Watching the leaves fly, hearing the wind whistle, visible joy in Joy’s watchful eyes.
I was able to visit mom for the first time this weekend. All staff and residents gave had their 2nd COVID shot. One care provider per resident may visit from time to time after passing a rapid COVID test and temp check and is them walked directly back to the residents room.
It was good and emotional to see her. She looked great and her room is nice.
It was the day after that became a problem. She was very upset that I had looked through her drawers, although I’d asked permission, and she’d given me her permission first. When we talk on the phone, she keeps telling me certain things have been stolen. I found everything. I can stop purchasing them repeatedly for her. I thanked her again for letting me do so. This didn’t go well because she has no memory of telling me anything was ever stolen. She called me a liar. That is common of this condition.
She has very different memories of before and after arriving at North Woods Village. She chooses to remember being at home as a happy place, where she did not need or take any medications, she cooked all the meals, did all the cleaning, and enjoyed life to the fullest. Since she insisted we do our own laundry, clean our own rooms, learn how to cook to help with dinners, and help with household chores, as well as farm chores, by 10 or 12 years old, she hasn’t taken care of the house all by herself for many decades. She also hasn’t cooked a meal in nearly a year, but she has taken some medications, although irregularly because she argued with me about them every single day. This is all typical of the condition.
Most important, the reality is that she was not happy at home. She is very welcome to recall that she was happy, but that is simply not the case. As sad as she gets not living at home now, it is no where near the level of daily anger and hostility she had when she did live at home. It exhausted both of us physically and mentally. I know the anger came from losing control of her mind and understanding her finances and her ability to care for the house. It’s hard to not be 100% in control on all fronts and then to not understand why. With Alzheimer’s, you don’t know what you don’t know. And she doesn’t know or believe that she has Alzheimer’s. This is typical of the condition.
There were many other things as well that I had done wrong during our visit that she pointed out on the following morning’s call. All in all, it’s just more evidence that she’s at the best place possible. She does her best to find reason and make sense with this mind altering disease. She loves seeing people up close and personal, and she dines with people, participates in activities with people, and talks with a number of people in person every single day now. I’m glad she has a safe place to rest her weary mind. I’m glad she has happiness again.
Wrote late February:
This has been quite the year … and we’re not even through February. I’ve been trying to call folks to let them know of a huge change in our lives, but I’m terrible about phone calls. I’m also dealing with depression and anxiety. So, I’m making it official here to share this news. I do still plan on sending out the Christmas letters I printed in early December as well as a note updating on this life enhancing change:
I have honored my mom’s plans that she laid out clear and plain in 1997. She and dad purchased long-term care policies that summer. Every year as she paid the annual premium, she reminded me of the location of the policy, their contact information, and that I was to use it when her care became more than I could handle at home. My mom has moved to North Woods Village, a memory care home, specializing in Alzheimer’s care. It is new and beautiful. They have activities all day long. I haven’t heard her this happy on a regular basis in years … several years. This is a win-win for both of us.
We talk almost every day, as she has her own phone. It’s a special Alzheimer’s phone, so she may only make and receive calls. If you wish to be one she calls, I can add in about 15 more people. Although she prefers people call her after 7 p.m. She doesn’t call folks like I thought she would because she doesn’t want to inconvenience them. Before phone calls though, she wants to participate in all of the day’s activities and have a walk with Kathy, the woman across the hall from her, after dinner. Then she’s ready to enjoy the sound of your voice. You may also write to her. Please contact me if you wish for her contact information.
This move was difficult, good, exhausting, emotional, and greatly beneficial to her physical and mental health and mine. Seriously, I haven’t seen smiles on her like this so frequently in years. It’s a beautiful thing. This is a blessing on the journey of Alzheimer’s that we never dreamed we’d take. Ever. Never. But here we are, doing the best we are able, with a heart and gut wrenching disease. Leaning on the love God provides.
One fun adventure in Alzheimer is accusing people of stealing. The books warn of it, the doctors too, and it’s so very true. Those closest to the loved one (LO) with Alzheimer will be accused of stealing things.
Every day, my mom thinks someone (usually me) stole something or other. Her underwear, a favorite pen or mirror, a single shoe, the milk from the fridge (that’s behind the juice), her remote control (wedged in the chair), the phone (in the fridge), her purse, the mail from the mailbox that’s in her hand, and the list goes on.
