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OnlyChild1960 Asked February 2023

Has anyone been the sole caregiver for a parent who had an acute stroke?

My dad had a stroke 3 months ago and he has left side neglect. He’s unable to transfer himself and they’ve told me he needs 24-hr care. I want to make him happy, but doctors, therapist and nurses say I can’t do this alone. I work outside the home. Any suggestions?

Scout1314 Feb 2023
I feel for you pardner. I am in the same boat with my wife, who had a severe stroke last November. It has taken me some time to grieve and I am sorry you are going through this terrible experience. I brought my wife home twice, and she went back twice. I am 81 and found out pretty quickly that I could not care for her at home by myself. I bothers me deeply to have her in a long term facility, but at least I know she is safe, fed decent meals, medicated by professionals, and cared for by folks who know what they are doing. Please don't blame yourself. You REALLY CAN'T do this alone and it is not your fault. As a sole caregiver myself, I can tell you I still deal with my never-ending grief, but I am slowly learning to deal with it.
GrannieB Feb 2023
Bless your heart. You are doing the right thing. If your wife could, I'll bet she thanks you for allowing her to get the best care possible and at the same time, allow you to live your life. Don't worry Jim...she is happy and would want you to be happy too. (And she may even like it there.) :)
funkygrandma59 Feb 2023
I too was the sole caregiver for my husband who had a massive stroke at the young age of 48. It affected his right side and left him unable to speak, write, read, walk or use his right arm.
He did however have extensive physical, occupational and speech therapy for many months after, and was eventually able to walk with a brace on his right leg, say a few words and some short sentences, but never did regain use of his right arm or knew how to read or write.
But we made it work together. I'm sure it was easier for me because I was 12 years younger than my husband.
It did get harder as time went by as my husband continued to have many health issues along the way, and eventually developed vascular dementia, which took him in 2020 at the age of 72.
But I was blessed(hard as it was)to have been able to keep him home and care for him until his death.
Your dad was older when he had his stroke and I'm not sure how much therapy he has had, but I would make sure that he is still getting the necessary therapy he needs to get back as much as he possibly can, before it's too late.
I know when my husband had his stroke, his doctors said that it can take up to 2 years before someone can regain what has been lost, so make sure that your dad and his therapists are still working hard.
I wish you and your dad the very best.
NeedHelpWithMom Feb 2023
He was so young. So were you when he had his stroke. I’m sure that he appreciated the support that you gave to him.

My father was never the same person after his stroke. It was hard to see how he declined after his stroke.

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NeedHelpWithMom Feb 2023
I cared for my father with a stroke after he left rehab. It is a lot to keep up with.

If you are able to, I would either hire additional help or place him in a facility.

I don’t think it will be possible to work full time and care for your dad.

Beatty Feb 2023
To follow onto what Zippy said, if you won't consider that advice or 24hr care accommodation yet - read on. Sorry to be blunt - better to know the truth of a thing & look it in the eye imho.

It may be possible for Dad to live at your home. Here are the immediate things I can think of you will need (there will be more);
- equipment eg wheelchair, wheelchair ramp, commonde, hoist (if unable to stand to transfer) electric bed
- support person for all assistance eg transfers, meals, toileting, dressing, bathing, medication dispensing.
- assistance for activities and social support

OnlyChild, if you work outside the home, then you will need to delegate Dad's care to trained people all the hours you are away.

This will be very financially burdensome + take much organisation for you to arrange - a staff roster, staff absences, late, fill-ins, training etc.

The hours you are at home, you will need to be 'on duty' to assist Dad. Eg every evening & every overnight. This will include toileting assistance.

If Dad can no longer use a telephone & has poor mobility or cognition, he may not be safe of left alone. This means if you wish to go out, he will need to accompany you. Probably in a wheelchair. Could you manage transfers in & out of your car & manage the weight of a wheelchair? There are lighter weight ones (but I know I can't). Or use a wheelchair taxi service.

