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My husband was diagnosed 7 years ago and has declined rapidly during that time. He is about to go on a feeding tube at night to supplement nutrition as he has serious swallowing problems. He is permanently catheterized but is somewhat bowel incontinent. He is 67 I am 56. He moves between a walker and a wheelchair. He is very difficult to understand when he speaks. I am very active and do not want to take care of him. I work fulltime and have built a fairly successful care team but I still dread coming home from work and I really resent the weekends as I have to stay with him most of the day. It is very costly to pay for all of the care as well. I try to be patient as this is not his fault but I really have no feelings of compassion or caring for him. Our sons are 22 and 24 and their feelings are similar to mine. This situation definitely negatively impacted their high school and college experiences. They do not live at home. I am pretty sure the sadness and stress are going to make me sick and I'll probably end up dying before he does!


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 - well not for me.


Soon he will not be able to be left alone at all and I just don't think I can handle it. I am considering asking him if we can start looking at care facilities.

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 ***!
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NeedHelpWithMom Feb 19, 2019
I love your response!
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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.
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NeedHelpWithMom Feb 18, 2019
I like that wording of moving TO a place instead of FROM home. Very kind and lovely way to express a transitional period. Transitioning for most people is stressful and I think you have just made it easier for everyone all around to better cope. Thanks! I am going to remember those words.

Of course, we can only hope and pray that those hearing the message will accept it well.
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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.
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NeedHelpWithMom Feb 19, 2019
You sound very wise.
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"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.
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Segoline Feb 16, 2019
Ive seen those too.
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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.
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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.
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dlpandjep Feb 16, 2019
Your gentle wisdom always blesses me cwillie.
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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.
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herdingcats Feb 19, 2019
Lovely, honest, and practical response. I've not been in this situation but it sounds on point to me.
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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. 💙
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I feel your pain. I pray for forgiveness every day because I am very resentful having to care for my spouse who is on oxygen 24/7 and has vascular dementia. I was in the process of getting a divorce when he was diagnosed with COPD and I stopped the process because I felt sorry for him. Then the dementia diagnoses came and this has caused the biggest problems. I moved from an area where I had lived for over 50 years had friends, doctors etc. there to move near my son. I do not know anyone in the area other than my son and his family plus do not know how to get around. I have always been a very social involved person and now I am lonely and stuck with a demented person who creates problems on a daily basis.
We have him on a waiting list to go into a home that accepts Medicade. In the meantime I am working on my attitude (not feeling so resentful) There are probably others out there doing care giving who feel the same.
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Pattymyname2 Feb 19, 2019
Glad you are praying.
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Compassion Fatigue...look it up!  I struggled with the indifference I felt towards my mother, and I found my answer.

I'm surprised no one mentioned the fact that some NH may have wait lists, so it's a good idea to place your LO on several wait lists to improve the odds.  Wait periods can vary from 6 months to more than a year...unless they end up in the hospital first and then it may be easier to get into a NH.

You...and everyone else...are not alone...there may be a stigma of showing our feelings, but hiding them doesn't do us any good either!  There is a name for what you are feeling and it's ok!

Good luck finding the care he needs...and take care of yourself!
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