The Progression of Alzheimer's...
November 28, 2017 9:57 PM   Subscribe

... through My Mom's Crocheting.

From the poster of the image:
These squares represent her progression over the course of a year or two fairly early on in the disease (she suffers from early onset and was diagnosed at age 54; I was 22). I don't remember exactly when she stopped being able to crochet for good--she made squares for a while, then the circles, then the little pieces of crochet, until she got to the point where she just carried around the needles and yarn in her purse (which was otherwise empty since she couldn't really hold on to valuables anymore).

To the amazement of many, including her doctors, she has now lived 12 years since her initial diagnosis (they credit the level of at-home care she's been receiving by my family--especially her caretaker and my dad, who is truly a saint).

At this point she is completely non-verbal and unable to care for herself in any way (eating, bathing, dressing, walking unsupervised, etc.), but physically she is still relatively healthy, beyond issues resulting from her mental deterioration -- e.g., she grinds her teeth incessantly, which has caused significant dental issues). She has been on hospice since the summer, but the doctors say that it could be months or even years before she passes. It has been a few years since she was able to speak and several since she was able to identify who I am.
posted by Foci for Analysis (34 comments total) 27 users marked this as a favorite
 
Jesus. So sad.
posted by potrzebie at 10:06 PM on November 28 [3 favorites]


Seconded.
posted by jenfullmoon at 10:07 PM on November 28 [1 favorite]


Heartbreaking.

My life has come unraveled again
Like so many threads
Hey yeah my life has begun unfolding
In so many pieces
Hey yeah, my life has come unraveled again
Like so many threads in the wind, drift away, drift away

posted by jamaro at 10:55 PM on November 28 [1 favorite]


At this point she is completely non-verbal and unable to care for herself in any way (eating, bathing, dressing, walking unsupervised, etc.), but physically she is still relatively healthy, beyond issues resulting from her mental deterioration -- e.g., she grinds her teeth incessantly, which has caused significant dental issues). She has been on hospice since the summer, but the doctors say that it could be months or even years before she passes. It has been a few years since she was able to speak and several since she was able to identify who I am.

We desperately need legal affordable assisted suicide options in every state, and we need them yesterday.
posted by Beholder at 11:11 PM on November 28 [27 favorites]


Oh man. So heartbreaking. It's scary how this deterioration, so evident in her crocheting, took place over the span of only a couple of years...and that she has lived for 12 years since her diagnosis.
posted by hurdy gurdy girl at 11:12 PM on November 28 [4 favorites]


We desperately need legal affordable assisted suicide options in every state,

She’s clearly been way beyond the ability to consent for some time, even if she wanted to die. Ending her life would be non-voluntary euthanasia, not assisted suicide.
posted by Segundus at 1:26 AM on November 29 [25 favorites]


Or, in other words, murder.
posted by willF at 1:35 AM on November 29 [3 favorites]


God, my brain doesn't work right as it is, but losing what I have terrifies me to no end. I had a recent experience like this. My Dad, a college professor in his 70's recently passed due to an old melanoma that metastasized into liver cancer. That led to sodium imbalances which led to him retaining water which led to hydrocephalus, all in the space of less than two weeks. (Apparently the liver tumor had been around longer than that, but with no real symptoms). I watched him go from a (sometimes excessively) vocal, intelligent man to someone that could only moan, and, when I looked in his eyes, I could see no one was there any more.

Terrified me to no end (and I hate hospitals with a passion). They had him on a low on a low morphine drip for a while, for basic sedation, but they had to keep it low as the hepatic involvement led him to being unable to metabolise it properly. Finally, once everybody agreed there was no hope of saving him, they went ahead and raised the dose (he was a DNR/no heroics living will owner for years). I am as happy as I can be under the situation that he passed peacefully and I (despite my fears) went to see him as often as I could and was there for his last day.

(On a slightly lighter note, the crocheting made me think of, despite it being non-progressive, the pictures of spiderwebs from spiders on various drugs. One copy can be found here.
posted by Samizdata at 1:38 AM on November 29 [9 favorites]


She’s clearly been way beyond the ability to consent for some time, even if she wanted to die. Ending her life would be non-voluntary euthanasia, not assisted suicide.

Of course, but if I am diagnosed with dementia, I am not waiting for that to happen to me. Nope, nope, nope, not happening.
posted by Beholder at 1:38 AM on November 29 [13 favorites]


[One deleted. Yeah, no. We aren't going to argue that people with dementia should be forcibly euthanized. Come on.]
posted by taz at 1:43 AM on November 29 [30 favorites]


This is really awful. To add something a little lighter too - but I don't want to hurt anyone, I do understand how heartbreaking this is - it just so happens that my wife is teaching me how to knit (actually, she's teaching our daughter how to knit, but I want to knit with them) and this picture just gave me an idea. But I realize as I type this sentence that if I implement it, seeing my progress across a series of pictures will certainly remind me of this post.
posted by nicolin at 2:17 AM on November 29 [3 favorites]


Damn. I'm keeping a "I did this to myself because of the horrors of this disease" note locked away at home when I get old so any good samaritan that wants to relieve me of such an existence can hopefully escape prosecution.
posted by floam at 2:22 AM on November 29 [1 favorite]


Can we please stop with the euthanasia / assisted suicide/ preparing for euthanasia / suicide derails. Please?
posted by Faintdreams at 3:00 AM on November 29 [26 favorites]


Crochet is an activity requiring concentration, planning and a certain architectural mindfulness—with each closed stitch you are building something. The sample pieces all too poignantly illustrate the deterioration of this process—you can clearly see the little granny squares, the essential components of so many grandmothers’ quilts, morphing into tangled knots. As someone who uses yarnwork for relaxation this breaks my heart to see.

