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.
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.
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 need to start looking at facilities and talk to an elder law attorney.
Your sons may benefit from talking to a counselor of some sort.
Stick around. You will GREAT support and advice here.
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.
God bless you and give you wisdom. Hugs. 💙
as for those who Talk about what a privilege it is to be a caregiver or even though it is hard work the reward is priceless " , many lie. It should be embroidered on a pillow
I'd say look into NH care and they'll help you figure out the financials of it. You'll also need to talk with an elder law attorney in the event you decide on a divorce, levels of care for your husband, when/ if he'll need Medicaid, etc.
Would gladly be more compassionate with you.... but I have to tell my Mom's NH which hospice agency I want for her today. Good luck.
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.
It's no use wishing that there were three of you, or that you were some kind of angelic supernurse who could take all this and come up smiling: a plan has to work for the people it's for.
He needs a lot of care - cath and feeding tube, just for starters. 7 years is a long time. I think it is appropriate for you to look into NH care for him.
You are lucky that you have a good care team and that your sons are on the same page as you are.
Don't worry about the pollyannas of the world. I think they're either lying or just totally ignorant or in denial. Caregiving is not easy.
Try not to feel guilty for caring about your own needs. Your husband will be taken care of in a facility. Sure, it's different from being home, but it sounds like it's time.
Good luck.
My mom had Parkinson's disease (which never progressed as far at this poor man’s). Mom ended up with aspirated pneumonia due to her Parkinson's and that’s what took her to glory.
My dad could not take care of my mom's needs. He was older, but he was still fairly active. When we realized the level of care mom needed, we worked to get her into an assisted living facility. She eventually moved to nursing care due to a number of falls as her disease progressed. It took a team to care for her, and they did a great job!
Making decisions is not easy, especially when you're bone weary and mentally fogged. If samlil can take a break, I think she'll find all of life a little easier. It won't be wonderful, but it will be healthier.
Being a caregiver is SO HARD. I care for my mom with Parkinson’s disease. It will not get any easier. It never does. I am glad you are honest. You aren’t helping him or yourself if your heart is no longer in it. Set both of you free. It takes time to research facilities. Start as soon as you are able to. Ask others in your area who they like and don’t like.
I hope you will regain your life. I hope you find compassion again, not just for your husband but yourself as well. Think about any separation or parting of ways between people. Always nicer if it can be loving.
My ex reached that point six years ago. She said she wasn't happy.
Once I wasn’t having to do the full time care, I found I remembered our happy life together and the resentment lessened. Like you, I could see it slowly killing me. Nothing I could would change our reality, so preserving myself was my my best option.
i strongly encourage you to see a good elder attorney now. I did, and found that in certain circumstances (like mine and yours) Medicaid is available right away (I’m in Michigan, not sure if it varies by state). Good luck, and know you’re not alone.
Find a place of care for him. Take a deep breath and do it. I hope you have Power of Attorney. This is a brutal situation that must change.
Do not ask for his cooperation, even though that would be the best.
Make the decision for his placement. That would be the best for both of you and your family.
The “ emotional detachment “ you are going through IS one smart way to survive.
You have done so much! Give yourself credit and remove any
“ whys” from your thinking.
It is a tough bridge in this road and must be crossed. You will come out relieved and stronger.
Sending you hugs and positive energy.
It's time for a heart-to-heart talk, revealing that you think it's time to consider care facilities...more telling than asking.
Are you his MPOA and POA?
Just don't tell him you guys don't care! That would really hurt. I mean, he doesn't want to be in that situation either!
You obviously have done a great job, yet it's time.
Once there's some space, perhaps you all will feel differently and be able to visit him, and the love and compassion for him will return.
All the best to your family!