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At The Mercy of Others

After a year and a half hiatus from blogging I’m finally ready to start posting again. 2020 was quite a year for everyone and 2021 has a personality of its own. I hope you’re all doing well and have survived the challenges of last year, or better yet, grown and flourished from the experiences.

A good friend of mine was recently diagnosed with a life changing medical condition which inspired me to start sharing again.

A little background

Twenty-six years ago I was diagnosed with Transverse Myelitis. My condition resulted in partial paralysis from the neck down which means I’m considered an incomplete quadriplegic. I am not ambulatory and have limited use of my arms. Compared to some I have quite a bit of mobility and independence. Compared to others I have very little mobility and independence. Normally I prefer not to focus on the downside of my situation but occasionally it gets to me, and I know it gets to others experiencing debilitating infirmities. I hope my candid “sharing” can help us all recognize that we’re not alone on this journey.

Limited independence obviously means I have a certain degree of dependency. Most people in my situation require caregivers. As do I. Some hire caregivers and some depend on loved ones such as parents, children of parents, siblings, grandparents, and in most cases spouses. Caring for a loved one, particularly when there's a great deal of physical dependency, can be extremely trying on the caregiver and totally unexpected if the situation has developed later in their relationship. Fortunately, I met my husband after I ended up in the wheelchair, so he had a limited knowledge of what he was getting himself into. However, no one knows just how involved caring for another person can be until they’re faced with the realities of the situation firsthand.

Helping hands Some caregivers come by they're giving spirit naturally, some through the grace of God, and others simply rise to the occasion. However well-meaning the caregiver is it's an incredible change/burden to their lifestyle. Many cultures care for their elderly and infirm in their homes. Others see the benefit of delegating their care to professionals. The latter option is often a necessary step to sustaining healthy family units. Either option can put a toll on the person(s) caring for someone they love. In order to maintain one's health and sanity caregivers must put on their own oxygen masks first. Sometimes that requires putting their loved ones needs temporarily on hold. As a mature adult, I'm aware of the strain being my caregiver places on my husband's shoulders. We are constantly developing systems to manage our situation and relationship. One small example is when he’s absorbed in other activities it's difficult for him to drop everything and run to my side. I give him a one- or two-minute notice that I need help, unless of course it's an emergency then I simply holler.

On the receiving end

Now let’s focus on the perspective of the person requiring care. As an example, my needs consist of assistance while dressing, toileting, bathing, food preparation, and retiring to bed. I can safely transfer to a shower bench and bathe myself but require assistance transferring back into to my wheelchair and getting dressed. Thanks to modern technology, my power wheelchair allows me a certain degree of freedom when navigating around my house or going for walks. I’m even capable of driving independently thanks to a ramp-van with hand controls. Unfortunately, when I am away from home, and my familiar adaptive equipment, I require more assistance with bathroom needs—on a frequent basis (paralysis often results in limited bladder control). It is the wise and gracious person who can be good-natured about their limitations and wait patiently for assistance. Over the years, I have adapted to my limitations fairly well and usually wait patiently for assistance as I truly empathize with the demands placed on my caregiver hubby. We both have a good sense of humor (a must) when dealing with botched transfers or personal hygiene issues. But every now and then my heart grows extremely heavy—when I feel like a burden.

Once in a while projects or other household maintenance items seem to take precedence over my care triggering feelings of insignificance on my side. I know the best answer to dealing with my feelings is to look to my Heavenly Father. He loves me and understands my needs. However, when deep in the quagmire of despair I sometimes forget to look up and tend to dwell on the negative. I’m sure we all find ourselves wallowing in the mud sometimes and a hand up is needed right about then. I recently felt that way and thought this post might be helpful to anyone newly or even historically confronted with the hard issues of feeling dependent on others.

We're in this together

We're in this rocky boat together. And believe it or not, our caregivers are in the same boat—just on the opposite side of the boat. Most people don't have a clue what it feels like to rely on someone else for almost everything they do. As care recipients, we try to be patient with the situation but once in a while, when it's been a hard day, all of the little things add up and we feel dependent.

Being “on call” 24/7 is demanding on caregivers. Living with a disability and being dependent 24/7 is demanding on us. We can best calm the waters of this rocky boat by trying to put ourselves in each other’s shoes. Communicate our needs to each other often. Know that we’re not alone in our journey and forgive frequently.

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