My friend and I talked recently about palliative care and how it differed from hospice care. I recalled writing a little blog post about this subject, so decided to reblog it today. I hope that it helps my friend and anyone else who is approaching this stage in the care of their loved one. I praise God for leading me to Agrace and for the wonderful palliative and (later) hospice care my dear mom received.
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 skippinga 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.
Once upon a time, not so very long ago, I arrived at BeeHive to sit with mom during lunch. Momma was able to stay focused on eating if someone was nearby to remind and coach her. As her Alzheimer’s progressed, she had begun missing meals – sometimes only eating one meal a day – so I tried to be there during that time whenever possible. On this particular day, I was running a bit late and most of the residents were eating their dessert.
Not Momma. She had already toodled away from the table in her wheelchair and was calling out, “Billy! Billy! Where are you, Billy?” Now, I didn’t know anyone there by the name of Billy (not even one of her dolls had that name), and had never heard her call out for someone in this unconsolable way. Mom seemed almost frantic to find Billy.
I put my things down near her place at the table, then approached her and asked if I could help. “No! I want Billy!” insisted Momma. “Well, let me help you find him,” I replied. “Can you tell me what he is like?”
Momma seemed glad to have someone help her find Billy. The staff was nearby beginning the cleanup process after lunch, so I asked if any of them knew who Billy was. No one did.
Then, with tears in her eyes, Momma brought me back to the situation at hand and plead, “Please, help me find Billy. He’s my friend and he’s so kind. He helps me.”
That description was all I needed to give me a strong hunch as to the mystery of Billy’s identity. Going with my hunch, I asked one of the gals if Momma had been hanging out with Andy that morning. Why, yes! Andy had paid quite a lot of attention to Momma earlier that morning, strolling with her around the building and helping her with daily cares.
Andy is one of the owners of BeeHive of Oregon. Like the other co-owners, Josh and Gina, Andy has more than just money in the business. He puts his caregiving heart in there too.
Andy showed his interest by taking the time to notice the photos I had placed in mom’s room. As he looked them over, he would ask questions about them so he could learn more about my mother’s past – important because Momma was living in the distant past in her mind. Knowing more about a someone’s past is helpful in caring for those with any number of conditions which cause short-term memory loss.
Andy often told me how much he adored my mom. He wanted to know about her and took a genuine interest in hearing stories from her past so he could better understand what made her tick. Though Momma probably didn’t say so, she trusted him and I think she sensed how much Andy loved her.
I have all sorts of excuses for why I’ve been a little hit-or-miss in the blogging department. The best reason I can proffer is that I’ve been taking little breaks for a bit of creativity of a different sort.
First up, a very special sewing project. My son sent me a text one night asking if I would make a Christmas stocking for a teen who is staying with them. I had made a stocking for each of my grandchildren prior to their first Christmas and he was hoping Danni could have a similar stocking too. I was so very glad he asked because I had it in my heart to do something for her, but wasn’t sure what she would enjoy. This would be fun!
(Note: Healthcare marketers and communicators have always fallen short when it comes to developing a deep understanding of the patient and caregiver’s mindset. The recognition of that failing is what motivated this post.) On June 11, 2012, my father sent this letter to all five of his children. My mom had been suffering from dementia […]
This post was brought to you (a day late, I know) courtesy of Kate Motaung’s blog Five Minute Friday and the word “balance.” Writers set the timer for five minutes and then free write on the word of the week. Check out more great posts and find inspiration for writing here at Five Minute Friday.
Things have been quiet on my blog. Good sleep is rare. Interrupted at best. Most days I live life in a sleepy fog. In my exhaustion, I’m having trouble staying focused enough to write. A few of my friends have recently heard my silence and inquired as to my well-being.
My friend Sue wrapped me in a big hug on Sunday and told me that she was quite concerned. She had observed that caregiving seemed to be taking its toll on me, noting that I looked really tired. I was not the least bit offended by her basically telling me that I looked terrible. It’s really hard to cover up exhaustion. God knew I needed this confirmation of what I already knew. Sue’s concern and assurance of prayer meant the world to me.
Rita caught up with me a few minutes later and kindly inquired as to how momma is doing. This sweet friend is known for her ability to see a need and step in to help. I have been on the receiving end of her prayers wrapped in practical ministries of help. Her loving and thoughtful ways have often helped me find balance as a caregiver as she sits with my mom while I try to get some sleep, or hangout with my grandkids, or take my brother to a doctor’s appointment, or go out to dinner with my husband. Her kindness refreshes my spirit.
