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I can't believe I found this board, I stumbled upon it by accident, and I've read as much as I can

Your stories have torn my heart, and most have hit close too home, I'm at a point where I don't know where to turn...being a full time caregiver in the prime of my life, is the hardest thing I've ever done....and I always feel guilty when I long for the days of freedom and the life we used to have

It's been 5 years now (my husband is a heart/kidney patient, 5 day a week dialysis, and needs constant care...he is 50 and I am 47) of caring for him, at the start, he was ok to drive and take care of himself a bit, but now, he can barely walk to the bathroom...it's not that I mind caring for him, I would do it for the next 100 years if need be, its just that sometimes I feel that no one understands what it means, and what it takes, to be a full time caregiver...people keep heaping more things on my already overflowing plate.

I don't expect family members to help out, I realize they have their busy lives, but like tonight, my mother in law called and I was taking a 30 minute nap, and she was dumbfounded that I had the nerve to nap during the day!
(I was up all night with hubby, he had a bad night)
Aside from the no sleeping thing, I have had a broken knee cap for over a year that needs fixing, but I can't be in the hospital over night, to have it fixed, so the pain is crazy, and it makes me very cranky.

our daughter helps as best she can, but she is a full time college student, and I want school to come first

I guess my question is, how would a full time caregiver, be able to have surgery that requires them to be away from the house for a day or two? Medicare will not pay for a nurse to be here 24 hours a day (and I sure can't afford it, I am not able to work any longer since caring for him)

My husband is uncomfortable with the idea of having our daughter care for him for an entire day, as he needs help in the bathroom, and I fully understand him not wanting her to see him like that.

Again, I want to thank everyone for the stories they have shared, I can't begin to tell you how much it means to me that I am not alone (even tho it breaks my heart to know I am not the only one in this situation)
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Hello pidge0605

Welcome... Your caregiving is one of the more difficult situations..more than the average... You seem to have it all in the right perspective. But you do need breaks. And, unfortunately you are right... no one understands unless they are or have been a caregiver.. there's no other way to put it.

There are volnteer programs.. Faith In Action.

Check to see if there is a program in your area by typing in your zip code at this link:

http://www.fianationalnetwork....find-fia-program.cfm

It would be nice to have friendly, caring people come in to spend time with your husband and assist.

As for the surgery, if you are his primary caregiver, then it is up to you to make sure your own health is optimal so that you can continue to care for him properly.

My sense is that your husband is capable of having a conversation with his family. While weak, he too, along with you could have a family meeting.. and reach out for their assistance. If they are unable to, then perhaps it would be necessary to hire someone professionally to care for him for a few days while you get your surgery.

Will you need time to recoup? Will you need to go into rehab? Will you need physical therapy? If therapy is needed, could they come to your home? These are questions you need answers to.. and they are needed to present to the family members as well. If you need help financially to do this then you and your husband need to ask for it...

There are also respite programs that might be able to take hubby for a day or two while you are having the surgery.. but again, it depends on your location and what is available.

This is a safe haven... please keep us posted.. blessings

gail
Hi, pidge0605.

I agree with Gail that you do need some kind of assistance to get through this. Do some homework about your procedure and rehab needs. Check with the social worker at the hospital where you will be. They would know what resources are available and can help you negotiate care for both of you.

Also check out local assisted living and long term care facilities for short term respite care. Some places give good care for about the same price as an upscale hotel stay.

I count my blessings every day that with all our respective health issues, my DH can still pretty much do his own daily living tasks. But even given all that, he would have a hard time of it if he were alone for more than overnight.

I'm glad you found us. Please continue to post and let us know how you are doing.

Hugs,
Barb
Thank you for the replies!
I put my zip in the faith in action, but all there is in my area is care for the elderly...but that is some amazing organization!

I'm going to the doctors next week, and hopefully there will not be that much recoup time (that is a great idea, to ask if therapy can come to the house)
I have a knee replacement, and the knee cap is broken (it's my real knee cap, for some reason when they replaced the knee they left my knee cap and now it's broken)
I'm hoping this surgery will be as easy as the replacement, as I was home the next day.

I am allowed to take narcotic pain meds, but they make me sleepy, so during the day, I can't take them as I need to drive DH back and forth to dialysis (since they upped him to 5x a week, we had to go to a different center which is a much longer drive, so narcotics and driving don't mix, LOL)

It's the guilt that kills me, here I am complaining about such a small problem, and DH retains so much fluid, you can actually watch the skin on his legs crack open and bleed, he needs numerous sugeries, but they won't do them, as he can not be put under due to the weak heart (his injection rate is down to 15%)

I can't tell you how good it feels to put these feelings down in writing...since i started reading this board yesterday, I feel so different about things, more in control
Hello Pidge,

I would prevail on the FIA program in your area to help you out since you and your husband fall between the cracks.. they are able to be flexible.. you will have to really push for what you want in order to get assistance from the system, etc. It isn't an easy task but you need to have your surgery as well... I will contact them if you need me to... just let me know...

I am glad to hear you are feeling better in terms of having others to share with... it goes a long way in our healing processes... take care.. keep us posted

gail

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