If I Get Alzheimer’s

Today I complete another trip around the sun. Most people get a little forgetful as they age – you know, the searching for the glasses perched on top of the head sort of thing. As I now approach the middle of my sixth decade of life, I am keenly aware that I am spending a tad bit more time looking for mislaid things, and much more time trying to figure out the names of people whose names I should remember. My sweet mom had Alzheimer’s in her later years of life, so I will confess that my own little forgetful moments cause me to think about what may be down the road for me. I suspect the day is coming when my memory will fade, and perhaps gradually vanish.

I write this post for any of my readers who are faced with loving and caring for someone they love who has heard their physician say “Alzheimer’s” when delivering a diagnosis. My dear family, I especially write these words to help you in the event that I someday hear my doctor say that dreaded word, or any other diagnosis which spells memory loss and dementia. You will likely need to make many hard decisions on my behalf – like taking away my car keys and deciding when it is time for me to live somewhere else. You were there when I made those difficult decisions on behalf of my mom and likely remember how hard that was for me. Take heart, God will give you wisdom for each decision and shed light on every step you need to take.

If I get Alzheimer’s, don’t ask me to remember; instead, reminisce and tell me stories from our past. What do you remember that we did together? Tell it again and again to me.

If I get Alzheimer’s, and I perchance do tell you a story from my past (or yours), you might want to write it down or record the story I’m telling you. I may tell you that story over and over and over again, just like your grandma did. Do you remember her talking about how she made her blue flower pots when she was in West Virginia, or how she dug the purple tablecloths out of the trash, or the stories about her wedding day? Just remember that the day will come when I will tell my story for the very last time and you will one day wish you could hear me tell it once again.

If I get Alzheimer’s, I might stubbornly refuse to bathe. The fear of bathing is the sad and stinky reality of this horrible disease. There might be a lot of fussing and crying, so let me tell you right now that when this time comes, you might find that hiring someone to help a for a few hours a day or two a week will be just the thing.

Tip: You might also find that dryer-warmed towels, blankets and clothes will calm my anxiousness. If all else fails, those disposable washcloths you can warm in the microwave are wonderful.

If I tell you I am cold, more than likely I truly am cold. In Alzheimer’s, the part of the brain which regulates body temperature and thyroid function goes kerflooey. Rather than subject yourself to turning up the furnace year-round, when you help me get dressed, start with a soft sweatshirt, then add lighter layers and keep soft blankets and throws handy.

If I get Alzheimer’s, I probably won’t remember to brush my hair. Will you please do it for me? Please use a detangling spray when you brush my mane of hair. I use a detangling brush, working from the ends and then all the way up to gently coax the tangles out. I like my hair long, but cut it short if you must. I might be mad at first, but will likely soon forget what once was.

By the way, if I tell you my hair hurts, I am not confabulating or telling a fib. When my hair gets dirty, my scalp truly hurts. It feels like bruises on my scalp, so please try to keep my hair clean. Perhaps a weekly trip to the hair salon for just a wash will be just the thing.

If I get Alzheimer’s, it might be challenging to keep me occupied, so here are some ideas for you to try. Gardening is my happy place, even if it’s just my own blue pot or three, encourage me to play in the dirt as much as I possibly can.

I also really love to work on puzzles, and might enjoy working on one with you.

Oh, and I like crafts. I once helped my grandkids create things with beads and paint; maybe, in time, it’ll be their turn to help me.

Baking was a joy to me when my mind was clear, so I might enjoy helping you in the kitchen. Even though I am old, remember that my mind is becoming child-like. What can a child do to help? Perhaps I can stir the batter, whisk the eggs, or pour in the bag of chocolate chips.

I could set the table, dry the dishes and wipe off the countertop. It won’t be perfect, but I will feel like I have made a contribution. It’s very important to feel useful.

If I get Alzheimer’s, remember that I’m a blue-jean wearing momma who likes pretty knit tops – ones with interesting details like ruffles on the sleeves and pretty buttons and lace. When you buy clothing for me, I suggest you buy two of each of my favorites. This will help you cope with me when I insist on wearing the same shirt over and over again. Unless you’re handy with a sewing machine, you might even want to buy two in the next size down, as those with Alzheimer’s lose interest in food as time goes on.

Perhaps you have noticed that I practically live in an apron. I wear one in the kitchen, while I’m cleaning, or when I’m gardening. If I get Alzheimer’s and the day comes when I become ‘messy momma’ at meals and perhaps need a bib, you might spare my dignity and try an apron instead. If I need to graduate to a bib, please make me some pretty ones…with lots of flowers.