Yesterday I heard the familiar “chirp” of my phone indicating that I had received a text message. My heart smiled when I saw it was from my friend Barb – also my sister in Christ, and former co-worker (from way too many years ago).
“How are you and your momma doing? Haven’t seen anything on FB lately.”
It’s been more than 20 years since Barb and I worked together, but we’ve managed to keep in touch via Facebook, chats via Messenger, and occasional lunch get-togethers at a restaurant somewhere between my here and her there. It has been awhile since I’ve been able to get away and have lunch with Barb, but her little “I noticed you” via text meant so much. It felt good to sit in my favorite chair wrapped in a soft blanket and “chat” for a bit about what’s going on in our lives.
Amazing how a timely word from a friend can bring a little balance to your life when life feels weighed down and precariously listing toward one side.
This morning a message from another friend, Danielle, popped up on my phone.
You’ve been in my prayers a lot recently, especially since I haven’t seen too many posts about your mom. I know I didn’t post much about Tim as things got worse, so I’m assuming things are really hard right now.
She was right. Danielle knows firsthand what life as a caregiver can be like, as she takes care of her father-in-law in his struggle with memory loss. She walks this really hard road a few steps ahead of me and knows how to pray…and she does pray.
It’s not just these four friends who’ve helped me find balance. It’s my hubby who helps in countless ways, the friend who buys me a coffee on a whim, or the one who pops a surprise care package or a sweet card in the mail. Or the thoughtful neighbor who recently rang my doorbell and asked me to point him in the direction of something that needed to be done in my garden.
I’m so thankful for each and every one of the wonderful people God has put in my path. Through your prayers and acts of kindness, God refreshes my soul with “oasis moments” and helps me find balance in my life as a caregiver.
It’s hard to believe in less than a week hubby and I will be gathered with our kids and their families celebrating Thanksgiving. I’m personally looking forward to time away from caregiving (thankful for my sister who will care for mom while we take a little break), time with my grandkids, a little uninterrupted sleep, good food cooked by my kids and a few of their kids with a little help from me (When did THAT happen? Used to be the other way around!), and everything else that goes with spending time with family reflecting on God’s goodness to all of us.
I have so many things on my always growing “to-do list”. In my world of being a full-time caregiver for a mother with Alzheimer’s, there are days when I may as well throw my to-do list in the trash, as Momma’s needs trump my would-like-to-get-done checklist.
One thing has helped. Simply focusing on one thing at a time.
“One bucket of weeds” is doable. I can certainly grab a 5-gallon pail during one of mom’s catnaps and do a quick cleanup of one area of my garden. That one bucket often leads to two…or maybe even more.
“One load of laundry” is much more attainable than devoting an entire day to the job. It’s an on-going job that is never truly accomplished anyway…so just do ONE load now. The rest will follow.
Sometimes it does help to break my big job up into lots of little “ones”. Spending time in the garden is one of those things I love to do, but also one of the things that is HARD to do while taking care of my sweet Mom. But, truth be told, even on the worst of days, I can get ONE thing done if I create a few bite-size chunks.
Trim back the red peony and bag the leaves
Dig out the aggressive lamium
Divide the red iris
Plant a piece of the red iris on the other end of the flower bed
Trim back the clematis to 1 foot
Plant the tulip bulbs
Repaint the birdhouse (a rainy day project)
Very few of those jobs take longer than 10 minutes to accomplish. A little here and a little there. One small bite at a time. Each little job accomplished leads to the satisfaction of being able to cross the big job off the list.
There you have it. My ONE contribution.
Now, I’m going to fold ONE load of laundry before a much needed night out with my ONE guy.
Sleeping through the night is the goal of every caregiver of a loved one with Alzheimer’s. To increase the chances that my mother will sleep at night (and that I will too), one of my challenges as a caregiver is to keep her awake and occupied during “normal” waking hours.
Let me share a few of the things which I have found helpful in my caregiving journey.
Coloring – I have written briefly about the joy of coloring in the post “Tuesday’s Tip: Adult Coloring Books,”but would like to elaborate a bit. At first introduction to coloring, Momma didn’t want a thing to do with it. We bought a few “adult coloring books” and a set of colored pencils and hoped she would enjoy spending a little time coloring and less time sleeping. We had a paid caregiver who came on Friday nights and another who came on Sunday mornings. Each of these ladies enjoyed coloring, so they would get out their own coloring stuff and color, and soon Momma took interest and would join them. She’s actually quite good at it.
We soon bought her oodles of coloring books and this amazing colored pencil set. She would spend hours coloring, and even enjoyed sorting the colors in the case to her liking.
