My husband of 21 years is now my caregiver. Over the past few years the amount of help I've needed has increased. I bring almost nothing to the table in terms of day-to-day family chores, etc. Going to the bathroom is the only thing I can do by myself.
He works 7 nights a week at a paying job, plus does it all - laundry, cleaning, shopping, cooking - everything. On top of that he maintains my oxygen equipment, helps me with ADLs, and oh yeah we have a 16 year old daughter who is a handful!
The problem is this - he never complains to me, never says he's tired of frustrated or depressed or anything. I've tried to talk to him but he insists he's fine.
He can't be, and before he blows a gasket (in his heart or his brain) I'd like him to talk to somebody, go to a support group, anything. I've managed to save some money, I offered to hire a maid service even just for a month. He said no and proceeded to steam clean the entire house.
I'm actually afraid he'll wake up one morning and just walk away.
Any ideas/advice?
Thank him, count your blessings. When you are taking a walk around your home for your health, pick up something, put it away, fold a piece of laundry sitting down. Going out once a week requires major effort with your condition. How do you force yourself to do this? Do you feel better or worse when getting home?
Can you have a talk with your teen, and ask for her help for two hours once a week. You and her can create a special surprise for hubby. Or ease his burden somehow together.
So sorry this is so hard and that you are ill. It requires a fight for your life, daily.
Keep fighting, don't give up, remain positive.
I want to help my husband as much as possible, in a way he can feel good about.
Thank you all, again😊
She explained that there was an evolving situation in her family that was troubling and not easy to resolve, and by focusing on physical work she was able to take her mind off the issue for a while, long enough to think more clearly (as Joannes also addresses in her post).
So the work your husband is doing may in fact have a different basis for his own coping mechanisms.
There's another issue here, which comes through loud and clear in your posts, that you're seeing life from the perspective of being overwhelmed and are also focusing on death, not life. that's not a criticism, just an observation. It's easy to fall into the trap of negative thinking and anxiety. Most of us probably would if we were in situations in which imminent death was on the near horizon.
Your husband may see your situation as compromised but not necessarily of imminent death.....two different perspectives.
But it seems to me that you have a great husband who will help make your life better, so I'd focus more on that - what the two of you have together, his support, how you can plan for the time when he might face burnout or fatigue and be prepared to institute remedial action. But respect that he has a right to his private thoughts, and don't put him on the spot.
Men don't easily share their feelings; respect that and be grateful for what he's doing, keeping a watchful eye for indications of fatigue and burn out. But remember that he has a different approach and doesn't seem to be focusing as much on death.
It's not my intention to be critical, but I see in your post things that, for example, aren't as difficult as they're made to be. Maintaining oxygen equipment is easy; I did it for years and am doing it again now. Household chores are a lot more labor intensive. What I'm saying is that there's a different perspective from someone who is focusing on illness than someone who's focusing on providing remediation.
And it may be that he actually cherishes this role because it gives him a chance to be your carer, protector, and reciprocate for years of your having cared for him as your mate.
I'm wondering also if you've asked your pulmonary doctor about pulmonary rehab. Even with a permanent condition, you might be able to benefit from pulmonary therapy. It might give you the confidence and assistance you need to get around more, which will improve your outlook.
I think Joannes makes good points as to planning for death and getting your affairs in order.
I have several chronic health problems but the one that causes me real problems is a progressive, incurable lung disease. Even on 5lpm of 02 24/7 I'm still very easily winded and fatigued. I rarely leave the house more than once a week.
I do manage to handle all our finances although even that is becoming a challenge with my short term memory loss.
My prognosis is I'm going to die. When is unknown, but certainly sooner than we'd like. I'm having to have lithotripsy for kidney stones and it may very well be the death of me. After this "outpatient" procedure I wind up in ICU bc of my breathing.
I'm just wanting to find out if maybe there's a social services agency that would even send someone to the house for an assessment for him. I love him dearly and I know this is hard for him.
Yes, your husband needs help and a break! But, like most men he most likely will never confide in you. He may feel it is admitting defeat and mean he is coming to grips with his denial.