Dad feels abandoned

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We can't find any information that deals with placing a parent in dementia assisted living and how to handle the transition. We we're able to discuss this in advance because Dad never wanted to live if he couldn't take care of himself (normal extremely independent Dad). Now he feels out of control and abandoned. He tries to give people money to buy his way out. He just wants to go home.

Any advice out there? This is killing my sister and me.

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Just wondering what your Dad's symptoms are. Does he have dementia? It is a hard transition for many, to be placed somewhere against their will. To have daughters making the decisions makes for a difficult transition, too. The emotions you experience are real, acute, and natural. It's hard on the family, as well, and requires patience, grace, and gentle, loving spirits. Prayer helps more than anything, as God can do what no human can to help everyone. I love these posts, and you will find many ideas and suggestions around the various threads. Have you talked with counselors, other family members, and support groups? There are many good books available on Caregiving and dementia subjects, as well. Everything helps. It's a sometimes rough, but ultimately rewarding road. Sometimes it's rocky, but a learning and growing experience for all. Love smoothes many troubled situations. You and your sister can comfort each other and Dad. Many of us will pray for you all as well. Thanks for sharing your story and questions. I, too am a big sister, and we have a tendency to take on a lot of the burden. So be gentle with yourself. Keep posting, and let us know how things are going. Anne
Yes, sorry Anne, Dad has dementia. In looking back, I posted when I was frazzeled. He is a danger to himself and others in that with his dementia he "thinks he's fine". So the doctors that recommended the placement "don't know what they're talking about". His short term memory and reason-ability are very impared. Correction on my first post: We weren't able to talk about it in advance because he never wanted to live if he couldn't take care of himself. Now he can't but he doesn't realize his limitations. It's a blessing and a curse. It's so hard to reason with somebody that doesn't have any reason left. What a cruel disease. We're doing what we know is in his best interest, but he doesn't know that. He just knows he wants to go home and we're keeping him from his house, his boat, his girlfriend and his dog.
Can related to your feelings. My Dad was wandering into people's houses, and getting lost while driving, and starting to get in trouble with the law, and didn't understand any of it. He was placed in a Geriatric Psychiatric Ward, then moved to a Nursing Home. His Physicians say he must have 24 hour care, and cannot be on his own. He couldn't even be with family because of his behavior with certain family members. So sad. Just visited him today, and he can't even express himself in thought. He tries, but everything is incomprehensible. I just smile and nod and repeat things back to him. He asked me questions (that don't make sense) and I just ask questions back. It makes me wonder what he's thinking. What he says is all jumbled up. He looks at a clock and says, "He is that," and so on... I just give him my smiles and hugs and presence. And when he lays down for a nap, I go home. He doesn't understand my conversation with him any more than I understand his. A little over a year ago, he was still at home and paying some of the bills. Hard to believe how much decline he's had in such a short time. The Alzheimer's is insidious.

My husband's Dad is his roommate. He is 89 and wants to get a car, a house and 10 acres for a raspberry patch, find a wife and have another family... It's not Alzheimer's, but some type of dementia, and has lost his judgment and the ability to adequately care for himself. He was over yesterday, and helped clean out leaves in my garden. He was also stepping on my flowers. He tried to ride my boy's bicycle, but couldn't. He does not, like your Dad, realize his limitations. He wants to go home, too, but was defrauded out of it.

Very sad when it comes to all of this. Neither can live with us, because we'd never sleep for fear of their actions... So we visit every day, as possible. We play Checkers with one, put puzzles together in their room, and take walks together. My son plays piano for them, and they have lots of activities at the facility they're in. We take them for drives, when they're up for it. Anything we can do to make them feel loved and cared for... And they seem fairly comfortable. There's been an adjustment period for both. They sleep a lot. Neither could survive on their own, but we won't abandon them, either. They get tons of attention from us, the staff, family and visitors. We are thankful for facilities that can care for our loved ones in such a caring way, and encourages our involvement. We're also involved in a Dementia support group there, in our town, and I find encouragement from this site.

I hope you find a good solution for this difficult situation for you and your Dad. Sounds like you have the love part in place already. Will be praying for you. Take care, Anne
There's a great book out there called the By Families For Families Guide to Assisted Living written by Ryan Malone. I've spoken to Ryan personally and he's one of the good guys. Good Luck and have Faith, Neil
Hey big sister, you wrote exactly what I have been thinking. It seems to me there should be some type of business that caters to that middle, or inbetween step from home to assisted living facility. My father sounds much like yours, diagnosed with ALZ, not aware of the depth of his problem, believes the Dr. doesn't know what he's talking about, etc. He cannot live alone for personal safety, but is not ready to be in a facility either. I cannot imagine what he would do all day, as he is really into being outside, or with family. I think going to a facility would definately caused a downward spiral, but am running out of options. I was going to try to put an ad in a medical college to see is anyone wants to study ALZ close up, and be Dads caretaker when I go back to work. There certainly is no other way to really learn about this disease until you live with it. Books certainly won't give the same type of experience. But so far I have just been kicking around the idea and haven't acted on it yet. Any comments or feedback on this idea?
Hi Neil, looked on Barnes
Hi MIssyH,

