It’s a dilemma you might face as a caregiver. The one you’re caring for customarily sent out Christmas cards. How do you help them now when they can barely sign their name? Continue reading “Tuesday Caregiver Tip: The Christmas Letter”
Just over one year ago I wrote, “Honoring Your Parents: Nursing Home or Your Home?” (I invite you to read it here.) In that piece I endeavored to describe the process which had guided my decision-making related to caring for my mother as she slipped further and further into the horrible world of memory loss. Countless decisions have been made since moving my mother from Milwaukee to our home in Fitchburg. Each decision to be made along the way was generally preceded by some sort of adversity which required a change. We prayed about each change, each process, and each decision. Our faithful God always answered, shedding light on each uncertain step.
Change is in the air once again.
Mom’s advancing Alzheimer’s and a few recent difficulties have made it abundantly clear that we need to prepare for what the next level in mom’s care might be. There have been many “nudges” toward planning for the possibility of mom’s future care taking place outside of our home setting. But three things in particular:
- A gentle nudge in the form of a well-timed question from Diane, mom’s palliative care nurse practitioner. “So, have you considered what the next step in your mom’s care might look like?” We had a good chat about that, and she gave me several helpful suggestions.
- My hubby’s trip to India. I had to ask myself what I would do if something happened to him and he could no longer help me. Even though my family and friends rallied to help me out during his trip, it became very clear that caring for mom on my own would be at too great a risk to my own health and welfare.
- My own frailty. I took a fall down a short flight of stairs in my own home. Aside from a scrape to my leg, a few sore muscles and toes, the greatest injury I sustained was to my own pride. The fall served as a wake-up call causing me to consider how Wayne would care for mom if something happened to me.
In the past year, I’ve looked at the websites of many assisted living places, have talked with a few representatives on the phone, traded emails with yet a few more, and even toured three that I liked and thought might be able to at least provide some respite care. In each case, I could not imagine my mother living there. After my little chat with Diane, I looked into a newer one she suggested and rated very highly. BeeHive is a 16-unit specialized memory care facility designed to look and feel very home-like. It is ideally located in Oregon just a few miles down the road from us, and about a mile from the nursing home where my brother resides.
Wayne and I scheduled a visit in early September before his trip to India. I was favorably impressed as I watched staff interact with residents. Compassion and respect were palpably present. We met Gina and Andy, two of the owners, and felt their pride of ownership and desire to serve their residents.
Standing on the sidelines, I watched one sweet lady receiving a hand massage. As the aide gently applied lotion and stroked her delicate hands, she looked into this resident’s eyes and spoke with her like she was a familiar friend. I knew in my heart this was the right place. A puzzle was in the works at a nearby table and I could hear one resident talking to another in friendly banter. Yes, I could definitely picture my dear Momma sitting at one of the tables, working on a puzzle and telling (or re-telling) one of her many tales.
After some discussion and prayer, we decided we would put down a deposit to reserve a place for mom. She is currently number four on their wait list. While it is still my heart’s desire to keep my mom at home with me until God calls her to her heavenly Home, I have great peace knowing I have another level of care reserved for her. My greatest comfort comes in knowing the One who is guarding our steps as He walks before us paving the way for whatever our future holds.
I know in my heart that my dear mother would skip along to heaven tonight if she could. Nearly every day she tells me so. Momma’s greatest comfort comes in knowing that Jesus promised He has a placed reserved for her in heaven.
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.
Our son Matt and his family are hosting our family’s Thanksgiving celebration this year. This is the second year they’ve hosted us in their splendid home set on the bluffs of the Mississippi River in Hampton, Illinois. I enjoy helping out in their spacious and well-appointed kitchen.
I am thankful my sister is hanging out with mom so Wayne and I can get away from the responsibilities of caregiving for a few days.
What a blessing. God bless her.
On Sunday my daughter mentioned she is bringing the pies…lots of pies. I hear there will be pumpkin, French Silk, and chocolate pecan. On Monday she stopped by my house to borrow a few extra pie plates and Tupperware pie carriers.
Lord, help me.
