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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.
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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.
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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.
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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.
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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.
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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?
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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 is....an 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.
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Seconding SueC1957.

((((hugs))))
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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}}}
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My prayers are with you! I had a similar situation up till 2 years when mom passed! Now I am caregiver for my husband who has 2 types of dementia! I think as caregivers we do get burned out, but also depression plays a part! If you can get a away for a couple hours or a day by yourself or with your husband do it! It can get overwhelming! But ask yourself: if I don’t take care of myself, or if I get sick, who will take care of my parents!!
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Since "we" who give care to others are not God, I know how difficult this place can be. I am approaching the same thing - once again - with my old boyfriend and current partner. He looks like my Father he has aged so much in a year. I am reminded of my Dad's passing so early, and the most beautiful part of that great sadness was my presence at his side. Same with my Mother, who died at our waterfront rental at the time. I am sinking also - be grateful for the life you have built. Tell him how much you love him in private and "thank him". I did those things and although some might think they were dramatic...I do not regret it today.
Respite after...if there is one. I cannot afford one as of today. I pray for you, what a wonderful daughter and only those 'closest' can feel as they leave us here. You shall see him one day again. Have faith. God Bless you for sharing. Caregiving.org is the national alliance and caregiver.com is my local chapter. Reach out and may God be with you.
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Are you experiencing depression or acceptance... There's a question.

I don't know, but what you are definitely experiencing is a horrible time. However natural the process may be, awful things are happening to people you love and have cherished all your life, and you have reached the point where there is very little you can do to influence events. Aren't you allowed to feel wretched about it? Aren't you supposed to, even?

Whatever comforts you and your loved ones is fine. Perhaps this is a time to stop trying to understand the detail and instead just let yourself react naturally to what is going on around you. Coming to terms can wait until the storm has passed.
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Sue 57 said it all. This will sound cold, but I hope you have a DNR and Hospice. Hospice can explain things to your delusional family members. My husband reminds me that their opinion is proportional to the amount of help they provide. If you guys were not there, someone somewhere will step in. Please don't kill yourself caregiving or feel guilt when you come to realize the truth of the prognosis and turn care over. In my case, I can't get excited because mom is eating so well. She is basically a shell, not mom at all. It is so sad. Not the life any of us would want at 94
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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 beyond...so book a cruise or whatever and get some time away together.
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Feeling bad when bad things happen is not the same as clinical depression. It sounds like you are experiencing normal emotional responses. If you feel that your sadness is getting in the way of daily functioning, consider a few sessions with a therapist, for support.

Acceptance is generally positive in the long run. What will happen will happen whether you accept it or not, but most people cope better (I think) with a realistic idea of what to expect.

You may gain some insights from reading the book, "Being Mortal: Medicine and What Matter in the End," by Atul Gawande.
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100% agree with what SueC1957 said, for some reason family members won't listen to other family members but will listen to a Dr, I would see his dr & explain situation then make another appointment to bring in your family members. You absolutely need a break away and using husband's aunt excuse instead of saying holiday would actually help you. Do not feel guilty for needing some time to decompress, our parents had us so we could have a life, if they were younger and in the same situation they would agree. You are burnt out & you are doing a awesome job. I recently went through major depression & burnout caring for my mum. I'm now in acceptance that she really just wants quality time & most of all for me to be happy. See the dr, make family look after Ur mum (don't give them more than 2 days notice that you are going to..... to look after husbands aunt or you will get every excuse so they don't have to take on your role (all be it short amount of time) give them a window to see what life is like in your shoes. & Most of all enjoy your break away....you do deserve it. Hugs
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You have been close to the situation for a long time.
You have seen the decline for a long time.
The fall was one domino falling the stroke was more falling.
Once one domino starts to fall they rarely stop, if it stops it is not for long.

I think seeing the situation for what is is difficult and realistic. Not many people want to be realistic when it comes to accepting the decline of a loved one.
Even if your Dad were to improve a bit there is no way he would be able to care for your Mom again, and she can not care for him. And you have your hands full caring for your Mom. (Caring for one person that needs a lot of care is difficult, caring for 2 that are totally dependent on you would be almost impossible.)

If you can get respite, someone to care for your Mom for a while, 1 week would be great but a long weekend is a start, you and your Husband need a break. Come back refreshed, at least a bit, and it might be time to make some decisions.
Does your Mom qualify for Hospice? She probably does. That would get you a bit of help a few days a week and you would have all sorts of resources. There are volunteers that could come in and sit with your Mom to keep her company while you relax, run errands, tend to your family.
Does your Dad qualify for Hospice? I would imagine he does, that would get another set of eyes in the facility where he is and some personalized help a few days a week.

