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ReggieMasako Asked August 2017

My wife had a massive stroke and needs total care. Should I care for her at home?

My wife had a massive stroke in 2013. She needs total care and is in a Hospice Home now. Thinking about bringing her home to care for her. I have a patient lift but may need a different sling and a motorized hospital bed. I have to sell my dining room furniture to make a convenient place for the bed. I am 76 and in pretty good physical shape. My wife is 83. Her right arm and leg do not function, and can be painful when transferred. She cannot speak or help transfer. I was thinking I could care for her if I had help 4-5 hours a day Monday through Friday.

Grandma1954 Aug 2017
If she is on Hospice will they also provide the proper equipment that you will need to care for her?
Hospital bed
Hoyer lift and slings (ask for a full sling with a commode hole as well as a split leg sling.
Do you have a bathroom where you can get her into the bathroom to bathe her? Or will you have to do bed baths?
Do you have carpet in the room where you will care for her? Carpet makes moving equipment difficult.
Do you have help? You alone will not be able to care for her 24/7.

If she is able to stay where she is and if she is well cared for you might want to reconsider bringing her home. You can visit and be a loving husband. Once she is home you will be a caregiver first and a husband second. I can tell you first hand the stress of caregiving takes some of the fun out of being a loving spouse. (I use the term fun loosely and in jest) where she is you can concentrate on her, hold her hand, talk to her.
As a caregiver you will be concerned about changing her, when she is constipated, aspirating, watching for skin breakdown and all the not so great things of caring for someone.

Yes you loose sleep now worrying about her but when she is home the worry will be intensified and you will be the one getting up at night to change a brief, turn her, adjust pillows.
think long and hard about bringing her home.
figure expenses now and when you will have to pay for a caregiver for a good portion of the day and possibly at night as well if she needs extra attention at that time.
And if you have children will they help, will they relieve you, but remember they have lives and families of their own and they will probably come first. (and I am sure your wife would want that)
Lots to think about, listen to your heart and to your head.

staceyb Aug 2017
Reggie, you are a Darling man and husband for even contemplating taking this on, and I so admire you, but please listen to the above posters comments, as it would be an almost impossible task for you to do so without a lot more help than just a few hours per day!

I would instead, continue doing as you are, and spend as much quality time with your wife as possible.

You are every woman do dream of a good and honorable husband, and know that I will be thinking of you in your efforts to make your wife's life as happy as you can! You are So Sweet! And Dont forget to Take Care of you too!

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pamzimmrrt Aug 2017
So if you have help Monday -Friday for a few hours,, how do you think things will go on the weekend? Her needs will still be the same, and so will yours. I know you want her with you, but I agree with the above. How will you feel if she gets worse at home? Good luck with this...

cdnreader Aug 2017
Dear Reggie,

It is admirable of you to want to take care of your wife, but as the others have said it is a massive undertaking.

I would use this time to just be by her side and let the professionals in hospice take care of the rest. Otherwise you will be worn down by the day to day stuff.

I had this illusion I could do it all as well, but it wasn't the best plan. In hindsight, I made a major mistake.

freqflyer Aug 2017
ReggieMasako, I can fully understand why you would wish to have your wife back home.

But it takes a village in the Hospice Home to take care of your wife. There are nurses, aides, cooks, housekeeping, cleaning crews, etc. all doing their jobs. And when you think about it the average age is around 35-40, and that is for a reason... they have the energy. They work 8 hours then go home for a peaceful night sleep, while the night shift takes over.

I found being in my 70's [I use to be a gym rat], if I lose just a couple hours of sleep I am so sleepy during the day and have no energy. Imagine losing sleep every night of the week... it will run you down very quickly.

You could hire professional caregivers, and I would recommend three 8-hour shifts, it would be very expensive as such caregivers are $30-$40/hour. That is the only way I could think it would be feasible to have your wife living back home.

It is better to be a "husband" instead of a "caregiver" for your wife, because you can't do both.

Countrymouse Aug 2017
Reggie, I was in my early fifties and very strong for my size when I cared for my mother at home after her disabling stroke for three months until her death; and I had support from professional aides most days. I honestly couldn't recommend that you attempt this. Work out a typical 24-hour schedule and you'll see the kind of workload you'd be taking on. It is unrelenting and exhausting.

Unless you can afford much, much more support - preferably from people staying in your home - I really don't think it would be doable.

Are there particular aspects of her care at the hospice that you're not happy with?

jeannegibbs Aug 2017
Do you / could you spend a lot of time at the hospice home with her? If she needs total care she is probably in the best place to get it. What is her mental status? Does she understand where she is? Is she asking to go home in some way (without being able to speak)? Does hospice have any notion whether the end is near? (Not that they have crystal balls, but they do have experience.)

My heart really goes out to you. This is such a sad ending to your life together. Can you afford 4-5 hours of help a day? Is your wife on Medicaid? If so, talk to her Medicaid case worker about what might be available if you bring her home.

If I were in her situation, and I recognized my husband and understood his relationship to me, I would want him around a lot. But I would also want to avoid as much pain as possible. I would want experienced people transferring me, bathing me, changing me, etc.

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