My Dad wouldn't allow anyone to live with him either because "he's fine". We found, by trial and error, a total-dementia facility. You have to go to a larger city to find specialty facilities, it seems. They had the additional "amenity" to be a locked facility for exit seekers. Many assisted living facilities aren't set up nor staffed for active exit seekers. Also, everyone in the staff is trained in dementia care, from the way the facility is laid out to how Dad is interacted with day by day. My Dad is having to leave his old life behind, where he was home with total control over everything. This part is VERY, VERY hard on him and us. He's lost most of his "logic" so you can try everyway you can think of to explain it to him, and he's just not going to get it. You feel guilty and he feels betrayed. This disease isn't either of your's fault. He wouldn't have chosen to have it and you can only do your best with what you have to work with. One thing I would suggest to you AT THIS POINT is a geriatric care manager. Again, might have to search in a larger city. These people can help with resources and "been there/done that" expertise. We haven't used anyone yet, but have a name and number from our Elder Law attorney. We're hoping this might be helpful as we've found other contacts we've had so far, to not only not be helpful, but detrimental in a lot of cases. Good luck - this sucks.

Bigsister
Tweeners are the worst, sis! Mom's making a yo-yo out of us. She lives 200 miles away. So away we go again, today. So many health concerns. She's on waiting lists, but doesn't qualify for some. Already hired help, but Mom's "fine" when they are at her house. I'm thinking dementia comes and goes in the early stages. Or... Someone needs to study her. Any takers???

Dad peered out from his blankets yesterday as we cleared out some of the heavier winter clothes from his closet and drawers. Life in a dementia care facility :( Wouldn't it feel awful to have someone pawing through your few remaining belongings (nursing, laundry services, daughter) and not be able to dress yourself or have control over anything??? Either he's wonderful at adjusting, or doesn't really know what's going on. I wish he could be home. But I'm also glad he's safe. Our other Dad (FIL) has lost judgment. Just some missing pieces, but can still communicate and knows us. I hate Alzheimer's and dementia. Thanks Sis, Neil and Missy
The book may only be available on his website - it's pretty new and worth the read. I tried to post his URL but it looks like the system deleted it. Try searching for insideassistedliving and you should find it.

Re. MIssyH's comment about an "inbetween" environment, that's the gap that the homecare providers try to fill. The National Association for Home Care and Hospice has a "consumer info" tab that can help, but you'll need to work at it - their website isn't put together very well.

I agree that the middle phase of dementia (moderate dementia) is the hardest on everyone involved - us and our loved ones. Deep inside we hold on to the hope that they might get better (or at least not get worse) because they can have "good moments"... but the "bad moments" bring changes that neither we nor they have ever experienced and you never know when they will happen so we're all totally unprepared. Its exhausting in every way. My health care experience was a huge benefit - it taught me to have no expectations and just deal with exactly what I had to deal with at that moment no matter what it was. It's still a rollercoaster but the valley's aren't as low.

I strongly recommend that everyone struggling with a loved one with dementia (whether it's diagnosed as Alzheimer's or not) contact their local/regional Alzheimer's Association. I have found them generally to be a group of committed folks who have a wealth of information, insight and experience and they know the local care providers.

I also want to urge everyone to be ultra-cautious and ultra-diligent about the care their loved one receives. Learn and watch for the warning signs of abuse. At some point you will not be able to rely on what your loved-one tells you and it will be completely up to you. Make a quick and thorough visual, physical exam a part of every visit regardless of how uncomfortable it might be for you. There are good facilities/providers and bad facilities/providers (believe me...I'm in them every week) - but remember a grand piano in the lobby does not equate to good care. Care isn't given by the administrator, the marketing/sales person or the admitting nurse. Care happens at 4am when your loved-one wakes up confused and combative and it is delivered by the Certified Nursing Assistants (CNA's).
Bigsister, it is so difficult to see our dad's decline. Especially when all of us girls are daddy's little girl no matter how old we are.

My dad, when he was somewhat lucid, agreed with the attorney that he wanted me to provide for him. Problem is, my dad is old school Greek. Girls don't provide for the men no matter how they feel or love their daughters.

I'll never forget his rage when he was in assisted living and I came to pick up some papers from the facility that I needed for a 2nd apartment (LONG story there). They had the papers for me at the reception area and dad caught me while I was there. He asked me what I was doing and I told him I needed to get some papers. He asked what for and I lied saying it was insurance information (he wouldn't have understood a 2nd apartment). He got so furious with me that he worked for the insurance company (which he had), that I didn't have to worry about a thing. The insurance company does it all, etc etc and he got so mad he was in tears. The poor receptionist felt so bad they called a caregiver to come distract dad from the conversation, which worked.

It broke my heart. You do what you know is best. He will adjust and if the facility is really worth any weight in gold they will work out a plan with you. I had to fill out a mountain of paperwork with hobbies, likes, dislikes, foods, you name it I had to think about it. They worked out a plan based on his needs. Their motto is that they want to make the assisted living as much as their home as possible but with the assistance.

Take comfort in that while you do what's necessary. God bless.

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