I have been caring for my very elderly father for many years now, in my husband and I’s home. Our children are adults living elsewhere. Dad is very independent minded and really has sought to give us privacy and “space” and not be intrusive. That being said, Dad has significant mobility issues, macular degeneration to the extent that his eyesight is greatly diminished, cannot hear well even with hearing aids, and has multiple chronic complicated health issues including now, quite possibly cancer for the third time (but as far as the specialists can tell, should not proceed to be an issue for him during his life time, as he is of advanced age). Caring for him is very complicated (A list of meds a page long that I distribute from very early morning to late night, PRN meds, a list of specialists two pages long, dietary restrictions that are not well received, etc. BP taken twice a day, weight and O2 once a day, liquids have to be just so much a day, but have to be adequate so as not to get dehydrated. Exercise and just always watching for fall hazards (are his shoes on tight enough, did he drop something, etc). He complains to others none stop about how boring life is, no matter what I try to do with him, same about food. He has complicated bathroom issues that often mean cleaning up urine or excrement (and not always just in bathroom). Because he cannot see well, or smell, he often doesn’t know what has been “left behind”, and he often “forgets” to wash his hands. Now he has a recurrence of cdiff from so many antibiotics—and he will continue to need antibiotics for a chronic condition. He is currently in hospital for this, after trying to treat it at home for over a week.
All this is putting a strain on my other family relationships, especially with my husband. Trying to maintain friendships is just through phone calls, as it is hard to get out. I have a significant health issue that means lifting and bending the way I have been doing could result in injury. I am told that with the cdiff, getting help to come into the house will not be possible.
I absolutely cannot imagine telling Dad that now is the time he will need to go to a nursing home. He is very cognitively strong still—it’s his body and bodily functions that are giving out. We have talked in the past that there may come a time when I cannot safely see to his needs—but I imagined it to be if he became completely blind, or none ambulatory. But this antibiotic/cdiff cycle seems to have no end in sight and the constant disinfecting and cleaning and providing meds even in the middle of the night as is sometimes required, is not sustainable, I am no longer young myself.
How can I have this conversation with him, when he is sick already in hospital? Or do I insist he be taken to skilled nursing to recuperate, and then talk about it being permanent?
Please, if you comment you don't have to remind me how contagious and scary cdiff is—I know and am already fairly freaked out…my cleaning and protocols are OCD level at this point.
Thank you for any helpful comments or suggestions on how to handle this….
I had c diff when I was in my 30s and I honestly thought I was going to die. In fact, I would have preferred death to what the c diff did to me.
You don’t need to discuss it with him or get his approval. The skilled nursing to a nursing home is simply how it’s going to go for him.
There’s no way that he should return home- for this and many other reasons.
That time has come. It does not matter that if doesn’t look exactly how you imagined.
I Agree with skilled nursing after hospital and then make it permanent. I agree with no need to discuss it beforehand and definitely do not seek his permission.
It is sad that he has all these issues but still a sound mind. (Though it would also be sad if he had dementia on top of the rest.) But none of it is your fault in any way, shape, or form. You have already gone above and beyond for him in my book.
You should redirect your time, love, and attention to yourself and your husband and leave the medical and personal care of your dad to professionals. Visit with your dad, be a loving daughter. But leave the meds, the bathroom duty, the food and water and blood pressure monitoring, and all the rest to professionals.
Don't take it personally that he complains about life and his meals being boring at your house. He’ll be able to complain about the facility in the future! I don’t see how anyone would be happy in his situation but again— not your fault! Nothing you can do about it.
I am 83. While to don't mention your father's age, I am ready to go, and my father in fact told me he longed to go, and very much wanted his "last long nap". He was satisfied with life but exhausted with it.
I think you must find within yourself some acceptance that this is no long sustainable for your own health and for the health and welfare of your family, and that simply is what you must tell your father.
Will he likely soon fail in a nursing home? Yes. He likely will. But is this life, with which he has no quality even to EAT what he wishes, so very valuable to him or to anyone else at this point? Is living one day more always the goal no matter the cost of it to EVERYTONE involved.
It is time for honesty. It is time to accept that none of this can be fixed. It is time to accept that this isn't about happiness. Not for him. Not for anyone else. The way you tell him is with:
1. Compassion
2. Gentle honesty
3. Grief
4. mourning
You know the right thing to do. You are trying to find a way to do it without tear and mourning. Is this not worth crying about? Is this not worth mourning.
And do discuss with your father whether he wishes to continue with all of these medication. C-Diff is quite literally a killer and as an RN I saw it kill many who ran into it because of a need for antibiotics or chemo therpeutic medication.
The truth is hard. But lies are dangerous as well, and can quite literally kill. Denial may destroy your marriage, your happiness, even your life.
I vote for telling him the truth now .
Don’t send him to rehab thinking he has a chance to go home , that could backfire on you if he improves a little temporarily .
He will not improve enough for you to continue caregiving at home.
It’s time for permanent placement . In general he’s on the decline that will continue.
And guess what? "He complains to others none stop about how boring life is, no matter what I try to do with him, same about food." So coming back to your home won't make him happy, even if it maims or kills you, literally.
So yes, his hospitalization is the right time to move him on to the next phase. You can work on regaining your health, both physical and mental, and he will either find his new setting interesting or have a new audience for his nonstop complaining. (Btw, don't take his complaining personally -- for some people it's a hobby, especially when they get older. But is it hard to brush if off when it's happening in your home daily.)
You've been superwoman for a long time. Take great pride in that. But it's not sustainable. Turn your father's VERY demanding care over to the round the clock trained professionals that are necessary for his level. As others here often say, visit him as a loving daughter rather than an exhausted and overextended caregiver.
I talk to a therapist about once a month. She said the same thing today that you said, this may be a chance to be a daughter again, rather than a nurse/caretaker.
i think they plan to release him tomorrow, so he might not make the three days required to go to skilled nursing. Additionally, they have been giving him a med that is very expensive and if it is as it was when he had this at the beginning of the year, no skilled nursing will continue it because of cost—so that may be an issue too….
Not to mention - Even if you felt you could continue like this, it is an unfair burden for your family (or your husband)! They need you too! And it is an unsafe environment for this patient to be cared for in your home!
The time has come when you can no longer safely see to his needs.
Keep in mind for someone with C diff, lots of meds, special diets, etc that it will take a while for placement. So keep up the mantra with the hospital that he is not safe. It might also be time to ask for a hospice consult ant the need to so many specialists
((hugs))
Best of luck to your family!
🙏❤️🍀
“How will you feel if he dies within days of moving him to a facility? I know of 4 people that died within days or 2 weeks of the move….”
Cruel, callous comment.
Talk to your father's doctors and ask them what they think about him being placed. Ask them to send a visiting nurse out to assess him and they can document what level of care he needs. This way you can look for the right facility for his needs.
When it's time to have this talk with your father, this should be done with your husband too. Tell him the truth that everyone knew there would come a time when his needs became too much for you to handle and that he would have to go into care. Not is that time.
My husband and I decided to bring dad home at this time. He was not hospitalized for the full three days. AND, he came back negative for cdiff, and he was stabilized. He has very low immunities at this time. Assisted living or nursing home care may need to be a reality sometime in the future, especially if care needs with regard to ADLs increase. We all know that. (Dad too). But we agreed that for now, and especially given the time of year we are in, this is the best decision. Thank you all for your support and good advice. It means a lot and will lift me up if that decision is what needs to happen in the future.