Sometimes, I forget our life’s impact on the rest of our family. Today, that impact is more evident as I wait for our three children and their spouses to come over to “talk about the future.” I have been having just such a conversation with my brothers and parents but hadn’t thought much about needing to have that conversation with my own children. However, they have requested an opportunity to discuss the “what ifs” that can occur either as a result of my disability or my death.
As a result of secondary progressive MS, Lynn can no longer provide any self-care. He relies on me for everything from feeding to assistance with going to the bathroom. It’s a lot of work, but our routine works well for us. However, what if I suddenly could not provide that care? What would happen to Lynn? And what if the “what if” was not my death but my disability, and not only would total care be needed for Lynn but also for me? The obvious answer is that our children must figure out what to do with us. Therefore, I appreciate their desire to have this conversation with us today.
All three of our children are in their late twenties or early thirties. Two have just been married for two years or less, and the other one has been married longer but has a young child with special needs. All are in those early years of learning to make it independently and struggling in today’s economy. I also know that each of them would do anything for us. They are very good about helping out, and they want the very best for us, but realistically, if something happened to me so that I could no longer care for Lynn, there would certainly be an impact on them and me.
Financially
With any illness or injury, there are mounting bills to pay. If we were both dead and had outstanding debt that was not paid by life insurance, the bills would go to our heirs. That doesn’t seem fair, but that’s how it is, if I’m not mistaken. Therefore, to protect my family, I have bought supplemental life insurance that should be enough between what my company provides and the additional I carry to pay my last expenses and provide the ability to care for Lynn. I can keep this insurance as long as I’m employed, but I’m also 57 years old now, so I may only have that option for another 10 years if that long. Hopefully, I’ll be able to afford to carry that as independent coverage afterward, though financially, I think they will be okay.
Providing Care
Money is one thing, but who will take us in? None of them have houses, allowing Lynn to move in with all his equipment and supplies. Therefore, they would either have to move into our house or move Lynn into an assistive living arrangement (or more likely a long term care facility). I know that none of them want to do that, but sometimes there is no choice. I have some Long Term Care for me to help pay for a place for me to go, but Lynn was in the process of being diagnosed with MS when that option became available with my company, so he was turned down for coverage. Would they be able to afford a long-term care option, or would someone have to quit their job to stay home to care for him? And, if that happened, could they afford for one of them not to work?
Sharing the Load and Responsibility
Then, finally, how do they decide who does what, and is there a way to divide the responsibilities fairly? My daughter is a nurse, so the burden of care might fall on her. However, Lynn’s son has always been very active in providing assistance to him, so would he take Lynn and my daughter take me? My son is willing but not as experienced in personal care, but he’s great at helping keep up the house repairs and doing the “heavy lifting” activities. They all want to share, but it must also be fairly divided into tasks and duties so none of them are overburdened. We are not their only parents; each has in-laws and another parent/step-parent to consider.
There’s a lot to consider, and it’s important to not only have this conversation but also keep it going as things change in the future. It’s not fair to “protect” our children from the possibility of becoming responsible for us in the future when it’s inevitable that, at some point, they will likely be called upon to make decisions with or for us.
It’s almost time for them all to arrive; let me go pull my “in case of emergency” folder.
This article originally appeared on Multiplesclerosis.Net by Health-Union, LLC, and has been reposted with permission.