You have done a great job, so has your husband.
Your parents have been very lucky..and you have been very lucky to have had parents that raised a daughter that has the ability, compassion to do what you have done.
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This will probably not help but after my own dads massive stroke when he was in his early 80s my mom and i would visit him at the nh for dinner and tho he couldnt talk or really move he would point at his ice cream. Playing parent I would tell him he had to eat his green beans or whatever before his ice cream.

He wasnt going to get better but i kept thinking that his green beans would save him.

NOW i realize i would let him eat all the ice cream he wanted and what wilould it matter ??? ... HEd be happy and thats what counted.

What im saying is try to relax and just do what you can ... it shouldnt be much now.
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At some point we all must accept the inevitable.
I pushed my DH for 3 years but last month I accepted that he could no longer be pushed as his time had come for him to leave me.
I did, however, keep him ambulatory until his last 3 days on earth and he never wore an adult diaper until he became bedridden 3 days before he passed.
Eventually, the time comes that we must accept the body just gives out.
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I think you are experiencing grief. Watching the slow decline is so very difficult:
Living in grief moment by moment anticipating more grief. No matter what we
call it, the requesting help, taking a break to refocus and rest, and letting others carry the load that is too heavy, are all beneficial.
Jesus said "My yoke is easy, my burden is light" so when my burden is too heavy,
I am trying to carry one that is not from Him and I need to let someone else help. There are angels waiting to help us. We sometimes do not see them, and
that is what this forum is doing for us- showing us that help.
I thank God for you all.
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My experience has been that a caregiver can experience depression and acceptance at the same time. I have experienced both. You can deal with it by taking some time for yourself to do things you enjoy. This is easier said than done. It's been four years since my husband died, but I still feel the physical and emotional effects of the stress on my mind and body. I am 87 years old and thankful that at 79, I was able to become my husband's caregiver with the help of a visiting hospice team. Before that, as my parents' only child, I had to take over when my mother was diagnosed with Alzheimer's and my father died suddenly at the same time.
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The death of a loved one is imminent. God has our days numbered and we can only do our best and that is to be prepared as told to us in the Bible. SO, with that in mind I would like to tell you that I am going through the most difficult of times in my life with my wife who is and has been treated for Vascular Dementia and it is a slow slippery slope. It is depressing, time consuming, health threatening, very costly and with all of that I am a little younger then she and still have a father who is over 105 and my brother's health is not getting any better. So it appears that he will be my responsibility more and more as he nears his 106th birthday next March. I live in another state and my brother lives only hours away from our father and he is able to go see him when his kids are available to take him. SO, as to recovery, forget it. He will have some good days and then enjoy them. The bad days will also happen and make the best of them by going to the Bible and reading it. "Study to show yourself approved unto God a workman that needeth not to be ashamed rightly dividing the word of truth". My goal in this time is to be faithful! Faithful to God and to my wife no matter what happens. HE is faithful - keeps ALL of HIS promises.
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You are probably experiencing both. Like me, you are a doer. You try to be a problem solver and you've been at it for quite some time. I have been in your shoes, where I helped in all manner of ways (no sibs in area to lend a hand) and went through my dad's passing. When mom had a serious illness that looked like she might not make it, I felt just like you do now. Instead of fighting it, or trying to label it, I embraced both possibilities. To acknowledge that feeling of eminent loss, (this may sound morbid), I wrote mom's obituary. By doing so, I thought about her rich, varied and long life in a positive way. It also helped to know that it would be done for that difficult time after losing a her. Turned out she pulled through to live for another four months. I do recommend that you find someone (not family) to talk to about your feelings because if you worry about burnout, you don't want to question your actions (or inactions) at a later date. Last, take your cue from your dad. If he appears hopeful or seems to be trying to fight his way back, then support him in his efforts. Be there for him as his cheerleader. If it looks as if he can't and there is no progress, then change your role from manager to simply daughter and shower him with love. Play his favorite music. Reminisce. Bring sunshine to his day.
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You are not alone. there are a lot of us out here who have been there, done that and want to give you a shoulder to lean on. you are feeling a little bit of everything right now. I too, went thru both parents at the same time with health issues. your heart wants them to get better but your brain knows that their time is coming. Its ok to feel this way as you also have to work thru this ordeal in your own head to be able to be there for them both. Its the hardest thing I think anyone must go thru to be able to accept that their parents are declining.
my suggestion to you is to call in some help. you can get help thru medicare, your doctors office can help with information also as to where to go for the help. I chose to contact hospice. They are there for you one hundred percent of the way. they arrange everything needed and are there for support of your entire family. they pay for almost everything as they know its a hardship on the family. they have home visit doctors also. the first step would be to call a local hospice and speak to them. they will guide you from there. I wish you all the best.
Remember, its ok to hope for the best in your heart. But don't rule out the facts that hospice and your doctors give you. that's what you have to deal with.
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Good for you and hubs to have provided good and loving care all these years...I do not fault you in any way ...My hunch is that you are in burnout.

