There are no mistakes, no coincidences. All events are blessings, given to us to learn from. ~ Elisabeth Kubler-Ross
“I think your mom has about a year,” is all I remember from my first visit with mom last week. I didn’t get a chance to ask questions until our Care Meeting on Wednesday, but by then, I could see why my mom’s Caregiver would say this.
The first thing I noticed is mom’s diminished level of engagement. She’s lost and far away, and has an emptiness to her eyes that I’ve not seen before. And for the first time since mom’s diagnosis, I’ve thought to myself, “my mom is brain dead.”
You can take that literally, because Alzheimer’s is another word for a dying brain.
The last time I visited in September, mom could be directed to do things on her own. Now she needs help with everything — eating, dressing, undressing, escorting to the bathroom, hygiene, toileting. Everything.
Mom is going down fast. That’s what they tell me, and that’s what I see.
Mom’s Caregiver thinks she has something other than or in addition to Alzheimer’s disease. After spending time with other residents in mom’s Home with Alzheimer’s, I can see what she means. While one woman colors in a coloring book, mom doesn’t understand that she needs to pick up the crayon to color. Another 94-year-old woman with advanced Alzheimer’s uses complete sentences, and is highly engaged. Not true for mom.
I recently shared my New Year Resolutions for my mom which is more of a list of things to do before it’s too late. But it’s already too late for some things on the list like traveling to her home town which would be too much. But maybe when the weather is warmer, we can do the easy things like walk barefoot along a lake shore or watch clouds overhead.
Mom has rounded a corner and I believe I have too.
I’m less frantic, more realistic, and more at peace. If it’s true that mom has a year, then there’s nothing left to do now but enjoy her — and make sure she’s loved and gets good care.
Next Saturday I fly from the cold state of Virginia to the freezing cold state of Minnesota. With one friend going to Puerto Rico this month and another on a Caribbean Cruise, I can’t help but wonder if I have it backwards by heading north. But this is what it’s come to — my airline ticket money is saved for home, and heading south while tempting, just wouldn’t feel right.
There isn’t a big To-Do list this time, my plan is to mostly chill and spend time with my family.
But if you read “Racing Alzheimer’s: Mom’s New Year Resolutions” recently, you know that there is a list — it’s just not my list. I hope to knock some things off mom’s list by doing what we can that doesn’t require warmer weather. I know require is a relative term, but this Minnesota girl has become a cold weather wuss since leaving over 20 years ago. I mean, there’s really no reason to be outside when it’s below 40 degrees.
A warm coat, chap-stick, and mom’s list — let’s do this.
Hopefully I’ll be able to smell spring in the air when I return.
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.
We moved my mom into an Assisted Living Home on May 18th, 2012 without planning for it and with only two days notice. We barely had time to move her in and make her room feel like home before I flew out the next day. It sort of felt like I dropped my mom off at a daycare and then never picked her up. Even though I knew it was the right thing to do, it just felt wrong. One of the biggest events in my mom’s life was rushed, because I was rushed.
It’s been two months since mom’s been in her new home and I hear she’s doing great. But, I’m thrilled to be going back this week so I can see for myself. I also feel like this is a chance to take things slow and do some of the things I wanted to do in May.
Some things I’m looking forward to are:
Going for walks in the new neighborhood mom lives in.
Dining with mom and her new friends.
Washing dishes with mom.
Decorating her bedroom with old family photos and girlie stuff.
Maybe getting new bedding for her twin bed.
Taking mom to the beauty salon for a haircut.
Just being with my mom, and being fully present, with nothing but time on my hands.
My sister from Texas will also be there, and so with the Nelson family of five all together, we have a photo session scheduled at Lake Nokomis. We haven’t had a professional family photo taken in about 35 years, so this will be it — most likely the last shot of all of us together. You know the family pictures people take when someone has terminal cancer? That’s what this feels like. Except mom won’t look sick, she just won’t know what’s going on as she smiles innocently at the camera. I’ve given the photographer a heads up telling him, “my mom will think you’re an old friend, and she’ll be so happy to see you that she’ll probably hug you.” The photographer said that’s okay, his grandfather had Alzheimer’s and he’s very familiar with “going with the flow.” This disease touches us all.
This will be my first visit to see my parents in years when I haven’t had a major to-do list. I am so looking forward to just chilling and spending quality time with my family. Plus I have a date with Lake Harriet I need to attend to, (see Bucket List). There’s nothing like Minneapolis in July!
I am overwhelmed by your response and support of my blog launch one week ago, and I want to say a heartfelt — THANK YOU.
Now that the 10K is behind me, I look forward to writing about things like how eating less sugar, drinking more coffee and being conscientious can lower your risk of Alzheimer’s disease.
But first, I’m off to Minneapolis today to visit my parents for a week, and I hope to share from there if time allows.
My 78 year old father is having ankle surgery and I’m going to help care for him and my mom while he’s recovering. My mom is still at home, and my dad is her sole caregiver. It’s difficult being far away. It never occurred to me when I left 25 years ago that my parents would need my help someday. It just wasn’t on my radar. Now it’s frustrating that I’m not able to help with the little things that would make their lives easier.
I’m part of what’s called the “sandwich generation”, which means I’m helping to take care of my aging parents while still supporting my children.
“According to the Pew Research Center, just over 1 of every 8 Americans aged 40 to 60 is both raising a child and caring for a parent, in addition, between 7 to 10 million adults are caring for their aging parents from a long distance.”
I do what I can when I visit. And as my parents age, it’s clear that I’ll be visiting more.