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.

Alzheimer’s: When Harsh Words Fly

I work a few days each week as a baker of all things sweet at a beautiful assisted living and memory care home – the very same place where my dear mom spent her last year on earth. The people who reside here are placed for various needs, most of them needing more help than family can provide with matters related to living life with short-term memory loss. In my short time there as an employee I am getting to know and love each resident, but I do have a few favorites. One of those favorites is as sweet as she is feisty. One minute she can be doling out compliments and kisses, the next she’s telling me to stick my mixer where the sun don’t shine.

But I love her to pieces.

I think she holds a special place in my heart because she reminds me in small ways of my mom (pictured here), who also had some bad days as she wrestled with Alzheimer’s in her later years of life.

In the years before Alzheimer’s, my mom was never one to use foul language; the worst I ever heard come from her mouth when I was a kid was an under her breath, “Shhh-ugar!” Yet, in the throes of the later stages of Alzheimer’s, my mom would occasionally make me blush with her language. If she were in her right mind, she’d be truly embarrassed.

Not long ago my new friend had a really bad day — I knew from the minute I walked in the door that morning that it was going to be a doozy when she began swearing at me for just saying, “Good morning.”

When any of our residents are having a bad day, I can’t really help much, as I’m “just the baker” and not directly involved in resident care. However, there is always one thing I can do. As my hands keep busy at the work of baking desserts, I can pray for those caring for the special needs of the residents. On that morning, I prayed for everyone involved in doing what was best for her, each one doing so with compassion and grace. All the while, I fought back tears for this dear woman who was living out one of my biggest fears for my future. You see, I struggle with the fear that Alzheimer’s may one day strip the filters from my tongue and that I might use uncharacteristically foul and abusive language.

So, how should caregivers deal with the foul language issue in their loved one with dementia? To answer that question, let me share a link to a super-helpful article from Very Well Health which discusses this problem and lists many suggestions. You’ll also find some internal links to explore on related issues: Relationship Between Foul Language and Dementia

My personal go-to tactic is the one in this article called “Redirect and Distract”. Where my mom was concerned, I would say something like, “Are you hungry? Would you like me to fix you a sandwich?” My mom loved sandwiches, so I kept a little stash of halved sandwiches in the fridge.

Other times I would distract her with an activity. I’d just walk away from her angry outburst and grab her coloring books and colored pencils and begin coloring. Nine times out of ten, she’d join me in a few minutes.

Coloring cards Momma received in the mail each week from her friend (and ours) Suzy.

Another thing I did on many occasions was to grab my collection of buttons and pour them out onto a towel on the kitchen table. I’d just quietly start sorting the buttons into color groupings, or line them up in rows. Mom could not resist this little sorting activity. Before long, she’d be calm and would join me.

Sorting buttons was a favorite calm-down activity for my mom

I wrote about these two and several other activities in my post Dementia Friendly Activities. The key thing was for me to be quiet and resist the urge to argue or add defensive words. Talking during one of her outbursts would only add fuel to the war of words raging uncontrollably in her head.

My friend at work has a similar calm-down button: her sweet tooth. I can sometimes redirect her downward spiral by offering her a cookie.

Since I’m the baker, I’ll sometimes say, “I need your help. Could you taste test this for me?” My friend also likes a slice of buttered bread with a cup of milk. Paying attention to what she enjoys and asks for in her calmer moments equips me with ideas for dealing with the tense moments.

Proverbs 31 Woman

While I dread the thought of ever having Alzheimer’s, I do trust the Lord with my future knowing that He will provide what I need should this be in His plan for me. It is my prayer that the Lord will keep my tongue sweet and gracious, and that the “law of kindness” will always be on my tongue. (Proverbs 31:26)

Alzheimer’s: Signs Along the Way

My dear readers, I think it’s about time to meet up for another cup of coffee and a chat. I thought we could talk about a question I am often asked.

What signs did you see that made you suspect that your mom was experiencing memory loss?

One place to start when gathering information about Alzheimer’s is the aptly named Alzheimer’s Association. You can click here for their Top 10 list of signs, but here’s my list of signs we noticed along the way:

  • Repeating stories multiple times at the dinner table.
  • Piles of stuff all over the house – very unusual since she was normally very tidy. The guest room bed was covered with several inches of mail and miscellaneous paperwork.
  • Finding everyday objects in odd places: her cane propped up against the fridge on her countertop; her purse in the fridge; keys under her pillow; toothpaste and toothbrush on top of her dresser; odd stuff in her purse…like banana peels wrapped like mummies.

