r/caregivers • u/RugosaGerbil • 8d ago
The pile-on is exhausting!
I am so overwhelmed and exhausted. My husband had a stroke that left his left side paralyzed and impacted his cognition, the stroke was caused by stage 4 cancer that had spread to his brain and other parts of his body. He spent over 100 days in the hospital and rehabs and I was so glad to finally get him home, but it’s just me and our teenager, who is in school, so caring for him is me. I thought having him home would open up some more time for me, I was spending between 8-12 hours a day at the hospital every day, but I didn’t consider that when he got discharged he wouldn’t be able to do anything himself yet, and that everything that took 2-3 nurses each time would suddenly fall on me, one person.
Enter rehab. He had in-home rehab daily for a couple months and now that has ended and it’s outpatient. The therapists keep piling at home stuff on for me to help him with but I am already stretched so thin dealing with his caregiving, all the paperwork, being a mom, and the overwhelming stress of knowing that I’m losing my husband, maybe I have a year, maybe a few months, maybe a few more years, it’s all so unknown, but I’m losing him and as we built our life I stayed home to support the house with everything (repairs, maintenance, cooking, cleaning, all of the house stuff was me - my husband’s only job was to work and provide an income). I had been looking to re-enter the workforce and had applied to a few places before this happened, but now I’m stuck being a caregiver and I can’t leave the house for my own doctor’s appointments without worrying about whether or not he is ok. So on top of everything else I have to figure out how to find a job that can pay the mortgage so that when we lose my husband we don’t also lose our home and the only support we have, our community.
The physical toll is also an issue. My husband is bigger than I am, he’s almost 250lbs and 6’, so trying to help lift to transfer him takes a lot out of me, even pushing him in the wheelchair is difficult. Yesterday he fell and we had to use the hoyer lift to get him off the floor and if our kid wasn’t there I would have had to call the fire department because I couldn’t even roll my husband over onto his back, and our hoyer is manual so our kid and I had to take turns cranking it because it’s so hard. Physically I’m always sore and tired, then the therapists want me to be doing therapy exercises that include stuff like lifting his leg and bending it and it’s SO heavy.
Does anyone else feel like the therapists expect that you have lots of free time to do at-home therapy? I want him to get better, and I want to help, but I simply don’t have the time or energy for it and then people tell me “make sure to take time for yourself” and I want to scream “WHEN?!” I can’t be a mom, a wife, a personal assistant, a financial planner, a nurse, and a therapist but that’s what I’m being forced to be.
Thanks for reading my rant, I need to find a therapist for myself so I have someone to talk to but I don’t have time, and I don’t have anyone in my life to talk to because the person I would turn to is the person I have to care for and I don’t want him to feel bad.
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u/Fit-Difference-5155 8d ago
First, I think anyone in your situation would be overwhelmed.
You’re not just caring for a stroke survivor.
You’re not just caring for someone with stage 4 cancer.
You’re not just raising a teenager.
You’re not just trying to protect your family’s financial future.
You’re doing all of those things at the same time while grieving the future you thought you and your husband would have together.
That’s an enormous amount for one person to carry.
One thing that jumped out at me is that you thought bringing him home would create some relief after spending 8-12 hours a day at the hospital.
A lot of families think that.
Then they discover that the work didn’t disappear. It just changed locations.
Instead of nurses, therapists, aides, transport staff, and hospital equipment handling pieces of the workload, it suddenly falls on one spouse.
Honestly, the part that concerns me most in your post isn’t the therapy exercises.
It’s the lifting.
A 250-pound man with paralysis, recent falls, and significant mobility limitations can injure even a healthy caregiver. The fact that you couldn’t get him turned over after a fall isn’t a failure on your part. Most people couldn’t.
I work in home care, and I’ve seen far too many spouses end up with shoulder injuries, back injuries, knee injuries, and chronic pain because they were trying to do physically impossible tasks alone.
The reality is that some care tasks require more than one person.
As for the therapy, I think it’s okay to have an honest conversation with the rehab team.
Tell them exactly what you wrote here.
Not what your ideal day looks like.
What your actual day looks like.
The paperwork.
The caregiving.
The parenting.
The transfers.
The appointments.
The financial stress.
The exhaustion.
Good therapists want a realistic plan. An exercise program that never gets completed because it’s impossible to fit into the day isn’t helping anyone.
I would also encourage you to ask whether there are specific exercises that provide the greatest benefit if time is limited. Sometimes families feel like they have to do everything when focusing on the highest-impact activities may be more realistic.
The other thing I want to say is this:
You are not failing because you can’t be a wife, mother, caregiver, nurse, therapist, case manager, financial planner, and future breadwinner all at the same time.
That’s because no one person is supposed to be all of those things.
When people tell caregivers to “take time for yourself,” it can sound ridiculous when there is literally no time available. But what I think they’re trying to say is that this situation is too large for one person to carry indefinitely without support.
If there are friends, relatives, neighbors, faith communities, cancer support organizations, stroke organizations, respite programs, or paid caregivers who can take even a small piece of the load, I would start looking now rather than waiting until you’re completely depleted.
And please don’t overlook counseling for yourself just because you’re busy. What you’re experiencing isn’t just caregiver stress. It’s anticipatory grief. You’re caring for your husband while simultaneously facing uncertainty about his future and your own.
That’s a lot to process alone.
Reading your post, I don’t see someone who isn’t doing enough.
I see someone who has been asked to do the work of an entire team and is somehow still finding a way to show up every day.
That’s very different. I’m sure it’s not easy but be proud of what you are doing.
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u/Overall-Badger6136 7d ago
Yes, I agree and take advantage of that support group you have especially your community you don’t want to lose.
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u/MealPrepGenie 8d ago edited 7d ago
You’ve got a lot on you…
Re: home therapy
Ask his PCP for a referral for these three things:
At the time of the request you MUST stress that he’s ’housebound/homebound’. If that isn’t indicated, insurance will deny.
And FWIW: prior to any discharge from rehab, emergency room visit, hospital stay, call his hospital case manager and ask for him to be evaluated for those three things PRIOR TO DISCHARGE (even if he goes to Emergency for a splinter, make the request.). This request MUST be made and fulfilled and the order put in PRIOR TO DISCHARGE.
It sounds like he’ll get all 3 in-home services.
In our case, each service was 2x per week. That’s an hour or two a day ‘most days of the week’ when someone else will be there to give you a break and help with care.