Post 48
In these last few years fibromyalgia has given me a small taste of how it feels to be the care receiver rather than the caregiver. Admittedly, I mostly take care of myself; however, my husband does almost all of the shopping and for awhile did most of the housework as well. As someone who likes to be independent, this reliance on someone else has really been a blow to my self esteem. Thankfully, I’ve slowly grown stronger due to diet, supplements and exercise, and I’m now doing my share of the housework and a few errands. I still have occasional “achey” days and my energy is used up more quickly than most people’s, but for the most part life is much better. (There are those occasional problems, such as I’m experiencing presently —a pinched nerve causing so much pain in my leg that I can’t go downstairs to let the dogs out.)
As I’ve begun to feel stronger, I’ve realized that being in the passenger’s seat for awhile has helped me to see life from a different perspective that might be useful to other caregivers. So I’m going to open up here and let you know how I’ve felt about being “home bound” to a great extent and hope that you can use this information when caring for someone else—both those whose disability is recognizable and, perhaps, severe, as well as those who have a less visible disability, such as fibromyalgia.
A lack of energy may be one of the greatest hindrances to living a normal life. Not possessing the energy to do the things one is otherwise capable of doing can be a cause of depression. It certainly makes me feel down at times. I know I have the capability to write or to paint or to go out with friends or to help someone else; however, when my energy is low I can’t muster up the desire or drive to do these things I love to do. Without energy I play way too many games/puzzles on the iPad, just as others may spend all their time watching TV. For short term illnesses these ways of occupying oneself are beneficial—they help you keep your mind off of your illness. In the first couple of years that I was mostly home-bound I felt that video design games were therapeutic—and they still are, unless I spend too much time in that occupation. If I do, I struggle with feelings of self loathing—I often ask myself, “Can’t you do anything real anymore?”
It can be very difficult to be stuck at home when everyone else around you is living life to its fullest. Of course extreme introverts might find this one of the advantages, but I imagine almost everyone misses occasional restaurant visits with close friends and seeing the sports games and/or school activities of their children or grandchildren. It can be a tortuous inner struggle to rejoice with those who can go out and leave you behind, or it can be a relief to have quiet time to yourself. Personally, I alternate between enjoying my alone time and feeling left out. I imagine that some people in this situation will openly share their emotions— which will probably sound like complaining— and others will “bravely” hold all feelings inside —which means you might never know if they are depressed or unhappy.
Along with the need to stay home, a loss of Independence can occur in varying degrees and can make a person feel as if they no longer exist as an individual with their own friends and occupations. If former friends quit communicating because of their busy lives, it can create a sense of loneliness and self doubt. For me Facebook has been a lifesaver because I can easily keep in touch—although it can bring a tinge of sadness when I see photos of my friends/family having a great time together doing things I used to be able to do easily. Of course, this doesn’t mean I wish everyone would stop doing the things I miss, but naturally the longing to be “normal” is there.
Another side to loss of independence is being dependent on someone else and rarely if ever establishing/continuing one’s own friendships and activities. As much as I love my husband, I long to go out and have a long conversation with a friend or group of friends by myself. . . or to belong to a writing group. . . or volunteer somewhere—some place where I’m not just “Mrs. Ron.” Technically, I should be able to do this now that I’m feeling better most days, but up to this point I’ve not known whether I will have the energy to fulfill my commitments, so I’ve avoided making any.
Even when I have a little energy to go out, another problem that keeps me home is my very restricted diet due to being unable to process histamines. It is very difficult —although I do it on special occasions—to go out to eat when there is rarely anything offered that won’t cause me digestive issues. Before histamines became such a problem to me, I never considered the possibility of health issues when people I knew chose to eat at home rather than going out with friends. It’s amazing what a little pain will do toward helping me be more understanding of the problems of others.
Now that I’ve let you in on some common problems of being homebound, I’d like to make just a few suggestions regarding how you might help someone you know in this situation even if you are not their caregiver per se.
I think the most useful help you can give is to offer opportunities for your friend, family member, or care receiver to talk to you about their feelings of loneliness and their desire for more activities and/or friendships. If they are able to get out of the house on good days, you could invite them to your house or take them on an outing of their choice. If they can't get out at all, you might propose doing a new craft or other activity together on your next visit.
If you are the main caregiver, what the person may need is for you to encourage others to visit or call. Or perhaps you can arrange to take them to an outside activity and drop them off. If you are the parent of a child with a disability, some cities have groups where the children can socialize. If you can’t find a group, get to know other parents in a similar situation and form your own group. Many churches and community centers offer seniors a chance to socialize with other seniors. Some of these are particularly designed for seniors with dementia. When Mom lived with us, she was enrolled in two different church programs that met one day per week. At first she was frightened to go somewhere new, but she came to love these opportunities. She especially loved the group singing and indoor bowling. (She and dad were in a bowling league when I was a kid.)
It may be easier for a homebound person to accept the limitations of their new life if they can find new meaningful activities that they can enjoy at home. (For me writing this blog and taking care of two small dogs that were rescued from puppy mills have become my way of still making a difference in the world.). Finding a way to help others and/or learning new skills or arts can lift the spirits of someone who feels stuck at home. In many cases the person may need help with ideas for reaching out to others. Focus on the things they can still do -- whether it is sending a card to someone or sewing a quilt. The possibilities are as varied as our individual personalities and situations.
If a person stays home because of dietary restrictions, you might consider planning a bring-your-own-meal meet-up at someone’s house or at the park. By the way, If you’re inviting someone to dinner it is always helpful to find out about their dietary restrictions. Personally, I tell friends who invite me to dinner that I would love to eat with them, but I will need to bring my own food and then explain how complicated it can be to find something I can eat.
Every person’s needs and desires are different, so I can’t presume to tell you what will be beneficial for the person in your life who’s health causes them to stay home most of the time. If the person doesn’t express their needs, you can try to discover some of them by being observant and listening to hints that might be dropped intentionally--or, perhaps, unintentionally. Sometimes it’s helpful to give the person a little nudge in the direction of trying something new as I did with my mom; however be careful not to push them into doing something they really don’t want to do. The idea is to help the friend/relative/care receiver become more independent and self-fulfilled, not to bully them into what you think is best.
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