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.

The Day the Caregiver Cried

Momma had a good day on Saturday – well, as good as days get when you have Alzheimer’s. Wayne was out of town visiting a friend, so it was just the two of us most of the day. She had been alert, busy, and had a great attitude. I turned the clocks back one hour, looking forward to the possibility of an extra hour of sleep. But it was not meant to be – by the time my head hit my pillow she had her light on in her room and was rummaging through her drawers.

It was my turn to teach Sunday School the next morning, so I tried to sleep a little, staying on the edge of sleep, listening and keeping a sleepy eye on the monitor throughout the night, only intervening when I thought it was essential. Sadly, no amount of “redirection” on my part was going to get Momma to stay in bed. She was too busy scolding the intruders that were in the kitchen. Of course these intruders were invisible to me, but all too real in her eyes. She would cry out up the staircase in the direction of our second floor bedrooms, “Hello…whoever is working here tonight! There are people in the house who shouldn’t be in here.”

Morning arrived too soon and Kathi arrived promptly at 8 am. I am so thankful for Kathi, a spunky little lady who is my mom’s caregiving companion for 5 hours every Sunday. While she lovingly cares for my mom I get to teach my Sunday School class. Wayne and I can worship with our church family, have lunch together, and then visit my brother Brad in the nursing home. She’s such a blessing.With a warning that things might be a bit rough today, I set off for my time with my church family. What a privilege it is to be able to gather together with other Believers to worship God. Five hours later I returned home and found Kathi with tears of sadness and compassion welled up in her eyes as she mentioned the changes she had observed in Momma since last Sunday, saying Momma had been unusually “teary, anxious, and confused.”

the dancing paper doll

Momma’s marked delirium and anxiety continued throughout the rest of the day, with her “seeing kids playing in the trees” and “family members  hanging out in the yard.” A little decorative paper doll with a handkerchief dress was reportedly doing a little dance on her dresser. The fingers of the praying hands figurine that her mother made many years ago were eerily moving. As I accompanied my walker-schootching mother to her bedroom, she told me to get some shoes on because “there are bugs with stingers crawling all over the floor.” Those same bugs were also crawling on her bedroom wall, and birds were perched on her light fixture and flying around her room whenever they were startled.

Sunday evening my daughter Beth stopped by with three of her kids. Beth and Violet witnessed the nonsensical talking and delirium too.

Poor Momma. I’m guessing this is another urinary tract infection, even though test results came back negative for infection. I have a feeling this new testing of my faith may very well be my new “normal” in Momma’s journey with Alzheimer’s.

I’ve been studying and praying through the book of James lately. If y’all pray for me, please ask God to give me joy in the midst of this trial, and to use this season of life to mature my faith-life.

 

James 1:2-4

Faith Under Pressure

2-4 Consider it a sheer gift, friends, when tests and challenges come at you from all sides. You know that under pressure, your faith-life is forced into the open and shows its true colors. So don’t try to get out of anything prematurely. Let it do its work so you become mature and well-developed, not deficient in any way.

The Message (MSG)Copyright © 1993, 1994, 1995, 1996, 2000, 2001, 2002 by Eugene H. Peterson