For us, unfortunately, she thinks a family member stole her tractor. Not only did that person not steal the tractor, it’s actually more heartbreaking: she doesn’t recognize it. The tractor is just fine, in the barn, being well cared for and still used to farm. She never learned how to drive it, but dad had bought it in her honor, thinking she’d be willing to learn. No deal, but she remembers that he loved her. It’s better she remember that than the tractor.
I should have figured it out sooner, because a few months before she had said I stole her adding machine. Umm… no, I use Excel on the computer or a calculator on my phone. She had it on the dining room table, had been using it for days, and a couple of days later, she brings it into the office I work in at home (a bonus for me with COVID, because I love working at home), and screams at me asking why I stole her adding machine and gave her this crappy one that she can’t use. Well, just like the tractor, she didn’t recognize it as the one she’d been using in the dining room for two days … and has owned and used about two decades.
Unlike the tractor and the adding machine, which are fairly painful subjects around our house because she still believes they were stolen, even though the issue is that she no longer recognizes them, and becomes instantly angry, there is good in this that is fun for her. Not everything is extreme in the bad.
She finds new clothes in her closet (that she’s had for decades, but so what). She finds a new toothpaste in her bathroom (half used by her these last few weeks, but she’s happy, so that’s good). She sees an article in the Parade magazine that’s really interesting (she’s read parts of it to me about a dozen times over the last two weeks). The picture on the wall must be new, and she really likes it (which is great because she picked it out a few years ago). She finds a stash of chocolate by her favorite chair (put there by her a few hours ago).
Other good things are that she sometimes knows people she hasn’t seen in years. She remembers where this or that Christmas tree ornament came from and when. She doesn’t remember having a certain food, but finds now that she loves it (she’s always loved it, and I get it for her on purpose). She wants to be active, go places, and do things. There is still joy in her. We will go to see more Christmas lights, and if she wants to see the lights in Bronson Park again for the first time every night the week of Christmas, that is what we will do.
The goal is to see the humor or joy in everything, while trying to ignore the sad, bad, or upsetting, because that serves no one. I am no good at ignoring the sad, bad, or upsetting yet, but I will keep trying. Our family and friends give us both strength. Everyday is a new day to both of us to try and try and try again. It’s no easy path, and I do not wish this disease on anyone. No. One. Ever.
Ah, Alzheimer’s. There is so much to learn about you. I read, and I listen to caregivers (past and present), and I listen to doctors.
Aspects of this disease:
- Cleaning the random glove drawer in the laundry room. Matching those that are alike together. Separating out the lonely gloves. Dumping them all back in the drawer much as they were before.
- Delighted when a friend or family member calls and telling everyone about it for days. Everyone being me, and I may hear about it a dozen times, but she’s happy, so it’s okay.
- Forgetting where to put away the clean dishes, even the ones you’ve had on the same shelves for decades.
- Having the home health aide wash the dishes for her, and she is like a teenager getting out of a chore (even though she claims to love washing dishes), and telling everyone “the aide did the dishes”.
- Looking at a piece of mail (junk, bill, etc.) for hours over and over. Asking the same questions about it. Writing notes all over it. Picking it up again days later and starting over. And if you cannot find it (I had hoped that hiding it would stop the cycle), freaking out because it is now missing. (Usually junk mail or a explanation of benefits for insurance – when no payment is yet due.)
- Being delighted beyond measure that a favorite item in the grocery store is on sale.
- Buying the same grocery items repeatedly (thank goodness for Loaves & Fishes taking donations of food items): mayonnaise, soups, canned vegetables, bread, tomatoes, and celery.
- Thankful that her indulgences are small. She loves to go to the Discovery shop and buy clothes or household items on sale (they are already reduced since they are resale, but something is on sale every month too). We can’t try clothes on now due to COVID, so any that don’t fit are either donated back to the Discovery Shop or are donated to the Free Store. Somebody wins no matter what.
Emotional Support Cookies
I am not a firm believer in Emotional Support Cookies. This is not just a figure of speech, but a reality that is helping my mental state.
My first Emotional Support Cookies in life came from my friend Stacy. Over the years, she has sent me cookies or granola or sweet bread when I needed it the most. I hadn’t thought to give the concept a name, but it worked then, and it works now.
More recently, my friend Nickey gave me two dozen Emotional Support Cookies. Times were very bad with the Alzheimer’s, and she was worried about me. She set about baking, and I was blessed with her delicious and moist chocolate chip cookies.
