My elderly daddy was in a Nursing home for over a year and his physical and emotional health was rapidly declining after being told that he could never return to his home after a fall and rendered him unable to walk or get around without assistance. After a bit of convincing from myself and my family he agreed to come live with me and my Husband. He has been with us a little over 4 years now and is doing well. I have a caregiver come in a couple of hours a day to get him out of bed, bathed and ready for the day. I prepare his meals and put him to bed in the evening. But, now i'm feeling trapped. I can't take a day off, My husband and I can't go anwhere that requires an overnight stay or that is too far away. My husband and I find ourselves very agitated and frustrated at the situation as well. We don't regret having him and feel guilty for feeling this way as he is so happy and doing so well but, we are losing us? Our lives revolve around him now. I often find myself getting very impatient with him, not wanting to spend time with him at all and resentful. This is not in my character at all. I have always been a daddys girl and he has always been my hero but that;s all different now. He's become very selfish and is an "all about me" person now (only with me), which he NEVER was. He doesn't seem to appreciate anything I do most of the time and rarely says please or thank you. I feel like a maid and servant to him at times. I have a hard time concentrating on my Full-Time Job a lot due to worrying about him. ie, his Health, Drs. Appts,, caregivers showing up, how am I going to pay for this or that and the list goes on. I can't imagine him not being with us as I truly love him and know that he's where he should be but, how can I get back to being me? I want to look at him that way I did without feeling the way I do. I want to like being around him and look forward to seeing him again. I don't wish any harm to him and would love for him to live forever but, I am tired and just need a break from it all. We financially can't afford to pay anything more than we do already so, here I am..Homebound and a beck and call girl and my frustration is growing larger and my patience growing thin. I love him so much but, sometimes I have a very hard time showing it as even the slightest things he does annoys me. What can I do to find some balance and peace for us all?
The reason to get rid of your resentment is so that you can be happy. If you're religious, then your other motive is to be more like the Buddha or like Jesus, but the best reason is to make yourself happier.
What has helped me is to repeat over and over, "He can't help it. It's the disease." It's 98% true. The other 2% is that he too is pissed at what has happened to him. His anger is aimed at the universe, not at you. It hits you and upsets you, for sure, but it isn't aimed at you.
Another thing that helps is to step back from your own very real misery. Think about his suffering, his shame at not being the man he was, his dependence on you. Let your compassion rise, and feel the flow of love for him as a wounded creature. Express your sympathy. "I bet you wish you could do this yourself." "Isn't it a pain how complicated they make these remotes?" With luck, he will soften, be nicer and easier to love. Even if he doesn't, you have briefly transformed yourself from a resentful drudge into a wise, strong, compassionate person who deserves a pat on the back. Do pat yourself on the back, because no one else will!
The real lifesaver in our house is humor. When he orders you around, can you reply, "Yes, your lordship!" Lots of guys enjoy irritating their lady love. If you suspect he's like that, let him know in a super-dramatic way that he has succeeded in getting under his skin. If he laughs, everybody feels better. Let him win whenever you can. When he wins, everybody is happy.
It sure sucks, but there are things we can do to make it a bit easier. I hope I've helped a bit.
As a cranky person myself, I might have useful insight into how you could tweak your conversations with Dad to leave you both a little happier. This is NOT intended as any kind of criticism.
When he snaps at you or orders you around like a maid, stop for a second. Search back to the "little girl" days and pull out a memory of how very much a little girl loves her daddy. Then give him sympathy, with a bit of humor mixed in. "Oh Dad, I bet you wish you could get that drink for yourself, and didn't have to wait for me. Old age ain't for sissies, is it." Then give him a hug or a pat, and go get the drink with a lighter heart. I bet that will make him smile.
You still have an extremely heavy load, but 60 seconds of closeness can give you a tiny break.
Oh, I bet he's BORED! My husband is, and it makes him very cranky. Is there any activity he can get to? Does he have any friends nearby? Is there anyone to call on the phone or Skype with? Does your local Area Agency on Aging have a program with volunteers for companionship? Can he get wheeled out to the local donut shop to chat with the other geezers? The amount of social interaction possible is one of the plusses of living in a center.
If Dad's money is all gone, have you applied for Medicaid? You don't have to be poor for him to receive benefits.
God bless you!
and restore balance to their lives and relationships.
Google these people - if they can't help, maybe they'll know someone who can?
I have a few other suggestions for you that might help.
Are you a member of a church or other religious affiliation? Often there are groups that will offer to help. Maybe not hands on care but sitting with your Dad so you can get out. Running errands for you or bringing in a meal now and then.
Is your Dad eligible for Hospice? If so contact Hospice. As a matter of fact, contact Hospice and let them determine if he qualifies. No longer is a "6 month" life expectancy necessary. As long as there is a continued decline and treatment for terminal disease is discontinued he may qualify. Hospice has a CNA that will help you at least 1 or 2 days a week, a nurse will visit and there are volunteers that you can use to sit with your Dad while you go out. And Hospice does have respite if necessary. And many supplies are provided. It is worth a call just to get an idea what it is all about.
I love my Hospice team.
