Alzheimer's dad wants to come home for his final days. My brothers and I are feeling extreme guilt at not being able to grant him this last wish.

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I had understood that by the time my dad got to this point, he would not know where he is and getting him back from NH to his home would not be an issue. But all he talks about is wanting to go home. Maybe this is a metaphor. When I talk to the experts on my bringing him back to his and my mom's house, they sound like that's a good intention, but pretty much impossible to do. I suppose if we KNEW he had just days left that would be one thing. I guess the experts are right, but my brothers and I are feeling extreme guilt at not being able to grant him this last wish.

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Up until my husband's last week, we were able to deal with his increasing failure with lymphoma; I was able to take him to work with me every day (we had our own business), and even if he couldn't do much we still had his knowledge available (very fortunate!). He got to where he couldn't get anything down; I took him back into the hospital and they tried a feeding tube which he immediately pulled out. They mentioned hospice but there wasn't time. I spent most of my days there that week, and we had family and other visitors there as available. (The nurses "didn't notice" that we brought in a 10-year old grandson, who he was very happy to see, and even gave him a "patriarchal blessing.") The last day I came in early in the morning as usual--they let me come early enough to check with the night nurses--and found that he was becoming unresponsive; could squeeze my hand and that was about all--and they were taking him to an observation room, where they could monitor him and we could be with him. I called our kids immediately, and we had the room full all day, plus a waiting room down the hall, with family and friends. What I thought interesting was that his siblings came but didn't stay; who stayed all day besides our kids and their families were nieces and nephews. He passed that evening. We could not have dealt with it at home.
It's difficult to know what to expect; my MIL passed at her younger son's home, and I was the one with her that night. My FIL had an apparent heart attack during the night, after we had brought him him home because the facility we thought would work for him didn't. We need to do our best with what we can do and what we can't, and professional care works best sometimes--and sometimes not.
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This is a toughie......not knowing what they mean (and I've heard all of the above answers) I believe and this is just me, that they should stay where they are best taken care of. I know there is no way I could have done the things that my mom's caregivers did for her. I was with her all the time and I did help feed her the last year of her life but I couldn't have done the rest without expert help. Here's the good news for you.....the NH will tell you when his body is breaking down and the time is getting close. When it does come to be that time chances are you won't want to move him due to his frailty. There "should" be no guilt (although that's hard to feel). Guilt implies you have done something wrong and have hurt someone or something. And you haven't. Go easy on yourselves. We are all doing the best that we can do in a very hard situation. Good luck and God Bless
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Karsten, you've already gotten many good comments. My experience with my 96-year-old dad in late-stage Alzheimer's dementia is that he wants to go home every day. He doesn't remember any of the homes he's lived in over the past 78 years (including most recently my home), instead he only remembers his childhood home. So, every day he asks me to take him home and every day I tell him it's too late today and I ask him to get a good night's sleep and promise we'll leave right after breakfast in the morning. He always says something like "okay, that's a good plan."

A few years ago, when my wife and I were newer to the Alzheimer's world, when my wife's aunt asked us to take her home, we managed to get her into our car and drive to her house that she still owned. She didn't show any sign of recognition. I think she enjoyed the ride, but she was glad when she was back in the comfort of the assisted living facility. Good luck to you and your brothers in your journey.
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I would certainly start with asking him to talk about "home", what he recalls, visualizes, etc. You may be surprised that it is not the home you think it is!

For over 9 months our mother hounded my brother every time he visited about going back to her condo, aka "home." While I was visiting one day after that, out of the blue she asked if I could drop her off at her mother's place. Ummm, errr, look at watch, gee mom, it is a little late in the day and it is not really on my way home... maybe tomorrow? Oh, ok. (Her mother has been gone 40+ years!) Whew... Got by that one! But right after that she asked if I had a key to the place they owned previously, sold 23+ years ago! I pulled up my key lanyard, said no, not with me, I will check when I go home. Oh, ok. If I had a key I would go stay there tonight... (I don't think the current owners would appreciate that!!!)

