The Challenges of Becoming My Husband’s Caregiver

I’m delighted to introduce Aging Abundantly Community member, Camilla Lawson, as today’s guest contributor. Camilla has been an inspiration to those of us who have walked this path beside her as she learned to become her husband’s caregiver.  Each hurdle and setback she faced was met with fierce determination,and the desire to learn and overcome, even when it required that she do things she never thought she’d have to do. None of us are born caregivers. In fact, quite the opposite! But with courage, commitment and support we can prevail, and Camilla is proof. I invite you  to listen to her story. D S

 

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BECOMING MY HUSBAND’S CAREGIVER

by Camilla Lawson, Aging Abundantly Community Charter Member

Over the years of living with a chronic illness I learned much about self-care. First and foremost, I learned that if you don’t make yourself a priority, no one else will. When faced with caring for a loved one I quickly learned I had much more to learn.

Several years ago, I noticed that my husband was exhibiting signs that were not normal aging. It took a year of testing to receive a diagnosis of Mild Cognitive Impairment (MCI). We were told it could lead to Alzheimer’s.

Somehow, MCI didn’t seem so bad. It might never get worse. We were lucky and it turned out to be slow-moving. Nothing seemed to change much for the next couple of years and life went along pretty much as usual.

Then one day word arrived in a voice message that hubby was no longer permitted to drive. He had failed the required driver’s test for seniors over the age of 80. It was a staggering blow. He had done the bulk of the driving over our 28 years of marriage. He had done so to protect me from flare ups of my chronic condition of pain and fatigue. Just like that, everything changed.

MANAGING CHANGE

I’ve heard it said that change is the only constant in life, and I have started to really understand this. I was in for some big changes!

Over the years there were many things I avoided doing to conserve my limited energy. Now I was faced with taking on more responsibility. I was now the only driver, and every appointment, errand, and social engagement was my responsibility. Car maintenance and repairs were mine to handle, as well as small tasks like paying attention to the gas gauge and filling the tank. Some challenges seemed overwhelming, like getting into that tract of the car wash! It was enough to spook me for hours. How sheltered I had become.

I loved that hubby cared for and protected me. He made my life so much easier, but now he was no longer able to do so. To make matters worse, my son who had offered his support became overwhelmed and unreliable. More and more of the daily chores fell to me. To make matters worse, hubby became argumentative and difficult to reason with. Seemingly overnight, my stress level went from very little to escalating. I feared I would break down. Then, who would look after us?

But, I didn’t break down. Instead, I grew stronger. I managed to do more and figure out how to do things I had never done. I realized and accepted that the only one I could count on was me. Oh, I paid for the extra load with pain flare-ups, sleepless nights and a huge increase in my fatigue level, but each day I simply got up in the morning and carried on.

AN OFFER OF HELP

Last summer, we received an email from my husband’s long-estranged son, Sonny. He wanted to reconcile and included a picture of his three-year-old daughter and expressed his desire for us to get to know her. We chatted a few times on Skype and then booked a flight to fly half way across the country to visit for a week.

Sonny wanted us to move to be near him so he could look after us. He promised us that it would not be like our last move to be near my son, a move that had not turned out well. We faced a tough decision. Should we leave the family and friends we’d built a life with? Was it worth it to go through all the hassles of moving to be with our newly reconciled son and family?

It seemed like a good opportunity for Hubby to spend time with his son and even receive some help with his care. I knew this would be especially valuable if things became worse. We had moved several times in our marriage, and it always led to new adventures and the meeting of new people who became life-long friends. It was decided. We would make the move.

THE MOVE

Previous moves required a purging of our belongings. I still miss items we had to part with over the years; furniture we loved that wouldn’t fit in a new place and items belonging to my Gran and my Mother. I’d love to still have some of them now.

More downsizing would be required prior to this move. Hubby agreed to purge our paper files, while I did almost everything else to prepare for the move. Eventually, it all came together, and the day of our flight arrived. Little did I know the toll the move would continue to take on our lives over the next year.