That single brutal image of all the pieces could make a good poster for dementia awareness.
posted by kinnakeet at 3:48 AM on November 29 [21 favorites]


Interestingly, one of the recommendations for people who have family histories of dementia is to actively pursue a physical hobby because muscle memory type behaviors can persist longer than more cognitive memories and the routine and activity may provide some comfort and stimulation.
posted by srboisvert at 4:01 AM on November 29 [13 favorites]


There are many fatal diseases but not many as cruel as Alzheimer's.
posted by tommasz at 5:37 AM on November 29 [4 favorites]


This broke my heart. I knit and am terrified of cognitive decline. Thinking that you could see it in the craft was not something that ever occurred to me, but of course. Alzheimer's takes everything.

.
posted by sockermom at 5:45 AM on November 29 [3 favorites]


I lost my mom to Alzheimers, and that image is just heart-breaking. That it illustrates the progression of the disease over a mere one or two years is powerful stuff.
posted by Thorzdad at 5:52 AM on November 29 [1 favorite]


Oh, man. I crochet, and somehow this picture is sadder to me than a lot of the testimonials of dementia I've read. The disorder of the eighth through tenth squares particularly makes me feel a sympathetic frustration with the creator who surely doesn't know what went wrong but realizes what came out is not right. It's positively painful to think of doing something you've always done, unthinkingly and routinely, and know that the result is not what you intended but have no idea why.
posted by jackbishop at 6:19 AM on November 29 [8 favorites]


Early onset Alzheimer's is particularly cruel. When you think of the full lives so many people in their 50's are living, to be felled by dementia that early is just - words fail me. The poster was only 22 when their mom was diagnosed - no doubt they thought they'd have their mom around and healthy for a long time, congratulating them on work milestones, dancing at their wedding, welcoming grandchildren, etc. - all the things one expects to have one's mom there for.

My heart goes out to everyone - the poster, the saintly dad, and especially the mom.
posted by Rosie M. Banks at 6:43 AM on November 29 [6 favorites]


Losing someone by degrees is heartbreaking. Thank you for the link.
posted by Alexandra Kitty at 7:34 AM on November 29 [2 favorites]


I’m no good at crochet, but I have done a bit and I’m not sure the samples here definitely display a clear mental deterioration, rather than a loss of dexterity. The switch from squares to plain circles seems a clear conscious decision, taken to avoid the more demanding stitches, quite possibly a reasonable one in the face of declining physical ability. Hey, she thought, I only do this to pass the time anyway, why torture my fingers with triple treble if it’s not coming off any more? The square where the centre is messed up is still a square, which suggests things are not completely out of control. The circles are actually nice and flat, though if you haven’t got decent control of your stiches you can find yourself crocheting an irregular tube instead (ask me how I know). The last one just isn’t finished.

Not that losing dexterity is great, either, and of course we know from the text that she has deteriorated mentally too. But I can imagine much madder, more dysfunctional crochet, stuff that would resemble a teratoma.
posted by Segundus at 7:53 AM on November 29 [2 favorites]


My uncle is coming up on year 7 of Alzheimer's. My aunt has some charming stories of the early years. They moved into senior housing just after his diagnosis so they'd have access to the care he'd need down the road and when they'd meet new people he'd explain that he "Has the Alzheimer's" so he probably won't remember them/their names. He could go off and take walks on his own for several years and continued to bowl with a local league for a while, too. He lost golfing earlier than the bowling. He was able to keep up with the accordion for longer than the guitar. His accordion music was the constant backdrop to my visits to my aunt and uncle. I loved hearing him play. He's in a full care facility now, separate from my aunt. Hearing about and seeing him loose his abilities--hobbies and daily care things--little by little was heartbreaking.
posted by carrioncomfort at 7:59 AM on November 29 [4 favorites]




The switch from squares to plain circles seems a clear conscious decision, taken to avoid the more demanding stitches, quite possibly a reasonable one in the face of declining physical ability.

Yeah, from the circle onwards it is, while still sad, less heart-squeezingly painful, because it suggests a (quite possibly subconscious) shift to the less frustrating activity of just working around in spirals and increasing occasionally. I try to imagine how, robbed of my short-term memory, I would respond to the ninth piece versus the eleventh. The ninth would induce in me an "I can't even make a granny square any more!" anguish, while the eleventh is just "OK, I'm making a round thing, I'm going to continue making the round thing".

