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3yrs later, her mind's wanderlusts appears intent than ever, to be elsewhere but here; in the present. #Dementia140
Today 3rs ago, Mama buried her best friend all through 11 births, 4(?) miscarriages, to the fading of her memory.
By (4?) I mean known miscarriages.She was really secretive. Sometimes, I still think she is still secretive even by her mind not being here.
I can only account for one miscarriage that she told me about. One of the 'good' days when she'd remember us. I had gone home to visit and
I had gotten her a new sweater. She had this glee on her face like a child receiving a new toy. So she grabbed my hand and said thank you.
I started to get up thinking that was it until she grabbed on my arm and she whispered rather urgently, "You know, there was another one..".
I thought she was speaking about my immediate elder bro seeing I am the last of the litter. I asked her, "Mbithi? Yea he's in the kitchen."
She goes, "No, there was another one between you and him. But I lost it." It hit me, ala miscarriage none of us knows? Now that her mind was
"here" I thought let me try milk the story. So I asked her what happened. Her face darkens just a bit, then she starts talking.
She's talking when one of my younger nephews comes bursting through the door and bangs it behind hime. Mama gets startled. And looks at me.
And just like that, the moment goes. She looks at me like a damn stranger, looks at her hand grasping mine. She lets go like I scalded her.
And just like that,Mama slips right in front of my eyes.Folds her hands on her lap, sits upright, stoic, says "Welcome to my house visitor."
That was the last time she recognized me.The rest of her kids slipped off her mind in the course of that year.Her kids, visitors to her.
Consolation though? She remembers father. That's her reset button whenever panic shoves through the cobwebs of her cognitive. #Dementia140
[Side bar] Once in a while, I scribble about it.… #Dementia140
Spending the weekend visiting with Mama. Tea and cake to feature rather prominently. #Dementia140
Cake and tea are just about food she recognizes and can feed herself. Other foods, Mama be, "na hablo y'all ".
You serve her any other food, Mama stares at it like "nu food, who dis? " and has no idea what to do with it. So we have to feed her.
But I had a really swamped week and completely forgot to order a lil nice cake for her on time. Bleh, what to do now 😥
I dreamt Mama yelled at me for running late on running an errand she had tasked me with. I woke up & zubaad for 5 minutes like #Dementia140
4 years ago today, Mama - a year into dementia - had to go identify the body of my dead sister at Machakos Level 5 Hospital. #Dementia140
Le sis got taken ill around 10PM and another sis took her to hospital. Migraine. Mama and le dad go to visit the following day bright early.
Folks get to the hospital.Her bed is empty.A nurse says try the maternity ward (sis was 32wks pregnant). They go to maternity. No Sue there.
They try some other wards. At this point, father is livid. How can no one trace an in patient? Try the mortuary. Sis is not there either.
How do you find an in patient who never checked out? See, when she got admitted the previous night, doc told the sis admitting Sue, that
now that they have given her an injection (diclofenac her papers show), she is now rested, and they can go home and come in the morning.
So my folks get there and there is no one at her bed. Actually, her bed appears to be wheeled away. Le dad decides to search floor by floor.
Le father, Mama and the nurse on duty go floor by floor. Sue is nowhere to be found. 2 hours later, matching up and down, they found Sue.
Sue is wheeled in some non-descript room, sheet overhead .That's where Mama and le father find her. Cold. Gone. Alone. #Dementia140
When Mama and dad got home that evening, she was not the same. The little memory of us she had left, sort of left after identifying my sis.
(So after the doc injected my sis that night she was admitted, she never woke up again. )
Mama has never gotten back to us ever since. Even at the funeral, you'd think she was attending an acquaintance's funeral.
I turn 32 in a week's time. The last time Mama recognized me I was 27. She hasn't been getting better. Also, it still sucks. #Dementia140
With every morning, I always think that may be this is the day Mama wakes up with her faculties back like they never left. By noon, I fear
and ask myself, how will her mind reconcile the past couple of years? How do you go to bed in 2012 only to wake up and it's 2016/17?
She is not in any medication right now.Father can't deal with doctors handling Mama without her consent though she doesn't know what it is.
