I was my husband’s care partner when he got dementia.

Overwhelmed

In addition to medication-related loss of balance, I began to feel overwhelmed, at times – like I was having trouble handling it all.  My husband started getting dementia about two years before I did.  He had trouble remembering, was repeatedly losing the car keys, or his wallet.  He had trouble processing some of his thoughts, and had great difficulty learning new things.

Yet somehow we still managed.  Mainly because I was catapulted into position of ship captain for all of the details he could no longer perform.  In addition to what I already had on my plate, it was a lot.  Sometimes too much.  But as good of care as he had taken of me, I was determined to care for him.  

So now, in addition to my loss of balance issues, feeling bad, and waking each day to sugar crashes, I now had the added stress of helping my husband survive the implosion of his brain.

We had good days, and bad days.  He talked to me about his memory loss, his weight loss, and desire to stop fading away.  I had never been close to someone with dementia, and had no knowledge of what to do for him, nor for the frustration building inside me that felt pretty bad.

Perhaps food would help.

Richard was as thin as a rail, so I knew he needed to eat.  I also figured that food could help me, too – that somehow food could save us.  I was certainly on the right path, but there were too many roadblocks for the two of us, alone, to get over.  Regardless, I tried.  I bought tons of cookbooks with recipes that touted cures for diabetes, memory function, and stress reduction.  I loved to cook, so saw this as an opportunity to help us both.

I was on the right track with food, yet too overwhelmed to deal with all the other stress.

The problem was that it didn’t seem to matter what we ate because the effects of the medication were overriding the benefits of the food.  I was still dizzy from the pills, and he continued to lose his memory and ability to communicate as he once did.  His dementia was different from mine, and I promise to produce a post about what happened to him a little later – but for now, though, I’ll focus on one story at a time.

Like I said, it didn’t seem to make a difference what I ate.  I was still dizzy, still had loss of balance, and growing more frustrated and overwhelmed by the day.  I was exhausted, mentally, emotionally, and physically – finally too tired to cook much more than a frozen dinner.  In addition to that, my balance had gotten so bad that I was afraid I would drop a hot pan from the stove. 

So we ate out.

We started eating out most of the time because it became too big a task to cook, or even walk through the grocery store.  My loss of balance had gotten so bad, I was afraid to make trips to the store, and Richard had trouble remembering what to buy for us.  I can recall times I sat in the car, and waited over an hour for him to get things on a list I had prepared for him, only to have him return to the car with only a carton of milk and apologies because he couldn’t find things.  We continued with the potluck grocery trips, but ate our meals out, mostly.  

The stress of caregiving was too much on top of my health issues.

My overwhelming frustration began to include occasional bouts of anger, sometimes venting it onto Richard when he failed to meet what I considered to be normal expectations.  I vacillated between supporting his failing brain to occasionally damning him for having it.  Life in my world was becoming crazier by the day.  I was probably not the best candidate to look after Richard since I had such troubles of my own that stemmed from medications I was on.  But I was determined to make it work, somehow.

After my first several falls, dealing with Richard became substantially more difficult for me to bear.  His doctors recognized my stress level, and recommended on several occasions that it might be time for Richard to live in a facility.  I could not fathom losing him, and told them I was taking care of him.  But it was becoming harder and harder to do so, effectively.  I was taking less and less care of myself, spending the majority of my time trying to look after him, and we were both flailing, yet managed to hang on to each other.

Then came Janet.

By the time Janet moved nearby to help us, I was neck deep in trying to manage everything, and thanked God she was there.  Richard was also glad she was there, as he hoped she would make me stop taking my frustrations out on him.  I truly didn’t mean to.  I loved that man, dearly.  But my reserves were breaking down.

Janet was like a deer in the headlights when she arrived on the scene, but quickly adapted to the changes she saw in us, and jumped in to help us with whatever we needed.

She had never been around anyone with dementia before, and she was now faced with one, and another in the making.  She had no idea what to do about that, except whatever direction the doctors were guiding us.  It wasn’t until we had both died that she realized how badly the doctors had misguided our paths. 

I knew I had to help her get her sea legs with us.

Somehow I knew she would be the one who would pick up all the pieces, and put everything in order for us.  I also knew she was frightened with how she found us.  She had always been the shy one, the one people could easily push around.  Yet in the role she was about to be given, she would need to be strong and courageous beyond anything she had ever experienced or imagined.  And I knew I had to instill that confidence and enduring strength in her while I still could.  In addition to everything else, I now had to help her so that she could help us.  And I did.  And she became unflappable in the storms that were about to encompass our world.  She became my rock, my strength, my warrior when I could no longer stand.

Janet helped us both so much.

Even so, she still has trouble processing the mistakes she is convinced she made of not knowing better what to do for us.  She did not make mistakes.  She handled things remarkably, in spite of the real mistakes made by doctors, nurses, and care staff.   And I hope and pray every day that she will someday come to grips with that.  I totally forgive her for any mistakes, love her, and look forward to giving her a hug when I see her in heaven.

I wrote the words below ten years before this time in my life.

Perhaps it carried me through the darkest days that were yet to come – even when I was at my personal worst, angry and lashing out – by the grace of God, it was still locked inside, somewhere, and would help me to wake up and find myself again, one month before I died.

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Article on caregiver stress:

https://www.alz.org/help-support/caregiving/caregiver-health/caregiver-stress


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