Category Archives: Dementia

Holding the Baby

Our friends Matt and Katie have a new baby. I was sitting here looking at his picture and blissing out on his cheeks – Is there anything better than fresh baby cheeks? – and I got to thinking about the last time they had a new baby. It was in the spring of 2014 and I remember this because right then, things was rough.

I was stressed out on all fronts and I was really, really looking forward to my trip to the East Coast in a few weeks, when I was going to be in a friend’s wedding and hang out and see some other friends for awhile. I remember saying at one point that for a week, the only bottom I’d have to wipe would be my own. (Potty training is a difficult time and may result in inappropriate poop comments from all parties involved.)

Mostly, it was getting harder and harder to watch the slow decline of my mom’s mind. I was just so sad all the time, and angry almost as often. Except I had this little reprieve once a week when we would go into our Sunday School classroom and either Matt or Katie would hand me the baby, and I would sit there and smile at him, or stand and sway if he wanted the motion, and pat his perfect, padded little behind.

baby

Not actual baby. Free stock photo, because I don’t have permission to plaster their kid on the internet and I’m not texting to ask because they just had a baby and I am socially awkward but I do understand some things.

You guys, he was the bestest baby. They’re all the best baby, I know, but truly he was. Just this tiny unblemished warm bundle of humanity, content to snuffle against my chest for an hour. Paul, who is the most unrepentant baby hog I have ever met, never took that kid from me one time. I asked him why once and he said, “I just can’t. You look so happy.”

So I went on the trip and tooled around Cape Cod in the summer time in my rented convertible and I had a pretty good time until my sister called and said they had found my mom lying on the sidewalk between our houses. I went home. Instead of being in a wedding, I helped plan a funeral.

When we went back to church after, I was feeling pretty raw and I wasn’t sure I wanted to go to Sunday School where there were fewer people and they might expect things from me like actual responses to polite conversation. But Paul convinced me, or something, and I went in and sat down, and somebody handed me the baby.

I am certain I did not hear one word that was said in class that day. I sat there and held the baby and bawled. Paul put his arm around me, and Matt and Katie sat beside me quietly and somebody handed me a Kleenex and everybody shut up and let me be.

Sometimes I hear people say that they are afraid to go to a funeral because they don’t know what to say to the grieving, and I kind of understand this, but mostly I think it’s balderdash. It matters very little what you say (unless it is something like, “Well, of course he got cancer after he smoked all that time,” or “Buck up, camper!” in which case the bereaved would be entirely justified in punching you in the face). Just show up.

Show up, sit down, hand over a hanky. It isn’t complicated (although that doesn’t make it easy). Grieving people don’t need you to say something profound. They need you to be there, and to love them while they suffer. The loving them bit almost always looks less like a perfectly crafted statement of sympathy and more like action. Maybe bring a casserole. Maybe bring them a hug. Maybe hand them the baby. You’re smart; you’ll figure it out. And even if you don’t, it will matter most that in your glorious, awkward, fragile humanness, you just showed up.

Can you hear me now?

We decided to try a medication alarm for my mom to see if it helps her remember to take things. I was setting it up, and I think someone was having a little fun at work when they were designing the volume options.

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What a Weekend

It really has been quite a weekend. We didn’t have any big plans as such, but I don’t think I’ve stopped moving all weekend except for the hours I’ve actually been sleeping.

Paul worked on Saturday, but came home and immediately packed up the boys and some food and took them off to a new fishin’ hole in Coshocton County.

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One of the guys Paul works with has a cabin down there and invited them all down. No fish were caught that day, but the boys didn’t much care. They had a grand time running up and down the path beside the dam, and getting their feet wet in the lake.

I stayed home and cleaned the house, did laundry, and went after all those projects that I’ve been putting off since I don’t even know when. I didn’t get through the list, but I did make a pretty big dent.

On the way home, the boys stopped in at the local tractor pull to see their cousin, who was pulling later that night. The tractor pull means two things: 1) Summer is really here. 2) Supervision under the sole eye of Papa, whose threshold for good behavior is somewhere in the vicinity of “don’t make your brother bleed, and don’t sass grownups.” In comparison to the regime under Mama, it’s quite relaxing.

Sunday was church followed by a next-door fishing trip, followed by company for dinner. Company included a six-year-old boy who can outrun both Levi and Elias. He let them catch up occasionally so the game of tag didn’t get too monotonous.

I kept after the house projects on Monday, and a great deal of gardening was done by everyone else. They planted brussel sprouts, which I’m pretty excited about. I’m on a huge brussel sprout kick lately – words my ten-year-old self would have found entirely unbelievable. What did I know then anyway?

