Alzheimer’s caregivers need respite care

Euri Giles | Clareifi

My dad was diagnosed with Alzheimer’z disease more than 9 years ago in 2012. He is now in “stage 6 late” where he has:

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Significant impairment in short- and long-term memory, and difficulties in dressing and toileting without help. Easily gets confused and frustrated and says little unless directly addressed.

For my mom who is my dad’s full-time caregiver this means that he:

Requires full-time care and help with all daily tasks, as well as all personal care, hygiene, and toilet use. Patient may not sleep well, may wander off.

Four years ago, with the support of my wife and children we moved more than 500 miles to be close to my aging parents. We came home to help however we were needed, in supporting their growing needs.

No matter the “vision” or memories that I had of my mom, who while I was growing up was to me the strongest, smartest, most capable and loving person on the planet. Everything changes, and she was no exception.

Not only did her entire life change as my dad’s Alzheimer’s progress, but she herself suffering from diabetes was not in the best of health. The emotional, physical, and financial toll of being a full-time caregiver began to weigh her down. In turn her health became 2nd priority after my dads (in her eyes).

This is not uncommon.

Caregivers need a break every so often. They need help. They need to take some time for themselves to just rest, and get a chance to do something different.

Caregivers need respite care.

According to the Alzheimer’s Association:

Respite care can provide:

"A chance to spend time with other friends and family, or to just relax

Time to take care of errands such as shopping, exercising, getting a haircut or going to the doctor

Comfort and peace of mind knowing that the person with dementia is spending time with another caring individual

Respite care services can give the person with dementia an opportunity to:

Interact with others having similar experiences

Spend time in a safe, supportive environment

Participate in activities designed to match personal abilities and needs"

I try to help by visiting multiple times per week to help my mom bathe my dad, prepare meals, or work on projects around the house. Often, I go over simply to sit and try to engage my dad in conversation while mom goes to the grocery store.

Lately, the number of things that were once second nature for my mom to get accomplished has diminished. She’s been getting confused herself and seems more tired, and depressed.

She had the opportunity to take a trip recently to attend a graduation dinner for one of my cousins (as she’s fully vaccinated for COVID-19). The only problem was, what to do with dad? He’s in no condition to travel to the grocery store, let alone take a 4-hour road trip! His incontinence has us mopping the house frequently. That means having him stay anywhere other than his home is a hassle.

I volunteered to stay with my dad overnight. I only spent a total of 26 hours alone with my dad, although this was a big change from being a “part-time” caregiver supporting my mom’s breaks.

I watched him as he shuffled from room to room “working” he says, he’s got so much work to do. Dad was a writer, so he looks through old newspaper clippings with his articles in them or carries around books. He reads the title page over and over again.

I try to convince him that it’s time to take a shower, but he says that he’s already done that today. He was always in the best physical shape. He would jog, swim, and eat healthy foods. Now, even as his memories are gone he’s getting slower physically too, but if he doesn’t want to do something — He’s not going to do it! He is still a strong man, and we try not to upset him. Aggression and mistrust is an already common trait among Alzheimer’s patients.

I prepare his meals, try to clean him the floor when he has an accident and try to get him to bed at a decent hour so that he is not up all night when my mom comes back. Once I get him in the bed, I find myself waking up every hour to check on him. He suffers from seizures occasionally now, and I am paranoid that while I’m in charge this will happen.

He sleeps through the night, and wakes up shortly after 7 AM. My body and my head ached from lack of sleep and tension. “This is what my mom has to feel every day?” I think to myself.

It’s lonely.

It’s sad.

It’s the most difficult job that I’ve ever had to do.

It’s also the most rewarding feeling to know that my has my mom, and me to treat him with love, dignity, and respect as he lives out this final stage of his life.

Mom had a little break, but she needs so much more help.

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Euri Giles covers lifestyle content, politics, and news near you in Texas.

El Paso, TX
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