Mummy-wrapped banana peel from Momma’s purse

  • Asking the same question over and over again.
  • A very messy calendar with lots of ‘White Out’ covering myriad mistakes (and her complaining that someone else was writing on her calendar).
  • Mom had always been a list-maker and would usually keep her lists in an organized notebook. Now, her lists were everywhere! You could find her notes to self on the backs of envelopes and snatches of paper; in multiple notesbooks or legal pads; in the margins of her calendar, etc.
  • Missed hair appointments. Her weekly hair appointment had been her habit for decades – it wasn’t like her to miss one.
  • Everyone loses their keys from time to time – believe me, I know! But the key hunt became a daily routine (sometimes several times a day) because she would hide them where they’d be safe.

Our solution to the hidden keys problem was to attach a “tile” which would allow us to use an app on our phones to find them. (Click here for info)

  • Ordering multiple sets of checkbooks; we counted five separate sets of checks for one account.
  • Hiding her checkbooks.
  • Unbalanced checkbooks and a dining room table littered with bank statements with notes of confusion written on each one.
  • Over-purchasing other items too: toilet paper, ballpoint pens, Kleenex boxes, dishwasher soap, spiral bound notebooks, and legal pads.
  • Repeating stories. Oh, I think I already said that.
  • Phone calls from neighbors reporting unusual behavior, including a concern over momma being outside ALL day in pretty much the same spot. And another with concerns about her driving.
  • A diminished desire to attend church or get together with her friends.
  • Hidden stashes of food – especially cookies and chips. We would also find partially eaten food here and there around the house. It made me nervous to think she might pick up spoiled food and begin eating it again.
  • Multiple cans of Coke begun, but not finished.
Momma can’t remember she already has a can of soda open.
  • Unflushed toilets. Mom had always been VERY particular about remembering to flush toilets.
  • Inordinate amounts of junk mail.
  • She somehow got suckered into two vehicle protection plans and two sewer and waterline protection plans. Unfortunately, she never used them because she didn’t realize she had them.
  • She kept renewing her magazines, even if she had YEARS left on the subscriptions.  
  • Losing large sums of cash. She once took $1,500 out of the bank for a vacation I was taking her on, but lost the money somewhere between the bank and home. We never did find that money, and her credit cards were in the same wallet.
  • Hiding valuables and claiming they were stolen.
  • Growing frustration with using a telephone or a once-familiar remote control.
  • When dining in a restaurant, she was no longer able to calculate a tip. Mom had always been an adventurous eater who was always game for trying a new restaurant. Whenever I would visit, she began going to the same restaurant and ordering the same thing each time. Or, without opening the menu, she would say, “I’ll have what she is having.”
  • Eating an entire carton of ice-cream in one sitting (we started buying it in pints and half-pints).

Most of these changes were subtle, but they began to add up. Somewhere in the middle of all of these changes, I knew in my heart it was time for me to make sure I invited myself to my mother’s next doctor’s appointment. I knew that he and I were going to have to become allies in my mom’s future care, so I stopped by her physician’s office and dropped off a copy of my power of attorney for healthcare paperwork so that they could be scanned into her record. I also wrote a letter to her primary care physician outlining my concerns. Now we could begin the process of me being in the loop related to care discussions and decisions. It was a hard step, but a necessary one.

Well, it looks like my cup of coffee is on empty and I did all the talking. Sorry about that. If I may ask, if someone you love has Alzheimer’s, what were some of the signs YOU noticed in your loved one?

Alzheimer’s – Sensitive Topics

Sometimes I wrestle with whether or not I should write about something related to caring for a loved one with dementia. Some things just feel too private, too personal. In writing about an especially sensitive topic, I wonder if I will dishonor my mother in some way. I’ve wrestled earnestly with today’s topic for these reasons and more. However, as I speak with others who are caring for a loved one suffering from memory loss, many of them are dealing with the same thing. So, for the sake of those who need to know they’re not alone, here’s the topic:

Swearing.

As Mom’s battle with Alzheimer’s dementia intensifies, so does the bad language and harshness of the tongue. Those who help provide her care each day assure me she is still incredibly sweet – they love, love, LOVE her to pieces. They tell me that when her tongue gets sharp, she almost immediately apologizes and layers on the salve of kindness.

Before Alzheimer’s, Momma would never swear at someone. In a moment of frustration, she may think a curse word in response to a frustrating situation, but she would never say it out loud. She would quickly reign in her frustration and replace it with graciousness.

With Alzheimer’s, the filter on the tongue is missing. My sweet mother’s ability to reign in her emotions and frustrations is broken. With arms flailing, out come the curse words when her caregiver tries (sometimes in vain) to help her shower or get dressed. She’ll even blurt out curse words at me, the one who provides daily love and care for her.

It hurts my heart to hear her swear and say ugly, mean-spirited things.

Before Alzheimer’s Momma’s tongue held kind words, not critical and harsh ones. Her tongue reflected her actions and her love for her Savior; she was gracious and benevolent with both. She’d never blurt out what she thinks. She’d just smile and keep her thoughts to herself.