So, until he describes "home" to you, don't assume it is the last one he lived in! It could be any one that he might have lived in over the years, or something else he sees in his head.

As for the Easter trip - you can certainly give it a try, if you have enough people who can assist. If this was indeed the home he was referring to, hopefully it will not be an issue when it is time to return to the NH. If he balks, perhaps you can say you are all going to visit other family, just to get him back in the van? Once back at the NH, he might recognize it.

Something else our mother does when I take her to doctor appointments - on the way home, she'll search for keys, then ask if I have a key to her place to get back in, as she cannot find hers. Yup, don't worry about it mom! When we park outside the place, she does not recognize it (certainly does not get much chance to see the front outside.) Once back downstairs she seems ok, but sometimes cannot remember where her room is (first to move in, so I picked the first room around the corner from the common sitting area and dining room to make locating it easier!) It will be interesting to see when the next "move" happens which house it will be (they/we lived in multiple places and I know most of the addresses and am vaguely aware of some of her pre/post marriage addresses.)
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Karsten, that sounds like a lovely idea, if dad is not too frail.
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It's always somewhat comforting to know that so many are going through the same things. My Mom has been in long term care for a year.Wheelchair bound. Depressed but no significant dementia. But every day she reminds me that she wants to "go home." Home meaning at our house where she lived with me for 4 years after my stepfather died. The guilt I feel is like a roller coaster ride. One day I rationally KNOW that I cannot take care of her at home. The next day the GUILT monster overtakes me like a dark cloud. But I know she is getting good care. The staff of the LTC home where she is, are exceptional. I am thankful for this forum that helps me know that my sister and I have done, and are doing the best we can.
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related to a couple of the comments that suggested some kind of day trial, I asked the hospice SW today if it would be OK if we rented a van and brought my dad home for Easter. She said a regular van may not work, but she could arrange a outside co. to move my dad home and back on Easter. Hospice would not pay for it but could get favorable rates. going to wait for how much it would be, but wondering if this woud do more harm than help. woud so love to see my dad at home on easter surrounded by family
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Karsten, I agree with those that say 'going home' may not be the one he has been living in or even his childhood home. Speaking from my own experience with my Mom who died from Alz., in the late stages, when she still could talk, she would often ask to go home, no matter where she was....My dad and I with the help from hospice kept her 'home' throughout her illness (she was in hospice care for over 2 years) and always wanted to go 'home'. I think it was going back to God, that she really wanted. Going back to see her childhood home was not possible as her home is now part of Poland (after WW2). I'm not sure it would have been a good idea anyway, as the home may be gone, or changed and the current owner may not want someone coming back to see it, especially if once you get there, your LO may not recognize it and put up a 'fuss' which would be distressing to all involved. I think the best idea is simply to have them tell you about 'home' and go from there and sometimes a therapeutic fib may be necessary to keep from being upset...it's useless to try and correct or refute anything they say as their minds are no longer able to cope, so just go with the flow...you may have a wonderful conversation learning about their 'home'. My blessings to you as you go through this stage. Lindaz
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If your dad is still talking and knows you, he may not be near his final days
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Thanks for your insight here. My husband of forty years is in skilled nursing after serious stokes last April and again in June. It is day to day. He started doing better - which was a miracle - but refused to eat so all the PT to get him swallowing went away and he is on a feeding tube. He is paralyzed, but can talk - although it is harder and harder to understand him. Is on anti-psychotics for paranoia. He is 6'5" and it takes two people to care for him. This has all been so hard and there isn't much I can do. The absolute worst is that he believes he can walk, drive, eat etc.. and wants me to give him the car keys when I tell him I need to go. He wants to come home. And that's where I want him. He, too, has talked about our house having a second story. I can't afford to bring him home and there is no prognosis. I don't want him to begin to be angry w me. If anyone has advice for what to talk to him about and how to handle the going home issue, I would appreciate it. This site has been very helpful and people give warm advice that soothes my heart.
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