My husband Vince recently had the good fortune of visiting Minneapolis for business. And this was a great opportunity to visit my family while there! Vince did the usual things with my dad and brother that included going to a locally famous hamburger joint to eat “Juicy Lucys,” watching Monday Night Football, and then going out for steaks on another night. Priorities! But he also got a chance to visit my mom and see her new digs for the first time.
I was pleased to hear mom recognized Vince and was happy to see him. He reports that her language has definitely diminished since he last saw her in 2010, and communication was difficult. But they went on a walk together and my dear husband was patient and they chatted as best they could. He brought Christmas gifts for her, and here are a couple pictures of her opening them.
Vince said mom was confused on how to open the packages and she needed help, which is new. We gave her a Christmas fleece in her favorite color and a new book called “Blue Sky, White Clouds” by Eliezer Sobel which is a book for memory-challenged adults. I hear she enjoyed it and they read it together. But this book gave me an idea to create her own personal “Memory Book” that includes her life story in simple pictures and words to include names of her loved ones which I think she would love.
Mom tried on her Christmas fleece which looked like it may have been a bit short, but then it was put on over her sweatshirt, so I don’t know. I wish her eyes were open here — but you get the idea.
It was so nice that Vince was able to visit. Since I couldn’t go he sort of carried my love and hugs and gifts to mom for me, which was just beautiful! (sigh) Merry Christmas far away mom, dad, brother and sister in Texas! You’re in my heart on Christmas and every day.
Visiting family and friends in Minnesota is one of my favorite things to do, but it always goes by too fast. With my mom in the mid-stages of Alzheimer’s disease and her recent move to an Assisted Living Home, I feel the need to visit more often. If you’ve seen “The Stages of Alzheimer’s and My Mom,” you’ll understand what I mean.
Mom was completely surprised when I arrived at her place on Saturday morning, and then she burst into tears. This was a new reaction that concerned me as she continued to cry in my arms. But her tears eventually turned to smiles and I decided to think of them as her heart recognizing me. I like that. But still, I have to wonder — does she know what’s happening? Is she being treated alright?
There were just a few subtle changes with mom. Her language continues to diminish. It’s very difficult for her to communicate and knowing context is critical to understanding her. It occurred to me that she doesn’t use a lot of nouns anymore, maybe because she has trouble naming things. But Mom speaks in a happy voice, with her upbeat sentences sounding something like this: “Sometimes I go . . . and then we see. . and so forth . . . and I say, why not!” Then a reply might be, “Exactly! Why not?!” Then laughter usually ensues. Mom loves to laugh and make other people laugh. Laughing with my mom is such a gift, because it’s right there in that opening that a connection is made. I found mom’s high school yearbook when I was home, and next to her senior picture it appropriately says:
“Laugh and the world laughs with you.”
Another subtle change could be seen in mom’s motor skills. Her gait and footing are not as steady as they used to be. She also needs some help getting dressed, when she didn’t need help before. Losing motor function is a late stage characteristic that could last for years. The caregivers and I discussed mom’s eventual need for a walker.
The other change is a good one. Mom used to fixate on giving back rubs and back scratches to almost everyone. A simple hug would end with a vigorous rub or scratch — whether you wanted one or not. This friendly but compulsive activity is almost completely gone. Yes, this is a good thing.
Mom “knows” everyone, and everyone is a “friend.” So when we go out, I am used to gently moving her along when she engages a little too long with her “friends.” We went to a local park one afternoon and she suddenly gasped and couldn’t believe her friends were there! She rushed over to say hello to a strolling couple and as I prepared to intervene, her “friends” said “Ruth! How are you?!” They knew her! Mom was right! They were friends, and for some reason it just blew my mind. We chatted a bit before parting, then we saw the couple again about five minutes later and mom gasped in surprise and couldn’t believe they were there!
Mom turned 75 in September. I gave her a baby doll for her birthday, because I’ve seen women in nursing homes holding baby dolls and I thought mom might like one too. I was just thinking that if she got familiar with a doll now, it might offer her comfort later. Anyway, it was fun to watch her hold and feed the “baby” while feeling just a little bit silly it seemed.
Overall, mom is doing well. She is happy and seems to really enjoy her new home and the other residents. Mom gets a fair amount of visitors with her most recent being a dear school friend from her hometown. While visiting with mom’s friend who is sharp and has a very active life, I couldn’t help but wonder — what if? What would mom be like at 75 without Alzheimer’s disease? I try not to go down that road, but it’s easy when I’m with someone mom’s age.
For those of you who know my dad, his ankle has improved after replacement surgery in May and he’s getting around with a cane now. He has a fairly full social calendar that includes visiting mom a few days a week. But he struggles with living alone, and he has no interest in cooking. This has been a difficult adjustment for dad and he’s another reason I visit more often.
A highlight of my visit was reconnecting with my dear friend Judy. A beloved, life long friend with x-ray vision as her super power.
Visiting with my mom is always an adventure. I never know what she’s going to say or do and it’s fascinating to watch and participate in her crazy shenanigans. My goal was to keep her laughing. As long as she was doing that, then I figured we were okay. Or maybe that just made it easier for me.
