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.
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.
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).
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
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
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