I know the answer to this is different for everyone and I think the simple answer is, "when you can no longer care for the person, that's the time." But it's never that simple is it? Those of us who have taken on this role are racked with guilt even while doing the best we can and often better than many others.
In my case, my dad isn't *that* bad. I mean, he has moderate-severe dementia and gets aggressive at times (I've written about that elsewhere), but he's managing. I'm managing. Sort of. I don't live with him full-time. I'm in his home during the day, usually 8-5, during which time he sits on the back porch (more often in his room at the door to the porch) chain-smoking. He'll microwave food I leave for him and sometimes fix a bowl of cereal, but he doesn't do anything around the house and incontinence is now a daily event. He doesn't bathe himself unless I force him to (and I'm not about to start helping him shower!). I don't spend the night here most nights. He's had a couple of falls recently, one at 3:30am and I had to meet him at the hospital for minor skin scrapes. He has an emergency alert system, but he doesn't remember to use it. He now says he doesn't know how to call me when I'm not here (I'm 10-15 minutes away when I'm not here). I don't know if this is true. It seems to me he fakes some things to get attention. He often complains of being lonely and bored, but he's never had any hobbies. He threatens suicide (but he's been doing that since I was a kid) and tries to "kick me out" of his house. I'm lucky because I work for a tech company so I've been able to work remotely and look after him. It's been 2.5 years. I'm 40. I have a domestic partner and he's very patient with it all, but we need to live our lives. My siblings are in the UK and rarely call so it's all been on me.
At the end of the day, he probably could go on for a while in his own home, but that would mean me giving more than I already am and I just can't. He was abusive when we were kids, which is one reason my siblings don't care. I don't like him. I can't stand the smoking - I stink like smoke every day. I hate it when he gets mad at me and says mean things. I worry every night I'm going to get a call that he's fallen again. The neighbors are starting to make comments about me not being here 24/7. We can't afford to pay someone to be a full-time care-giver.
I saw a lawyer yesterday about getting guardianship because I know he won't go into a home (and I've found a nice one) without a fight. That's going to cost $1200. I don't want to do it through Adult Services.
I know I need this. I think it would be better for him in the long run - more people, more activities, better care, help if he falls etc, but in the short-term I can't help but think how sad he's going to be. It's another loss of freedom and I would hate that for myself. But still, I struggle. What if I can make it another couple of months? But what if he falls? What if the neighbors call adult protective services? I don't want to change my life more than I already have and some may say that's selfish, but I've looked after a man for 2.5 years who terrorized me when I was a child. I've done more than many, but still I feel this terrible guilt.
I'm wondering if lying to him would help. If I tell him I'm getting married, adopting a child (not true), and can't do all of that and look after him. I did think about telling him I was sick, but that seems too big of a lie. Thing is, he might agree to it all and then 5 minutes later he'll forget and be angry again.
This decision is harder than the one I made to take my mom off life-support when her cancer won. Isn't that crazy!
If I start the guardianship process I have to move forward and put him in a home because once I have that, I can't leave him alone ever and I can't be here 24/7 and can't pay for care.
I think there are questions in there somewhere!
1. Is it the right time? Am I a bad person for now wanting to give up more of my life.
2. Is it okay to lie if it gets him to go into the home and stay?
3. How do I deal with the guilt of making this decision?
Thanks for reading!
The lawyer said it would be about $1200 and that was her fee and filing fees and mailing fees (we have to send certified letters to the siblings in the UK). I was never given to understand that guardianship could cost thousands. I think it can be more expensive if it's contested etc.
The lawyer called the probate judge (it's a small town) and he said because I have a letter form his doctor stating incompetence and I already have DPA that they can expedite the process.
I can understand why you'd want to fudge the truth to your dad but your motives will be of no concern to him and because of his dementia he has lost the ability to reason. Don't expect him to be reasonable about having to move into a facility. You could tell him that you have a brain tumor with 8 weeks to live and can't care for him anymore and he'll ask you when his lunch is going to be ready. You don't need to justify you actions. Your concerns are valid. Your desire to see that your father is taken care of is all the motive you need to help him into a long term care facility. But you know your dad, we don't, and little white lies when dealing with someone with dementia are often necessary.