If you can’t get me out of my pajamas in the morning and I stubbornly refuse to get dressed, just put on your pajamas and declare it “Pajama Day”! Conversely, if at day’s end I refuse to put on my pajamas, please remember that there’s no harm in wearing my clothes to bed. Unless the clothing is soiled, it truly isn’t worth the battle.

Dear family of mine, you know that I love the Lord with all of my heart and go to church every Sunday. If it is within God’s providential plan that I get Alzheimer’s, may I ask you to please take me with you to church for as long as I am able? It will do my heart good to gather and worship with my family and friends. One day you may find that I fidget too much or speak out of turn, then you will know it’s time for me to stay home with a caregiver while you go praise and worship our Lord, fellowship with your friends, and feed your soul. I’m God’s child and He will be near, whether I’m at church or at home, so don’t feel as though you are leaving me alone.

If I get Alzheimer’s, help me stay in touch with friends, be they old or new. I loved to have family and friends come for dinner. Much like your grandma did, I would probably enjoy company, but may get overwhelmed with crowds, so make it just a few. They may not understand what is happening to me, so gently explain before they come.

Remember how I used to take a photo of your grandma with her guests (or snag one off of Facebook), then give her the card to hang onto when her guests arrived. I would add their names and how she knew the people, then laminate the cards. It helped her remember their names. Maybe it would help me too.

If I get Alzheimer’s, please get me outside as often as you can. I always enjoyed walks in the park, so you might try that again. Push me in a wheelchair if you must, but let me enjoy nature and a bit of fresh air for as long as I’m able (and willing).

If I get Alzheimer’s, one day, you may find, I’m terribly unwilling to leave the house where I live. Going outside may become a terror, rather than a joy. If that day comes, try to create a comfy spot where I can sit near a window and enjoy the beauty of flowers and trees planted nearby, or a grandchild-painted birdhouse within view where a sparrow family might keep me occupied with their comings and goings.

If I get Alzheimer’s, you might like to know that I love to listen to music and would enjoy Christian radio. But if I’m anxious, you might find instrumental piano or guitar will help me to relax. I especially enjoy listening to great hymns of the faith. You’ll find what I enjoy on my Spotify.

If I get Alzheimer’s, please remember my children and grandchildren are especially dear and I hope they will visit when they are near. If they can’t come to love on me, please tell them to send me cards and sometimes include a photo for me to treasure.

If I get Alzheimer’s, I might like to carry a purse even though I don’t carry one now. When memories no longer stay tucked away in my mind, a purse might give me a handy storage space where I can pull out special memories any time I like. You might want to tuck a few of my treasures inside: little photo books filled with family (be sure to label who is who), something to color and an array of colored pencils, little books of flowers and butterflies to help me enjoy the things God made. Oh, and finding milk chocolate or a cookie in my purse would be especially nice.

If I get Alzheimer’s, the day may come when watching television is my thing. I really enjoy mysteries, but nothing super scary. Put on a gardening show or gentle children’s programming and I think I’d be content. I don’t like to watch television alone, so would you occasionally sit with me?

One more very important reminder. If I get Alzheimer’s and ever forget your name, please know that my heart still loves you and someday (sooner than you realize), the day will come when God will take me Home and make all things new, including my memory of how special you are and how very much I love you.

Tuesday’s Caregiver Tip: Busy Mind

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.

Handmade coloring cards Momma receives each week from her friend (and ours) Suzy. Each card has a special Bible verse printed within. These special cards are treasured and carried around at all times in Momma’s purse.

Thornton’s Art Supply Premier Premium 150-Piece Artist Pencil Colored Pencil Drawing Sketching Set with Zippered Black Canvas Pencil Case

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.

The church reminds her of the one where she was married in Anmoore, WV. Working this favorite 100-piece puzzle evokes memories and stories of her own wedding day. We put this one together several times a week – each time to her as if it were the first.

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.

My daughter captured this photo of her beloved grandma being too busy working a puzzle to even put her sandwich down between bites.

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.

I am thankful Mom can still read. On good days, she enjoys paging through one of her old study Bibles and re-reading notes she has written in the margins. and verses she has marked.

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!

 

Winter Drags On

Spring keeps teasing us here in Wisconsin, drawing us out of our houses for walks in the sunshine or a little time in the garden, and has us washing the salt off of our cars and sweeping out the garage. Then, BAM! Winter is back!

To think that just a week or so ago I was working out in the garden without my jacket and sometimes without my shoes Continue reading “Winter Drags On”

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