Rather than advice, I will say, at age 82, I still think of myself as "younger" even though my muscles are weaker, I get lightheaded quite often, I am more forgetful than before, yet I just sold off my powerful motorcycle last month. I am quite ambulatory but one day I won't be so much anymore. I pray for peace of mind and live for today..

It is not easy for your to bear up under all this, but if you stay cloe to the Lord, He will give you strength....

Again, you are not in any way not caring for your folks,

Grace + Peace,

Bob
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You have arrived at "reality" - some people never do. Two years before my sister passed away she decided life wasn't that great, so getting better wasn't worth it. She had major health issues for years, so I could understand why she just said "enough is enough."
One sister and I realized at that point that we were going to lose her - so for 2 years we cherished what was left of her and slowly as she slipped away with dementia it was a bit easier. Two of our other sisters kept thinking she was going to rally, and kept working toward that unattainable goal. It wasn't until the Hospice Aide finally said directly to them that our sister wasn't going to live even another month, that it hit them.
It is one year later, and they still haven't reached acceptance - for us, we had 2 years to say goodbye. It will still take time once your father has passed, but for you and your husband energy & enthusiasm can be put aside and comfort in knowing that your father's pain will not be much longer will help. You have time to enjoy where he is now, and not trying to get him someplace else - that effort looses all the time you have left.
Find a Hospice Care group, join them for comfort and to talk to people who are in the same place you are - accepting and waiting. If you can help [within limits] your family do so. DO NOT FEEL GUILTY if you can't. Caregiving is the only 24/7 365 job on the planet - no one can do it forever. Be comforted in knowing you were there to help, you have accepted the inevitable, and realize how hard it is going to be for your family because they have not. Everyone arrives at reality in their own time. Yours is now.
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You are being a realist and except the fact that this is the end of life for your Dad and Mom. You have gone above and beyond for your parents care. Family members can't except this and because you and your husband have been the primary caregivers, you can see the end in sight. Don't feel guilty for letting their health issues take their course. I applaud you both for all that you have done.
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I also agree with SueC1957, who is "spot-on" with everything.

When a person passes 80 with major health issues, they are not going to ever "be well" again. Accepting this helps us all "move on" with our lives.

Your father is in his "new normal." His wife may be entertaining a fantasy that if he just comes home, all will be well again. I've seen elderly spouses delude themselves like this, sometimes for years.
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It’s certainly understandable that you’re feeling the way you do and it’s completely normal. When everyone is well and you’re helping out, it’s a good feeling. But now that your father is in skilled nursing and your mother requires assistance, there are no more good feelings associated with the help you’re giving. My mother is in an AL facility that is connected to a SNF and several residents have spouses “next door.” They can go through a walkway anytime to visit or share meals with their husband or wife. If they can’t do it alone, an aide assists them. Couples have moved to this facility when one of them must reside in a SNF because of this convenience. Would you have more peace of mind if your parents could be together with this type of arrangement? There are facilities everywhere that have this convenience. It may be a very positive option.
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Again too many posts to read so sorry if I am repeating.

I think you are the level headed one. Dad is where he needs to be. One stroke can turn into others. If he comes home, you will need 24/7 care. Can the afford it? Can you. Are you willing to be on call all the time? See your family has never done the caregiving. They have no idea what you did or gave up for your parents. Like you, it was always me. That was OK at a point but 247 care is like having a baby again who never sleeps. I was lucky, my brothers agreed with my decisions. Ask the head nurse if she would be willing to sit down with family members and explain that Dad will never come home. That a damaged brain can no longer respond to directions needed to recuperate where he can go home. And be firm, tell family you have done enough. You are willing to continue care for Mom but even then...if she eventually needs 24/7 care then she will need to be placed in LTC.
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