Lately I have become aware of some big changes with GM. At first it was little things, but, as things do, they add up. Usually things would happen and I would think to myself, “Not that is interesting. I wonder why she is doing that?” These things include her obsessive desire to fold things. All things. Anything foldable will be folded. It also includes a new bathroom “will I make it?” phobia that results in her getting up around 10 times every night to go to the bathroom. And I know it is ten because there will be ten little balls of toilet paper scattered around the bathroom in the morning.
Last night I began to wonder if maybe she had a UTI or some sort of infection that bloomed after her stomach virus fun. In my searching I found a list of things that described GM to a T. So it doesn’t appear to be an infection. It does appear that GM is doing really great at checking every single thing off a list of things that determine what stage of Alzheimer’s she is living in.
Can you imagine a list of all of your personality quirks, all of them, being out there in the open? And that the sum of the list would equal a concrete stamp of what and who you are? In my mind I see a list of all of my crazy issues: Needs to be in control, Needs to be assured of love, Needs routine, Needs coffee, Needs support, Needs skittles once a week, Needs the air conditioner on all the time, Needs plaid. Then imagine plugging all of that in and getting a specific result: Calliope is in Stage 2 of being a sad single girl in her 30′s.
And then you realize that there is a whole world out there of other skittles needing single girls and suddenly your oddities don’t seem so ridiculous but, in a way, unify you with an abstract concept of others floating around on the same dimension as you. You are not alone. You are not weird. You are the same.
With GM it was a little different to see her defined. Where before I thought her new quirks were sort of unique and interesting I now see that it is something that is extremely common. And “common” is never a word I would pair with GM. In a way it is like all of these typicalities have completely robbed her of her true, core, individuality.
1) Memory difficulties continue to worsen, significant personality changes may emerge and affected individuals need extensive help with customary daily activities. At this stage, individuals may:
2) Lose most awareness of recent experiences and events as well as of their surroundings
3) Recollect their personal history imperfectly, although they generally recall their own name
4) Occasionally forget the name of their spouse or primary caregiver but generally can distinguish familiar from unfamiliar faces
5) Need help getting dressed properly; without supervision, may make such errors as putting pajamas over daytime clothes or shoes on wrong feet
6) Experience disruption of their normal sleep/waking cycle
7) Need help with handling details of toileting (flushing toilet, wiping and disposing of tissue properly)
8 ) Have increasing episodes of urinary or fecal incontinence
9) Experience significant personality changes and behavioral symptoms, including suspiciousness and delusions (for example, believing that their caregiver is an impostor); hallucinations (seeing or hearing things that are not really there); or compulsive, repetitive behaviors such as hand-wringing or tissue shredding
10) Tend to wander and become lost
The above list is every single defining trait of Stage 6 of Alzheimer’s. GM got 9 out of 10 (thankfully, oh sweet thankfully, we do not have any issues with her wandering.) It was really so surreal to see the list. I don’t even know if I am getting that point across here. I mean we knew she was going into stage 6 based on one or two things- mostly based on memory issues- but to now have virtually all the other traits checked off was a mind blow.
And then I clicked forward on the Alzheimer’s Association website. There are only 7 stages and I wanted to know what to expect next. And sadly so so many of the things listed are things I am already familiar with. GM forgets how to eat some days. You have to show her that food goes in the mouth and then you chew it. I have become so afraid of her choking that I really only serve her soft foods like mashed potatoes or creamy sweet pies. On some days she doesn’t know what a spoon is for. She needs assistance with most of her walking and sitting. Some days I catch her watching the news with an odd expression on her face. When asked she will respond, “I have no idea what these people are saying. It all sounds like (and she makes a weird noise).” Sometimes she will ask me if I hear the church bells ringing.
But I think what really choked me up last night was that soon, any day now really, GM may loose her ability to smile. I am trying not to think about that too much.
{ 23 comments… read them below or add one }
Sometimes I think it’s a shame for us commenters that you write so well, because I’m left unsure what to say other than, “what a beautiful and sad post.” Because it is sad, but you write about it in such a beautiful and poignant way.
Here’s hoping that, as you don’t check off the symptom for wandering, you never have to check off the one for losing the ability to smile.
I’m a little chocked up after reading that so I really just have to say “ditto” to what N said.