My sister and I needed mom to try on a “picture outfit” for family photos we had done. When we removed her clothing we noticed she had a wash cloth stuck down her bra and in her pocket. We said “someone’s been folding towels today” and then proceeded to laugh hysterically. Mom will stuff any and everything in her pockets to the point of them looking like chipmunk cheeks. But a wash cloth in the bra was a first.
Okay, I’ll just say it. Mom acts like a young adolescent and she’s in a, shall we say, sexual stage right now. I don’t know how many times she lifted her shirt to show us her bra. She was either pulling on her shirt pretending she had large pointy breasts or she was lifting her shirt and flashing us. This activity was always followed with laughter that reminded me of a young girl at a slumber party. Once, when we were in the car, she found a compact umbrella and well, with the size and shape of it, and with her young mind in the gutter . . . one thing led to another and let’s just say I never imagined my mom ever doing that with an umbrella! And she laughed and laughed like a school girl with a mischievous look in her eyes. Okay, it was a little funny — but mostly we were just shocked. This was so out of character for mom.
I can’t count how many times we hugged. I’m talking about the best hugs. Mom could charge money for those hugs. Warm, embracing, long, loving, everything is going to be okay hugs. (sigh)
She called me by name a couple of times, but there were a few times that I was standing right next to her and she said to me, “I think that’s Joanne over there!” I’d say, yes that kind of looks like Joanne, but I don’t think it’s her. It felt wrong to say “I’m right here” — I didn’t want her to feel bad. Every single day, Mom asked when I was going to cut my hair. And every day my answer was the same — tomorrow.
We bought her new bedding, hung some more pictures and made sure her name was in all her clothing. We danced, laughed and sang songs. We took a hundred new photos and looked at old black and whites together.
Mom mentioned a couple of times that she’s ready to go home. One time she asked where her mom was. I wondered when that was coming, but it still surprised me. I told her, “she’ll be here soon.” I’m pretty sure the home she’s talking about isn’t the one she’s lived in for the last 45 years, but rather her childhood home in Wadena, MN.
Little 14 year old Ruthie Hall wants to go home. Oh how I’d like to make her wish come true.
The 10K I ran in May was the last time I ran 6 miles . . . or 5 or 4 for that matter. Running 3 miles two or three days a week is about it, and even that has become difficult. Ugh! How can I lose 3 miles in one month?! The short answer? Stress. During my recent visit to Minneapolis that included moving my mom into her new Assisted Living home — I didn’t eat, I didn’t sleep, I didn’t take care of myself and I didn’t run. I was a wreck and lost 5lbs in 10 days. I’m pretty sure those pounds were my newly acquired 10K muscles.
When I arrived back home in Virgina, I was sick for a week and felt like I’d been run over by a truck. And I’ve pretty much been under a rock ever since. Recovering. Keeping to myself in prime reclusive form. Avoiding people. Some might call this depression. But I like to think of my solitude as more of an adjustment period.
Adjusting is not new to me. As a mother, and even as a daughter of aging parents, the adjustments are aplenty. Putting my children on the kindergarten bus comes to mind, as well as watching my newly licensed children drive away for the first time. And of course there’s the adjustment period I’m currently in — letting go of my children as they learn to fly on their own, and letting go of my mom who is in her 7th year with Alzheimer’s.
The dictionary defines adjustment as “adaptation; harmony achieved by modification or change of a position.”
In the above definition, LETTING GO is my modification.
Letting go is saying YES TO WHAT IS. It’s saying yes to what is true right now. While we may not like what is true, if we are to live in harmony, we have no other choice than to let go and accept. The opposite of letting go is grasping, and with grasping comes wishing, wanting, clenching and suffering — not a harmonious place to be.
So I am working on letting go of my children and letting go of my mom. I am adjusting. I’m changing my position from being the center of my children’s lives to being silently by their side, readily available with a hug or advice, while they take the wheel and navigate the trajectory of their lives.
Letting go of my mom is different. I’m saying the real good bye as I let go of my mom. She is still with us, but because of Alzheimer’s, I’m saying good bye to the mom who sang in the church choir, hung clothes on the line and called my children by name. I’m saying good bye to the mom who sent birthday cards, visited me in Virginia and who called on the phone just to say hello. Since using the words “mom” and “daughter” are confusing, I’m saying good bye to them as well. I’ll be her friend. I’m changing my position from being a daughter she knew and loved to that of a being a really nice woman with a friendly smile who likes to hug. I’ll be her loving friend who calls her Ruth instead of mom . . . who will do anything for her.
Adjusting and letting go. Changing my position.
Soon, in a few years I would imagine, Alzheimer’s will complete it’s grip on my mom. Then I’ll be saying good bye to mom’s physical form. I’d like to think this won’t be too difficult as I’ll have said all my good byes by then. But I’m probably mistaken. And then I might be adjusting again.
