I read a lot of these posts and from time to time get some good ideas / suggestions. However, sometimes when reading some of the questions / answers - I feel we are suppose to do everything possible to try to better the person's life with their disease. I'm finally trying to realize this is the course of life-decline-death. I'm beginning to understand we are doing some of the things for ourselves - not necessary for the best interest of the person with the disease.
My husband was originally diagnosed with Parkinson's disease in 2002 (from agent orange - Viet Nam). As the disease has progressed, the neurologists have given a diagnosis of Progressive Supra Nuclear Palsy. He was diagnosed with Mild Cognitive Impairment in 2014 and is scheduled to be retested later this year - as he has obviously declined. He also is clinically blind - as he can no longer open or keep his eyes open. He has been a trooper and never once has said 'why me'. He is not ready to give up on life and still wants to be as active as he can under his circumstances.
I keep him busy most days of the week. For example -- (there is minor variation depending on the day / classes offered throughout the year, etc.)
Monday - he goes to two Parkinson classes at the MAPC (music therapy and boxing)
Tuesday - I try to save Tuesdays for doctors appointments and/or hydrocycling (bike in the pool)
Wednesday - he goes to Ballet Arizona and does a Parkinson's Dance class / then Ability 360 - for a workout
Thursday - he has PT / OT and speech/swallowing therapy
Friday - for cognitive - he goes to the Musical Instrument Museum for a 1.5 hour class and tour rotating with the Phoenix Art Museum for a 1.5 hour class and tour and then comes home for extensive stretching
Saturday - Ability 360 - work out in gym or aerobics workout in the pool
Twice a month - massage (in the home)
Sunday - rest
and then we start all over again
Exercise has always been important to him and then when he was diagnosed with Parkinson's, it was important for him to continue - to help stay as strong as possible.
From time to time, I ask him if he wants to continue to go - or cut back - as it is getting harder and harder for him (and me) to do so. It's not me that is pushing him to go - it is him wanting to go - and not wanting to give up.
I feel his time away from home is good for him - or he would sit at home in front of the tv listening to it (since he can no longer see) or listen to his books on tape. I feel getting out in the car - some interaction with other people (even though it is minimal - as he doesn't talk much any more) is good for him.
However, we all know he (or any of our charges) is/are not getting better or even holding his/their own, but continuing to deteriorate.
When is enough - enough? When do we (as caregivers / carepartners) stop trying so hard and back off. We cannot fix any of this.
Finally, I reached a point of burnout, first mentally and then physically. After three days of thinking through the situation I made a change for myself.
Maybe be it would be good for you to think about what you need and want. This is not selfish, it’s self-preservation and healthy.
For the last year I have been caring for my 95 yo MIL and I take my cues from her. When she continued talking about wanting to die, I called hospice and they have guided me through how to proceed. No more doctors visits, she eats and drinks what she wants subsidized with Ensure, and medication to keep her comfortable to be used at my discression, less than 2 times per week.
Lastly, it is obvious you and your husband love each other very much, all of us caregivers and beneficiaries love each other. We must all meet a balance between our needs and their needs. Our loved ones would be devastated if their needs consumed and damaged us.
I experienced this situation with my late MIL who, like your husband, did not want to give up. For 5+ years I helped her to keep going. And I reached a point where I was so exhausted and drained that I got sick. It took me more than one year to recover my health. That experience opened my eyes. I hate to admit it but I would have backed off years sooner had I known.
If you are religious/spiritual, consider seeing an advisor or marriage counselor. Involve yourself in a support group for spouses. Start taking time each day for yourself. Perhaps cut activities down to every other day. Both of you may need more rest.
I asked him if he was hungry and he said no. I told him to let me know when he got hungry but he never did. I would fix him something and he couldn't eat more than one bite.
He was already 96-1/2 yrs old and his body was shutting down. I allowed him to pass in comfort; he was only bedridden 3 days and only needed adult briefs for the first 2 - then they had to catheterize him. He passed the next day.
I had managed to keep him ambulatory up until 3 days before he passed, and yes I had to hold him up to walk him to the bathroom, but I allowed him to keep his dignity and mobility by assisting him. I miss him terribly but when the end comes, it's kinder to let them go.
BTW, that day that he became bedridden, he was visited by his deceased first wife - I heard him talking to her. That's another telltale sign, when people that are already gone come back to talk to your LO - you know the end is near.
I don't have an answer, I just want to let you know that I love the love you are showing your hubby. Before my Mom got sick, I had to take care of my sick husband for a year before he died at the age of 43. I worked full time and came home and did activities with him. I was always tired at the end of the day, but I thank God for the chance to show my hubby that I was there for him through sickness and health. God Bless you.
Hospice will not approve a feeding tube...all I did was revoke it (only took seconds), Medicare paid for the hospitalization and tube placement, then reinstated her hospice. Hospice supplies me with a feeding pump, tube feeding, plenty of diapers, wipes, gloves and so on.
I wrote a blog about my experience and I have evidence-based articles to support my decision to have a feeding tube put in mom.
https://mymomfeedingtube.blogspot.com/2019/07/why-i-decided-to-get-feeding-tube-for.html
Thank you for sharing and letting us see a little bit into your life. Be sure to take care of yourself and hug your husband for all of us. A very big hug to you.
When is enough, enough?
I believe you might know, if you are asking this. & what a Great question! I am a 24/7 CAREGIVER
For a woman that has dementia & congestive heart failure. I never stop. Her children don't either but we've scaled back. We Pick n choose what's best for her when humanly possible. But no one goes overboard. EVER. Just love on her😍 a bunch. Maintain her dignity, keep her moving, feed her well, & keep her happy.
We know her time is coming.
But keep a healthy balance for All involved.
I always say, " don't leave regrets"
& if he declined because you said, Enough, would you feel guilty?
You sound like an amazing Duo.
& what a lucky man!
My opinion is, cut back a day occassionally, one of least resistance by him.
I think its time.
By the time you cut back all those classes, he won't or you won't be able to do them anymore. That's alot of classes! Goodness.
God bless
I cherish this last bit of time with him. I look at the photos of us in the park, visiting his old friends, at a birthday party and relish those moments. I could see in his face that he was sooo tired, but still engaged, face turned toward the sun.
I hope there are many moments like these for you both lived and to be lived. In the end the housework can wait or someone else can do this for you, the shopping or other duties can wait, use a delivery service it doesn't usually cost much more, but find some time to give you rest and rebuild your energy so you can enjoy these moments.
I have nothing helpful to offer at this moment but will do my best to revisit your post when able.
Again, I really admire you for all you’re doing for him. He is one lucky man.
I must say, his schedule does sound very fun!
There certainly is a lot going on, all the time. Would it ease your burden at all if you found resources to provide transportation to these activities? Or if doing these things for a group, resign and only do for your husband?
Do you feel underneath he wants to cut back? If so, perhaps you could tell him it’s becoming too much for you and you’d like a day to spontaneously do things together. That way he’s doing it for you, not because it’s too much. Best wishes.