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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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Based on my own experience as a caregiver- I am not a professional mental health provider:

Sounds like burnout, probably combined with being realistic and sad.

It is sad (and sometimes depressing), when we begin to accept our parents' mortality. As a caregiver, we often feel like our help and care will determine the longevity of our parents' lives. We can only do as much as we can. Exerting too much emotional or physical energy detracts from our own lives and doesn't benefit anyone in the long run. It's a very difficult balance. It's ok to assess how you want to proceed and guilt is not a requirement! 😉

If you are burned out, it may be someone else's turn to be the "cheerleader" for a comeback. It's a blessing to have a support network, let someone else take the reigns on this recovery and process your feelings. It's a luxury that you owe yourself!

You are probably experiencing emotions that are new and difficult to process regarding your parents aging. It sounds like you have a good support network, talk to them about how you feel or just take care of yourself emotionally and allow others to help more.

If you feel like you are experiencing symptoms of depression- talk to your physician! Maybe you could benefit from counseling to sort out your emotions or an antidepressant...

Caregiving is very emotional, I'm still trying to gauge my own caregiving capabilities. I tend to go overboard and retreat, but I am the only caregiver for two parents, no network, no support. Everyone's situation is different, if others are stepping in to rally- it's not only ok, but probably a good thing to take a respite. It's not a vacation. It's a necessary part of caregiving. My respite did not come by choice. Still dealing with the repercussions... 😕🙏🏻❤️
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While I agree with most of what the majority here are saying I do have a slightly different perspective. It sounds like much of your family has been involved to some degree, at least in particular during times of major medical crisis, with your mom and dads care. While they probably haven't had as much day to day involvement after the "crisis" when your parents settle back into life as you & your husband have been simply by virtue of the fact that you live next door, that says to me there are other family members who care, want to be involved & are just as attached emotionally. Your parents are very lucky to be loved so much. But we all have to come to the realization and then acceptance when people we love are nearing the end or are never going to be able to care for themselves again and we all have a different time frame and triggers for this realization. In many ways the closer you are to someone emotionally the harder this is but the more care-giving you do over a period of time the more intimately familiar you are with the facts. You can't force another persons enlightenment, if you will and you shouldn't expend your energy trying. You and your husband do the care-giving you do out of love, you get a personal benefit from what you do (which is not to say it isn't a hardship but not everything we get something positive from is always pleasant and easy) my guess is you wouldn't not do it or trade the times you have had for anything even if you might do it differently in hindsight. But you also can't fight or change your realization, your feelings for the other family members who aren't there yet any more than they can for you. What you can do is not be forced into something that doesn't feel right to you, you can express your feelings and position and if the others are smart and realistic they will recognize your unique understanding and follow your lead. If they choose not to make sure it's clear they are also choosing to take on more of the responsibility. You will of course help and do what you do but you can't take on more at this point and if you feel very clear on the fact that both getting and having him home again will require much more time and work then is already being put in and (at least as I'm sensing from you) you feel it isn't what will provide the best care for both your mom and dad at this point either then you need to stick to that but you don't need to fight others for it.

That said, it sounds like perhaps your dad has reached the point where he might qualify for Hospice care which could be at a facility or at home depending on what everyone (including Hospice personnel) decide. That might help you on several levels including being the nudge that helps at least some others come to the realization you have about your dads condition. It's hard to watch your loved ones suffer through the process of coming to terms with this just as it is watching your parents live it, just the emotional toll is exhausting so be good to yourself and to the loved ones around you by sticking to your instinct for yourself, don't do more than it tells you too and let them do the same knowing you aren't standing in the way of anyone else's needs or making decisions for them. No guilt, You can accept what you know and not try to fight it or help everyone else get their hopes up without fighting their need to rally and expend all of that physical and emotional energy it takes, working/living side by side with your mom and family members who have and haven't come to terms with it all yet. Hopefully one or more (probably not Mom) will come to the same realization soon so you don't feel so alone but give everyone the opportunity to do it in there own time. Not being in the same place about your fathers condition doesn't mean you can't still work together and be the same voice in his care. It only changes your perspective and input not your love or desire to what you can to care for him (and your mom). You go with what you believe is best and do what you can to accomplish that don't give time and effort you can't feel good about or get some return from, allow others to do that if they choose just don't let yourself get roped into it and let the rest go. The power to do the things we can and let go of the things we can't control...something like that. But don't second guess yourself, give yourself some love a caring too, loosing the parents you love is tough and that's what's you are dealing with just not as clear cut and simple as having them pass suddenly. Sometimes I wonder if passing from the heart problems or stroke is more humane than surviving them and then loosing them and for them loosing themselves, little by little.
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I can sure relate to how you are feeling in this situation. I recently had to have my husband of 57 yrs. admitted to a nursing home. He had fallen three or four times in a month, the last time hitting the back of his head hard on concrete. Thank God it did no damage and he has been on blood thinners for years. He has had type 2 diabetes for several years, two years ago was diagnosed with late onset Alzheimer's with vascular disease, and last month while in hospital, diagnosed with Parkinson's disease. I was his sole caregiver ,thinking I could care for him here at home, but with each fall, he was getting less and less able to walk and stand alone, even with a walker. I finally had to face the fact that if I was going to have any measure of health left, he needed to be in a facility where he could have 24 hour care. It was the VERY hardest thing that I have ever had to do, but very necessary because I finally realized I could not get by on 3 or less hours of sleep a night, and his constant needs or wants. Getting him ready to go to a doctor's appt., church or any place else was a major job, because even with rehab he had to have help dressing, bathing and toileting. Since he has 100% bladder incontinence, it requires changing several times a day. Do I like having him in the NH and begging me to bring him back home, NO, but our primary doctor told me if I had not done it, I would most likely be in the hospital due to my back problems, and shoulders would be shot from all the tugging and pulling and lifting him. I do visit him daily for a couple of hours and can enjoy them, knowing he is getting the care he needs by professionals and then I can come home and relax and sleep at night. I don't tell him ( at least not yet) that he won't be able to return home. When he asks when he can come home, I tell him that his doctor says he needs to get stronger and in better health and able to get around better with his walker. So we have to wait and see what the doctor says. He is in a wheel chair now because he is high risk for falls and still doesn't eat very much so is weak. I told the nurses to try and get him involved in their activities and to encourage him to eat in the dining room instead of his room. For the most part he just sits in his wheelchair and isn't interested in anything, but hopefully as he gets adjusted to the routines, that will change. My prayers go out to you and anyone else that is a caregiver to a loved one. It isn't a very pleasant job but you do it out of love.
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When my mother was dying of cancer, she and dad lived "one day at a time." That is probably where you are; you might even be able to explain to other family members that this is what you have: one day at a time. Facing the probability that your dad won't be coming home might be easier if you don't worry about predicting the future: which also comes one day at a time. (of course there are things that need to be taken care of looking ahead, see to them but leave as many options open as you can.)
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I am going through much the same thing. I have taken care of mom for over 10 years. She fell and broke tail bone or pelvis. I was very upset for a week and then the calm set in. She is 98 and I can see the inevitable. Visit her all the time, she doesn't know me. Gods will be done.
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Dear Im1984,

