My mom and I are caring for my dad who is probably going through the middle stages of dementia. I moved back in with them when I got sick with an incurable degenerative disease about 6 years ago.
My dad and I had a strained relationship throughout my teenage years, and I left home for college at 18. With time, maturity and a couple of years of therapy on my part, our relationship got somewhat better. Even for the past couple of years when he started having dementia symptoms, things were ok for the most part. Lately though, things are drastically changing.
Im pretty aware of the personality changes that dementia causes. But that doesn’t help much when you’re being grilled for whatever he feels you should know or be aware of that he feels is important at that moment. And he demands to never be left alone.
He just had an episode of incontinence of #1 and #2 that lasted 2 days, non-stop, no sleep, no time to eat, nothing. Literally every 3-5 minutes he would scream “I have to go”, and I was there to take him to the bathroom, help him off with his clothes, clean up any mess,,etc. He was soooo appreciative. But I knew that would end.
I see him and I shudder about what I’ll have to endure today. I hear him scream my name from downstairs and I know I’ll be put through the wringer or I’ll at least be stuck sitting with him, listening to him blather on about something pointless and probably insulting. I don’t know what to do with this new person. I’m about at the end of my rope. I don’t want to leave it all to my ailing mother, but living in fear is no way to live and not healthy for my condition.
Thanks for listening. I don’t know if I wrote to vent or to see if anyone has advice. Probably a little of both.
Aggravated? Yes. Sad? Sure. Fed up and burnt out? Definitely. Sleep deprived and hating this living situation? You bet. But "terrified"? Has dad threatened you or previously assaulted you? Or your mom? Has his behavior become so erratic that you are fearful of what he might do? Those are possibilities with dementia, so I could understand your feelings then, but because he is terribly incontinent and "blathers about something pointless and probably insulting" should not result in your "living in fear".
But regardless - clearly your living situation is no longer tenable. You voluntarily moved back into your parents' home after a terrible, incurable medical crisis, but if you can no longer live like this, if this feeling of being terrified is bad for your mental and physical health, then move out. Not wanting to leave it all to your ailing mother is noble, but of your health is as bad as you insinuate, there really isn't much you're going to constructively be able to do for dad much longer as his disease progresses, and right now you're just propping up this illusion of independence your parents have - which isn't helpful to either them or you in the long run.
Leave. That's my advice.
Can you find an in-person support group for family members dealing with dementia in a loved one?
It sounds like your father is ready for placement. When the verbal and aggressive behaviors starts, it sounds like mid stage dementia. These behaviors can be frightening to witness.
You are probably worried what will happen to your mom if you left. So far, you have been acting as a buffer and protection of your mom. Even the best of caregivers know when to throw in the towel once it gets to be too much. Either our own health starts failing or we start having financial worries. In most cases, it's both.
Our loved ones will always get the proper care. However, who is going to be there for us when our turn comes for care?
Bulldog asks what you intend to do about your living situation. It's unclear to me whether you are on disability or not, and unclear what your prognosis is, but living with your parents was likely not the best decision here. Now that your father's dementia is worsening he will soon need to be in care. Neither your mother alone, nor your mother and yourself will be capable of caring for a gentleman in need of 24/7 care of several shifts of workers with several workers each.
If you are currently on disability I think that you badly need for yourself now the intervention of social workers to work on safe housing and some care for yourself. This doesn't sound on the face of it to be sustainable. I am really so very sorry. Please access all the social services help you can.
You have to now do what is best for you and your health, and if that means moving out so you can have some peace back in your life, then so be it.
As again, your father is NOT your responsibility.
You and your mom shouldn’t be taking care of him now. You have your own health problems. This is unsustainable, and it needs to stop. Good luck with what you need to do now. Be strong and firm, and keep in mind that dad can’t call the shots anymore. He’s much too sick to be in charge.