Well my husband has dementia, and getting worse everyday. He also has an ostomy. I have to change that bag every week. This week he said he is not a sissy and doesnt want the bag. So that was the start of my day. This is not easy, and really you are alone. My kids long distance, think they help me with suggestions. They don't. Friends have abandoned us, they don't want the drama. I still take him out everyday for 2 hours. Just to get him to wash and brush his teeth. Been on eldercare wait list for over a year. So we can talk all we want, but we are alone, living a lonely life. And the responsibility of someone who really is no longer the same person, we are a caregiver. It drains the life out of you. You need to find a way to get some little bit of respite. I tried. But he doesn't want anyone in the house. I am responsible for everything, cooking, cleaning, banking and his 24/7 needs. I have been yelled at and pushed and I could go on, but why bother. It's a lousy end for you and your loved one. Friends see you coming and they look the other way, no invites, no nothing. Kids big ideas, but no help. So just know the truth....You're on your own!
There are provisions made for the community spouse when one spouse goes on Medicaid. You don't lose your house if it is jointly owned.
The question is, how do you go about changing this situation to save YOUR life and YOUR sanity? You do not have an ostomy, nor do you have dementia. Yet you've devoted who-knows how many years to full time care giving and now you're about at the end of your rope, and rightly so. Dementia normally reaches a point where you cannot care for the sufferer at home anymore, even if you sincerely want to. It's just one of those facts of life you'll have to face up to one of these days ANYWAY.
If you can afford to place him in Skilled Nursing, do so asap. If you cannot afford it, apply for Medicaid and have him placed. He may not be happy at first, but he will adjust. You will go visit him every day, if you'd like, and you will bring him little gifts & treats, and you will sit with him and stroke his head and tell him you love him, but that you have to go home and sleep and shower and live what's left of your own life in some semblance of peace and harmony.
I work in a Memory Care community as a front desk receptionist. Every day I meet with husbands & wives who have placed their loved one here, because they had to, and they come to visit. They take their loved one out for a walk around the property sometimes, or for ice cream, or lunch, or for a drive. Or sometimes they just sit and talk. One gentleman comes twice a day to see his wife; once in the morning until about 1 pm, and then he comes back around 4 and stays till 8 pm. Right now, in fact, this gentleman is setting up the conference room to serve Thanksgiving dinner to his wife (who lives here) and his daughters. He even brought his mother's fine china with him! He's found a way to have his own life, and to have HER cared for properly at the same time. It's a win-win for all concerned.
It's okay to surrender and say Enough. It's time now, don't you think? Please get the help you so desperately need and DESERVE. You are worth it.
By eldercare do u mean homecare or LTC placement? Medicaid can help with both. So, if you are waiting for placement, then see if Medicaid can help with an aide a few hours a day.
Perhaps it is time to consider AL for him. There are some very nice places out there today, not anything like 50 years ago and all the post stories people keep rehashing. Why not tour a few and see what you think.
Sending support your way!
Please don't give up. Things can get better.
Also it may be time for him to move into a care facility if it too much for you. Maybe there are other facilities besides the one that you are still on the waiting list for.
I know this is very difficult but also try to be as positive as possible when asking for help or even seeing old friends. Say hi and be glad to see them. Even if it is just in passing. And when you do get help, and you can get out more, invite someone to meet for coffee. Be genuinely glad to see them. Sometimes people don’t know what to say or do but they can follow your lead. You are in my prayers, Joycee1.