*by 'short post: not a total shock' I meant that the content had info that isn't a total shock, not that me drafting a short post should be a shock.
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On Dec. 1st, my sister, Ann, texted in the sibling group chat. We don't use this group chat often. The last time was in early August when I texted an update about Reg's epilepsy. Ann had taken my folks to my mom's follow up appt for her cognitive test. I didn't even know that my mom had this appointment. Not like my mom would remember to mention it. I'm out of the loop is what I'm saying.
Anyway, Ann texted the cognitive test results: Mom has Alzheimer's.
This isn't a total shock, since her memory has been fading. Still, it bites. There's an earth-shattering shift from 'Mom's memory is failing' to 'Mom has Alzheimer's.' How long will she know us? I believe she's taking meds to slow the pace of the disease. How much will that help? No clue.
Will they stay in their house? Will they move to a community for seniors? If I have a vote, and you better believe that I don't, I'd vote they stay in their house for as long as possible. Remember, I can walk there.
My sisters took my folks to look at a retirement community in August. I wasn't informed. This ticked Mini off. My grandparents lived in this place. It's very nice. Dinners are prepared in the dining room. Activities are available for the residents. Everyone lives in their own little apartments.
I asked Mom afterwards what she thought about it. "I feel like I'd miss my house too much." I agree. They live in a ranch house. It's updated and decorated with very nice touches.
I feel like she'd be more confused after a move. Wouldn't that cause her to lose more ground?
I haven't really gotten to talk to Mom about her diagnosis. I called her that night, but she didn't feel like talking and passed the phone to my dad. I asked him if they wanted to go with me to Reg's game the next night. Yes, they would. I picked the two of them up. Marie was in town, so she hopped in the car too. Not exactly ideal for a heart to heart.
Then Coach and I took Reg and Curly to see Tank at school and watch a b-ball game over the weekend. Silly me, I thought I'd squeeze the road trip story into this post too.
I get a little weepy thinking about what I'll say. I want to know if she's scared. I also don't want to know. I cry thinking about what it would be like to know that you are gradually slipping away and that one day you won't know anyone or anything that was once so familiar.
Overall, I want to reassure her that we'll all be there regardless of whether or not she knows us. We'll do whatever is possible to make her feel comfortable and loved.
I keep thinking that I wish we had a safe word. Like, what if there was a word that I could whisper to her to let her know that I'm there. What would you tell someone if you were going to travel through time and you planned to meet up again and you wanted to be sure they knew that you were indeed you - just in a different time?
So, I'm crying now and I need to stop crying because we aren't telling the kids this news until the college kids are home after final exams. To keep things light, I've decided that my safe word, which is really more of a safe phrase is this:
I'M YOUR FAVORITE DAUGHTER. 
GF version of the dinner- left
off the stuffing topping.
We're laughing now, right? Not sure about you, but I needed a good laugh.
Of course a safe word won't work, but it's kind of how my mind is operating. I'm also thinking about making her a pillow with a photo of all of us, or most of us. Kidding. Maybe a pillow with a family photo on it would bring her comfort. Who knows? I'm not sure how to proceed. Hoping the kids don't crumble. Maybe they've already assumed that she has Alzheimer's.
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| The gluten version. I skimped on the stuffing - I doubled the recipe, but not the stuffing mix. I figure they're lucky I'm making a gluten version at all. |
I promise you this. I'm grateful. (Well, I'm frustrated and mad too, but more about that another time). Super grateful that this didn't strike years ago. She's 80, and she still knows us. There are still memories to be made.
Here's a photo of cacciatore-style chicken bake. I made it for dinner tonight. Mini isn't crazy about this, but it's really good. I reached back into the archives since Mini's not home. Plus, I had no photos of sadness.
30 comments:
I'm so sorry, Ernie. I know you've noticed her memory failing for a while, but what a blow. Alzheimer's is really difficult and I am so sorry that your mom is diagnosed with it. I admire you for saying that you are grateful that she's 80 and has had a lot of time with you; I hope there is more time as well. Alzheimer's is unpredictable in how fast it can hit, I hope you do have more time to make more memories. It's a good thing you're so close, because I'm sure your dad will need the help with her. xoxoxo
Getting that diagnosis must be so hard, hopefully a family tragedy will bring you all closer together. One can hope right?
Oh, Ernie, I'm sorry. Suspecting it and knowing it must feel very different. Hugs to you getting through the beginning of this stage.
Ernie, my mother was diagnosed with Alzheimer's several years ago. She has no short term memory now, but she knows every single one of us, including all the grands and great-grands. She remembers everyone's birthdays. Alzheimer's is different with everyone, but it is a progressive disease.
As far as staying in the home, that puts a huge burden of caregiving on your dad. I know you can be there quickly, but he will be there 24/7. And big personality changes--negative ones--are a symptom of Alzheimer's as well. My mother lives with my brother--his choice--and I have her here with me one week a month. It's not something I look forward to, to be honest.