Now I am going to order my favorite cookies from Chris. Chris’s family goes on Mission trips, and she has sold baked goods to raise funds. She doesn’t have a fund raiser now, but I will see her next weekend. I reached out, and she’ll bring two dozen of her super thick, moist, sugar cookies with her soft and creamy frosting. They will arrive just in time, since I should run out of my ration of cookies from Nickey about then.
I know: sugar. Yep, I am indulging in a sweet treat and calling it Emotional Support. So be it. My weight is not fluctuating, and if anything, I’m losing weight. My blood sugar and triglycerides are good (or are they the same thing – I get that stuff confused). Furthermore, to help my mom’s mental capacity, we are eating more fruits and vegetables than ever before. The meats are lean. The veggies and fruit are usually fresh. A cookie or two a day is a mental boost that makes my world better.
These Emotional Support Cookies aren’t just a sweet treat. They are from friends who have been supportive, loving, and generous. When I enjoy their home-made baked goods, I know I am not alone in this world. There is support and love.
And it isn’t just cookies. Kerrie gave me butterfly twinkle lights when the Alzheimer’s was exceptionally bad and I was having migraines at the same time. Those are Emotional Support Twinkle Lights. Lynn had me to her home for crafting while her mom sat with my mom: Emotional Support Crafting. Betsie and Steffani send me meme’s from facebook to cheer me. Kathy N. sends me comics to make me laugh. And there are so many more people who I am blessed to have in my life.
Moral of the Story: You are loved. It may not feel like it every moment. But You Are Loved.
Signs of a heart attack:
- Pain, squeezing, fullness, burning, tightness, or uncomfortable pressure in the center of the chest
- Pain, numbness, pinching, prickling, or other uncomfortable sensations in one or both arms, the back, neck, jaw, or stomach
- Sudden nausea or vomiting or unexplained indigestion
- Lightheadedness or dizziness
- Unusual fatigue
- Sudden heat or flushing, or a cold sweat
- Heaviness, weakness, or pain in one or both arms
- Back pain
- Racing or fluttering heart
When it comes to migraines, these are the items from the heart attack list above that I have NOT had with a migraine:
- Chest pain
- Back pain
Signs of a Stroke:
- Sudden numbness or weakness of the face, arm, or leg, especially on one side of the body
- Sudden confusion or trouble speaking or understanding
- Sudden trouble seeing in one or both eyes
- Sudden problem with walking, loss of balance, or coordination
- Sudden, severe headache with no known cause
When it comes to migraines, these are the items from the stroke list above that I haven’t had with a migraine:
- Oops, I’ve had these all with migraines together and separately
Signs of COVID-19 (the newest Coronavirus) that may appear between 2 & 14 days after exposure to the virus (meaning you could have it for 14 days BEFORE you show ANY symptoms):
- Body or muscle aches & pains
- Congestion or runny nose
- Difficulty breathing that can be severe enough to cause people to seek hospital care
- Loss of taste or smell
- Nausea or vomiting
- Sore throat in some people
When it comes to migraines, these are the items from the Coronavirus list above that I haven’t had with a migraine:
- Loss of taste or smell
- Severe difficulty breathing
This is why I can’t panic about these things: My migraines may cause me to misinterpret them. It’s exhausting going to the doctor when this occurs, so I rarely do anymore. I hope I’d know the difference, but there have been times I did not know the difference between a migraine and another illness for a day or three. These are a few examples:
- Sinus infection
- Kidney infection
- Strep throat
- IBS attack
- Harvard for signs of heart attack or stroke: https://www.health.harvard.edu/newsletter_article/warning_signs_of_a_heart_attack_or_stroke.
- Yale Medicine for signs of COVID-19: https://www.yalemedicine.org/conditions/covid-19/ & CDC: https://www.cdc.gov/coronavirus/2019-ncov/symptoms-testing/symptoms.html?CDC_AA_refVal=https%3A%2F%2Fwww.cdc.gov%2Fcoronavirus%2F2019-ncov%2Fabout%2Fsymptoms.html
Tonight I said to a cousin that I might be naughty and let my mom clean and organize her room and her guest room. Then I stopped and thought about it.
Is that my idea of naughty? Why, yes. Yes, indeed, my current idea of naughty is to let an elderly woman clean her own rooms.
It’s also my idea of fun! It’s amazing how messy one tiny, elderly woman can be. If she can do this, it’s one item off of my mile long to do list.
