Dealing with discouragement
wheelchair accessible van

My husband is disabled and I am his caregiver. After months of searching we finally bought a used wheelchair van. While we were thinking of buying a wheelchair van we were also thinking of the places we would go. I took my husband out for his first venture into the community, an exciting event after being hospitalized for eight months. We went to the barber shop, a discount store, and out to dinner.

Much as I hate to admit this, on the way home from the discount store I started to cry. “I’m getting tired,” I said to my husband. My arms ached from reaching for the tie-down strap next to the driver’s seat. My back ached from bending over and securing the tie-downs to my husband’s wheelchair. I wiped tears from my eyes and added, “I’m sorry I’m not a perfect caregiver.” Why had I said this?

In the past, we relied on a wheelchair taxi service for transportation. Now I was the taxi service, another job to add to my growing list of tasks. After I returned home, and put my feet up, and rested a bit, I felt better. Nobody is a perfect caregiver and striving for perfection is a waste of time. I wondered why I was so hard on myself. One reason is that my husband has been through so much – three emergency operations, a spinal stroke during surgery, resulting in paralyzed legs – and I wanted to make his life better.

my husband has been through so much and I wanted to make his life better.

Age may be another reason. Judith Viorst writes about aging in her book, Necessary Losses. She says we aren’t merely aging, we are adjusting to society’s view of aging. Elderly people are, “for the most part—perceived as sexless, useless, powerless, out of the game,” she explains. The isolation of caregiving is a problem for me and my husband. I rarely see my friends and he rarely sees his colleagues. Thankfully, we are still fascinated by each other and more in love than ever.

You probably have discouraging days, times when you fall short of your goals, and think you’re not a good caregiver. What can we do?

We can increase self-care.

Sleep and diet affect thinking. Every morning I get up at 3 a.m. to help my husband. Sometimes I go back to sleep and sometimes I don’t, so I am trying to take more naps. Like me, you may take naps to catch up on sleep. Instead of eating on the run, you may eat balanced meals and healthy snacks. Self-care also includes spiritual care, which may include meditation, prayer, and attending religious services.

We can focus on the big picture.

Nancy L. Mace and Peter V. Rabins, MD, in their book, The 36-Hour Day, write about helpless feelings. According to the authors, it isn’t uncommon for family members to feel helpless, weak and demoralized when dealing with a chronic illness. “Things often seem worse when you look at everything at once,” they explain. Instead of obsessing about small things, we can focus on the big picture, and change the things we can change.

We can do things that make us happy.

Well-meaning friends told me I would have to give up my writing career to be a caregiver. Just the opposite is true. To be a caregiver I need to continue the career that brings me so much joy. I am blessed to be able to work from home and have my articles and books published. You don’t have to give up on yourself to care for your loved one. Chances are your loved one wouldn’t want you to do this.

7f8c91581e8daf8eb6c752106714ae83We can alter our routine.

Mace and Rabins describe isolation as a miserable feeling and I agree with them. Isolation is a fence around our lives. I am opening a gate in the fence by attending more social events and giving workshops. Church friends have offered to come and stay with my husband so I can have a break. Relatives, friends, and members of your church may be willing to stay with your loved one for a while.

 

Though caregiving can seem like a single journey, it is one you share with your loved one, and millions of caregivers across the nation. Connect with other caregivers by visiting the forums on this website. Join a caregivers’ support group. Have coffee with a friend. Read books about caregiving. Nourish your body and spirit on this journey of self-discovery and love.


