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?”

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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.

Little Things

After lunch today Momma asked me to trim her fingernails. I had been refused several times lately when it had been my suggestion. Today it was hers, so I dropped what I was doing and took care of that request.

As she happily admired her shorter nails, I asked if I could please wash her hair.

“Again? You want to wash it again,” she mildly retorted.

Now that her hair is growing longer, she enjoys twirling the ends around her fingertips, adding a little 60’s flip to her hairdo. So I countered, “Yes, it has been awhile and you’re losing your pretty curls.”

It worked. A few minutes later she was humming a contented tune while I was blow drying her pretty silver locks.

Today I’m thankful that this little thing made her happy for this little moment in time.

Tuesday’s Caregiving Tip: Accept Help

My hubby has been gone for ten days on a short-term mission trip in Dehra Dun, India. Ten days. I know, in the greater scheme of things, that’s not very long. If all goes well with travel plans, he should be pulling in the driveway in time for lunch today. His absence has made me keenly aware of all the little things he does for me that make it possible for me to care for my mom in our home. I am blessed and grateful.

More than ever, in the time that he has been away, I have also discovered how very blessed I am with friends and family. They’ve helped me clean my house, mow my lawn, and brought me dinner and companionship. These beautiful people have spent a little time with my mom so I could go to the gym, grocery shop, run a few errands, work in my garden, celebrate my birthday with my family, or take an unhurried bath. After a Facebook post about my sleepless nights, a couple of friends carved time out of their busy lives to take care of mom for a few hours, allowing me time to take a nap. One sweet friend even spent the night so I would be assured of at least one night of uninterrupted sleep.

We caregivers are made of some pretty strong stuff. But, sometimes, some of what appears to be “strength” is just a facade – a false wall of competence that gives others the impression that we’ve got it all together and that we don’t need any help. That facade is a form of pride which causes us to struggle to accept help when it is offered.

I have been hesitant to hit the “publish” button on this blog post, because I realize many of my fellow caregivers struggle with finding people to support them and give them a little respite. My heart goes out to you. As I pull my thoughts together into words to write, I am praying that God will bring into your life people who can help.

I think it is safe to say that most caregivers have heard someone say, “How can I help?” Or perhaps it sounded more like, “If there’s ever anything I can do to help, just give me a call.” This little missive is primarily written for you.  I must admit, I have heard myself reply on far too many occasions, “No, thanks. I’m okay. But, thanks for offering.”

Here’s my tip – If someone offers to help, never turn them away. Don’t put off saying “yes” for a time when you really need it. You really need it now.

I would love to hear how some of you have been helped as a caregiver, or given help as a friend. Please share your ideas and thoughts in the comments below.

 

 

Tuesday’s Tip: Whiteboards

“Aaaarrrgh! She keeps asking the same question over and over again. I’m going to go crazy! How can I handle this?”

Caregivers everywhere know full well that repeated questions are a common symptom of dementia and a frustrating, nerve-wracking, mind-numbing daily reality.

Dr. Natali Edmonds, PsyD, APBB of Dementia Careblazers has some wonderfully helpful YouTube videos which address many helpful topics for those she calls “Careblazers” – those caring for a loved one with dementia disorders. Dr. Natali addresses the problem of repeated questions here, but let me add a few tips from my personal experience related to dealing with my mother’s repeated questions.

One of the best ways to handle the problem is to patiently answer the question and remind ourselves that it is the disease causing the loved one to repeatedly ask the question. I must admit, the everyday battle eats away at my patience and drives me bonkers, with my mother’s hearing loss adding another level of crazy. My husband and I are so accustomed to having to use our loud voices to communicate with her that we sometimes don’t realize when we’re shouting at someone who may be visiting us in our home.

One of the smartest communication tools we have purchased is a simple lap-size white board and a few Expo markers. This little investment has brought great returns in helping answer the questions looping around in Momma’s brain. Yesterday’s question of the day was, “Where am I?” After verbally answering her question a few times, I just pulled out her whiteboard and wrote down, “I live with my daughter Cindie and her husband Wayne. This is our home.” Momma read the answer aloud on several occasions and seemed calmed by having her answer.

A great visual reminder

One of mom’s most often asked questions is: “What am I doing today?” I often use the whiteboard to inform her as to what is happening on a given day, writing this down for her in “to-do list” fashion. For example, if I plan to wash her hair, I’ll write it down as an item on her check-list. Also on the list are tasks she still enjoys doing, like folding laundry and drying dishes. Writing those tasks down on the whiteboard gives her the satisfaction of being able to cross off the task once it is accomplished.

Momma loves it when guests come to visit, but is visibly agitated when she can’t remember their names, repeatedly asking, “What is your name?” Writing names on the whiteboard helps her relax a bit (name tags help too). If children are part of the mix, we have their parents prepare them ahead of the visit for the fact that Mrs. Boyles will ask them the same questions over and over again. Kids always seem to “get it” and are very patient and kind, talking loudly to her and flashing their big comforting smiles at her each time they answer one of her many questions.

Mom writes notes to us too

The road to communication is a two-way street. Mom will sometimes use the whiteboard to ask a question or make an observation. Other times she’ll write down her thoughts, giving me a little window into her concerns. Many times she will write down something she is thankful for, such as the picture you see below. In this picture she is writing a little note of thanks for someone whose visit she had enjoyed.

Well, that’s my tip or suggestion for this week. I’d love to hear a few of your great communication tips! Please feel free to share them in the comments below.

A Dark Chocolate Day

Credit: fastgoodhealth.com

I’m trying to like dark chocolate. Trying, but I’m not there yet.

Not even close.

While others love it and say, “It’s healthier for you,” it still tastes rather bitter to me. Now, wrap that bittersweet dark chocolate morsel in a whole lot of milk chocolate and I’d be one happy girl.

