My elderly parents are in their late 80s and live next door. They have had multiple health problems over the past few years. My mother has been through heart valve replacement surgery, is unable to drive, is on oxygen 24/7, and uses a walker. My father was her primary caregiver up until last year when he had a fall that resulted in a traumatic brain injury (TBI). After which, he was also unable to drive and showed signs of Dementia. Several weeks ago, my father had a significant stroke which left him wheelchair-bound and living in a skilled nursing facility. He is no longer able to communicate with us.

My husband and I have always been close with my parents and their go-to support for several years. We've stayed with them when they've been hospitalized, helped them find rehabilitation facilities after hospital stays, dealt with their Medicare and long term care insurance companies, helped them arrange for home healthcare providers, gone with them to doctor visits, and talked to more medical professionals than I care to count. We've shopped for them, cooked for them, done household chores and yard work for them, been their chauffeurs, been the ones they've called on when emergencies occur (one of them has fallen, their electricity has gone out, my Dad needs help finding something he's misplaced for the 100th time, etc.), and the list goes on. My husband and I were extremely involved in helping Mom and Dad after Dad's fall last year. We took several weeks off from work to stay with them 24/7 through Dad's hospital and rehab stays, and helped arrange in-home caregivers on his return home.

Since my Dad's stroke a few weeks ago, my Mom and family are trying to rally our support once again. They are hoping to get Dad "back on his feet and home", even though the neurologists gave him a grim prognosis. I've been on this rollercoaster for so long, that I'm not sure if I'm experiencing "burn-out" or if I've just come to accept that this is the end of Dad's life. Either way, I can not seem to muster the energy or enthusiasm to help any longer or hope for Dad's "recovery." Does anyone on this forum have any words of wisdom about how I can deal with this?

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you sound like an intelligent caring daughter. It may be burn out, but at the same time it is seems more wise thinking that it wont get better. as long as he is able to stay where he is, I don't think it would be best for him(or you) to return home? and the doctor gave grim prognosis. I can understand your mother wanting him back. but for your family to be pushing it? are they going to be doing the work? since your moms not able to. I don't think its a matter of you giving up. people age, people get sick. you are just facing reality.
Helpful Answer (26)

Dear 1984,
You and your husband certainly have done more than your fair share. Just reading everything you've accomplished made me tired!

I'd call it burnout with seeing the situation for what it is thrown in.

Let's look at this realistically.
Your 80 something year old dad had a fall resulting in TBI which probably exacerbated the dementia. Now he had a stroke and is unable to walk or talk. His doctor says his prognosis is "grim". That means BAD. (I'm sorry.)

Your mom and family are in denial and being totally unrealistic. Getting him "back on his feet" isn't gonna happen. A large percentage of stroke victims never regain their mobility, sorry to say. He probably won't regain much speech either. (Strangely, stroke victims are sometimes able to say swear words.)

I would sit this one out. In fact, take a vacation or "visit your husbands' sick aunt a few states away" or rest your back from "a strain" for awhile. In other words, find a way to get out of bringing dad home. If nothing else, have his doctor meet with the family and explain his need to stay in the NH. They will accept it better from him.

You see the situation for what it impossibility. It may take time for the others to come to this conclusion. Do NOT succumb to guilt. Moving him back home will "break" you. You owe your husband a healthy wife, now and in years to come.

I know you love your dad but leave his care to the professionals. Get a schedule worked out with your siblings as to who will drive mom to visit dad on different days.

You feel this way for a reason. You have accepted the situation for what it is. You'll be a smart woman listening to your feelings.

Good luck.
Helpful Answer (21)

I don't have words of wisdom to share but I will say good for you for stepping up to the plate. I think when you come to the realization that trying to fight the inevitable is useless you then can start to wind down and begin the process of acceptance which could definitely lead to depression.

I know once I came to realize that my Mom was never going to get better I then sadly tried to just be with her in the moment. After all, when someone is in their late eighties, early nineties what would getting better look like? My Mom knew her time was coming and once I stopped fighting the process I actually just tried to enjoy her company cause I knew soon she would be gone.

It's a sad story for so many of us Im. Keep coming back here for support. But do take time for yourself. Stepping away for a breath of fresh air always helps change your perspective a bit.
Helpful Answer (19)

Maybe a little of both? Accepting that this is how your father's life will probably end can be depressing. I'm sure your Mom misses your Dad and wants him home, but she may be picturing him home "recovered" as he was before the last stroke. It took my mom a while to adjust to not sharing a home with my dad. I wouldn't try to convince the rest of the family your Dad will need nursing care for the remainder of his life. It may take a little longer but that will come to the realization eventually - maybe not until they start planning how they will care for him at home so make sure "they" plan to provide that care. Maybe the family could visit Mom a little more so she won't feel so lonely while missing her husband.
Helpful Answer (16)

Sounds as if you're past burnout, Im1984, and for good reason! If you back off now and let the others do what needs doing a lot more, your dad will probably stay where he is, and the others and your mom will learn to live with that. If you make heroic efforts to get him home; you may all very well be disappointed and heartbroken at the results... not to mention, there are lower levels of burn out you and your husband can sink to. Why don't you two do some R&R and get away from the situation for awhile, to enjoy some alone time and relax?
Helpful Answer (15)

Hi IM1984,
I feel for you. You and your husband are to be commended. You have done so much for your parents and gone over and above in the process. Do you have any siblings that could share the work? I also think I understand the way you are feeling at the moment as I have periods also when I am not sure if I am depressed or experiencing burn out. Both my parents in their late 80’s suffer from late stages dementia of different sorts. Although I am retired I don’t feel that I have experienced retirement yet. I don’t know what the answer is except to try and have breaks away or holidays if that is possible. If you have other members in your family you must try and be firm and say you have done your bit and someone else needs to do their bit otherwise you will be ill.
I hope that helps you. I can’t think of any other solution to the problem. Best of luck.
Helpful Answer (14)

I also agree with SueC1957. Since you've been so close to the situation, you are able to see it for what it is. The rest of your family can't see that yet. Step back and get some R&R as best you can and enjoy the time you have with your mom and dad. We're all going to be there someday...when our loved ones can't bounce back. Facing it with grace and love is the best thing you could do for your mom and dad. Model that realistic acceptance and love for the rest of your family. And come here to vent if you get resistance. We get it. {{{Hugs}}}
Helpful Answer (14)

Thank you wally003 and Els1eL. Having people understand what I'm going through is so helpful. It makes me realize that I'm not alone in my worry and sadness. I agree that stepping away for a while is a good and wise idea.
Helpful Answer (13)

Seconding SueC1957.

Helpful Answer (9)

I’m sorry things are turning out like this. I think you are being realistic and your family isn’t. Those of us in the trenches and close to the situation have a better understanding. If your sibs are out of town or not involved they are living with a "dream" not reality. I agree with the suggestion of getting his doctor to approve hospice. They can provide more care on top of what the NH provides.
I don’t know what the plan in place is regarding PT, OT, and ST....those might steadily improve him somewhat. But it sounds like he’s near the end. I agree with another that the family should call and speak to the doctor regarding the prognosis. Let your mom visit him and come to accept it. Right now people are in the denial stage and that’s normal and ok...give them time. You and your hubby have done everything above and book a cruise or whatever and get some time away together.
Helpful Answer (8)

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