I was OK until I got to the smile thing. I had no idea Alzheimer’s did that. How heartbreaking.
dear & sweet cali, you write so heartachingly beautiful… and i dont have any other words of comfort or reassurance or anything, because in the most sucky way, with alzheimer’s, there arent any really.
i hate this disease. and while GM’s symptoms indeed make her “common” as a woman with alzheimer’s… YOU are the one who keeps her the individual and extraordinary one-of-a-kind woman that she is. in your memories, in your words, in sharing GM with us ~ to US she will never be common. you are the one who is caring for her so lovingly and are dedicated to keeping her dignity thru it all. to me, GM will never be just a little old lady with alzheimers… she is a spark of a woman, beautiful and smart (and my fav) who knows how to fly a plane!! lots of other things about your GM that i love…
mainly that she has drawn out the beauty and light from an already amazing woman’s heart!!!
love you bunches…
It is clear that you are taking wonderful care of her.
*hug* It’s difficult to really see things unless they’re laid out in front of you. It’s little things, but the sum of those things is a tough diagnosis and realization. It’s going to get harder. And yes, she may forget how to smile. But you won’t forget. And she won’t forget how to love.
what N said, Cali. and a virtual hug.
It’s such a cruel disease that it robs sufferers of so many things that once defined them. And how heartbreakingly sad to lose the ability to smile. She is a very unlucky lady to have this happen to her, but also very lucky to have such a wonderful and loving caretaker as you.
It is such a bizarre thing to see a person in a list of features. I think what makes it especially difficult and surreal is that you know GM so well, and you know the qualities that make her unique. To see this rather generic list for those with alzheimers has got to be not only scary and sad, but just plain weird because she’s not a list of symptoms; she is a person whom you love. So I think I get this feeling. You described it beautifully and poignantly.
Hugs to you.
Oh sweetie, it’s such a cruel disease. I’m so sorry for how things are going. I want nothing more than to swoop you and GM up and make it all better.
sending you so much love and strength…….
Personality traits are not symptoms. And diseases do not define a person. Stay strong.
PS ~ how many GM’s out there have their very own IVP/blogging Fan Club?
(hope this makes you smile and youknow i am not making fun…)
Agreeing with N, such a beautiful, sad post. *hugs*
Urinary tract infections are SUPER common and the symptoms can be identical to those of advanced Alzheimer’s…it wouldn’t hurt to have her doctor check to see if she has one. Recently my Gma refused to take her meds, was disoriented. Initially it was assumed it was her Alz progressing…turns out she had a UTI…she is taking her meds again. Just an FYI…all they have to do is have your GM pee on a stick (ah we are so familiar with that concept)…to diagnose.
Cali-
you’re doing a wonderful thing. even in these terrible times, remember the good. she needs you now more than ever. you’re a blessing and a testament to her as a grandmother. thinking of you daily
Sara
aw cali. i don’t even know what to say to a post like this. except that i’m here for you. i do believe that you have a whole blog full of GM fans. she is so special. i wish her (and you) nothing but p-e-a-c-e.
So sorry Cali. It’s hard to know what to say.
For a couple of years I assisted (I won’t say cared for as my grandmother didn’t live with me) my grandma as she lived through Alzeihmers. She lived in a high care nursing home (gag) not far from where I lived, and I visited her for hours near daily. I wish that I had kept some sort of record of my time with her – as it was incredible to be with someone who was constantly showing you exactly who they were. Not who someone wanted them to be – just who they were right at that minute. It was hard to see her change, but I remember also feeling as though I was seeing her like she might have been before she grew adult layers. It is so wonderful that you keep reflecting on all the moments you share and to have such an intimate knowledge of a person that is experiencing such a different way of being is remarkable. I don’t know what to say other than I hope you see many more smiles and to remember while knowing the stages is really important, people can also miss some symptoms all together – of course I don’t need to tell you that. You know something, my grandma didn’t stop smiling until one week before she passed away – and the beautiful thing was that she smiled once more right at the end. And I hope and am sure that is a while off for you.
Oh, Cali. Oh, honey. What a cruel disease. My heart goes out to you.
i’m sorry to read about her progression. i can’t imagine how difficult it is for you. i hope the moments of pure joy bring you the peace you need to carry you through the more stressful and sad. thinking about you and your GM…
Agreeing with all the above. What a beautiful and sad post. I remember so many of these habits etc from when my mom ran an adult family home and she had a couple of alzheimers patients there. It was so sad to see the deterioration.
Oh love. … beautifully put and so heartbreaking. Much love to you and GM
Even on the days when it may seem hard for you, remember that you are a very strong woman and an amazing granddaughter. Take care of you.