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How To Know When It's Time
A myALZteam Member asked a question 💭

How does a family know when it's time for Dad to go into a skilled care facility? Dad has declined so much recently, and is even starting to occasionally hallucinate, and believe that police are looking for him or my mother. He has become very angry and argumentative (especially with Mom, whom until this point in time was the only one that could keep him straight). Mom is legally blind, so this adds to the fun... but she has a GREAT outlook, and always has a smile on her face when possible… read more

posted October 20, 2018
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A myALZteam Member

I feel that you could be writing about my husband of 52 years. He was always such a lovely gentle man, however, when he suddenly turned it was very scary. I did all I could to keep him at home, exercise programs, you name it. I had no intention of ever sending him in to care. When he started hallucinating and always trying to get out, threatening to put a rock through the window and becoming very angry and aggressive towards me I knew the time was getting nearer to place him in care. I often had to call on my sons for help. I always contacted the age care facility twice and then changed my mind. When I knew the time had come, the guilt I felt was terrible and still is, just signing that form still haunts me. It has been 8 weeks now since he went into care, and luckily I am only a short walk away and visit twice a day. The grief I feel is very different to anything I have ever felt before, I just sob and sob. I am starting to sleep a little better now and try to exercise and really look after myself. Financially it is hard and would have loved to keep him at home with me but unfortunately it is not possible. Take care and look after yourself, unfortunately, we are not alone this is a horrible disease and really takes its toll on families.

posted October 26, 2018
A myALZteam Member

I am in a very similar position, however I have just placed my mum in a care home. it is the worse thing I have ever done and feel so guilty but I have to keep her safe. She could no longer go out alone or she would get lost or run over, she was wondering into the neighbours houses at all hours. I brought her to stay with us but after a month I realised it was time for someone more specialised in Alzheimer's to take care of her. She has being getting really angry and aggressive lately just like your dad and wants to hit people all the time when she is agitated. Everytime I go to visit she says she wants to come home but she does not know where home is. When I mention this to the care manager she tells me that when I am not there she is fine, she has made a new friend and they are stuck together like glue. She joins in all the activities (even though she tells me she does nothing all day) and eats three good meals a day ( even though she tells me they are starving her). To be honest she looks the best she has for a while. I just have to get rid of this guilty feeling that is eating me up:(

posted October 23, 2018
A myALZteam Member

@A myALZteam Member, this is so hard and I'm sorry you are facing the discussion about placement. Eight weeks ago I placed my sweet husband of 51 years in a memory care community. I realized I had been ready for several months in that I was exhausted and had lost some of my patience once in a while. He began not sleeping and doing things that were unnervingly unsafe like reaching out to the hot glass topped kitchen stove or reaching for hot pans. I had made many modifications to make our home safe but I began to realize that it could never be really safe enough. He had a non-injury fall when I had briefly left the room and that ended up being one of the three hospitalizations in less than 2 months. Suddenly I was clear that I could no longer care for him at home. So, in a round about way, I'm saying that you will just know even if there is no single defining event. It's okay if a lot of that knowing has to do with you more than him because without you at your best, he is not getting the best care.

Now that his daily care is done by professional caregivers, I visit daily and often take healthy favorite foods and, since he has lost some weight, I feed him at least once a day. I look forward to my visits and also try to engage with the others who live with him as well as the caregivers and nurse while I'm there.

There is great grief that comes with realizing the person you have shared your life with can no longer live with you. Last week I found myself sobbing at times unlike anything I've experienced in years; this week I'm doing well so far. At the same time, for me, there is joy in carving out a new life for myself. He continues to be the most important focus overall but I am also finding ways to give back to my friends, my church, and my community. Oh yes, there is also the getting enough sleep and some exercise and some time to go to a play, movie or concert alone or with a friend. I believe that even in marriage there is a balance of two equally important lives. If this disease were one that lasts only a couple of years, I would feel differently. I cared directly for my husband for the past 9 years (I know others have cared for much longer) but now I am putting myself into the equation for whatever remaining healthy years I have. I watched my wonderful sweet father-in-law give the final 22 years of his life for his beloved wife leaving him with just over a year of horrible quality of life.

posted October 25, 2018
A myALZteam Member

I have health care coming next week to assess my husband. that, in itself, was a hard decision. he had become aggressive, but medication has calmed that until today when he started getting angry again and doing a bit of pushing. he is also now have incontinence problems. he recognizes when he has to go, just won't use the toilet. my floors are being washed more now than when the kids were toddlers. not sure what to do about that one. not sure if the time has come or how close it is, but it'll be tough.

posted October 29, 2018
A myALZteam Member

Thank you so much for sharing your experience. It sounds very similar to our experience. I'm so glad it's working out for her (and you!). Now I need to figure out where we can afford to have him. That part is almost as hard, or harder. We don't provide much for our elders, unless they are fortunate enough to be wealthy. It's shameful, really. Please don't feel guilty, you are showing your love by taking care of Mom. I understand, though, and I think we all have that "guilt" over doing what is necessary. I suppose it's like when we parent our children, and have to teach them lessons. Sometimes it's harder on the adult, than it is on the child. Good luck to you, Sheeba.

posted October 23, 2018

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