Second Mother

November 6, 2017 4:17 AM

How do we know when it starts? How to differentiate dementia from climbing the stairs to retrieve something, but being unable to remember what? Do we declare an onset of Alzheimer’s after forgetting a famous face (you know, what’s his name?). It’s a dim boundary, but at some point our neurons struggle to recalibrate. The cortex and hippocampus are irrevocably changed. In memory loss, there is already death. Cells die and each one is a divesting of some part of the past. The cortex shrinks where the cells used to be. The spaces in between expand. Islands in the sea of the mind. An archipelago of the former self.
posted by ellieBOA (21 comments total)

When I read this, I am struck by how lucky they were. They had social services, they had a nice nursing home, and it only took a couple of years for Terry to decline. There are people - and I know this from my own life - whose decline lasts for decades. You can live with dementia for twenty years - twenty years of constant care by an aging partner and family, twenty years of no income, and while the first few are manageable, the last decade or so are brutal.

Every dementia should have a comparatively short course like this - it's tragic and terrible, but anyone can do a couple of years. It's when you're looking at two decades and counting, with no real end in sight, that things get grim.
posted by Frowner at 4:31 AM on November 6, 2017 [24 favorites]

Yes. My widowed landlady is the sole carer for her mother who has been suffering for the past twenty years. Now in geriatric home since the past three (hence my landlady). She was over last month and grim and bleak are the only words to describe it.
posted by infini at 4:50 AM on November 6, 2017 [2 favorites]

It can be very cruel, especially to the person's loved ones. Thanks for the post.
posted by ersatz at 4:58 AM on November 6, 2017

What a beautiful tribute to a much-loved person. Reminiscent of the end of Woolf’s “The Waves,” as Bernard faces ‘a world without a self.’ Ditto what Frowner said.
posted by mmiddle at 5:03 AM on November 6, 2017 [1 favorite]

From 19-22 I took care of my grandmother who suffered from dementia and watching her suffer and desperately trying to help her as she slid further into the anxiety and panic broke something inside me that I don’t think I’ll ever get back. It was the moments before she was too far gone where she’d be lucid for 10-15 seconds and crack a wry joke about how she’d been acting that was the worst for me because I knew in a couple of more seconds she would be freaking out fearing she had lost her wallet or forgotten to pay a bill or the mortgage (the house had been paid off for 20 years what?).

I didn’t know what it was. I tried to tell my family. But they just laughed it off as “she’s always been a little batty you know her”. They did that for 2.5 years.

Then one day I told them I couldn’t take care of her anymore and I moved out.

Three months later she was in a nursing home and 7 years later she died.

The last time I saw her was in 2001. She died in 2003.

I will take my own life I swear it on the old gods and the new if that ever starts to happen to me.
posted by Annika Cicada at 5:10 AM on November 6, 2017 [27 favorites]

My Mom is in the early stages of dementia. For the time being, anti-anxiety meds are helping, but I know it's just eh begining. Since I'm the only caretaker, I'm trying to decide just how much of my life I'll be able to put on hold while looking after her.

The worst of it is that nobody is there to help and I really have no clue about what to do; plus, the constant drain on my scarce ability to hold it all together in my own life.
posted by mightshould at 5:46 AM on November 6, 2017 [10 favorites]

Hugs and love. Are there any elderly support or church support organizations near you at all?

I think if I could go back and do it all over again I would try to make my grandmother laugh as much as possible. I’m not sure what I can offer in advice but just, be as sweet as you can to your mom and yourself and don’t beat yourself up if you freak out and lose your shit and say something or act in a regretful way. You’re not a trained professional. This stuff is challenging and difficult and scary.

One other thing: start making lists and notes. Over time they will go everywhere.

If you ever need to talk memail me.
posted by Annika Cicada at 5:58 AM on November 6, 2017 [8 favorites]

mightshould, I'm so sorry. Seconding what Annika said; also, if your mother starts reporting harmless things that aren't true, just go along? ask all the questions you can and go along. It might be a way to connect, strangely speaking.
posted by allthinky at 6:07 AM on November 6, 2017

Alzheimer's and/or dementia don't seem to run in my family (knock on wood), but I still live in fear of it. The last time I ever spoke with my grandmother I walked away uncertain that she knew who I was, but as heartbreaking as that was it was very shortly before she passed away and until then she was lucid. I can't even imagine how painful it must be to watch a loved one decline like that for years and years.
posted by The Card Cheat at 6:08 AM on November 6, 2017

mightshould...Have you tried getting in touch with the Alzheimers Association to see if there are any support groups in your area? My local group was helpful in helping understand what was happening to my mother and what I could do. Number one on the list is always for the caregiver to take care of themselves. I would also recommend picking-up a copy of The 36-Hour Day. It's a very helpful read.

My heart sinks whenever I hear of someone just starting down this path with a loved one. It's a terrible, frightening condition, and it's very easy to try to hang on to being the caregiver long after the point where the loved one should have been moved to a care facility. Yet, it's so hard to let go.

One thing you definitely need to do with your mom is make sure all her legal papers are in-order. Wills, Powers of Attorney, Medical Powers of Attorney, Advance Directives. If you are her sole caregiver, you should be her assigned Power of Attorney and you also need to be added to any bank or checking accounts she may have. You also need her to give permission to agencies like Social Security and Medicare to speak with you directly.
posted by Thorzdad at 6:10 AM on November 6, 2017 [7 favorites]

Mightshould, get the legal stuff in place. Get help as soon as possible. Someone I know has Lewy body Dementia. It's so shocking to interact with the shell of the person who used to be there. Fortunately, he does not experience the panic or anxiety, and his wife is great at getting resources lined up.

