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?
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.
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.
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.
((((hugs))))
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.
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.
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.
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.
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.
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.
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.
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.
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.
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
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.
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.
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.