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We had pancakes on the porch this morning after Mary Lou and the boys got back from the Memorial Day ceremony at the graveyard. (There were no really interesting stories from that jaunt this year, which is nice for Mary Lou, but sad for us. One year the public prayer was interrupted by heartbroken sobbing about a lost worm. Mary Lou was pretty embarrassed. She really liked that worm, I guess.)

20140526-180614-65174766.jpgMom and Elias continued their shameful track record regarding public displays of affection.

Mom is continuing to have major lapses in memory and logic. Today she was trying to copy family information from one Bible to another. She couldn’t figure out how to list her children in birth order, even though the original list was organized that way. In a more entertaining turn, she could NOT figure out why she didn’t have Mary Lou’s wedding date written down. She was bemused to learn that it was probably because Mary Lou has – so far – never been married.

She’s definitely slipping more, and maybe a little faster. It continues to be sad and hilarious in turn, and sometimes simultaneously. I’m glad that she can still enjoy her grandchildren so much. Even if she can’t always remember their names.

I know that this isn’t what the remembering of Memorial Day is really about, but I am grateful for the memories we made this weekend – funny, upsetting, and ridiculous as they may be. I hope your weekend was as good.

 

Have We Met?

This weekend was pretty crazy. Not anything bad, but just stuff happening constantly. I was away from the house almost all the time, except when I was sleeping. I hardly ate any meals at home. In a twist that surprises no one, this means I didn’t make the best possible choices about food. Delicious choices, yes. But a little too rich for my body to be happy with me. By Sunday evening, I needed to let things settle down.

So when I was offered some meat at the dinner table, I asked for a very small piece. The woman sitting next to me smiled and asked, “Not much of a meat eater?”

Which is an unremarkable snippet of small talk, if you’re sitting to someone you’ve just met. I was sitting next to my mother.

A lot of things about dementia are really upsetting. Sometimes devastating. That wasn’t the case here; I didn’t feel hurt or sad. It was just a little surreal to be making polite stranger chit-chat with my mother over mashed potatoes.

Hello, I’m your daughter. Have we met?

i thank you god for most this amazing

I’ve been in kind of a dark place this past week. I don’t know if I can say exactly why. All of the things that are wrong have been wrong for a long time, with the exception of the dead washing machine and some extra-stressful stuff at work. And they will continue to be wrong (though I hope I can figure out how to get the washing machine issue resolved; I am grateful to be able to use my mom’s but I really miss mine, like way more even than I thought I would). And I’m mostly slogging along, not always joyfully, but capably. This week, though, just pulled me under. Thursday night, a friend very kindly asked me how I was doing, and I sort of … melted. Which, as his wife said, is really an answer, even if I didn’t get any words out. By noon on Friday, I texted a different friend that I felt like I might need bail money by evening. (I didn’t. Just for the record.)

I was really not sure when I was going to surface.

This morning, I slept until 8:15 (Paul pulled off this minor miracle by actually removing the children from the house), and I woke up feeling almost normal, instead of already defeated. I had scheduled a kettlebell class (total honesty – if it hadn’t already been paid for, I probably wouldn’t have dragged myself out) and I worked myself nearly to exhaustion. Which felt great. (I still don’t get how that works, but I don’t have to understand it to enjoy it, I guess.) It was so warm and sunny on the way home that I rolled both windows down and played the music alarmingly loud and felt almost like a teenager again, without the angst of wondering if he likes me likes me. (Spoiler alert: He does.) All of the wrong things are still wrong, and I’m still way behind on way too many of the other things, but I feel like I might make in fact make it.

I don’t really believe that we’re given hard things specifically to shape us. To me, it seems to take the prosperity gospel’s sky fairy and turn him into a sky bully who likes to pile it on just to see how much we can stand. What I do believe is that we get to decide what to do with hard things when they come. We can get angry, we can get bitter, we can survive it, we can learn something, we can choose hope. Maybe all of those things at different times.

What I hope I am learning right now – what I am trying to learn – is that even a landscape that looks bleak isn’t completely barren. Hard weeks (and months and years) have good days in them. Murderously hard days have bright shining moments buried in the middle sometimes.

My mother doesn’t know what a Sharpie is anymore, but she still knows that the mangled knock-knock jokes of a five-year old boy are hilarious on more than one level. The four of us laughing in the car as we drove home from lunch on Thursday was the best moment of that day.

I think this slow, painful loss of the mother-child relationship on one side of my life is making me that much more careful of the mother-child relationship I still have. There is little that makes me happier than one of the boys’ arms around my neck, and I’m learning to hang on to those moments as long as I can.

It has been a long winter, but the trees are beginning to show buds. I’ve been thinking all week of one of my favorite poems. I tried to pick a line or two, but I couldn’t decide. It’s been giving me little moments all week. Hope you can get one from it, too.