Daddy is not a veteran, they denied him due to having "flat feet". Who knew? I used every dime for him in-home care, medicine and additional insurance. There's nothing left...actually, there's more outgoing than incoming and that's where we kick in. There's no additional funds for ANY extra care at all. Medicare doesn't pay for respite and my only brother is not local nor dependable. We do not have any family near us that can help. It's just me. I've taken him from an assisted living as he wasn't getting the care he needed. He nearly lost his foot due to a pressure ulcer and bone infection. He's very well taken care with me as he has 1 caregiver to himself...not 1:12. He has a foley and infection risk is insanely high. He nearly died when I agreed to put him in rehab after a hospital stay due to this. I worked in the SNF industry for 8 years, I know exactly what goes on there. They are NOT in it for the people. Those people have floating dollar signs above their head and that's it. Please don't get me wrong, there are some (very few) facilities that aren't like this but, good luck in finding one. I have an amazing caregiver and company that I can depend on take care of him while I'm at work, there just isn't any additional funds right now for us to put toward extra care for him for us to get out of town for a few days. We are trying our best to make this happen. Thanks for the comments and the prayers. I appreciate you all. God Bless
I find a lot of people on this site seem to lump the two together. Maybe it's a regional thing, but where I am (mid-Atlantic USA), they are quite different and, you should take a look at what's available in your community before judging whether home care is 'always' better.
If you and/or he are too resistant to making a move to AL (please, at least go look at a few of them) or the $$$ just doesn't work (again, check into actual rates before you say it's impossible.) look for a senior day program for him.
I agree with others who've said that the reason he's so demanding of your time and attention is that his world has gotten much too small. That leaves him only to focus on his own immediate needs and desires. He needs to have something other than himself to occupy his thoughts.
Not to harp on it, but if you really want to become the daughter again (instead of feeling more like unpaid, unappreciated help), a move to AL can really help with that.
My father is lost in his dementia, but I feel still that I'm his "little girl", and he loves to talk about when the family was young and all five children were going concerns for him and my mother. I encourage his long-term memories in the absence of short-term ones, and perhaps that helps foster the feeling.
I don't know if this will help you (we're all so different when it comes to how we handle emotions and responsibility) but when I feel resentment, I try to remember all the sacrifices he made for family, and for five children and through a 62-year marriage.
On the other hand, you do deserve a life of your own, we all do. If you can get away from time to time, it might make a big difference. I recently went on a short 2-day stay out of town (if I'm in town, I'm constantly checking into the situation), and it was vastly refreshing. You have to weigh the disruption to his life versus the benefit to yours, of course, but ultimately it's in your father's best interest if you are happier and healthier. It's no joke when they tell you that caregivers need to take care of themselves first.
Please keep us posted, know that you are not alone, and also that you are an awesome daughter who is not just Daddy's little girl, but Daddy's hero right now, even if he doesn't seem to appreciate it or acknowledge it.
You are doing pretty well to remember, even, how much you love and care for your father deep down; and that you really do is clear from everything you say.
But in all the stress and labour of the care you've been providing, even the strongest emotional bond can be broken beyond repair. So before you get to that stage, rethink the whole schedule. Look at the budget, remembering that Daddy's care can quite legitimately be charged to Daddy's income, and work out a proper diary that includes real time away for you and your husband together as well as routine support at home. It's a need, not a want. Without it, the bad feelings that are so painful for you are going to get out of control.
Angel is correct in that if your Dad were in assisted living he would have the help he needs when he needs it. He would have activities that would keep him busy and people that he can talk to and possible day trips to keep him involved and entertained. This also allows you to get your life back, be the Daughter you want to be, the Wife you want to be.
Allowing someone else to manage the day to day things lets you stop being a caregiver and be a daughter and wife.
If you really want to keep your dad at home with you then you need to have a serious talk with him about how you feel. This is only if he is competent and can fully understand the discussion. Set some ground rules. and stick to them. There are volunteer services that can take him to doctor appointments if he can manage alone.
If he is fine alone is there a reason why you and your husband could not get out for a "date night" ? (if you haven't) If you want to stay out late ask the person that comes in in the morning to get him up if they could do the same one evening and get him into bed.
You do need to take time for yourselves. You are burning out. But you do not need anyone to tell you that!
I cared for my Dad full-time for 6 months before he passed away. During that time Mum was in a Nursing Home (yes, I have regrets, grrrr) and I travelled between the two, bringing one to the other most if not all days, so they wouldn't be spending the last of their lives apart.
It was darned hard, not to mention stressful. Didn't help that I have a couple of nasty minded siblings who went out of their way to make things more difficult, unpleasant for me. But that aside ...... I was lucky. My Dad was always very grateful, kind, understanding and it made doing things for him a pleasure, even if the hours in a day never felt long enough to get everything done. I found myself switching between "daughter" mode and "carer" mode often. So whilst a carer for Dad and for that matter, Mum, the daughter/parent relationship was always there and would quickly return as appropriate. My Mum had dementia and I was heavily in "advocacy mode" for her. But there would be those little moments when I faltered, Mum would always recognise it despite dementia, and up would pop "Mum" for me. I don't know how she managed it, even in the very advanced end stage of her dementia. But she did. Bless her.
None or perhaps just only a bit of this might help you. I don't know. But I wonder, with your Dad, perhaps he feels disempowered due to his incapacitation. Maybe empowering him wherever and in whatever small ways you can? Asking him his opinion? Explaining choices (on anything) and what he wants, what he would do? Providing him with jobs to do (even ones that you might not really need to have done or care about yourself) would provide him with the self-esteem he may have lost and which might be the route of the cause for his negativity ???
Good luck, and good on you for loving your Dad and helping him. It's not easy but I can tell you from this end that it is something I have done that I will never ever regret a minute of nor wish I'd changed, even at the hardest of times.