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.
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.
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.
Of course, we can only hope and pray that those hearing the message will accept it well.
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.
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.
God bless you and give you wisdom. Hugs. 💙
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.