fairly lucid and even accurately predicted how dry and awful one of my college courses was going to be. I didn't go again for a while after that because that was exactly how I wanted the last time I saw her to be.

    And then one day she started the natural dying process. I was there with everyone else who could get there when she passed away and I didn't have a problem with that because the best gift you can give someone who's dying is to be there with them. Do I wish I'd gone more often? Not really. I'm okay with things how they happened. But I do wish I could have spent more time with her when she was her normal self. For the first nine years of my life she lived 2 1/2 hours away on the other side of the state from where I grew up, and then until I was 20 she lived in Florida. We went to visit every summer and I always wished she lived closer. The irony of getting that wish and me not wanting to see her at all was not lost on me.

    She is the person I try to emulate every day. I never directly came out to her because I wasn't ready to be fully out to family before all that happened but she knew. My cousin told me about a conversation he had with her when he was about 16 and he told her I hadn't really found myself yet and she replied "I'm sure he'll find a man that suits him."

    If I could go back and do it again I don't think I'd visit more often. But that's just my perspective and it depends on what you're comfortable with and the situation the loved one is in. I hope this gave you the perspective you were looking for.
     
    #16 AwesomGaytheist, Sep 20, 2021
    Last edited: Sep 20, 2021
  17. PatrickUK

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    I was very moved to read your reply and I don't think you diverged too much from the topic at all. What you wrote was entirely germane to the question I asked and I am grateful that you took time to reply. Your mom sounds like a very special lady who struggled against the indignity of Alzheimers.

    It's the fact that she relaxed while you was there that offers a chink of hope that all is not lost to this awful disease and it seems to suggest that visiting is still worthwhile. Having said that, I do understand where @Tightrope is coming from in his equally helpful reply.

    Thank you!
     
  18. PatrickUK

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    Thank you so much for taking time to reply and being so honest about your very personal experience. When I started this thread I didn't expect to read such moving personal accounts, but I'm so grateful for what you wrote. I am pleased your grandmother was aware of your sexuality before dementia started to take things away.