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After what we went through? The avoidance, denial, and stigmas attached to Dementia and Alzheimer? I hate it but its understandable. I think it effects people when they see how bad things can get. I see it has human nature in some ways, but on the hand I want to say, "PEOPLE WAKE UP!"
My second grandparent that had Alzheimer's would be my grandfather. We called him Poppaw. We as a family had a hard time of it helping to care for him. We lived 1,000 miles away, and my grandmother (Mimi) and he were a very traditional southern couple.
Mimi made a promise to him regarding NO nursing home, and letting him to die in their house. That is all well and good, but my grandmother was in her mid 80's at this time. She as well as starting to slip mentally, and I'm sure part of it was the stress of caregiving.
My mother was of course in contact with the state they lived in, and we found out very quickly how individualistic the state was.
It was hard to get them to cooperate when it was clear to us that we needed to have Poppaw removed from the house. It made no sense the resistance that we got, because he was clearly a danger to himself and others.
You would have thought they would have CLUE one after the police picked him up from wandering the streets of his town, and having to bring him back home (this happened more than once)! That's just ONE example! Another would be the soot on the ceiling of their home from a fire at the stove.
We contacted their church that they had been going to forever, and we (and the church friends) attempted to WELL drive him on in one day to a senior living facility. That blew up in our face, and yes there was encouraging 'talk' about this prior. We didn't just drop the bomb of course. He would have nothing to do with it that day, and being they also came from a very traditional religious background? Well, lets just say since he was the 'authority' of his home they were going to respect his wishes - the church.
We were also in contact with the state social welfare type of service. They were going to send over a social worker to the home to access the circumstances. We warned them that my grandparents were an old southern couple, and to please send over someone of the same color.
That is one thing we noticed about my Poppaw was his - well BIGOTED - way of looking at things tended to come to the surface more readily as he got more advantaged with Alzheimer. The state of course ignored that request, and my grandparents wouldn't allow the social worker to even come into the house.
The state at that point pretty much told us they were our problem. We then hired a private party (caregiver) to come into the home, and help as much as was humanly possible. We had to do something while we figured out our next move.
My mother took a number of trips down to their house, and my father, myself, and my brother took turns going with her. I have to say I do resent the fact that the state pretty much refused to help us help them.
They told my mother if she wanted to move my grandfather into a Alzheimer's facility she would have to do this on her own.
I will never forget my mother's comment.
"I can't do that! He will hit me! My mother will never forgive me as well if I pushed it that far."
Poppaw was a big man, and at that point was more hot tempered. My father at that point was terminally ill, and wasn't able to help 'force' him out. YES, I did say FORCE because that is what the state told us we would have to do in a nutshell.
There was one day when I was there that I will never forget. Poppaw was sitting on the sofa. He had lost so much weight, and he was dressed like a homeless person. He had his pajama bottoms on under his pants that were to big for him at that point. He was dirty, and he was weak.
Their church at this point had already stopped coming to get them for church services. He was getting too belligerent at this point for them to handle at church. There were stories about how he was hitting people there as well, and I'm sure loads of stories of his agitation. I can't blame them there okay? What I was more mad about was the fact they pretty much abandon them altogether. The phone calls stopped, and so did the visits. This couple that had dedicated their lifes to this church were all but forgotten. We didn't find out about that until the caregiver we hired told us.
My grandparents were getting to point where it was overwhelming even for the caregiver that we hired to handle things in our absence. Things tend to happen pretty fast just when you least expect it I guess. We had all kinds of logs in the fire as to what avenue we needed to try next.
Meanwhile, trying to keep my grandparents healthy and reminding them to EAT! More than once they had 'meals on wheels' come to the house, and my grandmother wanted to take the meals and strength them further. She would divide each individual meal between the two of them. So the two dinners they received for that evening - one for each? She would turn it into one, and save the other for later.
My mother made one final attempt with their church, and this church was the one she grew up in. The church was pretty powerful in that area, and she told them something awful was going to happen if SOMEONE didn't help her.
From what I gathered the church contacted the state, and threatened them. If something happens to our 65+ year members of our church WE will be coming after you. I'm sure it was said nicer and more politically correct. The only thing I was thankful for is the threat worked.
The sad part to all this? It was to late for Poppaw. My mother was down there when they were finally removed from the house via the state. We did have warning, and mother flew down there. Both my grandparents were placed in the hospital, and I was going on the next plane. I went straight to the hospital from the airport.
Poppaw had lost more weight than the last time I saw him. He was in a general area within the hospital, and was so weak they had him laying down on a stretcher type of thing. They cleaned him up, and placed a nice sweatsuit on him.
I remember my mother telling me that she mentioned I was coming to him. How he looked at her, smiled, and looked rather pleased. He always called me his favorite granddaughter. I have to giggle here...I was his only granddaughter.
I walked over to him, and introduced myself of course. He looked over at me, and just smiled. I grabbed his hand, and smiled back. I mentioned to him how excited I was come again to see him, and how I just got off the plane to rush to his side. He squeezed my hand, and shook a little. He just beamed.
I can't tell you the sense of relief I had when I saw him that place. I knew he would be taken care of, and that was if he lived. He wasn't in good shape at all.
We had our short conversation, and he seemed so happy that I was there. It was strange because he had trouble of course knowing WHOM I was in the past, but that day there was a connection of sorts. I honestly do think he did know me by the way he was acting. He was doing things he had done with me all my life. I'm talking body language we had used since I was a child. The special times just me and him.
Mom drove me back to the hotel, because their house was in to bad of shape to stay in. I got a bit settled, because we figured we would go back in a little while to see Mimi as well. I told my mother I was going to get a newspaper at the front desk. I was having some coffee, and paying for the newspaper when my mother walked into the lobby.
As we walked back to the room together she told me the hospital called. Poppow died right after I left him. He must have died while we were driving to the hotel. My mother told me he must have been waiting for me. He let go right after our short visit.
There is way more to the story of course, but every inch seems like a nightmare from hell. I don't think most states handle things like they do in Texas. Mimi and my other grandmother we got out of the state, and we brought them to where we live. I hope Texas has got better at handling things since then. From what I learned not all states handle these circumstances the same - THANK GOD for that!
I think after my mother in law saw all the circumstances we had to deal with? I guess it would be easy to say its just dementia and not Alzheimer. I can't blame her. My father in law died in the very early stages of dementia, and thankfully she didn't have to deal with most of the nightmares that can come with it.
Why not stay in her state of mind when you don't have to go there, and deal with the stigma that is attached to this? I can't blame her. I wish I could do it! On the other hand? That doesn't work to well when you are trying to raise awareness, work towards a cure, and bring to light barriers of caregiving, etc though does it?
Talk about a rock and hard place.
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