As her Alzheimer’s has progressed, her desire to color has diminished somewhat. She grows a bit frustrated by the super-detailed coloring pages she enjoyed at first, so we now purchase coloring books with bigger images and a little less detail. She has also gravitated over time to choosing just greens and yellows, so we keep her colored pencil case supplied with plenty of shades of green and yellow.
Puzzles – I’ve written about how much puzzles have been a blessing in our caregiving experience, first writing about it in a pre-blogging Facebook note titled, “Puzzled.” As with any other creative activity, if I ask Mom if she wants to do a puzzle, she’ll usually say an emphatic “No!” But, if I just sit down near her and start working on one, she’ll join the fun and will soon be pushing my hands away so she can work on it herself.
Not all puzzles are created equal when it comes to being friendly for those with cognitive or memory disorders, arthritic hands, or poor eye-sight. I am pretty impressed with puzzles by Springbok. Their puzzles are cheerfully bright and colorful and aren’t baby-ish. Puzzle pieces are larger and thicker than most puzzles, making it easier for elderly, shaky hands to handle.
Bible and Devotional Reading – Momma is a woman of faith who loves the Lord Jesus with all of her heart. It warms my heart to hear her talking with Him in prayer throughout the day and the night. Several of her well-marked Bibles will attest to the fact that she was a faithful student of the Word of God. Sadly, Alzheimer’s makes reading for understanding very difficult and Momma no longer reads her Bible like she used to do so faithfully. How thankful I am to know that even when she can no longer read, the Word of God stored up and treasured in her heart will still speak to her and bring her comfort.
Mom was always a voracious reader, but can now only read small bits with understanding, and she may read and re-read the same page for an hour. Devotional books are perfect, as each daily devotional is only a page or two in length, succinct in thought, and features just one or two verses from God’s Word. I make sure she has several devotional books to choose from whenever she feels like reading a bit.
Fellow Caregivers, let’s hear your ideas too! EnCOURAGE one another daily!
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.
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.
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.
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!
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.
Everyone tells me I need to take care of myself. “You can’t take care of your Momma if you’re not taking care of yourself.” I hear it from my family, my doctor, friends at church, my Facebook friends, and my on-line support community at myALZteam.com.
So, I’m trying to listen. I joined a gym and have been getting regular exercise, striving for 5 days a week while my hubby keeps tabs on Momma. It was the right thing to do and has been so helpful.
My concerned friends also say, “Take advantage of respite care. You need to take some time away – maybe go on a vacation.”
True again. But, I’m finding that one easier said than done.
Looking into respite care options has opened my eyes as to how difficult it is to find respite memory care in my community. I found two facilities with a room available: one would require that we bring our own bed; the other seemed perfect, albeit expensive.
Thankfully, my sister was able to arrange her schedule so she could take care of our mom while we got together with our kids and their families over Thanksgiving and again for our recent vacationing in NYC.
It concerns me that there seem to be so few options out there for someone with Alzheimer’s. I am learning that places which advertise offering respite care do not have dedicated respite care units. Rather, you fill out paperwork, have your loved one evaluated, then get their name placed on a wait list. Then you wait for someone to move out or die.
If I had the resources, my caregiver dream would be to build a respite care facility that would offer all the usual assisted living amenities, but operate a bit like a hotel, with guests staying for a few days to a month. My dream respite home would serve restaurant style meals, or bedside meals, depending on the guest’s particular need. Hallways would resemble a neighborhood street, with each door a different color, and a comfy chair or two outside on their “porch” just for sittin’ a spell and talking with passersby (you can see in the pictures below that I’m not the first to think of this).
My little “neighborhood” would have a business district too. Pampering would be a high priority with a beauty parlor and a barber shop. A little store for “buying” snacks and comfort items would provide the dignity of making choices – maybe even an “ice cream parlor” serving up a scoop of the day.
In my dream, I also see a beautiful little chapel where guests could hear the Word of God preached and sing great hymns of the faith as they worship God. I would invite churches to bring their choirs and youth group ensembles to sing too.
I envision a wheelchair and walker-friendly theater featuring classic movies with closed captioning. We would host music and dance recitals allowing young music students to interact with the memory-impaired through the heart language of music and the arts. I can only imagine the joy this would create.
Artists could share their passion – painting, jewelry making, knitting, card-making – showcasing their art form and perhaps encouraging our memory challenged guests to get creative too.
Oh, and we certainly can’t forget the gardens!
Yes! In my dream I see amazing gardens (with plenty of lilies, of course!), planted and cared for by volunteers, scout troops, garden clubs, and youth groups. Of course, there would be multiple raised gardens where guests could play in the dirt to their heart’s content.