How do you continue to care for a husband with advanced Parkinson's when you really don't care anymore?

it is NOT an honor nor a privilege to be forced to take care of a person who will never improve, who sucks the life, spirit, and soul out of our existance. Anyone who claims it is a privilege is delusional and MUST be on hallucinogenic drugs!!! This thankkess job is and always will a soul-destroying endeavor that, in the end, NOBODY wins! Privilege my ***!

I write from the patient perspective having been diagnosed with early onset ALZ just about 3 yrs ago. I was diagnosed just as we'd begun meeting with a lawyer to set up a plan for our retirement. This included making a Living Trust in the name of my DW, DPOA, Med Directives, Pour Over Wills etc. We then had a second attorney who specializes in Elder Law to review our plans and we were told, everything was drawn up correctly according to our current state laws.

Where I deviate from this is in that I've told all of my adult children what my wishes are for the future. First wish being that my DW and children carry on with their own lives once I am at the point where I need MC. I also told them I'd prefer being sent at least 100 mi from where we live, so that it makes it hard for them to visit, easy for them to live for the living. We have a 12yr old daughter who has been clued in on some things now, more will be shared with her as she matures. My DW is in her early 50's, I'll be 60 this coming July. My DW is in good health and I believe will have many years to live well beyond the time that I have.

I encourage all that read this to take the time and have this discussion with your spouses and adult children, the better informed they are the less conflict there will be among themselves and all will know what dad or mom believes and wants. I think that no matter what we are faced with whether it is ALZ, Parkinson's, Cancers, we owe it to our children and spouses to let them carry on.

We have our faith and practice it , and that has given all of us peace of mind and educated about what the future is going to bring. We've been participating in a local ALZ Forgetful Friends group and that to has been valuable in helping up plan for the future. God Bless all of the Caregivers, Spouses and Patients, no matter the disease. Adult children, keep in mind and put together a plan for your own future care and discuss your wishes with your Dear Spouse. Pass on the wisdom. We can have an effect on the future.

You don't need your husband's permission to *start* looking at care facilities. You only need to raise that difficult subject with him once you've found a facility you really like the look of.

So I should begin your research. This will make you feel a lot better from the outset, because at least you'll be doing something positive about the situation; and then, when you do need to involve him, you will be talking about his moving TO a place with important advantages for his care and his quality of life as opposed to moving out FROM the home because you can't meet his needs. This could make all the difference to how both of you feel.

My husband had a massive stroke 9 yrs ago. He was doing very well and could do most everything for himself. He got to where all he wanted to do was stay in his recliner and watch tv. He lost all muscle in legs and arms. I took care of him for 8 yrs with zero help. I finally could no longer do it alone. He has been in a NH for almost 1 year. The sad part is, I don't miss that person at all. I miss my husband very much. All that to say, I completely understand where you're coming from. Please don't feel bad for your feelings. We can only do so much befor we get total burn out. My heart goes out to you and all the rest of us caregivers. No one knows unless they've had to do it.

You are already running a care facility, not a marriage. Have a look at other options, and tell him it will have to happen - no choice, you can't do it. Then with luck, your compassion and love will return enough to help you both.

"Most blogs I read no one talks about not wanting to take care of a spouse - it is all about what a privilege it is to be a caregiver or even though it is hard work the reward is priceless "

I'm gagging...

How about you ask someone on those blogs if they want an extra privilege of taking care of your husband? They should jump for joy.

I don't mean these words as a condemnation because I think many caregivers have felt the way you do - I think that being trapped in a home dependent on those who are no longer able to show love and compassion is infinitely worse than the alternative.

samlil,

Thanks for your honesty! I'm sorry you're going through this. You've reached your saturation point. You're burned out. Who wouldn't be? The fact that you feel "sadness and stress" speaks volumes. You actually do care.

On this forum, someone explained how the brain (during times of extreme adversity) creates a smokescreen of indifference to protect itself. It's a built-in shield to help us make it through. I've experienced something like it: a feeling of losing my humanity somehow. I went through the motions of caring for Mom but felt cut-off inside. It helped me through a awful phase when I was truly overwhelmed. Since then I've learned how to manage better. Feelings were restored when my psyche knew when I could handle them again.

It's not too soon to explore alternatives to caring for your husband at home. You have fought the fight and kept the faith. Maybe it's time to turn over your husband's practical care to professionals, so you can focus on restoring your physical and emotional well-being. There's no shame in this. By addressing your own needs, you'll be better equipped to care for your husband. It'll also help your sons.

You can't help or change what is happening to your husband.  You do have the power to change what's happening to you.  It's time..... 

God bless you and give you wisdom.  Hugs. 💙

Do start looking at care facilities. My DH has put me through the wringer over the last 25 years--one major things after another. His health is OK, but there WILL come a day when I will say "I cannot do this and maintain ANY sense of self, much less love for you (he is a VERY VERY contrary and ornery patient). I've had 2 serious breakdowns AFTER he had "recovered" from the latest health crises lasting from 6 months to 18 months. Not one soul took care of me!

Take it slow. You are lucky you have sons who are on board. Check out facilites, take your time and be as loving to DH as you can be.

I have already worn myself to a nub with CG for my hubby and he still works FT! I am horrified, just horrified at the thought of him retiring, as he plans to stay in bed all day for the rest of his life.

People don't talk here about not wanting to take care of a spouse b/c it's not "nice". It makes us sound mean, when in fact, we don't know your backstory--and EVERYONE has a breaking point.

I hope other, who have had similar experiences with this weigh in on your dilemma. We still love our DH's, but it's as if THAT dh has gone away and we're left with this other person, we don't even know.

I sense love and caring beneath your exterior post. You'll figure this out, you dh is simply coming to the stage where you just cannot give him the care he deserves at home. You're not alone in this.