That kinda describes my day today. A chunk of bittersweet life wrapped in layer upon layer of the sweet stuff I truly love.

My bittersweet morning began around 3:00 am with Momma waking me out of my slumber with a lot of talking and groaning. A quick peek at the video monitor showed me she was confused, asking herself questions and trying to figure out where she was. She had left her walker and shoes on the opposite side of the bed from where she usually keeps it. Just that ‘little bit of different’ totally disoriented her from being able to find the bathroom just a few feet away. Willing my sleepy head off my comfy pillow, I headed downstairs to reunite her with her walker and gently point her in the direction of the bathroom. I sat in the chair in the corner of her room bleery-eyed and awaiting her return. She needed a little extra help with navigation for the return trip, but was soon tucked safely back in bed.

As I smoothed the covers over her, she looked around the room then asked me, “Am I in the hospital?” I assured her she was at home in her own bedroom and that I would be making her a yummy breakfast in a few short hours. It took about an hour for her to settle into sleep again, and then a little more time for ME to drift off into sleep once again.

Sanding finished! Applying primer coat of paint.

The sweet layer on my bittersweet start to the day came a little later in the morning. My granddaughters Mia and Noelle, and Natalie, a sweet girl Mia’s age that I dubbed my ‘honorary granddaughter,’ worked on an art project together.

[Actually, the sweet layer began a few weeks ago when my daughter rescued a roadside treasure from the curb and delivered it to my doorstep. My Beth is well known for her ability to turn someone else’s trash into treasure.]

Granddaughter Mia models the paint color

Yesterday, I set the girls up with all the supplies they needed to turn that discarded chair into an artistic treasure. First, I had them sand the old finish off of the chair and then give it a coat of primer.

 

Later they added a lovely coat of turquoise paint. Today they worked their collective artistic magic on the turquoise beauty as they embellished it with dainty painted flowers, curly vines and beautiful butterflies.  I plan to clear-coat the elegantly appointed chair and place it in my garden as a lovely support for one of my pretty plants.

Such pretty details

I had the girls paint outside under the shade of a nearby tree where their great-grandma could watch from the comfort of her chair at the kitchen table. I hoped she would enjoy the art show. But, no. Instead, she fussed about them getting paint on them and wondered aloud (over and over again), “What on EARTH are they doing?!”

As difficult as it was to listen to my mom repeatedly worry and fret, my grandmotherly heart was full to the brim with sweet joy as I watched my grandgirls have fun painting something that I will treasure for years to come.

While I tended to the after-supper kitchen cleanup, Momma watched through the kitchen window as my husband, our son, and a sprinkling of grandgirls were having a silly water balloon fight. She tapped her fingers on the kitchen table in a futile attempt to tell them that they needed to stop that foolish craziness. My daughter Beth tried to calmly reassure her grandma and help her understand that they were having fun, that everything was okay – to no avail.

For me, the bittersweet sadness in my mom’s anxiousness was wrapped in a lovely, sweet layer of my own contentment having my grandgirls and both my son and my daughter here at the same time. I relish the moments when we eat and play together as a family.

Surrounded by Love

To help Momma relax, the water play was moved to the front of the house. Still, Momma worried aloud, “Where are all my kids?” With the exception of one granddaughter, all of them will leave tonight. Yes, my mom will anxiously wonder when they’re coming home. That makes me sad. It’s the bittersweet dark chocolate center to a lovely morsel of time wrapped in the milk chocolate sweetness of my being able to enjoy special moments with my grandkids in the midst of my caregiving responsibilities.

Tidy Mommy

“Who made this mess?”

I’ve heard Mom ask that question since I was a toddler. She still asks this question whenever she surveys the bread crumbs and potato chip crumbles all over the floor surrounding her chair at the kitchen table. It’s best not to be too forthright and tell her that SHE is the guilty party. It’s the truth, but the blunt truth would only injure her fragile mind. Many inadvertent hurts later, experience has taught us that it is best to come at the truth from the backside. “Mom, messes happen. No worries. Let me get out the little broom and we’ll sweep it up right away.”

Hiding the mess
Mummy-wrapped banana peel

My mother’s use of Kleenex tissues is almost exponential. In addition to wadding them up and stuffing her pockets and purse, they happen to be her favorite clean-up tool. Without supervision, she will wrap anything and everything in tissues that she wants to throw away (in a rare moment of clarity, she admitted to disposing of her $1,200 hearing aides in this way).

If I just hand my mom a banana to snack on, she will create a little mummy-wrap for the peel before tossing it in the trash. Surely it is a desire to help which fuels this behavior – to be busy helping is in her DNA and it bothers her to be idle. In talking with others who care for a loved one with Alzheimer’s, this behavior is common.

Kitchen Clean-up

Our experience thus far in caring for my mom has taught both my husband and I that it is best to address something that is bothering my sweet momma right away, rather than let her obsess over things. By way of example, we have learned to clear the table right after supper, or she will begin wrapping up everything in Kleenex and use still more Kleenex to wipe out the dirty dishes and clean the table. While my hubby and I clear the table, we enlist her help by offering her a warm, wrung out washcloth so she can feel useful in cleaning up after the “messy people in this house.”

Most evenings Mom wants to help with the dishes. If it’s only a few plates, I’ll let her stand at the sink to dry. It makes me nervous though, because her legs are bowed and pretty unsteady, so we improvise a bit by bringing the dish draining rack to her place at the kitchen table. It takes three dish towels to do it this way: one under the dish drainer, one to use to dry dishes, and one to set the dried dishes upon. It does take more time than if I do it myself, but it makes my mother feel as though she is contributing to the household duties in a meaningful way. You can see contentment in her face as she helps, and that makes any inconvenience worth it all.