Reeve Foundation Paralysis Community

I have a good friend who is a C4-C5 quad in his mid 50's. He lives at home with his wife who is also his soul caregiver. My friend relies on his wife for the completion of all his daily routines (dressing, bowel & bladder etc.) but is able to spend long periods alone given the proper set-up. Recently, my friend's wife has been diagnosed with stage 4 breast cancer. There is the very real possibility that her death will occur first. My friend is terrified and would like to plan for his future.

Has anyone here experienced a similar situation or maybe have suggestions on how he might set in place some backup or alternative care?  (He does not feel comfortable relying on members of his extended family).

Thanks to everyone for your care and support.

a-lo

 

 

First of all, we never recommend that spouses be the sole caregiver for anyone if at all possible. It difficult for most people to maintain a marriage (esp. any sexual relationship) with such an arrangement, and burn-out is also a definite risk. Many studies have shown that full-time caregivers risk impairment of their health, and cancer can be related to high life stresses. It is unfortunate that they have not made other plans prior to her current health crisis.

I can use my own family as an example. My mother, who has had MS for 30 years, needs assistance for all her personal care and only has functional use of one arm. She is now 80 years old. She uses a power wheelchair and a ceiling track lift for transfers. Up until 7 years ago my father (who was 6 years older than her) was helping with all her transfers, some dressing and bathing, but she was able to do her own bowel and bladder care. My sister and I had been trying to get my father to consider outside help for many years, but he had resisted based on the costs, although they did have the resources. He was tired and cranky all the time, and it negatively impacted their relationship. After my mother no longer was able to do her own caths, and had a health crisis resulting in a hospital stay and several weeks in a nursing home, we were able to convince them to hire attendants part-time. It made all the difference in the world. After one year, one of her attendants moved in (to my old bedroom) and became a live-in, but still part-time caregiver (with another outside job). Last year they added two more part-time attendants who helped during the first attendant's days off and when she was at her other job. We hired privately, always paid cash, and never used an agency. My father continued to manage their personal finances, do the cooking and yard work, and the shopping and driving.

This fall my father died from a previously undetected cancer. He was only ill for 6 weeks. My sister and I provided his care, but also worked on setting things up so my mother can remain in her own home as she wanted. I hired an additional attendant (Craig's List was a great resource), trained them, and arranged for the previous attendants to change and increase some of their hours. Of course we do reference and background checks. My mother is now in her home, and alone two times daily for about 2.5 hours each time. We have her set up with an emergency call system for those times, and she is either on her computer or watching TV at those times. My sister & bro-in-law took on the finances, we added a house cleaner, and a gardner, and I coordinate the attendant schedules. Both of us live many miles from my mother, but it is working.

It would be best for your friend to get help in NOW so that she can train them and make sure they will be satisfactory. I hope that they have made financial arrangements appropriately (living trust or special needs trust as appropriate to make sure that their finances are in order NOW) and that they will be able to call upon family to help for those issues that would not be appropriate for an attendant. It can be done.

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Moderator

I agree with what FF has said.  As a caregiver spouse to a C3-C4 quad, it is a very difficult job which is both mentally and physically taxing.  I would suggest that they get some help right now.  My thought is that his wife deserves some time of her own to fight this cancer.  She needs the relief now plus it will give the husband a chance to get used to managing caregivers.  I am sure that your friend is very worried about his care, but I worry about his wife too.  She needs a break and needs it right now.  She shouldn’t be caring for anyone right now but herself.    

 

We do hire outside caregivers.  We have some through an agency because my husband had extended care coverage through his employment that reimburses a % of the home care up to a cap.  Agency help is pretty expensive; $37 - $40/ hour for a LPN or RN.  In many cases with an agency, you are forced to use skilled providers because of state laws.  In Indiana, only a LPN or RN can perform bowel care and cath.  Additionally my husband has a trach which requires suctioning which is also a skilled event.  So when using an agency, we can only get RN or LPNs.  We also privately hire some.  We do not pay in cash but have set up a little payroll system and file all the proper paperwork with both the state and IRS, withhold taxes and provide our employees with W-2s.  It is a bit more of a hassle but can keep you out of a lot of trouble is someone reports you. 

 

In your friend’s case, it sounds like he mainly needs morning and evening care.  I would concentrate on hiring some part-time help for those times.  In the current economic climate, I think it is a little easier trying to find this kind of help.  Many people are looking to supplement their income or are out of work altogether.  I know you say he is uncomfortable with extended family doing this, but sometimes you have to get comfortable with things you hadn’t wanted in the past.  In this situation, I think he needs a back up and quick.  If family is willing, it certainly wouldn’t hurt to train them now.  I would encourage him to reconsider his thought about his family.  What if the wife ends up in the hospital and he needs help immediately, what will he do?  He doesn't want this to force him into a nursing home.  It takes time to hire.  Plus like FF suggests, make sure to take the time to do the background checks.  It could save them a nightmare in the future.  This couple is in a very vulnerable situation.  They are ripe for being taken advantage of.

 

I hope they can find help soon for both your friend’s sake that his wife too.

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Trish

"Life isn't about waiting for the storm to pass...it's learning to dance in the rain."

Thanks FF & Trish for the information. I agree my friend and his wife need some outside care-giving support ASAP. I will see him at our next SCI support group meeting and plan to get some time alone with him to encourage this discussion with his wife. I'm also going to contact the hospital social worker so he can have a better idea of available resources and services in our area.

thanks for showing me that despite being VERY challenging this is a workable situation.

amanda