What it comes down to is if you can't continue caring for your dad then he needs to be somewhere where he can get the care he needs. You're not a bad person because you are considering this. And you should do something before it gets out of control and some nosy neighbor calls Division of Aging (or whatever it's called in your area). Once the state gets involved things could get very messy and stressful.
I do have one concern. A lawyer quoted you a cost of $1,200 to obtain guardianship over your dad. Is that just the lawyer's fee? Usually it's thousands and thousands of dollars to obtain guardianship.
I think you'll do what's best for your dad. You're obviously concerned about him and care about what happens to him despite his mistreatment of you as a child. I think your dad is very lucky to have you looking after him. Any choice you make will be because it's in your dad's best interest.
I've tried the local Council on Aging and they were not much help. The lawyer I saw did tell me I could do it all for free by going through Adult Protective Services, but when I spoke to them they weren't very nice and I think it will be more upsetting for him to have strangers come out and investigate the way he lives. I can scrape together the money to pay the lawyer and I've told my siblings the least they can do is help me pay for that!
I forgot to mention that although my job allows me to work remotely, they want me to start traveling more. When I travel for work I pay someone to come in and I can't afford to do that for 4 days every month! Plus, I have a lot of meetings I hold vie web-conferencing and even when I put up notes, he's been known to walk in and start talking to me!
I know well the "fake fall." He was doing that a lot about a year ago and I'd see him lower himself to the floor and then yell for help, but he was never injured (of course). He fell out of bed a couple of times and got hurt so I got him a railing. Well, a month after the railing went up, he falls again and scrapes the skin of his arms - doesn't remember what he did, but for a time insisted he'd fallen over the railing on the deck! No evidence this happened and he would have had to throw himself over it! I just can't tell what's real and what's now. I don't know if he's hamming up for sympathy or is telling the truth! I did a mini-mental with him yesterday and gave him some additional tests I saw on a documentary. He got 13 on the mini-mental. I think the last time the doctor gave it to him he got a 19. But again, he may be playing up his forgetfulness. Or he might not be!
My friend that took care of both parents, had a stroke at age 60. She was in REALLY good health, exercised and took care of herself. But, the stress was too much. Good luck.
It will be difficult for your father to not smoke...that could be extremely difficult as he won't be allowed to at a facility.
I received a lot of support from Elder Services and they can help you deal with each of your above questions. Try to not feel guilty by realizing that you are looking out for his safety and care needs. In so many instances, there are no conditions under which the elderly person will be happy, unfortunately, so you have to plan for what works out the best. I believe and know my mother faked falls, etc. Mental health problems and dementia contributed to her problems. She would even fake falls at the NH as the nurse would call me and say she actually saw my mother sit down next to her bed - she did not "fall". This went on and on until she actually got "tired" of doing it I think. This is sad, but it is out of our hands as to how they act. Keeping them safe is the most important thing and if living at a facility is the safest for your father, you will know it is the best choice. The social worker from Elder Services told me that often lying to them or as they called it - "fiblets" are necessary as the truth is something they won't accept or acknowledge.
Blessings to you and hugs across the miles.
I think some people who feel guilty about placing a parent may feel that way because they have underlying issues about their relationship with that parent. Just my guess.
See, I KNOW that, if mom was in her right mind, she'd be mortified at the sacrifices I make to care for her. Absolutely mortified. But in her present mental state? It's all about me-me-me. Ha!
I hope you'll begin to realize that there comes a point when enough is enough. To admit to yourself: "I can't do this anymore" isn't wrong. It's realistic.
I'd get social services involved -- The Council on Aging -- whatever it's called in your area and tell them you're on overload and can't keep on keeping on. They'll get the ball rolling. They'll visit with him . . . they'll have ideas for you . . . and you'll get your life back. There's nothing to feel guilty about. Believe it!