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My dad is 83. He has renal disease, dementia, COPD and recently lung cancer. He doesn't want to do treatment, and his doctor's best guess is that he has about 6-12 months. :( So people are talking about coming to visit him, both extended family and friends. The only thing is, he doesn't really remember any of these people anymore, so it is agitating for him when people come. I think he feels like a failure in a way that he can't remember them, like a sense of expectation he can't fulfill. It was so sad when my sister came from out of state and he didn't know her. He has been crying about it ever since, saying, "What kind of father doesn't know his own daughter?" Mostly the agitation passes quickly and he won't even remember somebody was here by the end of the day. So I also wonder if the visits are appreciated on some level, even if it just breaks up the monotony of his day. He used to be very social and liked to tell stories, and I see that a bit when people are here. I just can't decide if the agitation is worth any benefit I he is getting.

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He should be on Hospice and they have excellent meds for the anxiety and depression for him.
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He isn't ready for hospice yet since he isn't having any symptoms. And I don't think his anxiety or depression is at the level of needing medication. It is always short lived.
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Neomia I don't have answers for you, I just wanted to say how heartbreaking this is for all involved - your dad (even though it's short-lived), you and your siblings and and friends. {{{{Hugs to you}}}}.
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Neomia,
I am not one to turn to meds, but if he is facing his mortality within 1 year, there is no sense in waiting. There are "happy pills" that will trick his brain into a little contentment. Then he may enjoy and appreciate the love his family wants to share with him. Talk to the DR about the meds, no time to waste.
Best wishes to you in this very trying time.
L
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Possibly there might be a chance you could relieve the pressure or stress on him by teaching everyone who comes to see him never to "test" whether he knows them or not, but just say Hi, it's _____ your (sister, daugther, son, cousin) and plan easy low stress activity or just chilling out with th TV or a movie or some activity they might have.
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neomia, There are certain times a day that I just don't see my mother-in-law, since she gets worse in the afternoons to evenings (sun-downers) but she's not TOO bad in the mornings. Honestly it's a crap shoot as to whether she'll be completely out of sorts when I pick her up, or not. I live in the moment with her, and have for years now. There are times we laugh about her not remembering her family, and we're just silly about it. Then there's times she is agitated and mad at herself for not remembering. Like I said...crap shoot. One thing that I have stressed from the beginning however, is it NOT her fault. It's not her fault she can't remember her 3 boys sometimes, or me, or the husband she had for 60 years. I down play it and just talk matter factly about the years past and what,when,where and with whom she did things. I do find after awhile of going back far enough in her long-term memories that I'll 'prime the pump' so to speak and she'll remember someone's name or whatever. Crap shoot still. She has fun in the moment though, so that'll have to do for now. Hang in there. Look for the good times of day for your dad, and give him permission to forget. Because like I said, it's not his fault. And remind him he was a good dad for a long time, and that's all you care about. Sorry.
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id say pressure is what hes feeling . time should stand still when your visiting a memory impared person . i cant explain that in a better way , its just been my experience . as primary carer it is up to you to manage the freak show and keep a tone of nonchalance in the home .. when my mom had visitors i usually eased out of the picture to let them visit without my overwhelming ambiance but mr ambiance wasnt far away if anyone acted out in a way that disturbed the peace ..
maybe your visitors need a chill pill as well as dad .
i think you should get something from doc for dads agitation ( as needed ) ..
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Thanks for all you replies. I guess this is the sortof thing that only a caregiver can answer for themselves. I do have a prescription for Xanax on hand. I got it after some really severe phases of agitation, where he was pacing and cursing, so I do know what that looks like. The agitation from visits is much more mild so far. Is Xanax what you would call a "happy pill"? What are the commonly used ones for Alzheimer's? Nancy, I like the idea of reminding him it isn't his fault. I have a variety of calming statements I use, but I haven't used that one and think he would respond to it well. Captain, I like the idea of "time standing still". I call it mindfulness. :) I was already practicing that as a spiritual technique, and it was instrumental in coming to peace with answering the same question over and over and over (and over) again. I am lucky that I don't really have a freak show. The people that have come to see him are all very mellow and compassionate. He is just very hard on himself I think. He was like that in his work life as well, a total perfectionist - I think you have to be when you are an engineer designing hydraulics for the military's submarines. Not much room for error. I think that makes the dementia process even harder for him in some ways.
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I would welcome medication to help, but I would research the Xanax. The director of our ALF said there were recent findings about that drug and dementia that really were shocking. Apparently, it might have some negative effects. I haven't researched it yet.

