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?
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... 😕🙏🏻❤️
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.
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.
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.
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.
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
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.
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.
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.
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
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.
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.
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.
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.
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.
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.
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.