After 44 and 1/2 yrs of being together, he has had a difficult time adjusting to being apart from me. I'm not able to take care of him at home any longer, even with caregiving help, going to a dementia day care program and hospice services. 24 hr. home care wouldn't work because he would be looking for me and wanting me to help him. Our children and his close family supported his placement. Our 3 children still say, "Mom, we know that you'll make good decisions." He was better for a few weeks about me leaving the facility, but last night he begged me again, "Please don't do this to me. I just want to be with you." That used to happen a lot for the first 5 weeks. I've been back and forth with hospice saying we (sister, her hub and me) should refrain from visiting for a few weeks (which wasn't a good decision), and now, visit often, but don't take him out too much. His sister, who is beside herself over his decline, is having a lot of trouble, as am I.
Hospice and the facility feel that he shouldn't leave the facility grounds too often so he is able to see the facility as his home. We should try to only take him out to lunch or off the premises once or twice a month. His sister and hub would like to do that more often, and take him to their home, where we spent many fun times. As far as the facility, the grounds are beautiful, as is the facility, and there are ample sitting areas inside and outside where we can relax and enjoy the weather or take a walk. Over the holidays I took a week away to visit family, and they took my hub to their home. On Christmas Day, they took them to a family gathering. It was probably too much, because he didn't eat much and kept his eyes closed on Christmas Day. Today I called hospice and asked for a family meeting with his team so that everyone is on board. I agree that taking him off the premises too much isn't good. He doesn't always recognize the people whom he used to know, including our children and grands. The world is confusing and there is much that he can no longer do, like using eating utensils, seeing and identifying nearby objects, using the bathroom alone (he wears pull-ups), etc.. His hospice RN said that he will feel safer in an environment that he knows and I get that. She told me that family tends to want to do things that make us happy, but aren't necessarily good for our Loved One. We project our wishes on them. I think that's true. We dearly want to give them good experiences and return to our former days of joy, but their world is no longer the one that they knew. It's very hard. I love my s-i-law and her husband. But I feel like I'm between a rock and a hard place, and frankly, they're upset and I am, too. I don't want to destroy our relationship, and I'm lonely and need their support. Any suggestions, dear ones? It's a horrible, horrible disease!
Mind blowing.
I work in a Memory Care community & see this all the time. We had a woman living here who's son refused to accept the degree of dementia his mother was suffering. Nope, wouldn't hear of it. She was non-communicative; didn't speak at all. So his brain child was to have her learn SIGN LANGUAGE as a way of communication! Sign language; a complicated thing for a person in GREAT health to learn, never mind someone with dementia who is incapable of learning ANYTHING new!!
Denial; it's not just a river in Egypt.
I like BarbBrooklyn's advice about what to tell your family members. Also, the MC can only allow him to go out with people the POA AUTHORIZES him to out (off the premises) with. If you don't want anyone taking him out of the MC, don't give them that authorization. Period.
And tell your family members to read up on Alzheimers at Alzheimers.org .....doing so will benefit everyone who loves this man.
Good luck!
"His doctor says that wouldn't be a good idea" should suffice.
If it doesn't, you say "well, I guess if you sign off on being fully responsible financially for the fallout, including the need for 24/7 aides"...
Somewhat I feel that your SIL is afraid for herself, that she will also get this disease and thus wants to pretend that it really is not happening at all or that it is not as bad as everyone else thinks. She is trying to make herself feel better.
Yes, I so agree with the hospice, he needs to stay put, this is his new home and he needs to acclimate himself to it.
It may take some time for your SIL to accept what is actually going on, in the meantime you will have to support Hospice, this is in his best interest. What I would say is "For now, I have to go along with what the trained professionals recommend, I am sure that they will notify me if something improves",
As said, ur in the driver's seat. As his wife, and maybe POA, you make the decisions. When Mom went to an AL, I was asked to list those people who could take Mom out of the facility. Maybe your going to have to tell facility no one can take DH out without running it by u. As said, tell SIL ur between a rock and hard place but after speaking with Hospice visits need to be cut back and no taking DH out of the facility. Its for DHs good.
Closing the eyes is what Mom used to do. Weird thing was, she spoke more coherently. Maybe is a protection thing. ALZ/Dementia people overwhelm easily.
In order to maintain a good relationship with your SIL and other close family members, you must establish healthy boundaries for yourself. Repeating yourself over and over is only hurting you.
The doctor has made it clear that taking your husband off the premises is bad for him. At the family conference, let it be known that no one can take him off premises anymore. That is not up for debate, your decision is final and you will not change your mind because family gatherings can just as easily be held at the MC and you all need to adjust to the new normal.
In the future, a firm "Please respect this gut wrenching decision that I have had to make" may signal to others when they are crossing the line. You have every right to end a conversation that is becoming unpleasant and intrusive.
I would also think about having those family members sit in on a meeting that has a speaker that discribes what this disease is, what changes, what the patient goes through, what is best for them, what spouses go through, etc.
It is not easy for anyone to see this happening to someone they love or know. Especially if it is the first time for them. They have to understand it is not easy for the person to be comfortable or understand the things they use to. Their world needs to be smaller, less confusing, less stimulating, but NOT less loving.
As the wife, your decision out-weighs hers. And the Memory Care Facility is thinking of your DH first and foremost, which is as it should be.
Your SIL is not deliberately trying to hurt you and doesn't realize that she is affecting you.
You ARE doing what is needed and that is rarely if ever easy. You are doing what is best for your DH. You are listening to the advice of Hospice and the Memory Care Facility and that is paramount.
Tell your SIL that as much as you value her input, you feel it is best to listen to skilled nurses and are following their advice.
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