I know it’s the result of this disease. But, I also see very clearly that the curse of the sinful nature we are all born with is uncovered and revealed by this relentless and wicked disease. I know in my heart how much my mother loves Jesus. And I know how immersed she was in the Scriptures and what a prayer warrior she was before this disease stripped her mind of the ability to recall the things she has learned.

I always hoped that she would defy the odds of this disease and never forget the Scriptures she has learned. But now, it seems, she cannot understand what she is reading and tells me that the Bible I keep on her nightstand isn’t hers, even though it is filled with her own handwritten notes, prayers and thoughts.

I always hoped that music and the great hymns of the faith would be a help and stronghold for her in her later years. But she is usually quite ambivalent to it – although her poor hearing might play a role in that.

I always hoped she wouldn’t forget that she is a child of the King. On this last unfulfilled hope – she has forgotten, but God has not. She is His child and He knows it. He remembers her and will never forget – never forsake.

Someday, when all is made new, music will be restored and she will sing a new song in heaven. Best of all, she will meet the One she read about in Scriptures and has trusted by faith – Jesus – the living Word.

Alzheimer’s through a Great-Granddaughter’s Eyes

Let me introduce you to Violet. This granddaughter has held my heart for 15 years now and I am quite certain she has a special place for me in her heart too. Any time we spend together is special.

Not only does she love me well, but she also has a special softness in her heart for her memory impaired great-grandmother. Violet goes out of her way to be a bright spot in my mother’s day as often as she is able. Most recently she wrote a few letters to her and asked me to slip them in her purse every now and then so she had something new to read. On other occasions she will come with me to visit her GGma.

Violet and I share in common a love for writing. I love reading what she writes and especially love finding her thoughtful notes sprinkled liberally throughout my house. On a recent visit, Violet picked up a pencil and a notepad and poured out some thoughts on paper about Alzheimer’s. I asked for permission to share them on Barefoot Lily Lady.

Alzheimer’s
By Violet Cynthia Schultz

Family becomes strangers
‘Home’ becomes lost
Books become confusing
Memories become a maze.
Guests become intruders
Flowers become weeds
Shouts become whispers
Old stories are forgotten
making them new again.

Yet the smile of a stranger
can still brighten up the day
Help from a friend becomes a blessing
when you’re lost.
The old photo album
jogs memories new and old.
The surprise intruders
become a highlight of the day.
The countless weeds
spark the old passion of gardening
And the whisper of a voice ensures
comfort, rest, and security.

Change is in the Air

 

God used last year’s hospitalization to help me see Mom needed to live with us.

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.

Five Minute Friday: Balance and “Oasis Moments”

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.

 

 

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.

My Caregiving Dream

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.

It’s true.

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.

Me and my guy in NYC

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 Dream 3
Photo credit: sixtyandme.com

My Dream 2
Photo credit: tsomides.com

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.

My Dream 1
Art Therapy

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.

 

Dirt Therapy
Dirt Therapy

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.

I can dream, can’t I?

Losing Ground

My brother and I spent our morning and afternoon yesterday wandering the halls of the William S. Middleton VA Medical Center for three appointments. It’s nice to spend a little time with him. My brother is normally a bit reclusive in nature and doesn’t have much to say, but he’s such a nice guy with an undercurrent of humor that takes everyone by surprise, and a belly laugh that just infuses the room with a bit of joy. Yesterday, at each appointment, he found it belly-laughing hilarious to make sure everyone knew I was his OLDER sister.

He may be younger than I am, but I’ve been noticing some subtle changes in Brad lately. For instance, it’s harder for him to transfer from his wheelchair to either his bed or the car. When he goes to the VA Hospital he has to state his name, date of birth, and last four numbers of his social security number quite often. The pauses are getting lengthier as he searches his brain to recall the information. Sometimes he’ll look at me with a “was that right?” look in his eyes.

Brad’s trouble with memory loss is different than Momma’s, in that it is vascular, most likely due to mini-strokes. Brad’s heavy smoking history may have played a significant role in this. We’ve known about the strokes for about two years now, but yesterday, I felt his memory loss was more significant. At 10:00 am he had a vascular ultrasound performed on his lower legs to check to see how his diabetes has affected his circulation to his feet. At 11:20 am, when questioned by the podiatrist about how the test went, he couldn’t recall even having had the ultrasound less than an hour and a half ago. Then, during his afternoon routine  retina injection appointment, I noticed he  had trouble with following the doctor’s simple directions like “look up and to the left” or “look down and to the right.”

It’s really hard to watch both my mom and my brother losing ground in their short term memories. As difficult as overseeing their care is, I realize I’ve been given both a huge responsibility and an even larger privilege in caring for both of them.

Years ago (I was probably 12 years old), I remember Dad taking me aside when Brad was having an especially hard time with his school work, telling me, “Be nice to Brad. Try to help him out. Everything is just a little harder for him.”

I think my Dad would be happy to know I was listening.