Dear Nancy,
I suffer from multiple sclerosis. At 46, I spend most of my day in bed. I went from a cane to a walker to a scooter. Sadly, I have a hard time doing anything on my own. I need help getting to the bathroom and taking showers. I can no longer drive. As a result, I’ve lost any real sense of independence I had.
My kids are now adults living their own lives. I’m grateful that they grew up before the disease started affecting me, but I’m still their mom, and it’s heartbreaking: I can’t make a special dinner for them or join them for an outing without a ton of help. I mostly feel like a burden to my family. I lie awake, afraid of what will happen in the future. Will I get so bad that I need to go to assisted living? Would anyone come to visit me?
When I’m on social media, I don’t tell people how bad things are. I can almost interact as a normal person. For those closest to me, there’s no denying what is coming. Although they don’t say anything, they wonder how bad it will get.
Not so long ago, I was a vibrant person, full of life. I took my kids on hiking trips, drove them to sporting events, and planned birthday celebrations. I can’t seem to find the strength to move forward knowing that things will get worse.
Signed, Feeling Like a Burden Dear Feeling Like a Burden,
I’m sure that even before your diagnosis you put the needs of others first. You will always be a great mom in your children’s eyes. But it may be time to focus on the ways you can be proactive in taking control over your life; especially the things that trouble you about your future.
If your disease progresses and an assisted living facility is the best choice, there are several options, and you have a say about the type of facility, where, and when. For example, you could live in a group home, or you and your husband could move to an apartment designed to accommodate disabilities. The move might give you an opportunity to help older residents and restore the sense of purpose you feel is lost.
Being more forthcoming with your disability on social media could strengthen your connections, helping others to feel comfortable sharing their own struggles.
If you choose to remain at home, you can hire a home health nurse, caregiver, or a volunteer who will come in and help. With support, you might find that you could turn your bedroom into an office and do a part-time remote job; you could host a small support group for others who struggle with a disability.
There are ways for those of us who deal with limitations to contribute. It’s important that we think beyond our regrets and fears, looking at the future with a sense of ownership over the decisions and the possibilities.
Sincerely, Nancy