Sometimes I feel guilty by not letting my father return home but this little small voice is saying once he gets inside the door, it would be hard to get him to leave..
After doctors told me that my father in his early stages of dementia could no longer live alone, I brought him directly home with me instad of placing him into a nursing home. I was told not to take him to his home if he does not have a 24 hour live in person. I brought his belongings to my home without him ever going back to his place..Did I do the right thing by snatching him away so quickly without him saying good bye to his surroundings of fifty years? My dad is presently 91 years of age.
What I do know, is when I moved my mother into our home, I had been trying to prepare her and talked about her coming to live with us “just for the winter”, beginning at Thanksgiving. She thought that would be okay, “just for the winter”. I had been going to her home 2-3 days a week because she could no longer drive and needed assistance with meals, I took her grocery shopping, to appointments and out for ice cream and a little drive.
However, when we were at the out of state wedding of a cousin, she had a major meltdown and we left at 3am to bring her home. Life went south from there. After a month in the hospital, we had to bring her to live with us. So, much like your situation, she was abruptly brought from her home to ours and the “just for the winter” Thanksgiving plans bit the dust. I had physical therapy, cognitive therapy, visiting nurses, all trying to bring her back, but she never recovered enough to return home. It was hard because she, basically, went from the trip, to the hospital, then here and never quite got it straight she returned to her home state. As a result, many times she thought our home was a resort on the lake by her childhood home. Glad she liked her vacation spot.
She was 24-hour care and I couldn’t leave her alone, yet I had to go mow her lawn and maintain her home. She kept asking to go home, so, when she was up the drive, I would take her with me. That way she could see her home, look for anything she would like to bring back with us and visit with her long time neighbor who, every afternoon for years, would get together at 4pm for a glass of wine and card game. However, each time we would go, she would say she could live alone again and it would be fine. Even though, when she was living alone I had to call many times a day checking on her, tell her to take her pills that I had in the daily divided cases and the neighbor would come for the glass of wine and card game. Even at that, half the time I would go over and discover the pills still had not been taken. She wasn’t cooking or eating properly, so there was no way she could go home again. When we would leave, she would so sadly look at her home of 50 years and say, “Good-bye little house.” It nearly broke my heart in a million pieces; in fact, as I type, I have tears flowing it was so sad.
I don’t think there is EVER an easy method or definitive way to remove a loved one from the security of their lifetime home. My mother was always happy here and grateful for the care and family around her, but she never stopped wanting to go back to her home. I can understand how she felt. I can only imagine know how hard it would be to give up everything that was yours, familiar, all the memories and live under the schedule of others. I cried many tears and tried so hard to make her feel at home and have autonomy. We are fortunate to have an area of our home that could be totally hers with private entrance, private bathroom, kitchen, living room, bedroom and two other areas to call her soul her own. I brought all her clothes over, all her bathroom items, bought her whatever food she wanted to eat, brought over her living room furniture and tried so hard to make her comfortable and feel as much at home as possible. I even invited her friends over for luncheons and visiting. I told her she could have them over anytime she would like and I would help her prepare food, etc. then leave so they could talk. But, even with all of that, she still missed her familiar surroundings and the life that was hers.
Eventually, when I would take her to her home, she wouldn’t recognize it until she had been inside for 20 minutes or more, so I decided not to take her any longer.
As her disease progressed, she still asked to go home, only it became her childhood home in the next state. So, three times we took her there in the hopes it would give her some enjoyment and peace. We saw all the remaining relatives, took her to see her childhood home and areas where she grew up and thought it was a good visit. Well………….when we drove out of the drive, we asked if she enjoyed the day seeing the relatives and her old stomping grounds and she told us she would like to do that some day. She had totally forgotten the entire day and visit that fast.
What I am trying to relate with all this verbiage is I honestly don’t think there is an easy way to uproot someone, especially someone with AD. My mother lived with us for a year and a half before we lost her at 95. I still carry the guilt and have asked myself a million times over if I did the right thing and how could I have made life better for her. I had no choice because she couldn’t live alone and I didn’t want some strangers living with her changing shifts every 8-16 hours. Plus, you never know what will go on when your aren’t there and their minds are confused. It is hard to find reliable, trustworthy people and I just felt it best I knew what was happening to her, the care she received and what was fact and fiction in her mind. A nursing home was not an option, as I couldn’t bring myself to begin to entertain such a life for her. Yet, today, I even question if she may have done better there and had more stimulation. I did my best to play games with her and give her mind activities to enjoy and keep sharp.
So, lillyruby, try not to beat yourself up over this. No matter what path you take, there will be major bumps and deep ruts. Maybe some day you will feel the timing is right to take you father back to his home for a little visit, but, it was my experience it was hard on us all, yet how could I deny my mother that request? I so deeply understand how you feel and the heartbreak and guilt we, as caregivers, feel over so many decisions. With AD there doesn’t seem to be any right or wrong answer. The mind creates some terrible places for our loved ones to live and I found there it truly very little we can do to bring them mentally back to us. They get lost in the abyss of an, often times, very cruel world and the best we can do is try to get into their world and help them find peace with what they see and believe. Like the one winter night ~ 3am ~ my mother insisted she had to go pick up her brother because he had called and was waiting for her. He had died 13 years earlier (long drive), but she was fighting us to get dressed and go get him. Finally, I had to leave the room for a few minutes and when I returned, I told her he had just called and got a ride home and told me to let her know he would see her in the morning. She finally settled down, after much reassurance he did get a ride and, of course, by morning we were onto some other mission.
Please, try to find peace in knowing you are doing the very best you can for your father. It will be extremely difficult for both of you, but know you are a good person and love him dearly. If you didn’t, you would have placed him in a nursing home and forgotten him like some families. Not that a nursing home is bad, but some people use it as a dumping ground. As my father-in-law once sadly said when we were going to visit someone, “This is the throwaway society.” Sad, but oft times true.
However, you are here asking for help, trying to do the best you can. Currently, we are on our third parent living with us with AD and it is a struggle with all the accompanying issues of incontinence, wandering, weakness and potential falls, etc. Last night my father-in-law believed he was at a hotel and had to go down the hall to the meeting rooms. Other days, he is at work and other times he is fine. The mind is a mystery that no one has truly figured out, so we just do the best we can to do the best we can.
Please keep us posted, it is a challenge, but in the end, don’t beat yourself up or try to second-guess what you could have done better. You are doing your best!! That is all ANY of us do here. My mother has been gone for almost two years now and I still find myself wondering if I could have, if I should have or why I didn’t do thus and such to give her a better life in her final years. It is only human and it is not only hard, but heartbreaking. Don’t go it alone, there are so many of us here that have walked that same mile in your shoes, we know and understand how you feel. We even understand and have also had the not so nice thoughts that come with the territory. So don’t hesitate to vent, we don’t judge, just offer what we have experienced and found worked in our particular situations, as well as what didn’t. By sharing, our prayer is to find hope, peace, understanding and love dealing with an unbelievably difficult situation that no one, especially our loved ones, should have to struggle through alone.
Hugs and support!
This is a great example of what we go through. So just do what you can, and be very forgiving of yourself if you can not do anymore even though there are lots of good ideas floating around as to what you might "want to do."
Just like every family does not get to go to Disney World. Every family will do this transition to 24 hour elder care differently. Some has to do with money, a whole lot has to do with the temperment of the individuals involved.
If he's going to live with you, you'll have to clear out his old home anyway. Why not let him help with that? It might make him feel more empowered about the move. I'd be pretty crabby if I was moved without my permission, which can sour a relationship.
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