It's 24/7 supported care with a staff of YOU + staff you hire.

Don't fall into any magical thinking traps that because someone is 'at home' their 24/7 care needs disappear.

Also, that their social & emotional needs will be met.

I have seen the fallout of people brought home when there is inadequate care.

Please change *happy* to something more useful.

PS Don't be surprised if this hits you hard. You may start to grieve what Dad has lost. It is probably a lot. It is OK to grieve.

Beatty Feb 2023
I hear what you say "you want to make Dad happy".

*Happy*. What does that mean to you? To Dad?

I would start by listening to Dad's medical team. Update your thinking to the new reality, harsh as it is.

Stroke is a game-changer. It is a serious brain injury. Yes people do & can recover & it is good to be hopeful! I hope Dad has a great physio team to assist with his recovery journey. Be a part of that - to cheer him on with any gains made.

As to "make Dad happy". Look to rephrase this.

How about *support* Dad in his stroke recovery or *support* Dad in his adjustment to being a stroke survivor.

*Happy* does not mean trying to BE a 24/7 nursing home.
OnlyChild1960 Feb 2023
Thank you for your response. Considering he doesn’t qualify for Medicaid that’s a game changer.
Fawnby Feb 2023
I was 24/7 hands-on caregiver for my spouse after he had an acute disabling stroke. In addition to what everyone is telling you here, I need to warn you about emotional lability of stroke victims. This means extreme anger, possible violence, sometimes long laughter when nothing is going on. A while into recovery, painful muscle and tendon contracture started. This affects mobility, balance and development of the muscle. This spasticity is why stroke victims’ arms and hands pull up in a characteristic way. Stroke is worse than you think it is. Recovery never goes smoothly and requires more people than just one to manage it. It is better accomplished in a facility than at home.

ZippyZee Feb 2023
Put him in a facility. Not possible for one person to care for someone in that condition.

EVENTHAT Feb 2023
I was a son full-time caregiver for my mom. I had to live with the daily fear of her having a TIA (mini-stroke). It would come on suddenly, but only last a few minutes. Each time, I would try to be calm as I could see the struggle she was having. It saddened me that there was nothing I could do to stop it. As part of our daily routine, I would ask her write down her DOB, SS No., Address, and Phone No. Then I would have her sign her name. It was an exercise to keep her mind active.

The TIA's did take a toll, as she became more frail, and thus my responsibilities as caregiver increased. I often thought, "What if this time, it turns out to be the "big one." How will I handle it? I was so relieved I never had to answer that question, as she never lost the ability to feed herself, speak, write, walk or smile. She died at age 93, having lived a long and productive life. I still get upset thinking what we both had to go through. You do need additional help. Reach out to your local Office for the Aging, and County Dept of Social Services, for suggestions on how to get assistance. I wish you well.

Grandma1954 Feb 2023
With the help of equipment and caregivers when you are not there it MIGHT be possible to care for him at home.
He will need to hire 1 maybe 2 caregivers. Some will require 2 caregivers if there are problems with transfers or if equipment is used. (This is if you hire through an agency)
Most AL facilities can not use equipment so if that is necessary and he can not be a 1 or 2 person transfer he would then be a candidate for Skilled Nursing Facility.
Maybe the only way to be sure that he is safe is in Skilled Nursing.
YOU can NOT "MAKE" him happy. That is not your job. He can chose to be happy or not that is his choice.
If you are POA and he can not make decisions at this point your sole responsibility is to make sure he is SAFE and cared for in a setting that is appropriate for his level of care needs.

BuffyRoberts Feb 2023
If you try to do this alone you will be miserable. It’s a day and night job which means very little sleep. You will probably come to resent your dad. He probably needs to be in a nursing home unless he has a lot of money to pay for 24/7 help. If you choose the NH try to visit most days. You can even take him for drives or out to eat if he is able. You deserve a quality life and doing this alone will not be it.
TouchMatters Feb 2023
Thank you Buffy.
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