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Hello, everyone!

     My husband suffered his stroke almost two years ago. He's doing great, but he has lost his job as a result, and I have lost mine as well, to be home to care for him. He cannot do any self care on his own, so I help him walk, and we do some therapy activities during the day. He collects Long Term Disability and Social Security benefits as well, which is very helpful. For health insurance, we are on Cobra from my job, which takes a huge chunk of our income.  He will not be elegible for Medicare until next year, and I am not old enough to go on that. We also have two daughters in college, which isnt cheap. Thank goodness our home is paid for. This is okay for now, but not sustainable in the long term, as I don't know if Sam will ever be able to work again. I have been looking for a job at night, but I have mixed feelings about this. Sam has been encouraging me in my job search, and says that that would be the only way that we can save for our retirement. Working nights, our adult children will be home with him, and he usually sleeps all night anyway, but I will worry about him constantly. Also, I have never worked nights before. Will it take a toll on my health, and compromise my caring for him?  have any of you had similar circumstances, and if so, what did you do? any advice would be appreciated. Thanks!

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Hi Ana

 

I don't have any answers, just some random thoughts:

 

Just after my stroke, my wife stayed home for several months, and worked from home during that time.  She is lucky that a lot of what she does she can do remotely (mostly writing, data analysis and the like), and her colleagues were able to take up the slack for the stuff that requires her physical presence.  Is something like that an option for you?

 

When she went back to work, I was functional enough to take care of myself, but I always knew that she was at the end of a phone and could get home in 45 minutes if needed.

 

If your husband is able to feed himself, use a phone, get to the washroom somehow, and be OK for several hours on his own, then you might consider looking for a part-time or flex daytime job instead.  Being forced to be more independent could be a good thing if he is capable of it.

 

Also, depending on how much you would be earning, you might be able to hire someone to help out while you work.  This could even be a retired neighbour.

 

It seems to me that caring for him during the day and working nights is a recipe for complete overload and burn-out.

 

Good luck with whatever you try; I hope that you find something that works for you.  Please keep up updated.

 

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Ana

That is a tough call, it depends on so many things, have you given any thought on something you could do from home that way you are always there just in case.

I wish I could be of more help but only you know what you feel conformable or can do, something will come to mind  you will find the perfect opportunity to have a career but be there when someone need you.

Never give up. 

Ed

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HI,  Paul and Ed,

   Thank you for your kind replies. Yes, I've looked for ways to be able to work from home, which would be ideal. My job is such that I would need to work out of my home, unforttunately, and I would need to learn some new skills to be able to work from home. I have'nt ruled this option out entirely. I do not have a college degree, and my type of job doen't pay well, but our health insurance would be taken care of. Unfortunately, my husband cannot use a cell phone yet,  use the restroom on his own, or prepare his own meals. I'm hoping that our kids would help him as far as that goes. I know it won't be easy, but hopefully something will work out. I'm glad that it worked out well in your situation, and that you and your wife were able to find a way to keep afloat, financially. Thanks for your advice!

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AnaJ, Y0ur dilemma is very common in families with a stroke-stricken member. The first thing that you may want to do is to apply for Disability for your husband at the Social Security office.  Your and your husband's income has no bearing on it-it's based on how much your husband has paid into the system and will give you guys extra money to live on. But apply soon, because SSI can take up to 90 days to process an application. 

In staying alone, does he have the mental ability to know what is or is not an emergency? Would he know what to do, or whom to call? Would he understand things like not to handle knives, or try cooking while no one is home? Are there stairs in your home? look at safety issues first, then at practical concerns like eating, because if you don't feel that he's reasonably safe there's no point in going further. Try dry runs and see what happens.lIKE LEAVING HIM ALONE WHILE YOU RUN TO THE STORE,ETC. Gradually, you can leave him alone for longer and longer as he proves he can handle it.  But I also think that it's important that he at least able to use the phone. Becky                         

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If he can't manage a phone yet. maybe consider a mobile alarm device.  The one my mother uses will automatically call people if she falls and can be used as a limited function speaker phone. It's not perfect but its a useful solution to this sort of problem.   This is the one my Mum uses.  https://nationalhealth.com.au/personal-alarm-pendant/ You'd need to find an equivalent for your country.

 

 

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Hi, Becky,

   Yes, Sam does receive SS Disability. One of his caseworkers during one of his hospital stays was very helpful in helping us to apply for that. He also receives Long-term disability, which helps alot. He has been on SS Disability for over a year now, and should be elegible for  medicare next year. 

