When Caregiving Becomes Complicated

Caregiving just got much more difficult for me.

Caregiver A couple of weeks ago, my Mom had an hallucination that scared her and got out of bed at midnight while we were sleeping. She forgot to use her walker and was carrying a pillow. Evidently, Mom was trying to bolt out of the room when she fell in the doorway.

As I’ve explained in past blogs, my Mom has Lewy Body Dementia (LBD) with Parkinsonism. The Parkinson part of her disease has taken a terrible toll on her body physically. Even though she uses a walker, falls are becoming more and more frequent. It seemed inevitable that she would eventually break something despite all our family’s efforts to watch her around the clock.

We took her to Urgent Care the next day. The X-ray came out negative and the doctor told us that in all likelihood she sprained her hip, so we took her home. After a few days, her hip was only getting worse. She could not walk at all and I had to have my husband or brother physically lift my Mom from a wheelchair to the toilet. As her primary caregiver, I felt totally overwhelmed at this point.

Surgery for LBD Patients

We took her back to the doctor and they ordered a CT scan for the next day. That scan showed that Mom had fractured her hip – substantially – and we landed in the ER. The fracture required a partial hip replacement surgery.

Hip ReplacementThis was one of my biggest fears. Almost three years ago before we knew Mom had LBD, she had a hip replacement in her other hip. After the surgery, she didn’t know where she was or who I was for six weeks. Her mind never came back completely. After her diagnosis, we became aware that this is not uncommon and general anesthesia can cause permanent damage in LBD patients.

This time around, we requested spinal anesthesia along with “twilight” anesthesia as is recommended for LBD patients. Fortunately, the surgeon was able to accommodate our wishes.

Right now, it’s hard to tell if there will be any long-term consequences or if the surgery will speed up symptoms as it did last time. LBD patients are extremely sensitive to pain medication and as a result my poor Mom has been hallucinating non-stop since the surgery. But we are hopeful that once they wean her off the drugs, she will become more lucid.

My heart breaks and we’ve all shed tears over the situation. My Mom is in rehab now and my siblings, children, and my father are all rotating to stay with her.

Caregiving Statistics

Just another part of this journey into an unknown world. From time to time, I like to share my experiences as a caregiver because I know that I’m not alone. Far from it. In fact, I fit right in with all the statistics.

According to the Alzheimer’s Association, 43.5 million of adult family caregivers care for someone 50+ years of age and 14.9 million care for someone who has Alzheimer’s disease or another type of dementia. Of those caring for someone aged 50+, the average age of caregivers is between 50-64. A Gallup Healthways Wellbeing study found 72% of caregivers cared for a parent, step-parent, mother-in-law, or father-in-law, and 67% of caregivers provided for someone age 75 or older.

In other words, if you are a baby boomer, chances are good that you are helping to care for mom and dad.

If you’re a woman, the statistics go up. An estimated 66% of caregivers are female. The majority of caregivers (55%) in one Gallup study reported they had been caregiving for three years or more.

The Home Alone study―a study of family caregivers who provide complex chronic care―found that nearly half of the caregivers surveyed performed medical and nursing tasks. More than 96% also helped their loved one with daily activities such as personal hygiene, dressing/undressing, getting in and out of bed, giving prescribed medications, shopping for groceries, and providing transportation.

Yup, check-check-check, that’s my life right now. And evidently, a lot of your lives out there as well.

Getting Help

Like most caregivers, I work part-time as a writer as well as caring for my mother full-time. I absolutely want to love and care for my Mom. This has been my choice; however, because of all the complications and some burnout I am experiencing, our family will be looking for a part-time caregiver to help us out. It’s definitely time.

Because here is a sobering fact: According to the Alzheimer’s Association, “the close relationship between the caregiver and care recipient is a shared relationship with involved emotions, experiences, and memories, which can place a caregiver at higher risk for psychological and physical illness.”

That’s the thing. We caregivers have to take care of ourselves so we can take care of our loved ones. As I pointed out in a previous blog, several friends and family members who have gone through this experience have strongly advised me to care of my physical, spiritual, and emotional needs and recognize my limitations. 

So as I continue down this path, in a future blog, I’ll share my experiences with finding the right caregiver for my Mom to hopefully help those of you in the same boat.

In the meantime, if you are a caregiver like me, please feel free to share your experiences and any advice you have in the comments below.

Images courtesy of olovedog and patrisyu at FreeDigitalPhotos.net

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