But I am not in her head, and I don't know how she felt about any of this. But it is heartbreaking to think about how she might have felt, and I dare to hope that from the circle onwards there was more peace in the work than frustration.

My father died of a brain tumor which, when it finally became aggressive, moved quickly, but the hardest thing to watch was not his final descent into inability and death so much as that mid-period where he knew just how much he lost and was frustrated and enraged by the way his capabilities had diminished. So, uh, I may be projecting my own experiences onto this narrative.
posted by jackbishop at 8:38 AM on November 29 [4 favorites]


I do not understand the impulse to crochet-lawyer this post. This isn't peer-reviewed medical literature, it's a child trying to give tangible form to their parent's prolonged decline, and I think it does a heartbreaking and effective job of that.

This move away from granny squares to basic rounds illustrates decline even if it isn't necessarily evidence for it—for that you can see the OPs follow up comments in the thread. Of the last two pieces they write, "She would sit with her needles and just rework pieces of yarn, so these were things she was 'working' on I guess, in a very loose way?"

But I can imagine much madder, more dysfunctional crochet, stuff that would resemble a teratoma.

So can I. That isn't what was made. What's your point?
posted by wreckingball at 9:35 AM on November 29 [2 favorites]


What's to dissect if not the crocheting?
posted by floam at 10:21 AM on November 29 [1 favorite]


I used to teach knitting and crochet. The absolute saddest part of the job was middle age women bringing in their mothers for lessons. ‘Mom used to knit/crochet all the time! She doesn’t remember how/won’t do it and I think it’ll help her a lot if you could re-teach her!’ Or, Mom stopped knitting 5 years ago, and now she says she’s dkesnt remember how.’

Learning how to tactfully explain that the quitting is often a result of the forgetting, not the cause, that was hard. As others have said, there’s that midpoint where you know what you’ve lost, and it hurts.

I did have some clients who came and sat in the shop ‘for lessons’ but it seemed to me that it was more like extremely inexpensive elder care. Of course, the daughters often clicked their disappointment that mom didn’t accomplish anything that day. They often refused to have their mothers evaluated. Indignantly insisting, ‘she knows who I am!’

So awfully lonely to live that way, it seems. I’m so grateful that these illnesses don’t run in my biological family.
posted by bilabial at 12:05 PM on November 29 [7 favorites]


Yeah, I know it isn't a perfect predictor and they can arise spontaneously, but I am intensely grateful that there is no history of Alzheimer's on either side for many generations.
posted by tavella at 12:29 PM on November 29 [1 favorite]


That is a heartbreaking photo. My demented mother in-law started out repeating herself, and eventually couldn't even watch tv, as she couldn't keep track of the plot. The only kindness in dementia is that, by the time someone is changing your diapers, you don't know it. It's really the fucking worst.
posted by corvikate at 1:17 PM on November 29 [2 favorites]


Can we please stop with the euthanasia / assisted suicide/ preparing for euthanasia / suicide derails. Please?

Honestly I think it's perfectly natural to project one's own fears onto this. Who isn't afraid of succumbing to Alzheimer's or dementia? Who would wish it on even their worst enemy? The pictures are indeed interesting and tell a tragic, heartbreaking story that is happening to people all the time, but it's almost impossible to look at them and not think "What will I do if this happens to me? What will I do if it happens to someone I love?"

That said, I also agree that this thread, or any other Alzheimer's thread, is not the place to debate the ethics of euthanization. These are people who love and are loved, pointing at them and saying "This is the point where you should die" is crass and gross. If it's important to you then have a living will, no matter how much at risk for cognitive decline you are. Make sure your loved ones know your plan for this eventuality, and meanwhile show compassion for others who are struggling with this.
posted by Mr.Encyclopedia at 2:30 PM on November 29 [6 favorites]


This was heartrending.
My mom - a lifelong crocheter and fibercrafter - was in assisted living from 2011 to 2013, and when she couldn't/wouldn't walk anymore she went to a nursing home where she died in the fall of 2015. When I was cleaning out her room at the assisted living, I found a series of yarnloom crafts she'd made during activity time, on little plastic canvas rounds about 3" in diameter. About a third of them used yarns of multiple colors, had patterns, and were well and carefully put together. The next third were complete though not tidy, and solid red, with the exception of one that had a smidge of dark green at the center. And the last third were half-finished snarled rats' nests of red acrylic yarn.
posted by sutureselves at 4:23 PM on November 29 [1 favorite]


Bilabial, that’s something I’ve definitely seen in patients’ families (usually wanting “more rehab” to get their parent back to independence, when it is clear that the patient cannot engage with therapists at all).

The never-ending urine infection is another one (UTIs can indeed cause delirium, but if your parent has been going downhill for a couple of years, it isn’t all just a UTI).

All very sad. It must be very difficult to accept that the person who your parent was is slipping away in front of you,
posted by tinkletown at 4:23 PM on November 29 [1 favorite]


I don't recall where I read about the bottle of pills in the bathroom with "If you can't remember what these are for, take them now." It's just heartbreaking, and I don't know how I would deal with it.
posted by RedOrGreen at 7:26 AM on November 30 [3 favorites]


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