Caregiver Perspective: Feeling Alone or Maybe Just Left Out

I always have guilt feelings when I write about any negative emotions I feel in being a caregiver but the fact is, I have them and I expect most other caregivers have them as well. It doesn’t mean we don’t love the person we care for but it means that providing care is not always a piece of cake. If you’re a parent, it’s similar to loving your kids but being angry at them for scratching the car and sometimes seriously thinking of selling them to the lowest bidder. You would NEVER actually do it and would miss them beyond words if they were not around but the fantasy…well, sometimes the fantasy helps to get past the moment.

Feeling lonely is like that. I’m actually rarely alone which is one of the reasons why I feel lonely. I am responsible for Lynn 24/7/365; just like a parent of a small child. Whereas children grow up and leave home, adults with disabilities do not unless they become too much for the caregiver to handle (and that’s not something any of us want to have happen). So, you would think having Lynn with me all the time for companionship, I wouldn’t be lonely but I am at times.

Lynn and I have a great relationship. We enjoy many of the same things (though that was not always the case). It’s funny how much we are now alike. We often are thinking the same thing after seeing a commercial or something on TV and may even speak it out loud at the same time.  We’re close. But being close to one person is not enough, I’ve found.

My loneliness comes from a feeling of being left out. I’m fortunate in that I’m a very strong introvert. I am comfortable being with myself and I don’t thrive in crowds but I do sometimes miss being included. Family and friends will come up with an idea, get excited about it and make plans to go. They will invite me but I have to say no. I can’t just pack up and go on a whim. Lynn can’t be left alone for long. He can’t tolerate much activity due to fatigue and finding someone to stay with him is very difficult. Most of the people who stay with Lynn are family so if family is planning an outing, it likely means I (we) can’t go. Either he can’t tolerate the trip, the location is not accessible, or I can’t find a sitter. Not just anyone feels comfortable staying with Lynn (even though he’s very easy to assist) but it’s intimidating because he can’t help himself. People are afraid they’ll do something wrong. Chances are they will but what they don’t understand is “that’s no big deal.” I scratch him, spill food on him, and pinch one place while adjusting another all the time. He won’t break when that happens and he won’t be offended. We’re used to it but someone who isn’t, really feels bad when it happens. Therefore, that fear factor plus the fact that people make their own plans rather than sitting at home waiting for me to call prevents us from having someone available to come stay with him. All that adds up to both of us being left out of a lot of things. When I have to say, “No,” I feel sad and lonely and I start feeling sorry for myself that I can’t do what others do.

Another way I feel lonely is in shouldering burdens alone. Lynn doesn’t like me to do that but the reality is that he doesn’t handle stress well. If he gets worked up over something, his fatigue and spasticity gets worse and my job is more difficult. Therefore, I hold a lot back until I have a possible solution. That is especially true if I’m concerned about his health. If I start being concerned about his breathing or his skin and I mention it to him, he becomes obsessed with that concern as well so I then also have to help him to calm down. However, I need someone I can talk to during those times.

When people at work are laughing and sharing stories while I am on a conference call with them I feel left out. I want to be in on the joke, too. We have a lot of new employees in our department so when I come into the office I feel like a stranger. I don’t like that. At family dinners, I feed Lynn first which means I eat my own food when everyone else has finished. If the group decides to play a game, I have to sit out because I know that Lynn will need me to cath him or put him to bed or help him get something to drink or will have some other need. I have to be on the outside looking in. I would love to be able to go see my grandson play T-ball but I can’t. Lynn can’t tolerate the heat and his wheelchair can’t make it to the field; so we don’t go. I can’t leave him alone and go myself so we settle for pictures. Fortunately, my daughter is very sensitive to my feelings and takes lots of pictures and videos to share with me.

For me, being lonely is not about being alone but about being left out…seemingly always being on the outside looking in. I know that Lynn feels that way too, so I try not to mention it too often because it’s really not something that can be changed. It’s just part of how we have to live our lives; something more that MS has robbed us of being able to do.

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

View Comments (6)
  • tfs
    3 years ago

    You are a wonderful partner. I am also an introvert so I understand your description of not needing a lot of extra-curricular stuff. I am the family member with MS but have been the caregiver for years with other health issues. The bottom line is you MUST take care of yourself. Start with seeing your family physician. It might be time for you to talk to someone professionally so that you can remain strong. It is not selfish to oganize “Me” Time at least once a week. Talk to those people who are afraid they might spill something on Lynn. As you said, he doesn’t care. You Matter desparately. Be as good to yourself as you are to you loved one.

  • Donna Steigleder moderator author
    3 years ago

    Thank you

  • PattiandBob
    3 years ago

    At this time, no, there is nothing available to us. But, we are okay .. we’re always finding ways to cope and will continue to do so. It’s just nice to be able to “vent” occassionally. Thanks ..

  • Joan
    3 years ago

    Well written/said. I’ve read that the MS Society or maybe it’s the MS Association offers caregivers a break by paying for a trained caregiver (for a short while) so that you can have a real break. My daughter with MS needs 24 hour care (she’s only 39), but we have a few family members, friends, and paid caregivers through our state’s InHome Support Services. Maybe, your state has such services; I think it depends, also, on one’s income. If you can get away once a week to attend an MS Support Group that would help a lot. It all depends on where you live.

  • PattiandBob
    3 years ago

    Oh Donna, you speak my words for me. Sometimes I am so lonely (feeling left out) I want to lay down and cry. I truly do not have anyone to “leave” Bob with and I cannot leave him alone for long (and then only if I am nearby). There are those that say they will stay with him, but they are uncomfortable cathing him or toileting him .. so 3 hours is the MAX I could ever be gone. We miss all the family gatherings (accessibility is a HUGE problem) and have missed our grandchildrens graduations (travel to another state is so very very hard and then I have to pack 1/2 the house to go anywhere) and weddings of friends are out of the question. Unless someone comes here to visit, we rarely have interaction with others (except doctors/nurses etc). I would not give up this time with my husband for anything, as he is the love of my life and has been for almost 42 years .. but I really and honestly do feel left out. No picnics, no camping, no hikes, dinners out ONLY if the restaurant is accessible, no road-trips, and on and on. The “outside looking in” is a perfect description. Thanks for letting me share.

  • Donna Steigleder moderator author
    3 years ago

    Thanks for sharing Patti. I am fortunate that currently my family comes to us for special occasions but there are so many things I would love to be able to participate in but just can’t anymore.

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