Written by Harriet Hodgson
Rochester resident Harriet Hodgson has been a freelance writer for writing for 38 years, is the author of thousands of articles, and 36 books. She is a member of the Association of Health Care Journalists and the Minnesota Coalition for Death Education and Support. She is also a contributing writer for The Caregiver Space website, Open to Hope Foundation website, and The Grief Toolbox website. Harriet has appeared on more than 185 radio talk shows, including CBS Radio, and dozens of television stations, including CNN. A popular speaker, Harriet has given presentations at public health, Alzheimer’s, caregiving, and bereavement conferences. Her work is cited in Who’s Who of American Women, World Who’s Who of Women, Contemporary Authors, and other directories. All of Harriet’s work comes from her life. She is now in her 19th year of caregiving and cares for her disabled husband, John. For more information about this busy author, grandmother, wife, and caregiver please visit www.harriethodgson.com

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11 Comments

  1. Good to know not alone,I never get me time,what is that

    Reply
  2. Thank you got this article. Nice to know others sometimes feel the same way.

    Reply
  3. It is extremely stressful and I don’t know about others but I don’t have any help caring for my husband who had a massive hemorrhagic stroke 2.5 years ago and as much as I try to stay patient and supportive of his needs I find myself losing patience and then he feels like a burden. We have 4 son’s who are grown and 3 live in a different state. We also have a daughter in elementary school still so being a caregiver is only one of my hats I wear. I run the household (pay bills, clean, cook, do laundry etc) as well as help my daughter with homework and care for her. Since my husband has an overactive bladder since the stroke and only one functioning hand I have to wake up to help him urinate several times a night which means I get 2 maybe 3 hr intervals of sleep. I am completely exhausted all the time! Which is effecting my health as well. I don’t want him to feel like a burden to me but sometimes at 3 or 4AM after waking several times, I complain

    Reply
    • HHey cyndi,been taking care of husband who had brain stem stroke three years ago,so feel your pain,he can only move right arm doesn’t talk writes everything ,knows everything goin on around him,some days I just pray to make it through I’m so tired and some days he is just mean,I to was getting up so he could use urinal,several times a nite,got some condum catheders they are amazing,comes with the bags,it’s made just like a condum,just put on and,connect to bag,so no more wake up calls for bathroom there amazing!!!,

      Reply
  4. Was relieved to see these posts and know other people get overwhelmed, stressed, etc. Also can relate to being physically ill and feeling guilty for not being able to do certain things to care for your family member. Sometimes not easy to find others that can empathize either. It does make you kind of grateful for the Times when things were going better for both the caregiver and loved one you are caring for.

    Guess you just have to try give ourselves a break and allow things to settle down.

    Reply
  5. Beautiful. Thank you Harriet. I am learning my life doesn’t end and not count due to being a spousal caregiver. It just changes and one gift is I realize how human I am. With vulnerability, there is honest and strength of spirit.

    Reply
  6. As a single Mom of three kids…oldest 30 years …disabled due to Cerebral Palsy….a son 29….and youngest 15 …anxiety problems. We suffer burn out.After a day running about town…in and out of the vehicle, this in itself is tiring….doing up and undoing the q-restraints …loading and unloading…then the actual ‘running around” doing errands…then at my age 51…and fibre & arthritis fro the many years of single handily caring for my daughter is exhausting. At these times we get down on ourselves and lose our tempers….we love our family member being cared for but sometimes we must show ourselves some care giving

    Reply
  7. Thank you so much for this article. I have been beating myself up for basically being human, as I also struggled to be the perfect caregiver. We need to give ourselves a break, both in body and soul.

    Reply
  8. I get frustrated with our situation and then feel bad afterwards because I feel I’m supposed to be the strong one and full of faith. It’s hard to keep it up.

    Reply
    • Caregivers are people, too. So much of the advice I see for caregivers suggests we have to be perfectly patient and selfless all the time, but that’s a recipe for burnout! Sometimes we forget that we deserve the same empathy and patience we give to other people.

      Reply
  9. You’ve captured the caregiver’s dilemma, Harriet. I’m sorry you and your husband are in a hard situation. We love our partners so (lucky us!) but we’re exhausted. Losing patience seemed heartless and horrifying then, but we were good at talking things through. In retrospect, I forgive myself a hundred times over and wish I’d directed a little more patience to myself.
    Wishing you warm bathes and a massage or two,
    Elaine

    Reply

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