First time poster! I am so glad I found this forum!
It all started in 2005 when my grandfather had a heart attack and stroke. He was in his 50’s, and it literally took everything he owned from him. It was devastating. He raised me, and took care of me for most of my life. He was my rock. I left high school to help take care of him since he was paralyzed on his left side, and could no longer move. I was always close by to help until I was about 27. At that point I needed a change, and moved myself and kids about 3 hours away from home and restarted my life. Fast forward to about a year ago, my grandmother growing frail at almost 70 could no longer take care of him, and due to his developed dementia and Alzheimer’s caregivers and homes were not as accepting as you’d hope. So last June he moved in with me. I was very familiar with his care, and we were very close. I have a finished in-law suite that works out great for his needs. At first it went great with my grandmother coming about every month to visit him for a few days, and my peoples helping me care for him. I own my own business and was home with him all day, so it worked out pretty well. About 3-months in he became unhappy and wanted to go home, but that is no longer an option. It’s with me, or a facility. He feels “trapped” although we take him places, and spend time with him when we can. He has started yelling “call the police, he kidnapped me”, and “help” at the top of his lungs for no reason, which is concerning to my neighbors of course. Today he tried to smash a coffee cup over my head, last week he threatened to burn the place down. I love him and I don’t want to give up on him… he never gave up on me. I’m just at a loss as to what to do. A home is a death sentence because they will just “drug” him as they have done in the past. He is not cooperative in that setting and declines at a fast rate. As I write this he is yelling “help” and screaming obscenities at me because I took his cigarettes and lighter away after our coffee cup incident over a misplaced wallet (he has no money, but that's where his imaginary truck keys were). His anger is all caused by his imagination and making things up that don’t exist. Allegedly I wrecked his imaginary truck that I’ve never seen, and hid the keys to it. He hates me most days, so why do I even try? Why do I care? He is exhausting, and places extreme limits on what my family and I can do together since he can’t be left alone, and won’t go away most days. I feel like I’m trapped with no logical escape. I haven’t been able to leave my house all week, and he is insanely mean to my wife and kids, so I’m always the one…. I just have no idea what to do anymore. I can’t be responsible for putting him In a home and something happening to him and because he is irate most days they have given him fentanyl to calm him down which made his cognitive ability worse. I thought about having grandma move in too to help, but then in the same situation X2 eventually, and she is content with her daughter. She still visits, but it seems to make him worse sometimes.
Dementia is an umbrella term. It covers many types, Alzheimer's Disease & Vascular Disease being the most common. Biggest risk factors for Vascular Disease are stroke & heart attack.
Most dementia is progressive.
So it will get worse.
You will start grieving (if not already) for the wonderful Grandfather you knew from childhood.
But it time to let go now.
Your Grandmother has let go his care when too much for her. Smart practical lady.
You have responsibilities, career, family of your own. You have responsibilities to look after your own health too. You cannot meet those responsibilities if you allow the care of your Grandfather to take over your whole life, which it is.
People with Dementia need a whole village to care for them. It exceeds one caregiver as it progresses.
Even with a team of paid caregivers there comes a time where a home setting is not enough. For people who cannot voice their needs are not met, their behaviour will show as anger, violent outbursts, wandering. Paranoid thinking & mood changes are very common. The brain is being progressingly damaged (by brain plaques & tangles, or lack of O2 with Vas Dem).
"I feel like I’m trapped with no logical escape".
You are trapped at present by your thinking. Thoughts that you MUST do this, MUST fix it. Yes?
I believe you need to really look at your situation. Be brave enough to admit you cannot fix this. You cannot fix Dementia. You cannot stop it.
You said you do not want your Grandfather 'drugged'.
Would you rather him attack your family & feel fear 24/7?
1) What does your wife think about this situation? And the kids for that matter? You say that “he is insanely mean to my wife and kids, so I’m always the one”. That’s a lot better than most blokes manage, as many don’t even recognise “mean” to wife. But although you are taking most of the load, it still must affect your wife, and marriages fail under this sort of pressure. The dynamic between you both will always affect what advice you can use.
2) How many ‘homes’ do you have experience with? It would be good to look up Care Topics (click on it at the top right of your screen, then start by clicking on A for Assisted Living). The word ‘homes’ suggests to me that you don’t necessarily understand all the options, their costs and usefulness – Assisted Living, Senior Living, Memory Care as well as Nursing Homes. Most of our experienced posters would recommend doing a lot of research to find ‘a good one’, and being prepared to take an active role in supporting the person who moves into any of them. Certainly not 'just putting them in a home' and 'giving up on them'.
3) When was your last experience with a ‘home’. Fentanyl has come under a lot of criticism, and its maker has just settled an enormous law suit for the damage it did to many people. I’d be surprised if it’s used much now, except for short term extreme pain. Another thing is that the early days of Covid were particularly difficult for many aged care facilities, their staff, their residents, and the families – many staff ill, no visits, high anxiety, new and stressful procedures etc. There were many very difficult experiences, which may have largely resolved now. It would be good to take a fresh look.
I’m glad you found the site and the (mostly) nice people who post to it. The more detail you can provide, the better the advice you can get! Yours, Margaret
I agree, I need to do some research and find something that is a great fit for him.
my wife understands his disease, and so do my children. They are not very affected by it, but that leaves just me to care for him.
I have considered hiring another person to come in home to care for him.
Bottom line, you are basing making the decisions about his (and your) CURRENT NEEDS on information that went stale YEARS AGO.
You “……can’t be responsible for putting him in a home and something happening to him”, but inevitably SOMETHING WILL happen, and whether he’s in the best residential care setting you can find OR in your living room, he will either be cared for by trained, objective professionals or by emotionally entangled, subjective, loving YOU.
And by the way, you have no real evidence that the fentanyl CAUSED cognitive decline.
You have arrived at the point of NO GOOD SOLUTIONS. It is not a pleasant place to be but many of us emerged on the other side, after being where you are AND WORSE.
TODAY, plan to take a few minutes to make yourself a list of residential care sites in your immediate area. Hopefully your state will have evaluations of the facilities you wish to consider.
If you have access to two or three or four sites, do drive bys and consider the ones you may wish to visit.
Unless your grandfather has been seen by a geriatric psychiatrist or psychologist or neurologist already, arrange for him to be seen by someone in at least one of these disciplines ASAP. There is no reason for an elderly person to be drugged to a stupor unless more sophisticated treatments are tried first.
MAYBE (probably) NO medical solution will be perfect, but you may be able to do a lot better for him than was done previously.
I’m thinking the rest of the people you live with have missed you terribly, and I bet you’ve missed them too. Fix that. Reshuffle the balance. If necessary hire a strong young male psychology major to keep tabs on Grandpa for a couple hours while you do some family thing that you all enjoy. See f it balances your perspective a little differently.
And finally, be sure EVERY DAY includes something you really like to do YOURSELF. You areSO WORTH IT.
It is time to find placement for your grandfather. It sounds like he has moved from needing lots of help to being a threat to you and your family (the coffee cup incident). Some people with dementia get violent, and that's the last thing you want in your household.
Once you have accepted that fact it's time to start researching places. The concept of "The Home" is much changed these days, and the sooner you start learning what's in the area the better. Sometimes there are waiting lists to get in, so start now.
And don't feel guilty! Your grandfather would not want this life for you and your family.
Best of luck to you all.