I'm sending you strength and love to meet her where she is, every day.
Even if you knew this might be coming, it's still a shock and hurts. Science has improved so much over the years; hopefully, the meds she takes can slow down the progress and give you more time together.
I love the pillow idea, and I love your safe word! You are a genius.
I think them being in the house as long as possible while she can still take care of things is ideal...until it's too much for your dad, of course. He has to factor into this as well.
Sending you the biggest hugs ever!!
Oh, the dinner does look good. What's up with Mini? 😳😜
I'm so sorry, my friend. I'm sending you all my love as you navigate through this. If you need to talk, I am here. 😘
Nicole - Thank you. Yes, it is a tough blow. Again, that mini-stroke she had was a godsend, because it prompted doctor visits that she otherwise refused to attend for DECADES. I'm hopeful that the meds they started her on to slow the process will do some good. I've heard a ton of Alzheimer's, but this is my first personal experience with it.
*Also, I decided to post this at the last minute but in my haste, I neglected to shuffle the original post set for today. Oops. I took that one down and will share it another time soon. I've copied your comment from it. You are one dedicated blog friend to have read BOTH of my posts today. ;)
Colleen - Yes, it comes in waves, the thinking of things and the wondering how things will go. One can hope, but I admit that it has already been a bit trying to get time alone with my mom. I also felt like this was maybe not something to be shared in a text. Fortunately Coach is good at helping me vent and assisting me in keeping the big picture in sight.
ccr - Yes, that's just it. Memory loss is one thing. It happens, right? But knowing that there is a more definite path - a path that can play out in several different ways even, well - that's tough.
Nance - Thank you. I appreciate the advice from someone who has been there. I am only thinking about having them stay in the house while the present situation continues where my dad isn't burdened with her needs. Of course we have no idea how long that will last either. It's a challenge to try to predict things and I do enjoy some sort of knowledge of what is to come. Well, writing that makes me laugh. I do prefer that, but with 6 kids - there really is no such thing as planning.
I appreciate your kind words and support.
Ernie, I am so sorry to hear this. It is such a sad disease that affects the whole family. I had two aunts that suffered from Altzheimer's (both have since passed). I was pretty close to one uncle and saw him deal with it. He cared for her as long as he could, but ultimately they did go to a retirement home as she deteriorated and they only had one child. I think you mentioned that your dad isn't much of a cook - that was my uncle's issue as well! It worked out beautifully for them, but of course every family and situation is different. I cannot believe your sister texted this? What the actual hell? You also have your community here to vent to and get support from xo.
Suz - I have heard from a nurse friend that the meds currently do help. Fingers crossed.
I got the idea to make a pillow for Mini for Christmas because her roommate has a really cute NOTRE DAME pillow made by her grandma. I took photos of it when Mini wasn't in the room. Sewing on the sly won't be easy over break with the kids home. Anyway, I thought that might be something I could also do for her.
My safe word. HEE HEE. Maybe I can convince her that this is true at some point. ;)
She still goes on walks daily and hasn't gotten turned around or anything, so if she can manage to be functioning in the house for awhile - then I think that would be best.
The dinner is nothing challenging. I cut a TON of veggies for it, since I like to pretend I'm feeding at army before taking a break from meal prep. Yeah, what is up with Mini? Perhaps I made it too frequently back in the day. That'll do it, usually.
Oh Ernie. I'm so sorry. It does seem like you've been preparing yourself for this for awhile now, but that doesn't make it less upsetting. Holding you all in my heart. <3
Kari - Thanks. It sometimes still surprises me to say it aloud. Dang, it sucks. I appreciate your support. You are sweet.
Pat - Thank you. Sending the info in a text - yep. I'm glad you found that odd. I didn't, because my sister is a thoughtless person unless people outside the family are paying attention - she puts on airs. Always has. Sweet - that's what she's known for, but behind walls with family - no where near sweet. I'm sure she and Marie spoke before the text was sent. That's how they operate.
It will be interesting. Still hoping that she manages to do fairly well for a few years. She is in otherwise excellent health, which is the bummer. She really could be involved and attend weddings and meet great grandkids, etc. if only.
I do appreciate the support here. More than words can say.
Suzanne -I have been bracing for it. Still, it doesn't seem real. Thanks for the kind words. Much appreciated.
Oh Ernie, So sorry to hear this.
Do you kids read your blog? They won't find out from here first will they?
The chicken looks good. I might try making it.
Jenny - Thank you. It is sad. My kids do not read my blog.
This recipe is tasty and so simple, if you stick with only cutting a few peppers. I add LOTS of peppers and onions. I endorse that version.
I am so very sorry to hear the diagnosis. Sending you a ton of love and hugs.
