Dear Caregiver,

If you’re the lone caregiver for a loved one disabled from injury, disease, or illness, exhaustion can needlessly add to your stress. Aside from grieving the loss of the person you once knew, the future you hoped to share together as changed significantly.

Maybe you were sports enthusiasts, movie-goers, appreciators of the arts, or dedicated game-players. Now that you can’t easily go to an athletic event, the theater, museum, concert, or continue as club members, is there something you can substitute for it? And, would you consider offerring your loved one the opportunity to experience it with another? For instance:

Once-in-a-blue-moon, anticipate an IMAX ‘excellent’ adventure.

PBS performances, high school, and/or college drama departments are options for plays, operas, even concerts. Most schools and amphitheaters are accessible these days. I’ve found that students, as well as faculty, from the university in my town are open to performing in homes. A friend presented me with the gift of an ensemble singing Christmas carols to their own instrumentation. As well, poetry recitation, storytelling, dancing, playing instruments, karaoke, drawing, or painting are sensory experiences to share together.

Take a virtual museum tour or try this: My “Soul Soaring-No Wheelchair Needed article on 09/14/2012…elchair-needed/

Concerning that serpent of guilt, its motive is to isolate and depress you. Finding a network of support to lighten your burden is a mandatory life-line. has a forum specifically for spouses and parents caring for family members of SCI, in addition to information on health issues, technology and assistive technology, sports, travel, research/cure/treatment news, and much more for your loved one to connect with. It’s an active, informative, stimulating site.

Barry J. Jacobs’ book, The Emotional Survival Guide for Caregivers, is a soothing balm for caregivers. Although it is based on caring for an aging parent, you can learn what he has gleaned from his own personal experience, as well, as a clinical psychologist and family therapist.

Just as important as reaching out for support, you must take care of yourself.

After my release from five months in SCI rehab, I lived with my sister and brother-in-law for about three or four months before leasing an apartment and going back to work. During that time, our church organized a daily schedule to relieve my, then pregnant, sister.

On a two-week rotation, one day every other week, a new friend picked me up around 11:30am to carry me to her home for lunch. Back then, most husbands came home for lunch. The couple, their young children included, shared their meal with me. Dad went back to work, children took a nap, and we visited until nap was over. Normally, I was home by 4:00pm.

It was the perfect opportunity for me to learn to adapt in different environments, build confidence in my abilities instead of focusing on my new disability, and to make new friends.

Not sharing your care-giving can pose a dilemma. When you have cared so attentively that your loved one wants ONLY you to assist and care for them, how can you find the necessary respite? It’s a ‘Catch-22’ situation. It appears self-defeating. I’ve been on both sides.

On one hand, you were there when they were admitted into the hospital, during rehabilitation, and first came home. You know best how-to.

You fear no other knows what is best for them or will care for them as you do. You fear the repercussion between you and your loved one if you seek outside help. You know you will feel guilty, and you fear what others may think, if you do.

You are sacrificing and compromising your mental and physical health for theirs.

On the other hand, your loved one knows you know how-to. He/she feels comfortable with you and feels confident in your hands. They don’t want to adjust to another person because it will be unfamiliar. They don’t want to sacrifice their preferences. They fear the unknown.

Your loved one can not make a full adjustment to his/her situation, or turn that corner toward independence, until they’ve allowed other’s help. It’s interesting that when they get caught between the ‘rock-and-a-hard-place’ that their wheels of avoidance figure out ‘how-to’ for themselves.

When we sulk at the suggestion of assistance from friends, other family members, or hired help, you feel resentment. When we threaten withholding our love or giving up, you feel anger. When we threaten to harm ourselves, you feel guilt and hopelessness.

Allow us these confusing emotions; only don’t take them personally. It isn’t really about you; it’s you fear talking. If fear isn’t faced, it will always be the bully pushing us around.

Love yourself enough to Seek support, Assistance, and You-time to quell the negative emotions eating away inside. Notice the acronym, SAY. Saying it out load–straight-up– is the first step toward a viable solution to living joyfully and at peace with each other.

YOU ARE INVALUABLE; not just to your loved ones.


  1. As usual, that post was insightful and moving. What an encouragement at an honest and sincere level that came from experience.

  2. I have been taking care of my boyfriend may will be 25years with no help.we live in a rural area and just can’t seem to find anyone that knows how or willing to learn.I don’t want him in a home.yes I do love this man and I put my health behind his.I have been with him so long I don’t know what to do for myself.I feellike I’m having a nervous breakdown.I don’t have anyone to talk to because this is a small town and no one here understands.I don’t know what to do or how to find someone that can help. Any suggestions.

    1. I am so sorry for your isolation; sometimes, it does seem like we’re forgotten.

      It’s difficult for some of the able-bodied to see or spend time with the disabled. The realization of our day-to-day is a personal confrontation to them of: Are they willing to help in some way? Do they know what to do? And, can they make the commitment?

      Do you have family nearby? Are you church-goers? This would be the place to start.

      Have you considered conducting a “caregiver” workshop? Your boyfriend need not be involved, but he MUST be willing for someone else to relieve you a few times a week–mornings, half days, evenings, or for a full day. Will your insurance pay for assistance; can you afford it out of your own pocket; or, will it be voluntary?

      First, plan a beginner course of a typical day-in-your-life. If your boyfriend requires extra, maybe a half day. Once you have an hour’s worth of instructions along with props, supplies, etc, advertise it on your local TV station, list it in your newspaper, and post/pass out fliers at businesses, groceries, and post office. Leave an email address or phone number for contact or questions. Collect the questions, as well as some you know of importance that should be addressed.

      If there is interest, even one or two, begin with a Q & A segment before beginning your teaching.

      You’re the expert. BUT, YOU MUST TAKE TIME TO CARE FOR YOURSELF first! Emotions can become frazzled. You are as special as your boyfriend is!

      You can get GREAT feedback at from the spouse/caregiver forum discussions.

      Please, keep me updated. Good luck!

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