(Her speech is 99% gone so she can't even say if she is in pain, or she has had enough food. We tell by the cues in her eyes. ) #Dementia140
She eats okay though we have to feed her, dress her, bathe her (only allows dad to do that, the rest of you, who are you even?). <lol>
Mama would forget her way home, so we began locking our gate coz we lost her once. Thankfully though, we live in about an acre peace of land
so she has room to roam. Mama has a habit of dozing off when she sits too still for long so we have had to ensure compound is safe for her.
Mama is now like a literal child.We time her meals, watch what she eats, note her sleeping, take her to bed (she hats this one) #Dementia140
She has developed a sweet tooth though (yep, we test her on diabetes and HBP every few months) so I am always on cake duty each month.
I want to try that Java's enslaving apple cinnamon cake this time round coz it's bila icing.She'll hate me because she likes icing tew much.
Mama has better days mostly. The bad days are the worst and are mainly when she is in pain and her mind can't let her speak. #Dementia140
4 years ago today, right about now, we went with Mama to collect my sis body at the morgue. Mama could still speak then. #Dementia140
Memory pockets began growing noticeably then. Even months later, she'd grab my hand and ask, "Haiya, do you know Sue died?" #Dementia140
I would tell her, yes Mama. Remember I carried her picture during the procession and led you to your sit afterwards. "Oh. I am so angry."
(We don't like funeral pictures in our fam though some relative paps took some. We forbade them from sharing the pics though. ) #Dementia140
Spent the weekend with Mama. She caused us a little scare. #Dementia140
Tried to feed her some snack around 4PM on Saturday. She was interested but unwilling to open her mouth. #Dementia140
We almost let her be until her teeth cracked something. We'd sat with her all day, kept a close watch. She has something in her mouth and
we can't tell how it got there.We are having mini heart attacks all round but she stares daggers at us completely refusing to open her mouth
Father manages to force open her mouth. We found a massive button. We hold our collective breaths as we internally update our "Mama list'.
( Mama list is basically a list of things that we have to keep from her reach.I dunno how we will manage her clothes that have buttons.Bah)
But the real heart-breaker of the day is the Apple Cinnamon cake I got from @javahouseafrica RE:
I ordered this Apple Cinnamon cake at @javahouseafrica. I even went in person at Java TRM to order. In person. Me, in person.
The apple cinnamon cake is CREAMLESS. With Mama's dementia, we have to watch her sugar too. What did I get at Java on collection day?
My request? Apple cinnamon cake. A supervisor asked me, anything else? I said may be some dark chocolate shavings at the top.
We thought ok, may be we can forgive them. Only to cut through & find more cream inside.Had to buy Mama Mill Bakers instead. #Dementia140
(I was on transit and needed to deliver that cake. I am still seething at how @javahouseafrica , you would botch an order, made in person.)
(@javahouseafrica in case you're wondering what happened to the cake,we cut off all the cream outside&inside (like half the cake) & threw it
Back to regular programming >>>> #Dementia140.
Oh, and this thread turned one year last week. I missed the threadnivessary (is that a thing? It should be a thing) . #Dementia140
A famo Christmas thing coming up.We'll be singing lotsa Christmas hymns-hymns are just about all Mama recognizes second to dad. #Dementia140
Keeping it strictly low-key just siblings + immediate grandkids.Mama doesn't do well with large numbers of people/lots of noise.#Dementia140
*siblings + spouses + grandkids. Which is gonna be real hard considering we are 10 siblings and twice number of grandkids. #Dementia140
So to help her be settled on the D-day, 2 wks earlier, we start telling her, hey, remember the kids? they will be coming in a few days."
It won't really stick in the fast few days to 2 weeks. But we keep reminding her. On a good day, she will smile & nod in acknowledgement.
When the day comes,we unconsciously show up in ones or twos.Easier for her to deal with than en mass.Since we aren't huggers,we shake hands
You know she recognizes you when her handshake lingers. She once held on my hand for 2 hours and wouldn't let go. My bladder still smarts.
(dad had to bail me out of the handshake jail. Only to have his hand get "arrested.) #Dementia140
Mama's handshake jail,we've this in house joke.Before you shake hands,visit the bathroom first, wash up, get a refreshment then shake hands.
Did I mention that she doesn't go anywhere these days? She did not come to a sis wedding last year but we did a handover with her at home.
