Questions

[faithandlove]

I am progressing fast, and my CALS is my husband who is disabled and needs hip replacement surgery. Currently, he can still help me.

I have a lady who comes Mon-Fri for 1 hour to help get me cleaned up and dressed.

This is what is bothering me - if my husband gets the surgery, how will he be taken care of and how will I be taken care of?

Do I increase the hours for a caregiver? I do have long-term care insurance and a Respite grant. Should I be placed into a nursing home?

My daughter is working full-time and has three small children, and my son also works fill-time and has one son. His wife is currently going to the police academy. They want to help, but they are overwhelmed already.

If I get help at home, I feel invaded. I always did everything, and I'm not good at delegating. I feel like I should be the hostess in my home.

Please let me know what you have done when the ALS progressed.

I got used to the 1 hour of care, but I cannot imagine full-time.

Thanks,
Deb

 

[KimT]

Deb, Please get the care. Do it for your husband. Get someone who can do light housekeeping and other things for you as well as take care of your personal needs. They need to be working while they are there.

 

[affected]

I would suggest maybe if you can go into a facility at the very beginning your husband may be better able to get through the initial healing. They do mobilise hip replacement patients very quickly, but his abilities as you know will be very limited.

Then if you can come home and have as much help as you can afford so that he is able to just be with you as your husband but not risking himself by any of the harder care tasks.

I know it is hard, but think of it as your care being a full time job you are hiring someone for, rather than thinking of it as someone coming into your home and doing what you feel you should do.

What a gift this would be to your husband - to allow him to feel he can do something about his own pain and health! I hope you can figure out the right mix to allow you both to feel comfortable enough with the whole situation.

 

[lgelb]

Deb, if you haven't, check your long-term care insurance as to how/what it pays for (1) in-home and (2) facility care, so you know what you are dealing with. The benefit level can be quite different. Also, know whether you have to use an agency, can hire direct, etc. for maximum benefit.

I do understand what you are saying about your emotional needs and your own home. Only you know how much of a tradeoff you are willing to make against your physical needs. But perhaps the calculus is different when considering your husband.

Best,
Laurie

 

[Jhill]

We had hospice care, which can be used for any length of time, not just towards the end of the illness.

They offered respite care, in hospital, for any reason, including giving the caregiver a break. The first week was at no charge and after that it was very reasonable.

Hugs to you,
Joan

 

[chally]

Ditto Joan, hospice care works for me. They are into making us comfortable and if need be for any reason I can go in to respise care. Not a bad deal. This whole nightmare is about letting things go, quite a lesson for me! Love ya chally