To answer your question. It sounds like you are experiencing both: burnout and acceptance. You are likely experiencing multiple feelings and emotions, hence the "rollercoaster." {We are with you.} Our society here in America is unprepared in handling care for our beloved seniors and parents, as well as our caregivers and ourselves. I wrote that last sentence purposefully to expose that we exist in dual and more likely multiple roles of consciousness. We care for ourselves and one another. It is overwhelming at times, and our bodies sometimes have natural "stops" that create our boundaries for us.

There is a great need for further research in the area of "Aging" and "Caregiving" from multiples aspects: physical - emotional and spiritual - Health-care. (mind, soul and body.) Our culture will develop a "Grief Culture" that will, like every industry, evolve. Meanwhile, we are the trailblazers.

Be gentle with yourself. Be loving, kind, patient.
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Dear One,
It sounds to me like you are in the beginning stages of grieving and acceptance of your parents end of life. Your heart, body and mind are telling you this. You seem very sad. Go with it. Seek grief support now so that when your parents die, you are able to cope better after the beautiful, intense closeness over the many years of caring for them. Grief support is not just for after a loved one dies. Having been their primary caregiver for so long, it is a shock to realize that you recognize this and now have to begin to let go. I suggest that you step back a bit, choose what you can and want to do and let others pick up the slack, if they are willing/able, so you can grieve and continue to be there for them and yourself. Now may be the time to talk to them more instead of doing more. Tell them how much you love and appreciate them, let your heart guide you. Much love.
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I also agree with SueC1957 and many others. It sounds as though during the many years you and your husband were actively supporting your parents, you were in Acceptance. Now it sounds like Burn Out - due to emotional and, probably, physical fatigue. The doctor is the best (third-party) person to advise the family on what's best for your father; no doubt, the doctor will advocate for keeping your father where he is. I would talk to the doctor ahead of the conversation with the family so s/he is aware of how you and your husband feel. Since you have been the primary caregivers, the doctor will try to support you, as well as your father.

In order for you to truly relax, you need someone to take care of your mother (if there already isn't one).

And, finally -- the most important -- put your emotional and physical health first now. Balance your loving care for your parents with love for yourself and your husband. You deserve a healthy life and you also will be better able to give to others.

I am hoping you will feel better in the coming weeks. Know that there are many of us out there who are challenged with similar issues.
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You are being realistic about your dad. He’ll take so much care, his stroke was very bad...that’s the end of life as their health gets worse and worse. Well done to you and hubby! It’s time for dad to get the extra help he needs from trained personnel.
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Keeping you in my prayers, Im1984 - you are accepting reality. I get no help from my sibs, but at least they're not delusional. They think I "overcare" Mom, so I am trying to nondefensively look at my caring. Tough to do with sibs giving advice, as part of what influences them is the fact that they don't want to have to take over care once I have to go back to the university at which I teach in the middle of Aug (11 hours away). They seem to think that if she gets used to being cared for as I care for her it puts more pressure on them. They have each been here for only 2 hours during the almost 6 weeks I have been here; I am the only one who is not local. I admire all that you have given to your LOs and, again, believe that you are being realistic (even if reality is depressing.....).
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It sounds to me that you are more accepting of the facts that the rest of the family are willing to admit to - it is a fine balance between dashing hopes in others & accepting reality -

Bottom line does your dad want to do the rehab & work for a recovery or is he either unable or not wanting to do the effort needed because if he is not willing to do 100% then it is a waste of time - at some point many say 'enough is enough' so ask him - if he can't talk much a thumb up or down would should be your answer - IF HE CAN'T TO THAT THEN HE WON'T BE ABLE TO FOLLOW REHAB & basically it would be counter- productive to force him into it
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It is all exhausting after a great deal of time dealing with declining health. In my situation I tried for decades to have my mother be more healthy. She resisted and now at 88 she is slowly falling apart and I am emotionally exhausted dealing with all the fallout. At times I worry she will outlive me although I lead a healthy life but I have so much stress. I am amazed at the courage I see expressed here and wish I could tap into it someway.
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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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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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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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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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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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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 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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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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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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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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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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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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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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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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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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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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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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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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