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i thank you god for most this amazing
day:for the leaping greenly spirits of trees
and a blue true dream of sky; and for everything
which is natural which is infinite which is yes

(i who have died am alive again today,
and this is the sun’s birthday; this is the birth
day of life and of love and wings: and of the gay
great happening illimitably earth)

how should tasting touching hearing seeing
breathing any-lifted from the no
of all nothing-human merely being
doubt unimaginable You?

(now the ears of my ears awake and
now the eyes of eyes are opened)

~ e.e. cummings

Bad Night

Mom is having a really bad night.

It would take too long to explain exactly what’s happening, and it would be fundamentally uninteresting to anyone not involved. So I won’t bother. The shortest possible version is that she’s mad that we (her children) haven’t made progress on doing something that, when we told her someone had suggested it, she was dead set against doing.

If that seems confusing and illogical, it’s because it is. And I know that it’s not really why she’s mad. She’s mad because she doesn’t have control over most of her life anymore. I can only imagine how crappy and frightening and unfair that feels.

I also know that it’s not really us she’s mad at. I’m doing my best not to take it personally. And not to feel responsible for fixing it. That might be the heart of the matter. When she’s mad or upset or sad, my instinct is to fix it. I think if I find the right thing to say or the best thing to do, it’ll make things better. For Mom, for me, for my sister, for everybody.

Know what? Nothing will fix this.

Nothing. There is no thing I can say, there is no gadget we can find, there is no magic bullet. There is nothing that will make my mother, in all her glorious imperfection, start acting like my mother again. She is gone. I know there will be better days and moments. I remember to appreciate them. I do. But the trajectory is down. And it feels like we’re picking up speed.

We cannot get off this hideous ride. I am sad, and scared, and weighed down, and angry. I am feeling things I can’t quite identify by name. I feel alone, even though I know am not. It is a lonely proposition, watching your only living parent drift away.

I feel like if I have to listen to her tell me one more time how she wants to die, I will scream so loud and so long that my vocal cords will explode. I thought for awhile that she was only telling me, because I was getting it several times a day, and surely that was all of it, no? No. She’s telling everyone. She’s telling people she’s never met before how very much she wants to die.

I actually get this, intellectually. She’s miserable, and frightened. She believes in heaven, and that she’s going there. So why not go now? Seems a lot better than what she’s currently doing. But hearing your mother’s death wish over and over and over is demoralizing in a way I can’t fully express. And I feel, illogically, embarrassed for her that she’s telling other people. We’re from the Midwest. You don’t just walk up and tell people about your dark, scary feelings, amirite?

I do get that irony of me saying that here, in this context. But writing helps me exorcise my demons, so here I am.

Tomorrow will be better. If nothing else, it’s Friday!

 

Serious Question, Though: Does anybody local know of and recommend a support group for caretakers/family of dementia patients? It’s not something I’ve done before (see comment above about Midwesterners and feelings), and I have no idea when I’d find the time. But I’m not really okay, and I know it, and I’m willing to try.

 

The Day Keely was in Denial (Guest Post. Ish.)

This is not my story. I am sharing it with permission. So these are the words of my sister Mary Lou, edited lightly for perspective and clarity (mostly for those who don’t know all the names).

Bob called my sister’s house. Bob is a guy from southern Ohio that befriended my nephew Nolan, and has kept in touch with him over the years. Even recently, when Nolan moved several counties east of us for work.

So anyway, Bob called, and asked about how Mom is slipping. Keely, my niece, who picked up the phone, flatly denied it. Bob approached it a bit more gently, and said that Nolan says she gets mixed up … confused … maybe depressed? Finally, Keely came right out and told him: Mom is fine. She does not know what Nolan thinks is going on, but he’s just WRONG!

At this point in the story, both Mary Lou and I are concerned not only for Mom, but for Keely. I mean, she’s been spending a lot of time around here, and she seriously hasn’t noticed?!? Either her powers of observation are nonexistent, or she’s so deeply in denial that we may never be able to pull her out.

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Nobody knows exactly when the penny dropped, but Keely finally realized that Bob, so patiently repeating his concerns, thought he was talking to Mary Lou.

Which means the mom who is losing it, well … is. And Keely had spent the last ten minutes impersonating her mother. Her lunatic mother, hip deep in denial. Who had maybe been a teensy bit rude, when pushed.

And because she was embarrassed and doesn’t know Bob very well, she very nearly didn’t fess up to him. But because she’s a good girl and loves her mother, she did.

We do wonder if Bob has quite recovered. Bet he doesn’t call back.

Possibly the best part of this story* is that, after no one told Mom (my mom, not Keely’s!) about it by silent mutual consent, Mary Lou reversed herself and told Mom the whole story. She said Mom so completely enjoyed it that she was sorry for ever doubting her, and it was pure joy to hear her giggling so much.

*And the only reason I’m sharing it so publicly.