    I am also able to leave him alone for short periods of time, like to run to the store for fifteen minutes to pick up his medicine or something, but I don't like to do that. I think of things like a fire, and he cannot get out. He always tells me to just go and not to worry, but it seems that I have become very hyper-vigilant after his stroke. I try to go when at least one of our kids are home. We also have a baby monitor for him, to make things easier. I don't think he's in any danger or doing anything he's not supposed to,  and he is very aware of his limitations. As for working, I'm concidering getting him a caregiver for a few hours, until at least one of our kids come home to be with him. I feel that he cannot be left alone for hours on end. Maybe this situation will encourage him to try and do more things on his own, and be more independant. We will see. Thank you for your advice!

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Hi, Heathber,

  Yes, a monitoring device sounds like a wonderful idea! We got one for our Mom as well, when she lived alone. It gave us all peace-of-mind! Thank you for that idea!

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The other side of this coin is don't forget his mental health and situation; being treated like a baby or child who can't be trusted wears your soul down.  Yes being alone and relatively helpless can be sort of scary, but it's also exhilarating in a way. He is an adult and unless he's given you reason to believe he's cognitively compromised and a danger to himself you need to learn to let go and let him adult again.  It will be better for both of you.   Feeling like a burden on the family who stops you and the kids from having lives away from home will do more harm long term than you letting him be alone sometimes. Yes it's a balancing act, but you did it for your kids, you can do it for him.  Also there's nothing like having to do something for yourself (e.g make your lunch when you're hungry) to make you push your limits. and if he's to regain function he will need to push some limits.

 

Another hint for caregivers that sometimes needs to be said out loud, as you don't think of it.  Offer help don't take over.  Yes I make some pretty big messes sometimes but being an adult human being means I don't always want my food cut up for me.  etc.  and the words can make a difference too "do you want help that" vs "do you need help with that" they both give me the option to say "thanks, but no thanks"  but one gives me control of my life and the other doesn't.

 

OK sermon over I do hope you find a balance that works for all of you. as we say all the time stroke hits a family not just a person.

-Heather

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Well that was spot on. April has had to try and make herself not automatically feel I am in need of help. I understand that because for a long time she had to do almost everything for me. We've gotten to a place where she understands I will ask for help if I need it. That helps. Also that if I look angry it's my frustration over my situation sometimes and has nothing to do with anyone. Yes the time alone Heather really is invaluable. It can start from short periods and grow from there. I hope this helps in some small way.

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that's exactly it Will. I was lucky my Mum and Dad worked on only help if she asks from day one, and it makes a huge difference.

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2 hours ago, heathber said:

that's exactly it Will. I was lucky my Mum and Dad worked on only help if she asks from day one, and it makes a huge difference.

Yes a difference. Why is that? I use to get upset with an offer of unsolicited help. I think it's the "I can do this". "No thanks I think I got this." determination.

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Thank you, Heathber,  what a wonderful post. I never really looked at the situation that way, and you are so right. Sam does need some change in his life for the better, and this might be the circumstance to make him do it. I'm trying not to be harsh. I've been home with him 24/7 since I lost my last job, doing most everything for him. Maybe a little tough love is in order. Sometimes lately, I might ask him to do a task that I know he can do, and he says he can't, or won't, because he's tired. I do try to give him choices in things, like what do you want for dinner, or when would you like your shower, or such. He even helps me cook sometimes, in the kitchen in his wheelchair. My not being around for a few hours will be scary for us both, but as long as someone is there in case he needs something, like our kids, he should be alright. This might be the situation to get him to move forward in his recovery!

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Ana the fatigue is real and can be debilitating if you haven't read it already check out spoon theory. you'll notice lots of us talk about "how many spoons" a task takes.  https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

Making him do for himself is actually important, but if you've both got into other habits it will take time to change.  Maybe start by having the talk about him getting back to independence, and how that means both of you have to make changes to how you've been doing things.  Even if all you do now is start waiting for him to ask before you do things, and that means don't hover. having to keep asking will probably drive him nuts pretty quickly, but it will also show him what he can do if he tries.

best of luck to you both

-Heather

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Ana, I just want to tell you that you're doing a great job as a caregiver.  Most of our suggestions you've already done, and you show an openness to the others. Good instincts and flexibility. Yep, those are the tickets.   Becky

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Thank you, Becky, for your positive, kind words. Everyone on this site has been wonderfful. We've all been touched and changed by a very tragic occurance, but the commaradarie here is great!

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Ana;  a vote of thanks to you (and all the other caregivers).  Taking care of a spouse who is now a stroke patient is not easy, and is not a job that you signed up for when you got married.

 

      paul

 

 

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Thank you, Paul. We just do what we have to do to survive this world, and whatever it throws at you. I know that our loved ones did'nt ask for the situations they are in, eather. Kudos to all you stroke survivors and caregivers! You are all pretty awesome!

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