Knowing Beth will be the bearer of pies made me wonder what I would be bringing. Other than an email asking for my stuffing recipe, I hadn’t heard whether I should bring anything. I sent my son a text which read
Did I miss a memo on what to bring for Thanksgiving?
His reply –
Just yourselves! 🙂
Wow! Another life change happened when I wasn’t looking. Not cooking anything for Thanksgiving?
When did that happen?
Wasn’t it just yesterday that THIS happened?
I found these photos while working on a long overdue project of creating some family photo albums. Matt must have been 4 years old and Beth almost 2, so it must be 1981.
I love everything about these memory evoking photos. The teeny tiny kitchen in our first house on 49th Street. The hand-me-down kitchen table and chairs from my in-laws. The 1950’s wallpaper. The orange tiles on the kitchen floor. Our tiny refrigerator barely had room for the turkey to thaw.
At the corner of one photo I spied the shelving Wayne custom built for our itty-bitty kitchen. The shelf now has a couple of coats of blue paint on it and sits in a place of honor on our three-season porch holding memorabilia of years past. As I examine the photo below more carefully, I see on one shelf a turtle cookie jar (I used to collect turtles), which I have since passed along to my son.
Thirty-seven years later, I still use that very same turkey roasting pan…and the brown-striped kitchen towel!
I love Matt’s facial expression as he examined his messy little hand after helping stuff the turkey. I think we need to recreate this photo.
And my little blonde sweetheart Beth! Look at the cherubic face of my little helper. Be still my heart!
These old photos have taught me the importance of capturing images of special moments we have together as a family. Tomorrow we will have Matt and Beth and their families gathered together in one place.
And I will have a camera.
Eventually, with very few exceptions, all those afflicted with Alzheimer’s lose the ability to remember names. In the beginning stages, it’s an occasional inability to remember the name of a friend. Somewhere in the middle stages of this mind crippling disease, my mother began having more trouble with names. I noticed names scribbled in notebooks, on church bulletins, on 3″ x 5″ notecards, and backs of envelopes. It was her tool for hiding the fact that she was beginning to forget the names of her close friends.
Momma belonged to a group of ladies from her church who called themselves “The Lunch Bunch.” Each lady friend took turns choosing the destination for their culinary adventures. It was a sad day when Mom decided she could no longer meet up with her friends. She told me it was because the lunch venues were so far away. In retrospect, the unspoken truth was Momma was embarrassed she could no longer navigate driving to unfamiliar places. Even sadder and more difficult to admit, remembering the names of her closest friends was becoming impossible.
Our church family has become Mom’s surrogate church family now that she lives with us. My mother enjoys visits from her new friends, but is nervous about not knowing their names. To ease her transition toward knowing the names of these new friends, I borrowed an idea from a friend I’ve never met who lives in Yorkshire, England. A fellow caregiver to her own mother with mixed dementia, Heather and I “met” on Creative Carer, Heather’s Facebook page dedicated to inspiring and giving ideas to caregivers for those living with dementia. Our mothers seem to be travelling parallel paths in the progression of their individual journeys in the uncertain world of dementia. Heather is amazingly creative in her approach to caregiving, capitalizing upon her mother’s lifelong passion for all things artsy and crafty (you’ll also find many creative art therapy ideas on Heather’s blog here). As her mother’s memory began to fade, Heather created some laminated pages for her mum, depicting life events, useful information, and snippets of joyful events that had happened in her lifetime.
With Heather’s brilliant idea as seed thought, I made some little laminated photo cards mom could keep in her purse. Each card has a photo of friends and family who come to visit, with names written on the card and perhaps a little reminder as to how mom knows that individual or family. I love seeing Mom discover these cards in her purse. It’s a perfect sundowning activity for her, as she loves to go through the contents of her purse during her late-night purse rummages.
Whenever a new friend comes for a visit, I take a picture of them with my mom, then create a card for her before their next visit. About an hour or so before a guest’s next visit, I take that card out of her purse and show it to her. She really appreciates having the card as a reference.
Next project on the horizon: create a few cards featuring her childhood, family, nursing school and wedding. Memories from her early years are still relatively intact; these cards may help Mom tell (and retell) her stories to visiting family and friends willing to sit with her for a moment and listen.
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!