Planning for the Future with Our Children

Sometimes I forget the impact our life has 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 really 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 we have a routine that works for us pretty well. 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 to that is that our children would have to figure out what to do with us.  Therefore, I understand and appreciate their desire to have this conversation with us today.

All three of our children are in their late twenties, early thirties. Two of them have just been married 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 on their own and struggling to do so 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 as well as 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 if I’m not mistaken, that’s how it is. 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 afterwards though; so financially, I think they will be okay.

Providing Care

Money is one thing but who is going to be responsible for taking us in?  None of them have houses that would allow Lynn to move in along 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 in the matter.  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 to 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 doing any of the 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 also needs to all be fairly divided into tasks and duties so none of them are overburdened.  Plus we are not their only parents; each has in-laws and another parent/step-parent to consider as well.

There’s a lot to consider and it’s important to not only have this conversation but to 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.

Almost time now for them all to arrive; let me go pull my “in case of emergency” folder.

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Comments

View Comments (6)
  • mario lobo
    4 years ago

    Donna,
    Once again you’ve brought up important issues that either are, or should be, on the radar of MS care givers. Due to the progression of my wife’s MS, she couldn’t remain at home if I were to pass away or become incapacitated. Surely, someone else *could* do what I do to take care of her. It’s just that I don’t have children, siblings, or inlaws with the skill set, mindset, situation or inclination to completely disrupt their lives to the degree that caring for my wife would entail. So I’ve gone the route of providing a thorough set of instructions that includes identifying the specific institution best suited for her, in the event that I can no no longer take care of her. I’m fortunate to live near a city where there’s a top notch facility that specializes in caring for people with MS and other neurological diseases and conditions. All we can do is optimize our situations. Keep up the good work on all fronts, Donna.
    Mario

  • Donna Steigleder moderator author
    4 years ago

    Thanks Mario,
    That’s an excellent suggestion by the way. I have instructions for daily care but haven’t thought to take it to the next level of who will do what to provide further care after I’m gone. I’ll have to add that to my list.

  • Michael Birdwell
    4 years ago

    I am in this situation with my father. I am the one with M/S and he has alheimers. My Doctors tell me I can’t provide him with assistance because of the stress involved. I have one other brother but he is still working in Michigan. I am retired and moved in 2006 to Tn. to be closer to my parents. Unfortunately my M/S is progressing since the move. My family can’t understand why I can’t move in with my Dad. We do not get along and have never really been close. I was my Mother’s son and my brother was Dad’s. So, I guess I am in your shoes but reverse of your situation.

  • Donna Steigleder moderator author
    4 years ago

    I am so sorry for the difficult situation you face. I’ve seen myself that others don’t always see the full scope of how caregiving affects an individual’s health and therefore do not offer the understanding and support we need at such times.

  • Dan
    4 years ago

    Debt doesn’t transfer across generations.

    Debt must be settled by your “estate”.

  • Donna Steigleder moderator author
    4 years ago

    Thanks for clarifying that.

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