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!
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.
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.
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
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
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.
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.
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.
With advanced dementia, I'm not so sure he could check himself out of the facility he is in. Check with the doctor who diagnosed him with advanced dementia and ask him about writing a letter explaining his condition, that way when it comes time to make decisions you will be better off legally. Is there any financial ability to have a home health care nurse stay with him at his house? Good Luck.
Please talk to his doctor or a geriatric psychiatrist who can prescribe a mild antianxiety medication. The medication will help him to relax until living in his new "home" is more normal for him.
Don't even try and make him comprehend or understand; trying to make him understand will only agitate him more. Even if he is lucid - it won't last and he won't remember, you will just end up in a continuous loop of explaining. Instead of explaining tell him that the doc wanted him here until he is better (of course he isn't really going to improve but it is easier to blame the doc).
You all are doing the best you can. I would venture that this was the best of all the other alternatives open to your father and the family. Is your father safe? Is the facility taking care of him. He may not be happy, and yes the move may have made his dementia worse. Know that the question "when can I go home" may be asked a lot. In addition to dr orders, distract him elsewhere.
Learn to pick your battles and unless it involves his safety, learn to go with the flow. Let the small stuff go - and know that now most of it is small stuff.
However, it has only been a short time. Give him time to adjust - No he may never be happy there, but can he be happy anywhere now? Try not to visit too much or take too many phone calls from him. Set up a schedule to visit once a week and talk to him about once a day. This will leave him to rely more on his caregivers, meet others and hopefully participate in activities provided. Stay in contact with the staff to see how his is doing. In the early visits go and accompany him to some activity he may like to get him in the habit of attending activities. Take him treats occasionally. This is a very hard time on everyone concerned; especially on him.
Take it a step at a time and research his dementia to know GENERALLY what to expect and maybe tips to deal with all the new things he will throw at you. And finally, find humor where ever you can. A good sense of humor can make all the difference - I know sometimes you may feel you'll never smile or laugh again. Best of luck to your father and the rest of the family.
I will print it out for future use. Gena / Touch Matters
There are several technical devices and techniques for reminding a person to take their medications and getting the dosages correct. I did hire someone to provide companion care which included making sure my father ate and took his medications when he lived in the senior apartment before moving into memory care. I moved him to MC when he starting falling.
Put yourself in his shoes and think how upset you would be if someone made you move out of your home. You would have to have the right motivator to make it worthwhile and that might be safety. Or it could be other people. Or it could be fun activities. What can you do to make it feel more like home to him? My father never felt at home in memory care because it was so restrictive and limiting. He was a fitness buff. Postpone it as long as possible.
Your post was 4 days ago, but only showed up for me today. If you haven't had this driving test done yet, I would suggest skipping it. License or not, many with dementia will still attempt to drive. They either forget they've lost it or scoff at it being taken away, as in their mind they are perfectly capable of driving.
The best solution is to be sure he has no access to a car.
He's already upset, so why upset him more? He's suffering the loss of his "home" and this removal of license will just add insult to injury. We took mom's car away. Never had her driving tested and let her keep the license, even after it expired. Doctors were not helpful - only one did anything and that was just to scribble on scrap paper that it wasn't safe for her to drive. She scoffed at it and threw it away. None would contact the DMV. But, even if they did, the problem lies with having access to car and keys. Dementia impacts short term memory, so they forget being told their license is gone, but it also lies to them and makes them think they are fine and capable.
If he's in AL, he may need more care that MC provides. It takes time for all to adjust to the new environment. You have to avoid discussing dementia and other topics that are upsetting. You won't be able to reason with him or convince him anything's wrong. This is his new reality. It's best to acknowledge what you can, fib about going "home" and try to change the subject. If possible, try to get him engaged in activities when you visit. Most places have a calendar of activities, so choose those you think he might engage in, then go with him.
Since his meds are now "managed" by the facility, no need to try devices, but for those in similar circumstances, they have timed locked dispensers that have visual and audible alarms. They can't take doses missed, but you will be aware when you check it/refill it, and they can't take extras. They will only have access to that day/time. Keep the containers either locked up or store them away from their home.
Do not give up on him! I have found out recently that they are discovering methods to help people with many diseases ...including dementia! This does not have to be the end for him. Hang on and bring him home!
And what are these methods you found to help people with dementia live alone. Please share I am sure everyone here would love access to these miracle advancements only you seem to know about.
I thought dad was good to be in assisted living but he really needed memory care (even though he was much better off initially than the other residents there). He's changed a lot and i'm glad he is at a place that is used to dealing with dementia versus the assisted living place where they really aren't trained for it.
If he can, it wojld absolutely be better for him to move back to his home that he is familiar with and let him live what's left of his life where he is most comfortable.
Go thru his meds with his Dr and see what the worst could happen if he stopped taking some. Most Seniors are taking way more meds than needed.
Wold your Dad rather live a little longer life in jail or maybe a little shooter life in his own home?
If your Dad us capable of going to the bathroom and warming up microwave meals, Let him live at home and hire someone to stop by for an hr or two to help out.
You can also install a Nest Camera or two in his home where you can monitor him 24 7 from a laptop or your Cell Phone.
They are easily installed and that's what was done at my Dad's house.
You could put the most important meds in a weekly reminder case and even call him every day and watch while he takes his pills.
Prayers
The important thing is to understand your limitations, get placement, continue to visit, and sympathize with the losses, respond that you understand it is difficult, and that you grieve with the loved one.
I am so sorry. Not everything can be fixed. Not ever situation can have a happy ending. I hope with time there is more adjustment. There may be, there may not. Most elders who act happy are putting a good face on things. For my own bro he said "Well, I can't say I LIKE it, but I tell myself it's like when I was a young man in the army. I don't have to like it, but I have to make the best of it". I was so lucky in that attitude, but he was in the beginnings of his losses, and died before he had to experience each, and I had to witness those losses for him. In many ways I count us the lucky ones in that.
I made a list of all of the things that my father would need to be able to do independently if he were to continue to live alone in his house. I shared the list with him, pointing out that he was no longer able to do any of them or it was unsafe to do many of them.
I agree with some of the others that he really needs memory care this point, rather than AL.
Basically, SAFETY must override his COMFORT.
Thank you for that, best description i have seen yet. helps to understand what it is they REALLY want. You my be able to satisfy the emotional need somehow!
Nainoa sometimes just reminiscing about the complaint will fulfill the emotion they are missing. Like what is it you miss most? And then turn it into a session that will evoke those feelings. By the time you are done he may have forgotten the complaint because you have fulfilled the emotional need for now.
My Mom is so advanced in her decline that she doesn't remember how to do much other than get dressed and go to meals. On occassion, she will get her nails manicured and her hair done. The routine there is helpful, and we take her out and visit to keep her engaged with us, family, and friends. She gets very anxious with anything new, so we have to be careful about how long she visits us or we visit her.
I learned here at Agingcare.com that "safety trumps happiness," and it's very true. Every doctor agrees that she needs 24/7 monitoring and I've finally come to terms with it. I don't think she will completely, but at least she now accepts that she lives there. Do what you know in your heart is right for your father, since you now have to make those decisions in his best interest. Best wishes to all who struggle with this.