Skip to Accessibility Tools Skip to Content Skip to Footer
Woman cycling surrounded my icons of healthcare

MS: No Exemption From Life and Responsibilities

Wow! In looking back at my past articles, it appears that I’ve been absent for about a year. How the heck did THAT happen?

It’s not like my MS disappeared. On the contrary, it’s still here. My MS didn’t suddenly get so bad that I couldn’t go online. Actually, it’s doing okay and remains stable. But, I did get busy taking care of business for other people in my life, and that took up most of my time and energy.

Not alone, but it sure feels like it!

On top of living with multiple sclerosis and rheumatoid arthritis, I am a family caregiver.

Nobody prepares you to be a caregiver. There is no training manual or courses you can take in college, at least not in the music department. Nobody really tells you what it’s going to be like to care for parents as they age and experience unexpected twists and turns in their own lives.

Caregivers need support

Perhaps there should be a 12-step support program designed just for caregivers. “Hi, my name is Lisa and I’m an unpaid family caregiver. I’m here because caregiving has taken over my life and I acknowledge that I need to find me again.”

Attending a meeting for family caregivers

Actually, I did attend one meeting for family members held at the assisted living facility in which my mother-in-law lives. It was simultaneously encouraging and discouraging. My husband and I were the youngest people in the room (other than the social worker who led the meting) when we convened in the facility library. As we introduced ourselves and summarized our story, other attendees gave knowing nods and affirmative glances.

Finally, we were not alone in our experiences. Others had been in our shoes and understood. Although I cried a lot out of pent-up frustrations and exhaustion, one thing that I took away from the meeting was that in the scheme of things, our situation wasn’t nearly as bad as it could be.

Connecting with other people

This meeting reminded me of how people in the MS community are there for each other. Whether you are newly diagnosed or have been living with MS for many years, support and camaraderie come with connecting with other people.

Ready or not, here you go!

Two and a half years ago, my mother-in-law had knee replacement surgery. Her early recovery was going well as Rob and I basically took turns living with her to attend to her daily needs and safety at home. In hindsight, she should have stayed in the rehabilitation facility for longer than 7 days after the original surgery. But she was anxious to get back home and for life to go back to normal.

Unfortunately, my mother-in-law had an accident at home while Rob and I were away briefly that sent her back to the hospital for emergency surgery. Subsequently, she developed a serious infection, ended up having ten surgeries over the course of four months, and was transferred back and forth between the hospital and rehabilitation facility during that time. She never returned home, but did keep her leg.

Taking care of her home and belongings

In addition to taking care of her physical and emotional needs, my husband and I had to take care of her home and belongings. It took well over a year just to sort through all of the paper, official documents, personal belongings, and household goods in my mother-in-law’s house. While we disposed of a lot of material — I actually broke a paper shredder — we still have a lot of items that got put into storage bins to be sorted later. Those bins are either in my basement now or in a commercial storage unit.

Eventually, the house was organized and cleared, repairs and updates completed, and put up for sale. I even refurbished the 37-year old wood stove which turned out beautifully. Twenty-seven months after the original knee replacement surgery, my mother-in-law’s house was sold to a lovely couple.

Climbing out of the muck

It’s easy to become totally consumed with family responsibilities when there is a huge job to be done. During the past 2+ years, it was really difficult to focus on my own needs. One way I did stay in touch with myself was through physical activity.

Hard work

I’m definitely not a huge exercise buff, but I have learned to enjoy cycling. There’s something exhilarating about rushing down the other side of a hill you’ve just worked really hard to climb. By the way, climbing is climbing no matter if you’re pedaling your bike in its lowest gears, if you’re walking your bike up the hill, or if you are working hard to sell a house. All of it is hard work.

But I wanted to share a victory I experienced this summer. I did something special with cycling that I had wanted to do for a while. It was a huge accomplishment for me. At the BikeMS Chesapeake Challenge ride, I rode more miles in one day than the number of years in my age. That was super cool!

Focus on you

While your challenge may not be family caregiving like mine has been, it is important to stay in touch with yourself while you are stuck in the muck of life. What do you do to take care of yourself when life seems to get in your way? When MS gets in the way? Or when you seem to lose your way?

Please share your favorite self-affirming activities. I’d love to hear how you cope and refocus on your own needs.

Thanks for reading and for sharing!

