• Deborah

Facing The Light And Darkness; Anticipatory Grieving. (Part 1)

Dealing with the challenges of being a Caregiver for a terminally ill spouse.

At this stage, many times I can feel a gloomy darkness trying to envelop and discourage me.

With the challenges my husband and I have had to face during this unusual set of circumstances brought about by the Coronavirus Pandemic, I could easily see that my husband’s overall decline was accelerating. I was not able to get him face-to-face before his medical team at LifeCircles PACE for an assessment until early June. PACE typically reassesses his condition every 6 months. I don’t know the reason. It would seem to me that reassessment should take place whenever obvious declines occur? Unless you have private care for your loved one, there is a lot of red tape and hoops to jump through. You have to be a fighter, a true advocate for your spouse.

My husband and I were --- and still are, extremely cautious about being exposed to pneumonia, flu and COVID-19. With FTD and his age, he is 68 --- and extremely vulnerable for any serious illness that involves the lungs. He has chronic bronchitis.

Many theories and myths started to evolve about COVID-19. I've never experienced anything like this pandemic in my lifetime. They say there are many people that are asymptomatic and are clueless that they are contagious.

As the months wore on, I saw more and more people around my community relaxing their social distancing and not wearing masks. Everyone was so tired of isolation, staying away from family and loved ones, and wearing hot masks. We stayed completely isolated from everyone and stayed home, utilizing delivery services.

At first, I think we all thought this would last a couple of weeks or so then run its course. We committed to staying in and staying safe. Then day after day, week after week, we saw more and more Americans and humanity around the world losing their lives to complications from COVID-19.

I found it so hard to wrap my head around how many people were suffering and dying around us. Are the reports and numbers exaggerated, inflated, pure fiction? It's still hard to tell what is the truth about this pandemic.

At the beginning of the stay home order, my husband was just beginning to use a rollator. He was very social at the Day Center and signed up for every activity and outing he could. He was entirely continent. He was able to tell me when he was hungry or thirsty. By his assessment during the first week of June, all of that was gone. He had also had another mini-stroke.

When June 1st arrived, the available list of staff that was reporting to their facility was bare bones. It was hard to be patient waiting for a reassessment after watching all of the changes my husband was moving through for the previous 3 months. I had to have Rich evaluated by one person at a time as our Michigan governor’s rules allowed. Even now, we are at Phase 4. We appear to be stuck in this phase of trying to reopen businesses safely.

We were one of the first clients (I call them participants) to be called in for a medical and cognitive evaluation. With my help, we were able to draw blood, get a urine sample, and have a basic physical exam. After that was completed, our Social Worker had Rich take about a 20-minute MoCA (cognitive evaluation) Test.

The resulting findings confirmed what I already new in my head. My heart, however, was devastated to learn of the extreme downturn in my husband’s health and didn’t want to face the facts. It was about this time that I began to notice this gloomy darkness in the distance starting to close in on me.

All types of Caregiving are hard and challenging (I capitalize the word “caregiving or caregiver” to give it great respect).

“But blessed is the one who trusts in the Lord, whose confidence is in Him. They will be like a tree planted by the water that sends out its roots by the stream. It does not fear when heat comes; its leaves are always green. It has no worries in a year of drought and never fails to bear fruit.” – Jeremiah 17:7-8 NIV 

Somehow, I had to plant this scripture in my heart, believe in it with all my might, and keep watering it and nurturing it.

I am taking time to update my blog followers on what is happening at home right now. My first priority, however, is dealing with our needs. I shall write when I have clear thoughts that I think will be beneficial for someone to read. Please have patience with me as my heart is breaking.

Until my next post, be blessed, be well.