So, Who Cares for the Caregiver?

At our house, the caregiver is my wife, Kelly. We have been married for thirty-five years, twenty-two of them playing the role of caregiver. Having your spouse as the caregiver often comes with its own unique challenges. Caregiving can involve dealing with tremors, kidney issues, slow movement, rigid muscles, impaired posture and balance, loss of automatic movements, speech changes and unreadable writing. Parkinson’s Disease manifests itself uniquely to anyone who has it. No two patients  have the same symptoms nor are the buffet of medications the same.

In addition to addressing my needs, Kelly has other obligations of her own. It really should not be all about me. Unfortunately, it is I who has created her duel role. I have entered what is considered the late stages of Parkinson’s Disease.

Over the years Kelly has read and gathered all kinds of resources to keep on top of the latest information available. We are convinced that staying positive and being proactive are two of the best ways to slow symptom deterioration and disease progression.

We are always poking fun at the situation we get ourselves into. You have to have a sense of humor lest you dwell upon your attitude and ruin everyone’s day. 

Recently, my wife had planned a vacation week without any help. A week for our immediate families to visit her brother’s house, go to the Creation Museum and the Ark in Kentucky. We also had some plans to stop by Springfield, Ohio. It just so happens that on the first night, I developed an infection from my kidney surgery from a few weeks ago, made even more complicated by the effects of my disease.

After being taken to the Emergency Room, I was admitted for three days and Kelly drove back and forth from the hospital to her brother’s house on limited sleep. When I was finally released, we cut our losses and left early for home.

This is just one of the many challenges that Kelly faces as a caregiver. Sometimes we both have emotional needs at the same time and we take the good with the bad. When I need a physician’s office visit, a trip to the hospital, Kelly has always been my advocate. Since I have not been able to drive an automobile, she takes me to the specialists and calls for appointments and cancellations and so much more.  Every week, she faithfully gets out all of the medicine I will need. Then she fills each plastic day tab with just the right amount of dosage.

She has taken a lot of what responsibilities I might have had around the house which makes my life a little easier. I try to do most things on my own but we have come to grips with what I can and cannot do.

We agree that we need more assistance with tasks that require heavy exertion. For example, mowing the lawn is now a major undergoing and daunting chore. I use the riding mower and then we both trim the lawn together. What took me a day to do now takes us two to three days. In the winter, we take turns using the snow blower and shoveling. We are a partnership. Kelly is still my confidant, my advisor and my best friend. We are in this together as a team.

Although neither of us were able to choose which part of the team.

She makes room for my slow movements and irrational behavior. Kelly realizes I talk too fast and slur my words together. Sometimes my short memory drives her nuts, but that could be part of the aging process. I am just so thankful that she keeps me informed. Sometimes I ask a question later in the day and I cannot remember the conversation a week later.

I know I take her for granted as I am no longer the person to whom she married. Kelly deserves much more than this. On the other hand, our vows thirty-five years ago said, ”in sickness and in health”.

Kelly never signed up for this role.

It requires a great deal of patience, love, leaving your comfort zone and just about anything that I cannot do myself. No two caregivers have the same regiment, deal with the same side effects, and on and on it goes.

There is no way that Kelly could do this on her own. But God continues to use her in many capacities.

As the disease progresses, medication becomes less effective and independence decreases to the stage where full-time caregiving is required to deliver increasingly complex care. Parkinson’s disease interferes with physical and social functioning and affects the quality of life of the people with PD and their caregivers. Parkinson’s is a progressive disease where disease management is required to encompass the present state and plan for future changes.

Putting yourself between a vulnerable loved one and  disaster is no easy task. It is hard to think clearly sometimes while amidst a seemingly relentless crisis. It takes humility to recognize that God cares and to let others help you. My message to caregivers is that you should not be too proud to seek help. I can only relate to a family member as the caregiver, but I am sure this applies to other organizations. You are caring human being with feelings and emotions and being caregivers does not exempt you from needing emotional and other kinds of support.

Here is a short list of ways to keep you from caregiver burnout

  • The more you take time to take care of yourself, the more time you will have for what you need to do for yourselves and for others. 
  • Learn healthy ways to manage your stress
  • Think of challenges as an opportunity to learn.
  • Look for the best in others and yourself
  • Have a good sense of humor 

I came across the following Bible verses in one of my daily quiet times:

Therefore, my beloved brethren, be ye steadfast, unmovable, always abounding in the work of the Lord, forasmuch as ye know that your labor is not in vain in the Lord. [1 Corinthians 15:58]

And he said unto me, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me. Therefore, I take pleasure in infirmities, in reproaches, in necessities, in persecutions, in distresses for Christ’s sake: for when I am weak, then am I strong. [2 Corinthians 12:9-10]

Humble yourselves, therefore, under God’s mighty hand, that he may lift you up in due time. Cast all you anxiety on him because he cares for you. [1 Peter 6-7]

Not only do I think these verses are an encouragement to my care partner, Kelly, and myself, but I trust that this article will be helpful to caregivers everywhere.

So now I ask you, “ Who cares for the caregiver”?