Rewind: Swimming Faces

Another post in my “Rewind” series. This post originally appeared on October 23, 2016 as a Facebook note in my pre-blogging days. As I journeyed alongside mom with her diagnosis of Alzheimer’s, I learned through her experience many things about the affect this disease had on her world. As my mother’s caregiver, I have leaned heavily on the experiences of those who have traveled this road ahead of me. In sharing my experience, it is my hope and prayer that someone else will be helped and encouraged.

Even though Momma lives in a little one-bedroom apartment, many days she has a hard time remembering where her bedroom is located. A few minutes ago, I overheard her talking to herself saying, “Now, where is my bed?” Groaning with each step taken toward bed, I could hear my sweet mother then exclaim as she entered her room, “Oh, there you are! I can never remember where you are.”

I’ve been staying overnight at Mom’s house since September 11th. That was the night when mom had a severe separation from reality, scary hallucinations, and I had the realization that it was no longer safe or wise to leave her in her apartment alone. Sadly, she was so afraid to stay in her room. Every time I would get comfy and start drifting off to sleep on her couch, she’d come in the living room, flip on the light, then stand in front of the couch asking me if I was awake. I would get up, gently guide her back to the bedroom, do the room search (looking for the intruders she was so sure were there) and I would try to reassure her that everything was okay.

I noticed that even during naps taken during daylight, mom wouldn’t sleep under her quilt. I would often find it pushed to the corner of the bed or on the floor. On the third night of no sleep, Mom told me that there were “faces swimming” on her bedspread. She was clearly disturbed by its presence. So, I replaced the bedspread with an extra blanket and mom finally settled down enough to sleep for a few hours.

The next day, a very kind friend from church came to sit with mom so I could take my brother to a medical appointment. When I returned later that day, I related the story about the bedspread to her. She took one look at it and said, “Of course there are faces! Look here! See the eyes?” In all the years that the paisley bedspread had been covering my parents’ bed, I had never noticed that.

As I thought about my sweet friend’s observation, I recalled reading in several articles related to caring for individuals with Alzheimer’s that busy fabrics give some patients great anxiety and that it is helpful to use solid colors in clothing and decor choices. Even busy wallpaper patterns can take on frightening proportions that terrify the confused mind. With that information in mind, that very day, I stopped at my local Target and purchased a plain, simple white bedspread for her.

No more swimming faces – and every so often, I catch a heartwarming glimpse of mom gently fingering her new bedspread, running her hands across the soft fabric as she drifts off to a much more peaceful sleep.

First posted as a Facebook “Note” on SUNDAY, OCTOBER 23, 2016

Palliative Care Praises

As this mid-stage of Alzheimer’s drags on, Mom is sleeping quite a bit more, not only at night (which I appreciate), but during the day as well – sometimes skipping a meal in lieu of sleep. Unfortunately, her nighttime sleep doesn’t appear to be very restful, as she gets in and out of bed various times throughout the night – sometimes to use the restroom, other times to explore the contents of her purse or her dresser drawer, or watch the real or imaginary happenings going on inside our house or outside of her window.

We have also noticed she has been less content during her awake hours and is more easily agitated. She paces back and forth between her bed and her chair at the kitchen table, never quite settled in either place; never quite sure if she’s going to bed or getting up.

Long ago, when my mother was still able to make her own decisions, we had discussed her wishes related to end of life care. We had agreed that there would be “comfort measures only” as her time here on earth draws to a close – and she entrusted me with the future task of making those decisions.

The future is now, it seems. I’ve wrestled with what to do for her a lot lately and have come to the conclusion that helping her relax, get some rest, and ease her anxiousness does fall within the parameters of “comfort measures only.”

Momma is not yet in a state of decline which requires hospice intervention and end of life care, but she does qualify for palliative care in this transitional time of declining health and memory.

At the end of August, a nurse practitioner came to our home to establish a course of home-based palliative care. I liked Diane right from the start. What’s not to like? Diane enjoys gardening (and daylilies in particular) about as much as I do – even hooking me up with five new daylilies for my garden (pictures to come next summer)!

Mom’s blood pressure was very high, and had been trending that way for some time. This hypertension is likely one of the reasons she has been having increased difficulties with headaches. Diane suggested that a trial of  blood pressure medication might also help her with a number of other uncomfortable problems. She suggested a medication known to have a sedative effect on some patients, which may ease Mom’s anxiety and help her get more restful sleep. For the sake of Momma’s (and my) sleep and for comfort related to hypertensive headaches, I decided to try the medication. I’m not entirely convinced it is helping with sleep, but I am thankful her blood pressure is now normal and headaches are no longer an almost daily complaint.

Diane has been helpful in so many other ways, including being a liaison between me and mom’s primary care physician, following through on medication changes and checking for understanding regarding those changes. She has helped me work through decisions related to whether or not additional dental work should be done (weighing the trauma it may cause versus the benefit it would bring), connected me with caregiver resources and information to feed my inquiring mind.

As a caregiver, I see palliative care as being the comfort care “bridge” between Momma’s failing physical and mental health and the hospice care that will be provided for end of life needs. I am ever so grateful for Diane as she helps me walk my sweet mother Home on this leg of life’s journey with Alzheimer’s.