Nature is so often unkind.
posted by theora55 at 6:30 AM on November 6, 2017

Oh my; thanks for all of the helpful advice and offers. I will implement the missing stuff asap. but, I didn't mean to make this about me. There are so many others out there who are just as stressed and/or scared of dementia ......
posted by mightshould at 7:26 AM on November 6, 2017

Mrs. Mogur is in year 3 of fronto-temporal dementia (similar to Alzheimer's, but attacks the speech centers first), so I'm not going to read the article, but please feel free to PM me if you have any questions.
posted by Mogur at 7:31 AM on November 6, 2017 [3 favorites]

Detachment is an important skill, and so is laughter. Part of what made it palatable in the past was that people accepted it, not that it was any less awful (my grandmother had early-onset Alzheimer's and it was just a given for the family). For the last ten years of her life, I took care of my mother with Parkinson's, who had related dementia, and though it was often awful to her her articulate some of her delusions, I then laughed about it with my husband and wrote about its humor and impossibility as well. If you want to be a caregiver, the first person you have to care for is yourself. If your brain starts to go, better learn to laugh at yourself. In my mid-sixties, I no longer can retain numbers in my head as well as I used to, and names keep slipping away from me, but that's pretty normal. My older cousin wrote to me, " Quite honestly, I stopped doing names about 5 years ago. I recognise faces... I nod, smile...all sincere. Glad people recognise me and I them. These days, I let students know from the start that words often hide from me; that I launch myself like a toboggan at the beginning of a sentence, hoping that each word will be waiting when I get there. Now and then it isn't, and we all hunt for it. Together."

I am not denying tragedy. I'm just saying continuing to live when tragedy happens is something we all may have to do at some point, so we might as well be kind to ourselves.
posted by Peach at 7:32 AM on November 6, 2017 [8 favorites]

So this is my second round of family with Alzheimer's dementia and I feel like the local expert these days. This essay really resonated. Especially the parts about stalling, covering for not being able to understand the question. Though she didn't really note the fear in their eyes while they're trying to make their brain work at two things at once.

mightshould - I also am completely open to questions or any assistance via memail. Read the 36 Hour Day as soon as possible. It was a huge help to us.
posted by Sophie1 at 8:05 AM on November 6, 2017

I work for a chapter of the Alzheimer Society in Canada; thanks for this - these kinds of stories are great.

Some other resources we/caregivers recommend:
-Learning to Speak Alzheimer's
-Creating Moments of Joy
posted by nubs at 12:29 PM on November 6, 2017

OK, I glitched up mentally and hit post too soon!

Just wanted to add that one of the most important things I've learned since coming to work here is the idea of ambiguous loss (pdf), which helped me find the language to talk with my wife's family (my father-in-law has Alzheimer's) about some of what they were going through; the constant grieving of loss without closure that happens for everyone, along with the anticipatory grieving of the losses still to come. It's really tough, and a lot of families struggle with that emotional toll on top of all the other stresses.

And because the article raises it, the question of the gender difference in Alzheimer's is a really fascinating one. We have also learned that the more formal education a person has, the less the risk - which has raised questions about how unequal access to educational opportunities between genders has impacted the rate. And there is starting to be some discussion of the fact that our model for what Alzheimer's looks like in the early stage is based primarily on what it looks like in women, and that it might look different for men, and so they may be underdiagnosed (it's a bizarre reversal of pretty much our model of every other health condition, where the model is based on what it looks like in men).

Anyways, I can go on and on about this stuff, but I just wanted to say that there are some good resources out there, and if anyone wants any help or ideas or just to talk, feel free to MeMail me.
posted by nubs at 12:40 PM on November 6, 2017 [3 favorites]

I will take my own life I swear it on the old gods and the new if that ever starts to happen to me.

But, and this was pointed out, when? At what point in the decline do you seek a humane (and hopefully legal) end to your life? If you wait too long, your fading mental health might steal your opportunity. If you feel it's better to be safe than sorry, you choose a much earlier time than is probably necessary.

And strokes are just as terrifying. You can be in good health, pass every health check, and - boom - you wake up in a hospital as an invalid, now unable to seek out the humane death that you wanted for yourself, because you are no longer able to pass a competency test. Living hell.
posted by Beholder at 1:29 PM on November 6, 2017

One thing you definitely need to do with your mom is make sure all her legal papers are in-order. Wills, Powers of Attorney, Medical Powers of Attorney, Advance Directives. If you are her sole caregiver, you should be her assigned Power of Attorney and you also need to be added to any bank or checking accounts she may have. You also need her to give permission to agencies like Social Security and Medicare to speak with you directly.

And ask an attorney if it's too late to transfer home ownership, because "they" sometimes come after the estate once the patient passes away if there was a lengthy stay in a nursing home.
posted by Beholder at 1:34 PM on November 6, 2017 [1 favorite]

The Alzheimer's Association Website at alz.org is full of resources. They also have a 24 hour support line at 1.800.272.3900. They will answer questions, help find resources, or just listen. One of the best lessons my wife and I learned early on in caring for her Mom is that we're not alone. There hare hundreds and hundreds of caretakers facing the same challenges and frustrations. We have good days and bad days. Alzheimer's is a horrible disease but we do our best along the journey.
posted by jazon at 2:24 PM on November 6, 2017 [1 favorite]

With all due respect to this subject, I think it is important to point out that dementia and Alzheimer's are not synonymous. The importance lies in the fact that some forms of dementia are more treatable than others, some can even be reversed, e.g. dementia caused by normal pressure hydrocephalus. Proper diagnosis is, of course, very important.
posted by charlesminus at 2:50 PM on November 6, 2017 [1 favorite]