When I visit the ALF and see many there who have dementia, I treat each visit as a first meeting, just in case they don't remember me. That way, they don't feel pressured. If all his guests approached it that way, then he might enjoy the visits.

From what I've read, the fact the patient forgets about the visit minutes later, doesn't mean the patient doesn't still gain some benefit from the visit. I hope I'm right on that. Someone please chime in if I'm not.
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Oh dear. Two equally unattractive choices:

1. His friends and family gather round, he doesn't reliably recognise them, he gets upset and reproaches himself.
2. He is reaching the end of his life and he can't see his family and friends for the tumbleweeds.

It's easy for me to say which I think is the more easily handled unattractive choice, because I'm not the one who has to be with him when he's upset. But the way I see it, you can do something to manage visits so that he enjoys the company, but cut it short if it's not going well or he's not having fun. Whereas if you discourage visitors, you're eventually going to find yourself having to explain why everyone seems to be avoiding him. Rather you than me.

The thing to do, then, would be to spell out to visitors a few rules before they arrive, such as: keep conversation light and easy, and let him be the one to introduce memories if he's having a good day; no hand-wringing or wailing about his loss of recall, or not to his face at least; be prepared to be shown the door if anyone gets upset, with no hard feelings.

If they can't hack it, then they'd better not come. You'll need to be fairly blunt with them, but that's better than your father feeling isolated, isn't it?
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There is one thing I have done that helps a HUGE amount. Guess I should have included it in case it might help somebody else. It came about when his granddaughter was here for several days. He kept pulling me aside, making a contorted face and saying, "Who IS that person?" I kept patiently repeating, "That is your granddaughter. She came to see you." He would often say, "Why?" (So sad, a worth issue there.) I would say, "Because she loves you." And then he would seen so confused. I finally realized that is what was creating the pressure/expectation/whatever. So I started telling him she came to visit me, and it was like a sigh of relief. She is a truly amazing person. By the end of the visit, she had him dancing and expressing his emotions in ways that felt like really healthy release. Wish she could be here all the time!

One thing I noticed is how much he apologizes to people over and over for not remembering them. So much of this is tied up in self worth for him clearly. He also frequently asks me, "What is wrong with me?" I used to say things like, "Your brain just got too full and is tired now," because I was worried about the reality being even harder to take. He actually seemed to like that idea, but lately I have been being more specific and telling him he has a "brain disease". He seems to relate to that term best, and I am hoping this more direct approach will alleviate some of the self blame. So hard to know though!

His main MO for years has been telling the family the doctor said, "There ain't a damn thing wrong with you!" I think he did actually say that... about 10 years ago lol. Sometimes I think it would be awesome to let him go to his dying day thinking that. (When he does feel dizzy, short of breath, etc, he puts it off to just "being old".) But after reading up a bunch on validation therapy, I think that approach can be a bit demeaning. I believe the theory that they know what is happening on some level, or that the knowledge comes and goes. Hard to know where they are at any given moment, and it isn't great to be treated like a child. OK, now I am rambling. :) Thanks again for all the thoughts.
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I'm assuming that visits from friends and family are meant to benefit him. If he is upset/agitated/doesn't even remember the visit they aren't a benefit to him.
They may benefit the person visiting, ease their guilt but at this stage of the game it should be all about him. No benefit to him no visit. Friends and family will have to learn to deal with the guilt don't sacrifice him for them.
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I'm assuming that visits from friends and family are meant to benefit him. If he is upset/agitated/doesn't even remember the visit they aren't a benefit to him.
They may benefit the person visiting, ease their guilt but at this stage of the game it should be all about him. No benefit to him no visit. Friends and family will have to learn to deal with the guilt don't sacrifice him for them.
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Hospice is wonderful! They can come in because of the diagnosis. Your doctor needs to request them and you can meet with them and they will do an assessment (like a check up) on your Dad.
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Perhaps the visits could be more about love and less about testing a memory your father doesn't have.

You might tell people ahead of time that he won't recognize them and coach them how to avoid conversation that could upset him. Anything that begins with "Do you remember . . .?" is taboo.

I like the way my mother's physical therapist handles this. EVERY time he comes in, he looks straight at Mom, speaks in a loud voice (she's nearly deaf) and says, "Hi. I'm Matthew. I'm a physical therapist. I’m here to help you to walk better."

