I've been caring for Dad for two years. He has dementia and is to the point where he doesn't always know who I am, never believes this is his house, fights with me every night that he has to go to work, and all of the other symptoms of dementia. He's well into the severe stage; his disease progressed quickly.
I work FT (from home on the computer) and have moved into his home in another state. I am with him all day and night. I am starting to feel less and less patient. I don't know if it's a phase or not. I snap at him sometimes and then feel awful.
But it's just so exhausting having the same fights, several times a day. Being asked the same questions a thousand times. Cleaning up after him because he refuses to do what I ask (go potty as soon as you get the urge, leave your medicine in the bowl and take them from there, don't line them up on a table and then lose them; take a bite and chew it before you take another one....)
I know this isn't his fault, but he was always a selfish jerk, so when he does something "stupid" I feel all that old resentment come back. 90% of the time I was patient and kind. The last two weeks, I'm down to 70%.
I'm on my own and finances are tight. I don't want to end up being mean and bitter. But I'm not sure we can afford a nursing home, so I'm trying to hang in there as long as I can. (FYI, Medicaid or other aid are not an option.)
Where is the tipping point with this? Do I keep going until the situation is totally unbearable? Do I give up now and pray he won't hate me and that I can find the money (his brother lasted 5 years from the obvious onset)? Is it ever right to consider your health and sanity over theirs? I love him and I want the best for him. It just feels like I can't give my best these days.
When I try to bring up the subject, he doesn't want to go. I can't blame him; I wouldn't want to go either.
Is there an ideal time to admit him to a nursing home? Before he completely loses touch with reality so he can get used to it...or after? Has anyone ever heard from an expert on this?
Maybe I'll feel better soon. But what if I don't?
How about respite care to allow you to breathe and figure things out? Currently, my husband is in rehab for a few months. I’m getting a much needed break. Check with local facilities to see if you have send him to one for a short time. Some will give you a week at no cost if they think you might place him there.
Good luck. I know exactly how you feel. There are times I’m not exactly proud of the way I act around my husband, either. .
I know he won't get better. That in fact, it will get much, much worse. But I wanted to try to keep him in his home for as long as possible. No one wants to go into a nursing home. But he doesn't recognize where he is. And he'd forgotten my name before, but this past week he hasn't remembered my face. He used to calm down when I walked into the room. Now, I never know.
There are a few other options to explore, but to be perfectly honest, I'm exhausted. The idea of getting on the phone, being put on hold indefinitely to talk to some government flunky is the last thing I want to be doing. What little patience I have I need for my dad.
Respite care may be an option. But it feels like a lot of work (getting the appt, packing his stuff, getting him there, having to visit) for not a lot of time. Plus if it goes poorly, he will fight me tooth and nail when it comes time to be admitted to a nursing home. May be I have a defeatist attitude.
Thanks, though, for your response. I'm sorry we're both in this situation.
I know I did the right thing. He has been in memory care for over 2 years and is now fully incontinent, totally confused, almost non-verbal. It has deteriorated rapidly since Christmas. The memory care facility was WONDERFUL in guiding me through the process of moving him to the home. My mom refused to help and it was 100% on me: all of the paperwork, planning, moving, etc. Hardest thing I've ever done but it was kinda like ripping off the bandaid.
For some reason, I can't personally reply to all of your comments. The reply function does not appear on every entry.
So please know that I appreciate your comments and sympathize with your situations. I wish there was an easier way for all of us.
You need a break and you need it now. Get one month respite so you can recharge. He will be fine, he doesn't need to be happy and agreeable, just safe and fed.
Vegas has some really nice facilities that accept Medicaid. It is close enough for weekly visits and far enough that you can't be expected to respond to every small "crisis"
This person is no longer the dad you knew, do not kill yourself trying to take care of someone that needs a village, his brain is broken and he can't help himself. You still love him and will be his advocate and visitor, but you will also be able to be his son again.
Have you checked to see if there may be reciprocity between NV and AZ for long term elder care? Can't hurt to check.
In the mean time can you get an aid to come in and help dad while you get some space for yourself?
Something has to give or your health will and that is not really an option. You matter as well and you need to make sure you are doing okay or neither of you will be. It is not selfish to take care of you and do whatever you need to with dad. They do get to a level of required care that facility placement is the kindest, most loving thing you can do, whether they see it and agree or not.
As I understand it, we can only get one week of respite, which is why it seems like too much work for too little respite.