Moral of the story: The definition of naughty changes as we age.
Saturday did not go as planned … at all. I had hoped to spend it doing much needed cleaning and organizing. But my nephew-in-law wanted to mow for my mom so he needed gas. Since we were going out, I offered to take mom to her happy place: The Discovery Shop (donation resale to support the American Cancer Society). Then she wanted to return all of our bottles at Meijer.
We got all of that done plus some groceries, and I got a sweet deal on two bee mugs at the Discovery Shop. I already had the lighter middle one that I purchased at Bee School Day at KVCC earlier this year. Thanks to resale, the two new ones cost less total (plus honey and tea) than the middle mug. Then, that nephew-in-law also wanted me to take a lot of photos of the garden he and others grow. It is stunning, so I spent a long time taking 100’s of photos. I’ll have to try again in a week or so, since his sunflowers aren’t open yet.
I would love to spend a whole week (or 2 or 3) just at home, but little things come up all the time. I love being home with no place to go for days at a time, even if I’m working. I cannot keep my activities organized. Part of that is the stress of living with Alzheimer’s and her medical appointments. If we’re out, we just run errands because we’re out.
Her memory issues came into play at the Discovery Shop. Mom only wanted a mug marked $1. She looked at her $10 bill and a $20 and didn’t understand that they can make change for either bill. The awesome volunteer behind the counter said she had enough change to cover it. I tried to pay, but she wouldn’t take my money and said she understood. All without making mom feel bad. She did fine shopping at Meijer. I just never know, so I must be vigilant all the time.
Tonight, we already scheduled time for my brother to come over for dinner so we could work in the last two of the sessions for his cider making class. Making dinner meant that cleaning has still barely happened. We made it through one session, but the last one will be 2 hours plus the quiz, so we’ll finish another day.
Now I’m wiped out. I should have time Sunday for cleaning, but I was hoping to just relax and maybe only tweak things. Yet we accomplished good things today.
Moral of the story: Plans.change, but it can be for the good.
It is mid March and I have not sent a single birthday or anniversary card yet. I want to, but when I sit down, I am exhausted. I still need/want to send out the Christmas letters I printed back in early December 2020. I still want to honor birthdays and anniversaries with cards like my aunts did for me. There is much I want to do. But finding the energy to do so is a whole other thing.
Well, this weekend, I found the energy for something all right. The energy to drag myself to immediate care when sciatica acted up in my left leg. I haven’t had it hurt that bad before, and various positions of sitting, standing, laying down, or walking did not helped bring the pain to a 6 or lower on a 10 point scale. So, to immediate care I went. Except that my doctor switched hospitals last summer with a bunch of others, and I went to the old immediate care location. By the time I realized I was at the old one, I couldn’t give a fig’s fanny where I was, so long as there might be relief, and so I went in.
They agreed it was sciatica and provided treatment, but the pain only got to a 5 at the lowest for the rest of the day even with the medications, and it kept going back up. Not a roller coaster of my choosing. I like high numbers when it comes to grades and good cholesterol, but not this. It was a long day. I’m glad I coffee, kitty time, and that I’m thoroughly addicted to watching “The Resident” on Hulu, … because that helped get met through the day (yes, TV, cats, & coffee can be medicinal). Finally, the next morning, the pain was gone. Phew! BUT now from my left foot up to the knee felt numb and tingly with a Charlie horse behind the calf. I hoped I’d be so lucky on Monday morning, and that it would just be gone. No Such Luck!
I called my doctor office Monday morning, and they got me in within the hour due to concern of a blood clot. Oh, great, just what anyone wants to hear on a Monday. As if Monday isn’t Monday enough on any given Monday! That doctor then ordered that I get an ultra sound of the lower leg and an X-ray of my lumbar region ASAP.
I am so very grateful for my friend Nickey. She was able to go with me to Battle Creek for these tests … the closest location for an ultra sound ASAP. Nickey was my insurance that it wouldn’t be a blood clot. Murphy’s law runs my life, and when I go to the immediate care without someone to help drive if it may be bad news, then it’s bad news for sure, and I have to go back a few days later to get my car. Because Nickey came with, it was not a blood clot. The x-ray won’t be back for few days, but I’m SO glad it’s NOT a blood clot!!! So glad too that Nickey was there to celebrate with a very late lunch.
Moral of the story: When you might get bad news, take a friend. Even if it is bad news, you can weather it together. If it’s not, Celebrate!