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The MAD Life: Episode 18

Durable Power of Attorney (DPOA): Borgess

  • If you give a DPOA form to any office or single location in Borgess, it will only be applicable to that office for medical purposes only.
  • It will not be sent to their billing department unless you do so directly.
  • It will not be sent to all of Borgess, even though you were told it would by two staff people when you gave it in person.
  • You will need to provide it to each location individually for medical.
  • You will need to provide it to each location individually for billing.
  • It will not be applied for 7-14 days from the moment that they acknowledge accept receipt of it, A N D they may not acknowledge receipt of it for months (M O N T H S).
  • I’ve sent it 5 times in 13 months (email, mail, and fax).
  • They have only now … when it is too late for my mom’s tax documents … acknowledged receipt of it … in O N E billing department.

I am so very, very, very glad that my doctor moved from Borgess to Bronson in the mass exodus. I had zero issues requesting the same from Bronson. I had it in less than 5 business days back in January.

Moral of the story: Being a DPOA sucks. I never dreamed I’d be doing any of this. Mom never dreamed she’d be living with this disease. Hope for the best and prepare for the worst. Then praise the Lord of Love while counting your blessings seventy times seven for the best of friends and family.

 
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Posted by on May 15, 2021 in Uncategorized

 

The MAD Life: Episode 17

The one thing in the world my mom wants most is the one thing I have been severely warned to never do for her: she wants to visit home.

This disease is so exhausting on her and her caregivers and all who love her. I want to give her moments and things that make her happy: attending church virtually, potted flowers, visiting with friends and family, hair care products of her choice, and the list goes on. But the thing she wants most is to see the home and farm where she has spent the last 54 years of her life.

Yet every child of someone with Alzheimer’s and every care giver and doctor of those with Alzheimer’s tells me it would be the worst possible thing I could ever do for her. As bad as she thinks her 1st month at North Woods Village was (it was better than the previous 8 months at home), and as hard as a move will be, they all tell me even 5 minutes on her property, and never mind going in the house, will devastate her for the rest of her years. And she may never recover from that.

It’s not just anyone who is telling me this. It is not only people working in the neurobehavioral health field, it is the children of parents who had this mind boggling disease. These are the people I trust the most. They lived through this. They made these pain filled decisions. They saw the ramifications – for good and bad – of their decisions.

These fellow children wearing these ill-fitting shoes do not warn me lightly. They are expressive, and some filled with regret. Their stories will break your heart and rip your soul.

So the one thing my mom wants most, she cannot have … because I love her and want her to enjoy this life while able.

Morale of this story: Alzheimer’s sucks. In every way.

 
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Posted by on May 13, 2021 in Uncategorized

 

The MAD Life: Episode 16

With Alzheimer’s, there are good days and bad days. In a single day, there are good moments and bad moments. In a single phone call, there may be good minutes and bad minutes.

I don’t usually know if my mom is my mom, or if the Alzheimer’s is more present until we start talking, even in person. It can change in a moment with trigger words (that I don’t realize are trigger words until it’s too late, if they trigger anger). There are good trigger words for bringing her back to happiness, such as “ice cream”, “waffles”, or “bacon”. Okay, so I guess it’s food. Foods she enjoyed when she had taste buds trigger joyous memories for her.

I have triggers too. The longer we’re in this, I see why there are numerous books on caregiver care. This disease is traumatic for both of us.

Today I had 3 doctor appointments. Before the 2nd appointment, my mom called wanting to visit home. I have been told by memory care doctors and children of people with Alzheimer’s that they can never go home again … even for 5 minutes or a simple drive by. This is because the moment they get back to the memory care home, it’s as if they have never been there before, and the acclimation process to the memory care home starts fresh. Sometimes, they don’t ever acclimate again.

I don’t have to figure out how to deal with that until covid settles down, and she’s allowed to have fun outings. Until then, covid is the answer as to why there are no visits home. However, today, nothing mattered. She just started screaming and ranting about her need to see what she her home. Not that she’d recognize it. She thinks the home she most recently lived in is her childhood home that she moved out of over 50 years ago. I did my best to calm her and end the call on a good note, even though when she’s angry with me, she likes to stay angry.

At all 3 appointments, they took my blood pressure. At the 1st one, it was 125/70. This is about normal for me.

At the 2nd one, it was 151/94. I asked the nurse to take it again at the end, because I had just spoken with my mom in the parking garage. She stopped me and said, “Say no more, I have one of those too. She raises mine at least 50 points every time.” At the end of the appointment, it was 149/90. Not great, but it was a short appointment and this was going in the right direction.

At the third appointment, it was down to 135/84. Still not my normal, but closer to my normal, and a start in the right direction.

Her anger from this morning still weighs on me this evening. I never know if she will still be angry with me in 5 minutes, 5 hours, or 5 days. Or if she’ll let it go now and then remember in 5 months. There’s no explaining it to her, because the disease alters her ability to reason. This is so frustrating for all involved.

Moral of the Story: We all impact one another, for good or bad or both. That impact may be mental, emotional, physical, or spiritual. According to chaos theory, the simple flutter of a butterfly’s wings can start a tsunami. We impact one another. We mark one another with our words.. May we all want and try to make it a positive impact to better each other and ourselves. I need to work on this.

 
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Posted by on April 29, 2021 in Uncategorized

 

Happiness is … (005)

Watching the leaves fly, hearing the wind whistle, visible joy in Joy’s watchful eyes.

 
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Posted by on March 16, 2021 in Uncategorized

 

The MAD Life: Episode 15

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.

 
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Posted by on March 8, 2021 in Uncategorized

 

The MAD Life: Episode 14

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.

 
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Posted by on March 8, 2021 in Uncategorized

 

The MAD Life: Episode 13

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.

Dad driving the tractor one summer decades ago.
The tractor in our driveway, no idea what year.
Dad using the tractor to bail hay. He passed in January 2014, and he had bailed hay the summer before.
He loved this farm, this family, and this life.
He has shared that joy with all of us, and his descendants remember him because of his joy in life.

 
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Posted by on December 20, 2020 in Uncategorized

 

The MAD Life: Episode 12

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.

 
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Posted by on December 20, 2020 in Uncategorized

 

The MAD Life: Episode 11

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.

 
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Posted by on September 16, 2020 in Uncategorized

 

The MAD Life: Episode 10

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
  • Chills
  • Congestion or runny nose
  • Diarrhea
  • Difficulty breathing that can be severe enough to cause people to seek hospital care
  • Drycough
  • Fever
  • Headache
  • Loss of taste or smell
  • Nausea or vomiting
  • Sore throat in some people
  • Tiredness

When it comes to migraines, these are the items from the Coronavirus list above that I haven’t had with a migraine:

  • Cough
  • 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
  • H1N1
  • IBS attack

Resources:

 
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Posted by on September 14, 2020 in Uncategorized

 
 
Write With Joy

Freelance writer, editor, hobby photographer, and administrative assistant

Ex-Mana Book Group

"Outside of a dog, a book is a man's best friend. Inside of a dog it's too dark to read." Groucho Marx