He does not qualify for Medicaid. Pensions are over the requirements. Unfortunately, he was a compulsive gambler his entire life, so there is no savings, no life insurance, no long-term care insurance. The other issue is that he has a home, in which I'm living. If we run out of money, I will have to sell the house, which means I have to go back to where I live and he will live his remaining days without any family. I can't do that. Right or wrong, I just can't. Plus the house is in such bad shape, I don't even know that we'd get enough to pay off the mortgage. And the idea of having to handle that on top of everything else seems impossible.
He does still have moments where he is himself. I think that's why this is so hard. If he completely forgot me, was in danger, or was so out of control that I couldn't manage, I think I could be OK with admitting him. But while I still see 'my dad', it seems wrong to ship him off to a nursing home. I'm riddled with guilt for something I haven't done yet.
I've asked about some sort of reciprocity between NV and AZ and no one has heard of it. Part of the problem is that I don't always know the right places to look. I've made dozens of phone calls, searched websites and gone to support group meetings. No concrete answers, which is maddening.
I have been given a few weeks of a CNA to bathe him 2x a week, but next week that goes to 1x/week. Same with PT. And in a couple of weeks it all goes away. Because finances are tight, I'm not sure I can spend the money for an aid. I'm trying to save everything I can so I can pay for the nursing home, his home and my home.
I know on some level it isn't selfish to take care of myself. I have a chronic health condition myself and this is very, very hard. But I'm so terrified of doing the wrong thing that I just keep living like this.
Thanks again for your reply.
For me it was Safety.
If it was not safe for me to care for my Husband at home I would have to place him in Memory Care.
If it became unsafe for him at home I would have had to place him in Memory Care.
Luckily it never came to that. He was sweet, kind and compliant until the end.
You have a few options depending on what stage he is. Is there Adult Day Care that he could go to? That would give you a break a few days a week.
Is Memory Care an option or is he eligible for Medicaid? In many cases it is easier to be a private pay for at least a year before Medicaid has to kick in.
You say Medicaid is not an option have you talked to a lawyer to verify this?
Is he a Veteran? If so the VA might be able to offer some help and depending on where and when he served the VA is altering criteria for classifications for "Service Connected Disability"
If you are sure that Medicaid is not an option, the VA is not an option then it is limited to private pay in a Memory Care facility or keeping him home and hiring caregivers to help.
They are the folks who likely know the answers to the reciprocity question and above all, if a Miller trust could be the answer for getting Medicaid.
I understand how hard it is when they seem to be there sometimes. Maybe a nursing home isn't needed, maybe a lesser degree of care would work or maybe an adult activity center for a couple days a week.
You are in the unfortunate position of not being able to see the forest through the trees. You sound desperate and I am concerned that you are working so hard to keep all the balls spinning that you don't know how desperate you are. This is serious for your health and wellbeing.
Can I suggested that you do some research on qualified income trust, aka Miller trust, which no one in AZ seemed to know what that term meant except ALTCS. Qualified income trusts are the trusts that all of dads money would go into, he would be allowed to take xx dollars monthly for his care and the rest would stay put until his death, at which time the beneficiary would receive the funds, Medicaid would be the beneficiary. Worth checking into.
If he loses his house, oh well, you have a home, so you don't need his. They can't come after you, unless you are on the mortgage, they wouldn't be able to recover from him, they would get the house and you wouldn't be trying to manage 2 households.
What about placing him in the city you live in? You can check out the resident requirements and go from there. Maybe turn his house over, move into yours and then you have that expense done and you can use the money to hire aids until he becomes a legal resident.
You are paying the consequences for his poor life choices, you don't have to do everything his way. You can tell him how it is going to be and he can move with you or go into a facility. His choice.
Even if you continue doing everything exactly the same, you need to know that you have choices, how they can be implemented and what you need to do to make it happen. That will give you some hope in this situation that seems so hopeless.
My mom has done the same thing, no money to maintain the house because of gambling, no savings, life insurance or emergency fund for the same reason. My heart goes out to you, it is a frustrating situation to watch.
Please find a way to pay for the extra 3 weeks, you really need to get away from the trees to see the forest.
There is no adult day care in this area. He is not eligible for Medicaid and is not a Vet. I have not been able to find an attorney who will help. He lives on the border of two states. Resides in one, nursing homes are in the other. It's a mess. There are two memory care facilities in the area. One is nearly $2,000 more per month than the other, and I'm not even sure we can afford the less expensive one.
I'm afraid there's no answer to any of my questions. Not even sure why I posted. The situation is such a mess. I guess I'm just grasping at straws.
Thanks for trying to help.
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