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.

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.

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

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.

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.)

Karsten, that sounds like a lovely idea, if dad is not too frail.

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.

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

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

If your dad is still talking and knows you, he may not be near his final days

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.

My dad wanted to return home, and I'm pretty sure that he meant the one that he had lived in for the past 65 years and that he had built himself. Getting him in and out of a car was doable, but up a flight of stairs, no. However, one day, I took him for a ride to the city he grew up in. We visited his grandfather's home and reminisced, the home where he grew up, the building that housed his father's barbershop and a pizza shop that he and mom established and ran....his elementary school, and the home where mom lived when dad dated her and later, that they owned together. He really enjoyed seeing them (from the car) and remembering events in his life and family and friends. I didn't know on that lovely day that dad would pass only four days later. I was so, so glad that we were able to spend that special day together.

Many times the elder, in talking of "going home," is not referencing a physical building, but a final resting place.

Many people would love to revisit a ‘home’ from the past, just to know that it was real. My sisters and I revisited our childhood home after 30 years. The people who bought it from us had made almost no changes, and it had been resold only a few months before we visited, so almost nothing had changed. The new owners were so nice, and so interested in the old history. For us, it was revisiting the past, with all its ups and downs. Yes, it was great, but we didn’t want to live there again!

Here is an idea which just might work, if your father really would love to see ‘home’ again in the same way. Arrange a day trip, and bring in as much gear as possible to deal with his restrictions. Use at least two people to help him get about. Don’t make it all look exactly like he remembers it from when he was much more able to cope. During the day, talk to him about all the things you will have to change if he is coming back to stay, and how long it will take to do it. Perhaps you talk about having to move out while alterations are made. Have lots of visitors, so it’s a very busy day. Then take him back to care, and make sure his room is looking lovely. It is quite possible that your father will really enjoy seeing the old place again, but will be rather overwhelmed and over-tired. He may be happy to feel that his own room is ‘home’ now. If after that he still wants to move back with you, you can say that you are working on making all the changes, because some of them are more complex than you expected. You will have given yourselves space and time to continue thinking about what is best for everyone. And you may have made him very happy to revisit his past, even for a day.

When my husband was in his last days of cancer, he was at home with hospice. He would say over and over I want to go home, either he didn't recognize his surroundings, or it was his spirit man talking and wanting to be released from his body to go to heaven. I chose to believe the latter.

Bringing him home might not solve the problem. My mom is at home and most of the time she thinks she is in hospital or nursing home. She will ask my dad to contact the front desk or doctor in charge. So bringing him home might not mean anything. I liked the idea about asking about memories of home. I will definitely try that.

I'll share my experience and maybe it will help you. My Dad is in the nursing home and he has dementia from several strokes. Sometimes it is hard for me to realize because he recognizes me still but his memories are 30 years old.

When I visited last weekend - he was very down and said that he really wanted to go home. I was feeling so guilty but instead of my usual "I know - when the DR says you can...." I asked him what was his favorite part of home. I got the shock of my life when he started talking about going fishing with his brother and playing board games with his siblings. The "home" he was talking about is from 70 years ago - when he was a boy - not the dream house he built with my stepmom and lived in for the past 25 years.

Your dad, if he has Alzheimer's, might be thinking of a different home. I know this is heartbreaking. You are there with your dad & he is getting the care he needs. You are doing well by him.

Without knowing how close he is to passing, it would be risky to bring him home. I like what Zdarov suggested in having your dad describe the details. In doing so, you may be able to bring to him some of the "touchstones" of home that might bring him comfort like pictures, a blanket, the taste or aroma of a certain food, or certain music?

You can only o what you can do. My husband was in hospital for a very long time when the doc finally said it was over. They gave him another week & said he could remain in hospital until the end. I, personally, couldn’t leave him there. It was important to me that he spend his last days in our home, our bed & with all our children (pets) with him. He didn’t, however, have Altzheimer’s or dementia. My concern is that you already are feeling guilty. If you could know that you won’t feel worse for not letting him pass at home then you should be fine. My husband’s doc was spot on about him only having a week left. Your LO’s doc can’t give you any idea, or an estimate time how long he has left? I’m so sorry you’re having to face such a dilemma. Whatever you decide, at least know you’ve been there for him all this time & have done the best you could.

I share your sentiments. I want to bring my LO home too when it's time. The timing is hard to gauge, though. It's challenging to work out the details. I'm hoping that I can do it, but, sometimes, it's just not possible. Don't be too hard on yourself. We do what we can.

You can bring him home if you definitely know his date of departure from this world!! Otherwise it will be difficult to provide care at home indefinitely.This is your choice... he will probably not know and remember whether he is in his own home or in a nursing home..

karsten, this is so bittersweet. When I was younger, I read a spiritual book that asked you to imagine in detail what your ‘home’ looks like. Do you think it would help to ask him to describe it in detail; let his imagination to wander and bring some images to life? Be well, hug.

Your dad wanting to go home, may not mean his earthly home. Bring in his pastor or priest.

I have my DH at home with me, a home we have lived in for 30 years now.

He too often asks when we are going home. And sometimes he asks if he can go upstairs - we don't have an upstairs - I ask if I can watch him go upstairs and he giggles. He knows there is no upstairs but at the time he is asking, I have no idea what is in his head.

Mama had it right - old age ain't for sissies. Neither is being a caregiver. So every day, several times a day, I assure him we are home, I am his wife, there is no one else living in our home ..... you get the idea.

Thanks all for very helpful responses. Last night my dad said he wanted to go back upstairs, where he belongs. But the NH he was in did not have a nursing home. I took that as perhaps wanting to be with the Lord.

Karsten, usually when a person has Alzheimer's/Dementia, when they say they want to go home.... it means back to their childhood home where life was happy and simply.

Also, some will say they want to go home, will mean they want to go to the Lord.

There are lots of people who want to go home even though they have lived in the same house for many years, I think they are often yearning for a time and place that they were young and whole again and that is something we can never give them.

Without knowing how long he might live, it would make your life very difficult to be a caregiver. My father talks about coming home every other day, but we know we can’t take care of him as well as the NH staff can. I have told my mother that when it reaches the point where is goes into hospice, that would be the time we can bring him home for his last days. Good luck.