There is nothing wrong with the nursing home other than “it is a nursing home” but he is my sweet sweet dad who has never had a bad thing to say about anyone in his life and it’s hard to see him having to live there when he doesn’t want to be there. He doesn’t really complain much but I see it in his eyes and his half hearted smiles and I see his health has deteriorated since he was put in the nursing home. His spirit is gone.. I would be quitting my job. I wanted some support but honestly reading over most of the posts it seems like there is not much support. I see a lot of strong opinions about all the difficult horrible times people have had with their loved one. Even the law seems to be against me keeping him home for the fear of having to put him back in the nursing home and Medicaid is telling me I have to document my every move and have a receipt for the McDonald’s I bought him on January 2nd 2009. It makes me cry. I realize what I am walking into and I know it’s gonna be hard and I won’t be able to handle it but there is that little voice in my head that says he is 87 and he is my daddy and maybe I won’t be able to handle it but maybe he doesn’t have much time left and maybe I will be able to handle it. Don’t get me wrong I do appreciate all of the advice you guys give but while talking about the bad times it would be nice to hear about the good times. Were there not any rewards? Were there any good times you had being a caregiver?
I read everything everyone responded and I want to say thank you for sharing your stories and for getting me through that incredibly dark moment. I pray that one day I will be able to do the same for someone else. Thank you again!
I would say ask the NH if you could spend the weekend there as a 'care trial' to see how much care he needs. Stay all day for 2 full days.
If he needs night-time care too, sometimes a 'care trial' can include an overnight stay. I have not seen this done in NHs but seen it in rehab settings, but the principal is the same. Live it. Your heart wants Dad home. Let your head get the facts first before deciding.
Next comes getting all the same equipment set up at home. Ensure you have been trained to use everything he may need ie wheelchair, commode.
Next, bring Dad home for a weekend stay with you.
You may find that this brightens both of you. That this change of scene for him & being close to family lifts his spirits. You may find this makes you feel you are really looking after him. Double win ❤️❤️
Maybe this level will be enough? It is for some people. Then Mon-Fri, Dad goes back to the NH & feels good he is not too big a burden on you. And you get to work, earn, socialise, sleep.
Finding the balance is key. If working full-time is too much, dropping to 4 days or 3 may reduce your work (& wages) but give extra time for Dad.
It doesn't always have to be 100% NH or 100% home. A blend can work too.
My mother was 78, dying of cancer. She came out of hospital after an operation that I think should never have been done, and I moved into her unit, slept on a trundle bed close to her bedroom door. Her GP was great, and I managed all her needs. The breast cancer had metastasised in her abdomen, and in the last week she had uncontrollable bloody diarrhoea. She slept in short 4-hour shifts, then we worked together to change her and do whatever else needed to be done. I got very little sleep. I couldn’t work, and I lived off what I had in the bank.
It worked because the time post hospital was only 4 weeks. She had no dementia, stayed the person I loved, and was so grateful that I was there and she was out of hospital. I needed the gratitude to help me cope. I couldn’t have done it for much longer. I was so tired, and so stressed.
Of course she was much more ill than your father is at the moment, but towards the end he will also be suffering physically and his mental state may be harder to handle. Perhaps this post has been unnecessarily graphic, but that’s the way it is for many people at the end.
My suggestion would be that you do your best to find things that will give him pleasure now, and let you both have some good times together. Don’t decide to take him home and try to do 24 hour care, unless you know that it will be for a very very short time.
My mom moved into my home after she retired at age 65. She passed away on 2020 when she was 86.
The last 2 1/2 years of her life, she needed more and more care, which I provided.
While today, I am glad I provided her care at home, when I was actually doing it, I had many moments when I was angry, frustrated and scared to be providing care.
My situation is different from many posters that are here. First and foremost, my mom had CHF. She did not suffer from any sort of dementia, which meant she was always "her" - her personality stayed level until she passed.
I also have a 2 family home. She had her own apartment, so she wasn't constantly in my family's space.
I was also semi-retired; and it wasn't a financial hardship for me to not work once she got so ill she could no longer be left alone.
My mom wasn't a "difficult" patient, so to speak; my biggest complaint was she was somewhat passive-aggressive when it came to her own health, which drove me crazy many times, mostly because I was afraid of being accused of "elder neglect" when she ended up in the hospital due to her illness and her at times seeming disinterest in maintaining her own health.
She was able to do a lot of the ADL's on her own: she could transfer herself, toilet herself (right up until she began to transition while in hospice), feed herself. She needed help with bathing and dressing. But again, that wasn't until a few months before she passed. Mostly the help she needed was with shopping, being driven to appointments, medication management, laundry, housecleaning, etc.
It wasn't really a difficult decision to make to keep her at home. And that said, there were times I resented the hell out of having to give up my life to be here, in case she needed me. For example, I had to make arrangements with one of my sisters to stay with her so I could attend my son's college graduation. I had to go through all sorts of machinations to arrange for respite care for her when my husband and I went on a cruise to celebrate our 25th wedding anniversary. And my mom was willing and happy to go into respite so we could cruise. She was not generally a difficult patient.