Lisa

My MS Articles on MultipleSclerosis.net

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

Comments

  • potter
    3 weeks ago

    My husband and I are going through the big move to a senior village right now with his mother who is 96 years old. She should have done this six years ago but wanted to die in her sleep. She finally had a problem that prevented her from getting out of bed. It took a couple of months before she decided to move. She only took her purse and a set of sheets. We found out that she really hadn’t thrown much away in the last fifty years. For the last month we have been sorting through cabinets trying to find all of the items she is requesting. Her house had a lot of cabinets and trunks that were stuffed. Her house was nice and clean little did we know that it was about to explode with paper work, crystal and photographs. We had some help at first but they abandoned the project. A estate company took it over and the house has been sold. We still have a few things to do in her overfilled apartment. Basically we are finished but pretty worn out. My poor husband had to move most of the boxes, I was good at sorting and tossing. My husbands first year of retirement has been a disaster. Hoping the next year will be better. Potter

  • Janus Galante moderator
    3 weeks ago

    Please let me encourage you Potter, you’re not alone.

    Your situation at hand is reminiscent of my friend’s experience with her father. After having to move him in to a nursing home a few years ago, (he’s still there) their dining room is now full of papers and paperwork that has to be dealt with.

    As for us, it looks as if we will be leaving around Christmas for a 24 hour road trip in order to help get my mother in law settled in to her new place in assisted living.

    It seems as if whenever something like this happens, there are always more surprises that need addressing!

    I’ll be thinking of you all and hoping with you that next year is better!

    xxxx’s Janus

  • Lisa Emrich moderator author
    3 weeks ago

    Potter,

    My heart and understanding go out to you. During this process of handling my MIL’s physical belongings and home while also attending to her other needs and desires (like meeting her requests for specific items that had already been moved, packed, whatever, from the house), I have questioned whether it is easier to deal with all this “stuff” after someone has passed away. It did take about 1.5 years to handle the physical belongings and get the house ready to sell. We’ve still got too many boxes in storage containing things that my MIL needs to sort herself. It’s not easy.

    I’m sorry that you’ve had to deal with this and that it had consumed your husband’s first year of retirement. I hope that eventually you’ll both be able to feel a bit of relief and fully appreciate yourselves and each other for having worked through this together.

    Best wishes, Lisa

  • Kaos
    3 weeks ago

    Still figuring out my way…

  • Lisa Emrich moderator author
    3 weeks ago

    Hi Kaos,

    The muck of life is really challenging sometimes. Please know that I hear you and want to offer confirmation that you are not alone.

    Best, Lisa

  • Kim Dolce moderator
    4 weeks ago

    Lisa, so glad to see you writing again!

    My heart goes out to you for the extra helping of stress that’s been on your plate for a long while. When our parents are winding down or experiencing their final illnesses, we find our own way through to help and comfort them. I’m sure your MIL feels comforted by all that you and Rob are giving. Please update us when you can. I hope it helps you to write about all of this and get the love back that you’ve been giving here. We miss and care about you!

  • Lisa Emrich moderator author
    3 weeks ago

    Thank you, Kim!

    I’ve missed being part of the community and interacting with that vital exchange of love and support that is so freely given. It’s been isolating to deal with so much, particularly when not having anticipated it. Now I’m trying to find my way through handling my own mother’s death earlier this year and the fall out of that. I’m amazed at just how much Christmas decoration she purchased and never used that is tucked away in every corner of the basement. The combined experience with both mothers and their belongings makes me want to purge everything. It’s certainly not an easy process.

    When I’m able to find words to talk about more of this, I hope that share. One thing I’m very thankful for is that my MS has behaved itself during all of this.

    Lisa

  • Janus Galante moderator
    4 weeks ago

    Hi Lisa,
    boy did this bring back some memories. Some very sad ones at that. Mostly of my dad (who passed away nearly 2 years ago now.) who was trying his hardest, to care for my mom who had dementia.
    I remember how very hard it was on him to be her primary caregiver. He rarely would let anyone else help because of his concern that she would get “nasty” with them. My dad and I went to a local support group for care givers of dementia of whom there were exactly 3 people. The leader of the “group” my dad and I. It amazed me because there is an extremely
    high population of people with dementia and as a result, caregivers of such. It was very disheartening.

    I apologize, as I realize that my ramblings have gone a tad off topic, but your statement of “connecting with other people” is absolutely vital. It is so important that we are here for one another to help lift each other out of the muck of life that we all wade through.
    Our opinions on every topic may differ as will our individual experiences. The important thing is encouraging one another, which by the way, turns out to be a wonderful coping mechanism for me!
    P.S. your article was well worth waiting a year for! Janus

  • Lisa Emrich moderator author
    3 weeks ago

    Janus,

    Thank you so much for the reaffirming comments. I’m sorry for your loss. I don’t think that I mentioned above that literally the week after we got my MIL’s house on the market (after almost 2 years of helping her through 10 surgeries, hospital stays, rehab stays, and finally moving into assisted living and getting her house ready to sell), my mother died. I was her caregiver at home. I’m still reeling from that and dealing with her business and belongings now. The impact of this experience is something I didn’t fully appreciate before going through it personally. Thank you for offering encouragement and kind words.

  • Poll