It's hard and sad to think about losing your parents, especially if you hate change, like me. It really sucks. Both my mom and dad are gone.
We loved our dad, but cherished our mother and when she died suddenly of a blood clot after knee replacement surgery, at 68 years old, we were all devastated. Dad passed of heart issues at 83.
Neither of my parents experienced memory loss, but my wonderful mother-in-law, Gladys did.
Her husband passed when she was 68 and for the next 24 years she lived with her daughter Nancy and son-in-law, Jim. Nancy developed heart issues in late 2003. Gladys, because of the dementia, was becoming increasingly difficult to take care of (would not eat, would be up all night, would be mean to Nancy, would trash her room, would get angry, etc) and Jim, worried about his wife's health and Gladys' decline, had my mother-in-law placed at St. Ann's nursing home...against Nancy's wishes. Nancy spent 8-10 hours a day, every day at St. Ann's taking care of her mom where Gladys lived comfortably until she passed the following year at 93.
Gladys went from a sickly 93 pounds to 140 pounds while at At. Ann's. She was more calm and relaxed, most likely from the drugs they gave her and seemed content with her life. Although quiet, she was always happy and cheerful when we visited.
She would often call my husband, her son, by the wrong name, but she never forgot me. I would ask her, "Gladys, what's my name?" and she would pat my hand, smile at me and say, "you're my Cheryl."
I agree with you. Keep your mom in her home for as long as possible, even if it means hiring caretakers to help out. Since you are in walking distance to her, some of the care may fall on your shoulders but I really think you won't mind. You may even find yourself drawing closer to your parents, and isn't that what we all want?
Don't be sad. Enjoy your folks for as long as you can. I miss mine every day...
So sorry Ernie! My grandad was diagnosed with it in June 2019. He passed away September 2021 due to heart problems and he knew all 4 of his kids and all of us grandkids at his death. He just couldn't figure out that we knew each other. (For instance he'd talk to me and explain to me about his son "Will" (my dad) like Dad and I were total strangers.) It's an awful disease but don't get too hung up now on her not knowing you.
Sorry to hear this diagnosis, but pleased you now know what’s going on so your mum can get the treatment she needs. I have a number of seniors in my life and would say that the assisted living route is not the worse thing in the world. We’ve transitioned from worrying about our children and keeping them safe, to looking after parents and their safeguarding. I’ve got a number of friends also in this position and knowing that help is always around for your loved ones (when it’s the right time of course) is invaluable. What does seem to be prevalent with some is self neglect, so I’d be keeping an eye out for that. Your mum is lucky to have her husband and huge family loving on her right now. Are there charities to support them and/or give advice?
I'm sorry to read this. I know it's going to be difficult to know what to do for her, with her, etc. That being said, when my FIL hit the middle stages of Alzheimer's he became like a happy kid again-- which was 180º opposite his surly self. It was refreshing. I hope you have some pleasant moments during her decline, too.
Gigi - Thank you. I appreciate that.
Cheryl - Thanks for sharing this with me. My heart breaks for you. Your mom was so young. How sad. I can't imagine. I appreciate your insight. I do plan to enjoy them for as long as possible. I don't mind pitching in with her care. I"ve heard many people say that medications today can really make an impact and slow the progression. I'm hoping that is the case here.
joymarie - Thanks for sharing that. I'm really not that hung up on whether or not she knows me, but I feel like that's what I'm using as a measurement to gauge how well she's fairing. She feels sad about it and that makes me sad, but like anything - I expect there will be good days and bad days.
Charlie - Great advice. Thank you. My mom has lost so much weight. She says she just doesn't have much of an appetite. I've been bringing them dinner once or twice a week - enough portion sizes to last them a few meals. I'm not at all opposed to assisted living or whatever place makes sense when the time comes. For now, I think she's better off where she's familiar. They also have wonderful neighbors. They've lived in that house for about 24 years. Fortunately, they will be able to afford whatever is needed. And you are right, she is surrounded by family and love. XO
Ally - It is hard to imagine having my mom around and then also not really having her around. Not knowing what to expect is challenging. She's always been our rock, our sounding board, and problem solver. It will be an adjustment. Lucky that she's already 80. Hoping the medications will help too.
I'm so sorry Ernie. My MIL had Alzheimer's and it was so sad to watch her progress. (She got it in her early 70s.) Keeping her at home as long as it is safe for her and manageable for your father is the way to go in my humble opinion. Once you move someone with Alzheimer's from their home, the confusion sets in so quick. I witnessed this not only with my MIL by also my grandmother and my FIL.
I like your idea of a safe word but I feel like your phrase would make her think of someone other than you! ;)
Beth - Thank you. I appreciate your opinion. I do agree, and I hope that is the direction the family decides upon. No idea if there have been any further discussions about moving them, as I'd be the last to know.
I laughed, but you are probably right - my safe word wouldn't conjure up memories of me.
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