If you want to bring dad back home to live with you, just make sure you go into it with your eyes wide open. Please do not over-romanticize it. Being the caregiver for an elderly parent is nothing like raising children, although there are similar aspects. Have a plan. Then have a back-up plan for the first plan, and a back-up plan for the back-up plan. Understand that this will take over *every single aspect* of your life, whether or not you want to believe it. An example: about 2 weeks before my mom passed, when she had gotten to the point where she couldn't be left alone because she was a huge fall risk, my husband had a kidney stone attack. He had to go to the ER on his own, because I couldn't leave my mother alone. It was the only decision we could make, but I broke my heart - because I support my husband and he supports me, and to not be there with him in the ER, advocating for him, was awful.
And if this is going to leave you in a financial bind, because you need to stop work, please think very carefully before you do this. It's not easy to jump back into the workforce once you've been out of the career game due to caregiving, be it raising children or caretaking elderly. If you have already taken all of this into consideration, and feel these are sacrifices you can live with, then do what your heart tells you.
Best wishes. And know your dad is lucky to have you, regardless of your decision.
Here is her profile page: https://www.agingcare.com/members/cetude
You can click on her Answers to read some of her posts.
Another poster named EarlyBird also cared for her elderly mother in home and did a spectacular job of it until she passed recently. They got along very well, too, and I know she enjoyed her mother tremendously. That's not to say she didn't work VERY hard to keep her mom happy & well cared for, she DID, she also enjoyed doing it, is my point. Here is her profile page:
https://www.agingcare.com/members/earlybird
The big issue is finances; you have to have the ability to quit your job and still be able to pay your bills and not be left destitute after your dad passes, which we DO see here quite a bit. I just read a post here today where that is what happened to the gal caring for her loved one. She's now out of a house, money, and frantic, not knowing what to do or where to go. So you can't leave yourself in that kind of a position either.
It may be a good idea to speak to a certified elder care attorney for guidance before you make a decision. It's always a good idea to get legal advice before making such a big change in your life and taking on an elder with lots of needs, I assume, since he's now in a SNF. Know what you're facing.
In home care does work for lots of people, so I hope it does for you as well, should you decide to go that route.
All the best of luck
Medicaid will pay for some homecare services, but you will likely also have to hire additional private-pay caregivers. A couple days a week at the senior center or adult day care will be necessary for both of you. Dad will benefit from getting socialization and you will benefit from getting some respite.
Sure, there are good experiences with caregiving. I've had lots of good times with elderly clients. Not all of them were invalid or completely out of it from dementia.
I was a companion to one old-timer with bad eyesight because he couldn't drive anymore. Every Tuesday and Friday afternoon I took him to the VFW to drink beers with his WWII buddies. Those guys were great and so were their stories. I had another client who was an elderly woman who really didn't need any care. She lived alone and wanted someone in the house on the days she took her showers and someone to take her out a couple times a week. We went out to lunch twice a week (which she paid for) and then mall-walking with her girlfriends who were cool. I got paid to do this!
There are positive experiences with caregiving. You need to understand that your whole life will be changed if you move your father in and become his caregiver. Things people take for granted like running a simple errand will have to be planned in advance if your father has dementia and can't be left alone. You will have to either take him with you or arrange for someone to come.
You will have to plan for things such as your father developing mobility issues or incontinence. Is your house handicapped modified in the event that your father becomes wheelchair bound? What about hygiene maintenance? Would your bathroom be safe and accessible for him?
If you quit your job, how will you support yourself? What happens if your father lives another ten years? It's possible. Who takes over your father's care if something happens to you (God forbid) or there's an emergency of some kind and you can't do it?
I'm not trying to dissuade you from becoming your father's caregiver in your home if it's what you really want to do. But please, think long and hard about these things before you make a decision to take him out of the NH.
I'm on my second caregiving stint. My husband was diagnosed with dementia in May of last year. I'm watching how he is declining. As well as how much I can do for him, by myself, then when to get in home help, and when that will not be enough, time for either assisted living or memory care. I know he's trying so hard to not be a burden, but....that can last only so long and he will have to have professional care. I think you posted that an average of 35 people a week take care of a patient in assisted living. I hope more folks will realize that being a health care hero takes a large group of people to get the job done, and a single person such as myself, can not begin to have the depth, range, expertise, training, skills, ability to stay awake for 9 days straight and remain sane and lucid, can change stinky Depends, make the perfectly balanced meals, run errands, consult with another Doc on med changes because the patient now thinks they're talking to dearly departed family members or Elvis, their hallucinations are better than real life or the Tee Vee, as well as just being....a dementia patient.
I can not "do it all". I can not, will not "multi-task" myself into an early grave, because the current society thinks unpaid family caregivers are able to be their own, self sustaining health care system. Yet, society does not care if we die on the job......nope, not gonna happen here. I'm smart enough to know I'm too dumb to take my husband's care giving to the next level, and that's ok.
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