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Caregiver Perspective: What Resources Are Available If I’m Not Around Anymore?

About this time last week, I was experiencing discomfort in my abdomen. As the hours progressed, the pain got worse until eventually it was so intense that I was vomiting. Unable to sit up, I was lying on the floor moaning in pain with no access to help within reach. Fortunately, Lynn heard my moaning and used his emergency response button to call for help. The dispatcher was able to summons the rescue squad and contact my daughter to come to our house to stay with Lynn until his son could arrive to take over (she has a special needs child she had to get home to before her husband left for work).

As I lay on the floor in agony, what was going through my head? I need to find a break between vomiting to put a Foley catheter in Lynn or his bladder will become too distended. I waited for my next break after vomiting and while doubled over, collected catheter supplies and inserted it before I was unable to remain upright again. At that point, I was able to focus on me.

The story has a happy ending. My daughter arrived; I was taken by ambulance to the emergency department; my step-son and his wife took over care for Lynn; and my daughter made it home before her husband had to leave for work. Meanwhile, I’m at the hospital alone in my PJs waiting to hear what was wrong. Turns out I was having early symptoms of appendicitis. Fortunately, one of the measures my daughter took immediately was to ask for prayer from several people who were at church making Brunswick stew to sell. At about the same time they stopped to pray, my pain started to decrease. Then, because I am allergic to shell fish, I was put on a medication prep of prednisone to prepare me to take the dye for the CT scan. The prep took 13 hours during which time the prednisone reduced the swelling in my appendix and my white blood cells changed from being very high to back to normal. You can’t tell me prayer doesn’t work. I should have had surgery that night but instead, I was released to home the next day without any pain and more importantly, no surgery to recover from.

Once the immediate crisis was over; however, a new one began. This one was an emotional crisis. Reality hit our family about what would happen if I was no longer able to care for Lynn. Panic set in during the hours of waiting related to what they would have to do to if the burden of his care now had to be placed somewhere else—like on them. Let me say now, that our children love Lynn dearly and want what’s best for him but they are young and have lives of their own; lives where caring full time for someone totally disabled would be devastating for them. That fear brought us to the discussion of “what if” and “how to cope.” I’ve had others ask me about resources that might be available to help caregivers which is why I am sharing this story.

Emergency Planning for “In case I’m Not Here.”

First, I have an emergency folder on top of a filing cabinet. I had shown them years ago where it was but they forgot so now I’ve sent the information in the folder to them electronically so they can store it where they can easily find it. In this folder, I have included the following:

  • A list of all his medications (name, dose, and how often he takes them). I also listed how many pills he takes at what times and where they are located.
  • A list of all his doctors, their contact information, and what they treat.
  • Insurance information
  • Pharmacy information
  • A schedule of his activities from morning till night
  • Instructions for preparing liquid medications and instructions on preparing smoothies that have special dietary supplements added
  • Instructions on wound care and other treatments
  • Contact information for in-home care agencies

I explained that most likely if I was suddenly out of the picture, they would have to work out an arrangement to stay with him and provide his care for several days; however, their first calls should be to the two in-home care agencies and find out who might have someone available, for how many hours per day and at what cost. Insurance won’t pay for his care; my income from working is too high and we have too many assets so we would likely have to wipe out our savings and perhaps take out a loan but if I was going to be unavailable for a long time, they should try to find a live-in caregiver. A live in caregiver would likely be less expensive than a facility since room and board would be provided to them and that should help off-set cost.

If they could not find a caregiver to come to our house for a short period of time, his doctor might be able to get him admitted to a care facility on a temporary basis. Medicare might pay for a short amount of time as respite but I’m not sure what might apply; we would have to wait for the particular circumstances to determine that. We can’t get Medicaid until our assets are used up (which might not take long if we have to hire someone full time) but he does have inpatient Medicare and my personal insurance for supplement. (Of course, my insurance won’t be there to help if I’m dead or if I lose my job.)

Not to sound morbid, but if whatever was taking me out of the picture as his caregiver actually killed me, then problem solved. I’ve made sure that I have enough life insurance to provide care for Lynn after my death. The kids would have enough resources to find a nice care facility for him and all they would have to do is check in on him periodically. However, if I survived and we both needed care, that’s a different story. At that point, we would quickly dwindle our resources down to nothing and both would be placed in a care facility that took Medicare. I have long term care insurance to use also but was not able to get any for Lynn because his MS was pre-existing.

Unfortunately, the reality is that resources for a married, middle-class family are almost non-existent. So, I do my best to plan for the future but I know that even my best efforts will not likely be enough. I just pray that if it’s a matter of me becoming disabled or dying while Lynn is still alive, I hope that I die. Otherwise, I can’t ensure his survival because what we have available for his care just won’t be enough for the two of us. How depressing is that????

For now, I’m well, and we are fortunate that I’m still able to provide for his care. The power of prayer has brought us through another crisis for which I am very thankful. The rest, I’ll deal with later.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.


  • rmdanielsom
    3 years ago


    My sympathies on your appendicitus attack. I read your article to see what solutions you and your husband had come up with.

    I have a slightly different view on a somewhat similar situation.

    My PPMS has left me with limited use of only my right hand and arm. It has also put my husband and I in bankruptcy. It has also precipitated cancer in my primary care partner, my husband.

    Jim had to take an early retirement to care for me, so as a former middle income couple I know full well what it is like to “make too much money” (SSDI and SSA with no savings, no long term care insurance) to qualify for state or federal assistance in paying for qualified care for either of us, either in a facility or home care.

    Odds are really good that I am going to outlive my Jim.

    Should that happen, then the second chapter of the horror story that is MS begins.

    I don’t know if your Lynn feels this way, but, my hope, my prayer, is that we pass on together. We are two souls with one heart.

    You have been a great advocate for your husband. There is a lot of concern/advocacy about access to doctors, DMTs, DMEs, knowledge and social support for people with MS and their care partners.

    There is a deafening silence about how to care for people with MS who “make too much money” to qualify for various programs, but not enough money to pay for the care they need when the care partner no longer exists.

    This is a need that the MS community needs to focus on and advocate for in our various state legislatures, at the federal level and with our doctors.

    Your article goes a long way towards highlighting that need. Thank you.

  • Donna Steigleder moderator author
    3 years ago

    I am so sorry to hear about Jim. Lynn has told me many times that should I die first, he will be close behind. He knows that even with my life insurance to help when I die that hiring someone to stay with him around the clock would wipe it out soon and he just doesn’t want to live without me any. I do hope this article does bring the need to light. People tell me all the time, “You need to get some help.” I try to explain why that’s impossible and it’s like they just can’t believe it. They always comment, “but there has to be a way.” However, as you know, there isn’t. My heart reaches out to you and Jim. Your situation now will likely be my situation later and truthfully, it scares me to death. Best wishes and may God’s mercy be with you both.

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