NEW TOWN, NEW CHALLENGES

A new beginning in a new town came with a huge learning curve. A new apartment, new roads to travel, new stores to shop, new activities and friends to find. The worst was finding new medical people to continue our care. Hours of pouring over maps, phone calls and sitting in waiting rooms finally reaped all the professional people we required.

Hubby had a huge set-back from the sudden change and forgot almost everything he knew. He tried to relearn, and I tried to teach him. Even though our son and daughter-in-law were involved in our lives, most of the work of daily living still fell into my lap. One thing we both began to learn was how expensive our new province was. The rent was considerably higher than our previous place. Groceries and gas for the car were more expensive. Car insurance was more than double, and the car needed expensive repairs to become certified, something not previously required in our last hoe. Tax benefits were fewer and the costs of medications and hospitalization, which were paid for by the province before, now had a cost for us.

CUTTING EXPENSES

The only way to save money on expenses was to eat out less often and to do the housecleaning myself. I had not done my own housework since I was diagnosed with chronic pain and fatigue 28 years ago. Eating out a couple of times a week was a break for me and now we would have to do without. I had to take on the finances as Hubby became too confused. There would be no foot care nurse for me now either. The Opioids (narcotics) that were helping me control my pain were not longer being allowed, as the epidemic of addictions and deaths from opioids has grown. I had to wean off slowly and replace them with a far less effective drug. All this while adding more and more stress to my life physically and emotionally. It did not come without consequences.

My pain level increased, my sleep decreased. My fatigue level was beyond manageable. Meanwhile Hubby seemed to spot every social activity going on around us and begged to attend. He seemed oblivious to my pain and fatigue. It hurt that he asked and hurt even more that I couldn’t take him. We saw neighbors in the hall that would make potential friends, but I had no energy to entertain. Sadly, I watched Hubby give up everything he loved to do for lack of memory. He no longer read, or followed the newspapers, and rarely remembered to listen to the radio. He no longer did his beloved proof-reading and had increasing difficulty following TV shows or movies.

UNEXPECTED NEWS

After a short eight months, Sonny wrote me an email saying he didn’t want his dad in his home anymore or around our granddaughter. Sonny did not believe that my husband has dementia! I could think of nothing left for us to do but return to our family and friends and home we had left behind.

With four months till the end of our lease, we will set off to our previous city and province. After all the expense of moving here, we are now faced with the move back. It doesn’t make sense to me to stay here alone. I have no idea how everything will affect Hubby, but I have concluded that I have to do what’s best for me right now, so that I have what I need to care for him.

PRACTICING SELF-CARE WHILE CAREGIVING

Little ways to protect oneself and provide some refuge are crucial when care-giving. I found the demands for my time were eating up my energy. I became very tired. While seeking to learn about Hubby’s illness and resources for self-care I came across a course in Mindfulness Meditation. I wasn’t sure I had the energy to take the course, but I knew I must. It took a fair bit of time each day to read and learn everything, but now, several years later, the little moments of peace it provides, especially when I am feeling frustrated with the dementia, are invaluable.

Simpler ways of helping yourself can come from support groups, phone hot lines, courses to learn about the disease and even the internet web site offered by the Alzheimer Society. I also was lucky enough to come upon this Aging Abundantly web site. This ultimately led to a small support group on Facebook, that has seen me through thick and thin. I can be brutally honest to this group of very caring and supportive ladies. I just let things all out, no matter if I seem up or down, and they support me and give sage advice from a non-emotional perspective. It doesn’t matter what you choose, as long as you find something that provides support. Going it alone is not necessary or healthy.

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Camilla is a retired Registered Nurse who enjoys her miniature doll house, decorative painting and reading mysteries. She previously co-authored a book on coping with fibromyalgia based on her own experiences with taking control of her life and illness and becoming empowered in the process.