Mainly what’s significant to your father is the present moment. An exception would be conversations about periods of time your father still remembers. My mother's memories, for example, stop back when she was working at a department store afternoons and weekends during high school and then into her early 20s. Usually, she speaks as if I am her sister.

It’s nice to have visitors come in and break up the monotony of daily living. They just need to understand it’s not about them. Here’s hoping you can find compromises that will make these experiences pleasant for all concerned.
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Neomia, Just a thought about Hospice, I thought death had to be months or weeks away , for them to come . But I found out ,when taking care of my spouse, that is not the case. Hospice will come in, if patient has a continuous , declining health condition, from which recovery is not expected. They were a tremendous help to our family. Nurses and SW will address all of the questions you have ( they have heard them all ). They can suggest meds that may help or diplomatic ways , of handling friends and visitors. I found hospice to be a great help. Just ask friends for recommendations, as there are a number of Hospice groups out there, and some are much better than others. God Bless you for being your Dad's advocate.
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I remember a story from some time ago that always stuck in my mind. A elderly gentleman would come to visit his wife who had Alzheimer's and lived in a nursing home, and he would feed her lunch and dinner. Then someone ask him why does he visit her twice a day when she doesn't remember him.... he said "but I remember her".
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Neomia, does your father remember things long enough to prep him for a visit? "Susie is coming to visit this afternoon" or something like that? Is it easier if he sees only one or two people at a time? Would it be possible to expand the method you use with his granddaughter's visits: "This is Susie, she came to visit me today." Susie's relationship to your father might never come up, and make it more comfortable for him, and she (or whoever) gets to spend time with him whether or not he remembers exactly who she is. I sincerely hope that you find a way to deal with this.
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The best answer I can give is "you can't regret something you have done, but you can regret not doing something". When someone has dementia, the lucid moment when memory is alive, is a blessing beyond measure. On the days your Dad may not remember you or someone who is visiting, know that the visits are still important to the person who wants to be with someone who is facing the end of their life.
It is a good idea to have soft music on when visitors are around as it is soothing to someone with dementia. Visitors should not continually try to correct your dad...if he thinks Mary is Jane (as an example), then Mary should be Jane since he will cause less agitation. Lastly, if a doc has prescribed medication...definitely use it! Each person is different but medication for someone who has dementia can truly change their lives for the better. I have the honor and privilege of working with people with dementia and I sure do hope this note helps. Most importantly, I hope that you know that helping to dignify someone's life, especially when they Re facing the end of their life, is truly the most important thing you could ever do. It is life changing for you and it is God's work.
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Just wanted to add that if you don't like the prescribed medications, contact the doctor's office and ask to try something else. And keep trying. The right match can make a world of difference.
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Recently, I have been invited by my older brother, 13 years my senior, to assist with the care of my sister in law who is 74 years of age. My sister in law has Alzheimers Dementia. It is know to my brother and myself that my sister in law is not bathing as one would think she has and I have been asked to see what I can do to encourage her to wash her hair. I asked once if she would wash her hair that particular morning and she replied that it would be done later. Well later came and the next day her hair was not washed as had been discussed the previous day. Is there an easy way to bring up the subject without being turned down and is it my place to assist with this task or should it be assigned to a home care assistant who may be coming to the house to assist periodically?
Your suggestions are welcome.
Kind regards to all.
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Caringgentleone, it is a good thing that your brother has asked for help with caring for his wife. I imagine that he turned to you because you are well known to your sister in law, and he supposes that assistance with personal tasks, such as bathing, would be more appropriately done by a familiar figure.

However: it ain't necessarily so. Sometimes, it's easier to accept help with intimate tasks from a professional person in a uniform - someone whose job it is to do these things thoroughly and efficiently, and with minimal intrusion.

Besides that, this would be an excellent opportunity for you to research what support is available to your brother locally; because as time goes on he is likely to need much more help than you alone could provide. It sounds as if neither you nor your brother would feel completely comfortable discussing private matters with your sister-in-law. What I suggest, then, is that your brother explains to her that he is meeting people who might be able to help him. Keep the focus on the support he needs to care for her, rather than the tasks themselves. Then let the professionals come in and do their job, while your brother and you concentrate on being the family she knows and loves.

Best of luck, please let us know how you're getting on.
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With all these potentially fatal diseases, wouldn't it be more productive for family and friends to remember your dad as he was in his prime? Who is really benefitting from these visits? If he cannot remember, he cannot remember. Would you want strangers coming to see you at your worst time of your life?
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