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 summon 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 them before I was unable to remain upright again. At that point, I was able to focus on myself.
The story has a happy ending. My daughter arrived; I was taken by ambulance to the emergency department; my stepson 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 asking for prayer from several people 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 shellfish, 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 the prednisone reduced the swelling in my appendix, and my white blood cells changed from very high to normal. You can’t tell me prayer doesn’t work. I should have had surgery that night, but instead, I was released 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 could no longer care for Lynn. Panic set in during the hours of waiting related to what they would have to do 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 disabled would be devastating for them. That fear made us discuss “what if” and “how to cope.” Others ask me about resources available to help caregivers, so 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:
- I have included a list of all his medications (name, dose, and how often he takes them), as well as the number of 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 to 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, which should help offset costs.
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 temporarily. Medicare might pay for a short time as a 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 supplements. (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 killed me, then the problem was 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 I 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 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 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. I’ll deal with the rest later.
This article originally appeared on Multiplesclerosis.Net by Health-Union, LLC, and has been reposted with permission.
