After years of trying to get him go to the doctor my dad was diagnosed with advanced dementia. In April the doctor said he will likely need assisted-living by the summer. The family including him talked about it and he agreed to go into the assisted living center near my house and at least try it for three months. Part of the issue was he was unable to remember to take his medication and we were hoping getting the medication consistently would be helpful. He begrudgingly agreed to do three months. When we began the process he would periodically freak out. Even though he originally picked out a 2 Bedroom Apartment at the senior living center every time he went back to look at it he forgot he had been there before and would get Really angry saying it’s like a prison why are we doing this to him etc. By the time moving in happened he had deteriorated even more. He’s been in there less than two weeks and is so depressed. He absolutely hates it there and wants to move back to his house but literally can’t carry out the smallest tasks anymore. He’s blaming it on the upheaval and I wonder if that could be part of it? Ultimately the issues he was having living at home were manageable if we were to get someone to go to his house and make sure he takes his medication and check on him. It’s just that we had all decided together because of what we know is to come he would move closer to us into the living center that is able to provide different levels of care And we moved forward with that. He has a driving test next week and he will lose his license. There’s a lot of underlying issues that deal with him being triggered with childhood trauma based on living in a facility like that. Within the first week he was absolutely miserable And depressed. One day he said he feels comfortable there and he likes it the next day he is absolutely irate and going downstairs asking the front desk how long is he there for and when can he leave etc. Even though it’s just a senior living facility and they bring you three meals a day snacks and just help him take his medication. I don’t know how to help him understand what’s going on and the reality is that if he really wants to leave there’s nothing we can do to stop him. The reality also is that he lacks the ability to do it. Any insight would be incredibly helpful. Thank you!
Yes it is challenging and requires fortitude to the nth degree; but your dad needs y’all to step up and be responsible. Find ways to help him. Think. Be creative. Granted the situation is fluid. Most of all protect him. Do you have children? Isn’t your dad’s behavior like that of a child. Once a man - Twice a child.
The disagreements come when its something important. Usually that is about taking her medications or having to see the a Dr. I hope that helps.
Yup. True lies are for CYA or hurting others. The "fibs" we use are to agree with them and, as you say, give them some sense of "control" in their life. As long as the timing of the pending activity is left vague, they are "satisfied" and usually forget.
Also:
"Now that she lives with us she is telling us how great it was there and she wants to go back."
So many interpret "home" as where they lived prior to AL/MC or some post-death "home." Unless they specify, it takes a little time and effort to go along with the desire and figure out what "home" really means to them. The first 9 months in MC, home for my mother was the condo she lived in for 25 years. Suddenly, out of the blue, she asked about going to her mother's (gone 40+ years) and if I had a key to the house, giving the street and town address. The condo was no longer "home" for her. It was sold 25+ years ago, but they owned it for many years, so it would fit into the 40+ years ago time frame. Other comments from her about a cousin's baby and her own sister were also in that 40 year time frame, so clearly her memory of anything more recent was gone.
Had the strokes not taken her, I suspect "home" would eventually have become some other place we had lived or where she grew up.
The memory loss will cause the switching of wants and likes everyday. My Mom will one day love liver worst and the next day it tastes really bad. Same package. Its because her sense of taste is changing but she doesn't remember that either! One day she is appreciative that I moved in with her, the next she demands I get out she doesn't want anybody and doesn't need any help. Just have to roll with it and change the subject. Next day will change again! By the end of 3 months your dad may have forgotten he was going back home in 3 months. Did you move some familiar items for him and make placements similar to at home? The more comfortable he is moment to moment will help him adjust.
Go with him to activities in the facility, walk around and meet people with him, make it as familiar as you can.
I sympathised. It must be intensely annoying to be faced every day with a series of stupid strangers coming into your house and insisting that it's dinner time, sent there by you know not whom and gazing at you like a lot of reproachful sheep over the top of their idiotic masks.
This lady doesn't know her own name, and considers it an unreasonable question. She can't identify bread. She insists that she's perfectly capable of getting herself a drink when she wants one: the reality is that she can no longer carry out the sequence of taking a glass from the cupboard and filling it, she doesn't know where to begin.
Dementia robs people of all sorts of different abilities, and leaves others wholly intact. It is a vicious b*st*rd.
1 - the earlier he goes in the better he will make the memories to be able to navigate the facility on his own = better quality of life in the long term
2 - when my Mum said this to me ... I gave her wallet & said 'there is everything in this to arrange your own transport home .... I don't think it is wise so you must do this on your own' ... it never happened so it was her choice [?]
3 - get him involved - my Mum did 10 activities a week not including religious ones - she loved the crafts, bingo, Friday afternoon 'HAPPY HOUR' with non-alcoholic drinks, sing alongs etc
Your father is right about the upheaval making him feel disoriented and unable to cope (not the whole story, of course, but certainly a factor). You only have to think how you could probably find your way around your own house blindfold to realise how much difference being familiar with a place makes to your everyday routine. But his new apartment is probably better laid out for his current needs than his old home was, so focus on that and find things to be ethusiastic about - how accessible/convenient/thoughtfully designed or whatever the features are.
Then, be reasonable in your expectations of him. Let alone the probability that he simply can't retain and process information enough to grasp exactly what's happening, there is also the point that even if he did understand - even at times when he actually does understand most of it - that doesn't mean he has to like it. He's entitled to his feelings. Acknowledge them. Move on, back to the positives.
Be reasonable in your expectations of yourself, too! - and have confidence in yourself, that you are using your best judgement to find the best option for him among what is actually possible. Best, unfortunately, can sometimes feel like "least worst"; but that isn't your doing. You can't solve dementia.
So: wait and see, and keep going. It's reasonable to hope that he will become more comfortable. Are you happy with the facility's approach to assisting him? - are you talking to the people there about how best to help him?
To Nainoa
It is indeed “the least worst” scenario, but you and your family made the right choice.
try to detach yourself emotionally (yes, it’s difficult to put it mildly). The priorities are that he is safe and has the care he needs. You are providing that.
Perhaps when he asks to go home, remind him that the deal was three months. Remind him that he is safe, he is loved. Keep repeating it. Can you read to him? Take him for walks? Sit and watch a movie.
i am sure you have discussed this with the Assisted Living staff. They may give you some “survival “ tips. This is not new to them.
I wish you strength in this complex and distressing time.
Take care of yourself. You can only do so much.
Bernadette
My dad passed away in 2018. He had his happy days and bad ones too, but I did the best I could given the situation. My mum also had dementia and she is not happy in the home. I'm going to be bringing her to one of our homes with a full time live in caretaker. I also have two other people to rotate for care taking, and I think she'll be happier there. The difficulty is though that no matter what, they have been deprived of their previous lives by way of losing their proverbial minds. It's a difficult situation at best, and you should not feel guilty about how you're dad feels. You just have to do the best you can.
I also recommend that you avoid reminding him of his decisions in the past. Stay in the NOW. Validate his feelings, so if he loves the facility one day and then hates it the next day, just sympathize with him and tell him you'll talk to people about changes he'd like. (Of course, you won't unless you feel his complaints are valid)
You'll be your dad's biggest advocate and best pal; - and you'll partner with his care team.
You'll be fine and your dad will be fine even if he has no idea that he's living with dementia. Diagnoses are pretty meaningless in my opinion unless they lead to much better care. One person could have been diagnosed with advanced dementia and still do really well with special programs and well-trained staff, whereas another person could have mild dementia and do very poorly and decline at an increased rate if they are deprived of intellectual and physical stimulation.