Downsizing with Dementia

I’ve been in the process of a little ‘downsizing’ at my house. Fueled by the experience of having moved my mother out of a home she lived in for 52 years, I’ve been steadily going through closets, drawers, cupboards, the garage and basement…anywhere the seldom used ‘stuff’ I’ve accumulated through the years might be lurking.
It made me think about this little Facebook note I wrote –unbelievably, almost two years ago. We’re now a few chapters further into Momma’s story of her life with Alzheimer’s, with her now residing with us in our home so we can care for her full-time.
I am re-sharing this as a reminder to myself of how God has been present at every juncture of this journey. It is also my heartfelt desire to bring encouragement and hope to someone else on a similar journey in life.

Continue reading “Downsizing with Dementia”

Tuesday’s Caregiver Tip: Busy Hands

One of the biggest challenges of every caregiver is keeping their loved one occupied, feeling productive and useful. I would like to share three things we have discovered my mother enjoys.

Mom’s knees aren’t real stable, so standing for any length of time is difficult. Though I could do the job faster myself, it helps her feel productive if I allow her to dry dishes for us. We set out a towel at the kitchen table, then put the dish rack on top. She has fun sorting, matching and stacking the dishes and flatware as she dries. Mom is very thorough – even drying the dish drainer when she is finished.

Drying Dishes

Someday I would love to make a quilt. My Pinterest board, Quilty Crafty Ideas,  attests to the fact that I’m particularly drawn to scrappy-looking quilts. One day I lugged my sewing machine upstairs from my basement sewing room to the kitchen table so I could keep an eye on Momma and enjoy sewing for a few hours. As I sewed scrappy squares together in pairs for a future project, I discovered quite by accident that my mom enjoyed playing with my fabric squares. I gave her a small pair of scissors and let her snip the threads which connected the pairs. She was happy and content for the entire afternoon.

Sorting fabric squares for quilting

I have a nice little button collection. My grandchildren love to have me dump them out on the living room floor and we can while away an hour or more playing sorting games and choosing favorites. It dawned on me that mom might also enjoy this tactile sensory activity too. I dumped them on a big tea-towel on the kitchen table and mom spent about 3 hours playing with them. I gave her a bunch of little dishes and she sorted them into color families. Sometimes she would look for buttons she particularly liked and then line them up all in a row. Occasionally she would see one that brought back a memory, such as the black buttons that she thought used to be on one of her coats. Button sorting has become a regular activity.

Sorting Buttons

I’d love to read about your activity ideas too. Please do share your favorite activity in the comment section below.

Caregivers, be encouraged to try something new and keep pressing on!

 

Growing in Patience and Kindness

“For when the way is rough, your patience has a chance to grow. So let it grow, and don’t try to squirm out of your problems. For when your patience is finally in full bloom, then you will be ready for anything, strong in character, full and complete.”   James 1:3-4 (TLB)

Awakening from a decent night’s sleep, I pushed ‘snooze’ to buy myself just a few more minutes beneath the covers before throwing on my workout clothes, grabbing a quick breakfast and heading out the door to the gym. I remember being grateful for six hours straight of good sleep. The serenity of my cozy space beneath the blankets was quickly invaded by the sound of Mom’s voice on the video monitor on my nightstand. I distinctly heard her say, “Oh, no! Oh no! Oh no-no-no!”

That’s usually not a good thing. Continue reading “Growing in Patience and Kindness”

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.

Waking Up on the Wrong Side of the Bed

Sometimes my Momma gets up during the middle of the night and wanders around in her room – typical “sundowning” activity. From my comfy bed, I can keep an eye on her via camera on the monitor I keep on the nightstand. I’ll sleepily watch as she opens and closes drawers, switches the contents of one drawer to another, fiddles with knobs, looks through books and photo albums, and arranges and rearranges things in her purse. Once she is satisfied all is right in her world, she’ll generally go back to bed on her own and I can go back to sleep knowing she is safe. That having been said, if I see her walker on the left side instead of the right side of her bed, I’ll sneak down after she has drifted off to sleep and quietly switch it (and her shoes) over to the opposite side of the bed.

img_1028-1The familiar idiom, “waking up on the wrong side of the bed” usually refers to someone having a bad day right from the start. In Momma’s world of Alzheimer’s, it is entirely possible to very literally “wake up on the wrong side of the bed.” It’s interesting how a seemingly teeny difference of throwing her legs over the opposite side of the bed when she awakens will cause her day to begin awry.

Waking up on the wrong side of the bed means she sees a different view and doesn’t know where she is at all, and will often cry out, “Where on EARTH am I?”

Waking up on the wrong side of the bed means she won’t know where her shoes are. She’ll fuss and fret and say repeatedly, “Where are my shoes? Who took my shoes?”

img_4948
A very important door to be able to find.

Waking up on the wrong side of the bed means she will have great difficulty finding her way to the bathroom situated just a few steps away from her bed. Instead of being down the little hallway right in front of her, she’ll have to walk those extra steps around the end of her bed, causing her extra discomfort and pain in her already painful feet and knees, which definitely increases her risk of falling.

Moving her walker to the ‘right side’ of the bed is a very small kindness I can do to make her daily journey with Alzheimer’s a little more familiar, navigable, and comforting.

What small acts of kindness make your loved one’s world a little easier? Please do share in the comments section.