Alzheimer’s disease is killing my mom. Sounds harsh, but it’s true. It’s deliberately taking over my mom’s brain like a wildfire out of control. It’s an insidious, controlled blaze that is slowly and methodically destroying the parts of her brain responsible for memory, language, reasoning, walking, swallowing and eventually breathing. It’s a long drawn out death that will most likely have my mom in a vegetative state near the end.
Nothing will put out this fire except the fire itself when it destroys it’s host.
In this final stage of disease progression, many individuals enter a catatonic-like state, and they are suffering from the worst effects of Alzheimer’s disease. They lose their ability to speak and respond to others, though occasionally words may be uttered. They are unable to sit up, smile, swallow, hold their head up, and their reflexes become abnormal and muscles get rigid. Eventually this end stage leads to death, typically about eight years after they were diagnosed with the disease.
I’m telling you this because we forget that Alzheimer’s is a terminal illness. Well, I know I did — rather, I was in denial about it. The symptoms of Alzheimer’s shift the focus from terminal illness to memory impairment and strange behavior. It becomes real easy to focus on how the Alzheimer’s sufferer is no longer normal and how we are coping with the abnormal behavior, rather than acknowledging they are dying a long drawn out death.
We are complacent when it comes to Alzheimer’s disease. We hear the term all the time and many of us come to believe it’s a natural part of aging, but it’s not.
Quick — what do you think of when I say Alzheimer’s disease? If you’re like me, you think of memory loss. But that’s just the first of 7 stages of the disease, with death being the last. What if I told you that 42.3 million people worldwide will die from brain cancer in the year 2020. Scary right? This isn’t true, but if you replace the words brain cancer with Alzheimer’s, that would be true.
Alzheimer’s is a deadly disease not a memory disease.
My mom’s 10 Day Care Conference, which was really 12 days, went well. They love her there. Mom is upbeat and happy and she still hugs everyone. She enjoys helping with chores and is able to remain focused long enough to finish small jobs. Mom is sleeping and eating well and enjoys spending time with the other ladies.
Mom needs help bathing, dressing, grooming, and oral hygiene. She needs direction with pajamas and getting to bed. While mom is sleeping, the clothes she just wore are taken to the laundry or she’ll wear them again. Someone needs to show her where the bathroom is — every day.
Mom uses her maiden name now and identifies as her younger self. (If you’re thinking about sending mail, addressing it to Ruth Hall would make more sense to mom.) Mom hasn’t asked about going home. And she didn’t acknowledge my father when he was there today.
It’s amazing how quickly and easily she let go of her previous life and settled into her new home — which tells me she is much further along than any of us realized.
When I decided to write a blog, my intention was to write about what I’m doing to get healthy and hopefully prevent Alzheimer’s disease in myself. I didn’t want to write too much about my mom who has Alzheimer’s for a couple of reasons — first, there are already “caregiver” and “long goodbye” blogs out there, and writing about my mom was just too close and personal for me.
But, as you know, close and personal is where I’ve been lately.
Moving my mom into a residential home and then leaving the next day was one of the most difficult things I’ve done. I’ve wanted to run back every day since then to hug her one more time and tell her everything will be okay. It feels like I dropped my child off at a babysitters never to pick her up again. Like she is watching out the window, waiting to go home and wondering why no one is coming.
Friday night was mom’s first night sleeping in her new home and I went over Saturday morning before my flight to check on her. I was told that she came out of her room “with spirit” and fully dressed to include her favorite pink baseball cap that says Winchester, VA. My mom then hugged the woman in charge and promptly sat down with a bowl of oatmeal and raisins.
Mom looked rested and she seemed to be alright as I visited with her. She didn’t ask me anything about going home or when we were leaving and she seemed content and at ease like she had always been there at that table with the newspaper in front of her. Although, I’ve heard she’s been asking lately when she’s going home.
As I was getting ready to leave I asked, “Do you like it here?”
Mom said, “Oh my yes!” “It’s like . . . it’s like . . . . it’s just like THIS” as she wrapped her arms around to give herself a big hug.
While my mom’s new home feels like a big hug, I’m sure there is a sense that it is not her home. I hope it starts feeling like home real soon — for mom’s comfort and our peace of mind. I hope.
It was a quick decision to place my mother in a Residential Home. The idea was discussed on Monday, it was finalized on Wednesday and she moved into her new home on Friday. But we couldn’t just let my mom vanish from the neighborhood without a good bye. She’s lived in the same house for 47 years, (I grew up in this house), and the neighbors have become dear friends. So we had a small gathering around a fire in my parents backyard.
My mom was happy to see people and have a party, but the send off was for the neighbors benefit as well. Nobody said good bye and the move wasn’t mentioned because it would have just confused and concerned her. So she drank her root beer and had a great time and we all watched her knowing that her life was about to change.
We had fun. But I felt like such a sneak.
My mom moved into her new home today and she isn’t here tonight. We’re here, but my mom is not. So strange. I don’t like how this feels.. I hope my mom is okay. I hope my dad is okay too. I hope mom went to bed alright. And I hope to write more about this experience someday. But I can’t just yet. I’m so tired I could sleep for days. Good night friends. Good night mom.