My sister and I looked around for a long time to place my dad in a good facility. She works full time and I am not in a position to take care of him but have given her 100% support by doing external duties for him.
He was diagnosed with early dementia, but unfortunately it has progressed and he suffers a prostrate problem causing him to soil his pants from time to time, which my sister found extremely hard to cope with, even with her daily help.
He was placed in the facility two weeks ago and at first threw a tantrum when he first saw us. Now after the Respidal he is on, he is a lot more subdued, but he cried yesterday when he saw her whilst I remained in the garden area for fear of him really performing if he sees me. He is very heartsore that we did this to him and we feel so very bad and at a loss. We are thinking of ways we could take him back, but haven't yet found a solution to have him taken care of full time at home. Has anyone had a similar experience or any suggestions that might help to ease the pain both my sister and I feel.
I will tell you, my mom has short-term memory loss and has become a crier, which she never was before. The first few times she cried, it really shook me up, because that was NOT my mom. But I've learned that she'll cry and cry and 30 minutes later, she's forgotten the whole thing, because of her memory loss. I would imagine, with your dad's dementia, it's a similar situation. So it's probably much harder on you and your sister than it is on your father.
We can't make life perfect and we have to do what we have to do. And in this case, I think you've done the right thing.
I guess I want to lay it out for you that way because you need to understand that it's not going to get better. He may stabilize for a bit, but if you have had a quality workup that says that he has a progressive dementia you have certainly done the right thing.
What if he simply has a mental illness, and not dementia? Then your sister needs to talk to the psychiatrists attending him to determine what his needs are. But from your past and current posts, it certainly appears that he has both dementia and some sort of personality disorder, and is much better cared for in a full time care setting.
I suppose that some people may feel sad that they are not able to make their loved one happy and that if they kept them in their home, attended to their medical problems, changed their soiled clothes, prepared their meals, provided them with physical therapy, talked to them constantly, kept them from hurting themselves around the clock, provided their entertainment, and responded to every wish they made, that they would make their loved one with dementia happy. The problem is that even with all those things, the person with dementia is not going to be happy for long. The deterioration continues and the person will often cry, lash out, complain, become unreasonable and resistant. No one can make them content and blissful throughout all the stages of dementia. It's a fantasy if you think that can happen on your hard work.
I think that if you can understand that no amount of care can make them happy as you imagine it in your mind, you might grow closer to accepting your loved one's behavior.
His transition period may last for months, but IT IS NOT A SIGN THIS WAS A BAD MOVE. You have absolutely done the right thing. You now have all our permission to live your life, have happy days, enjoy things, and not shlep around some big weight of guilt.
My toddler son used to cling to my legs and wail like it was the end of the world when I left him at a new daycare. It was separation anxiety and it passed in time because he was able to learn that dad & I were coming back. Being there was in his best interest during the day because he got the care he needed. A dementia patient can't learn that anymore, so steel yourself for repeated high-drama scenes. Throw in the mental illness manipulation factor and it's just gut wrenching. One way to help this is not to hang around much.
If you want to know how he's doing, just call and ask. Explain that you're trying to let him adjust by staying away. My presence is an agitator for my mom, so I am not going to do that to her or myself just to meet some imaginary social obligation to "be there as much as possible".
My mom has dementia & personality disorder/mental illness at the same time, so our family rhythm is to visit about once a month and time it to be near any holidays. There is still part of me that wants to visit more than that, but it's a very negative experience when we do.
I think it's the 'early days' syndrome where we feel some guilt and or adjusting to yet another phase.
Ba8alou, good to know that we're not the only ones facing this. He will just refuse to get out of the car.
Torn between visiting and staying away.
On one doctor visit my cousin seemed fine and she repeatedly asked me if we were returning to where she stayed. She kept begging me to not leave her at the doctor office. She was intent on returning to the Assisted Living facility, however, when we pulled into the parking lot, she asked why were we stopping. She didn't know where we were. I had to explain that her room, bed and clothes were inside this place and that we had left there a few hours earlier. She was quite distressed and it was tricky getting her to go inside. Once inside, she asked to see her room and then she grew accustomed to the place and relaxed, but it was scary. That happened a couple of times. If she had flat out refused to get out of the car, we would have been in big trouble.
I would use extreme caution with outings when the patient is unhappy and ambivalant. Try to understand that what your dad may experience on an outing now is not what he might have experienced before dementia. He is not thinking the same way and may not appreciate the same things anymore. Is the possible benefit worth the risks? Unless you know the answer to this question I would use extreme caution.
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