We keep the gate closed during the day since she wondered off once and could not remember her way home. * still chilling *. #Dementia140
Mama, 16 April 1655. They got married a year later, 6 April 1966. In 50yrs, 11 kids, 22 grandkids later, and still woke. #Dementia140
.Got a tentative travel early next year for 2wks.A sibling asked me if I'd feel guilty should Mama passed away in my absence. #Dementia140
I dunno how to exactly feel about that. #Dementia140
We haven't sung carols hymns since Mama woke up one day and couldn't remember any of her kids. #Dementia140
The last Christmas she could speak somehow coherently was 2013. #Dementia140
And she loved singing, too much she would sing kiuk hymns. Fluently. - we are Kao. #Dementia140
Past few Christmas have been getting damper, and the silent more tangible. Visitor/family have become lesser too. #Dementia140
Merry Christmas, Mama. May there be song, dance and peace wherever you're mind wanders today. #Dementia140
Mama, you made it to another year. May the soundtracks to your wandering mind bring you peace. #Dementia140
Man, I've been exhaling in sips these past 4 weeks the doc strikes has been going on, that Mama won't need hospital. #Dementia140
Mama is at that point where she resolutely keeps food in the mouth - she won't swallow, she won't spit it out. #Dementia140
Earlier on, we would let her be. She would swallow at her own time or go outside and spit.
Now, she forgets she has something in her mouth and she chokes when she takes a deep breath. So we have to forcefully remove food/water
whenever she refuses to swallow or spit. And she 👏 hates 👏 it 👏. Coz she can't fight back, sometimes she will bite yo damn fingers. 😂😭.
Oh, and she hates water. To get her to drink water (we hold it to her mouth), we have to put things in it - sweetening kind of things.
It's been over a year since her last check up. She hasn't fallen sick (thank God) but in her condition we think periodic checkups are wise.
Father doesn't wanna hear that talk of sijui checkups. "She's fine. Si she's eating? Si she's sleeping? Ako sawa sawa." #Dementia140
When we insist, he gets defensive and agitated and category reminds us, "this is my wife. If you have a problem, you are free to leave".
The past few times she's fallen sick,visibly sick,that's when hospital happens.By then, it is dire, possibly preventable if caught early.
Today is a good day though.She is all chill and proper - she even finished her lunch 💃. She's on nap #55 though after her walk. #Dementia140
Planning on changing Mama's diet. First order of business should she come back to us? Kill us for cutting down her chapos. #Dementia140
1 Feb 2013. #Dementia140
Starting to change Mama's diet with cooking oil. Coconut oil comes highly recommended from most convos I've had so far. #Dementia140
Next,how to get her on omega 3 intake (currently 0 lacking) that is not pills/meds or actual fish - her clouded cognition still hates fish.
Officially started working on Mama's diet last week with coconut oil Ito replace kawa cooking oils). #Dementia140
We'll all be eating what she eats - most of it - so we don't have to make two meals each meal time. Also, psych. #Dementia140
For context, Mama has been at Stage 7 for over a year now (diagnosed with early dementia in 2012 at 68/69.) ||…
Today marks le folks' 51st wedding anniversary. Though Mama's dementia keeps robbing her dry, she, she is still 'here'. #Dementia140
Mama turns 74 today, spending it in hospital being tube-fed because muscle atrophy, multiple DVT and other short stories.

Mama is finally discharged ( after father threw tantrums all week demanding she be discharged despite doc's advising clots still critical.
Palliative patients, lotsa lotsa grace and patience. Gotta cultivate some if it does not come easy for you esp if a fam member. #Dementia140
Mama can now (finally, FINALLY) stay sitted upright by herself. \o/ #Dementia140
Bah, Mama got hospitalized again yesternight. Respiratory problems. #Dementia140
Feeding pipe out ☑ blood pressure stabilising ☑. Now, to get her white blood cells level normalised. #Dementia140
Mama discharged 💃. Now to continue waiting out the extensive DVT to clear. #Dementia140
(Also, thank you NHIF. I almost have hope for government systems ) #Dementia140
First thought in mind whenever I awaken to a missed call from le father? That this is the darkness in Mama's mind finally won. #Dementia140
I FIRST scan through my call logs/missed calls/texts/fam whatsapp group, calm the covfefe down for 1hr then return his call. #Dementia140
(I returned his call - 3 missed calls later - and the first thing he says to me is he thought I was resident at City mourtuary 🙄. SMH. )
Mama's dementia clocking 7 yrs with 2017 being her hardest with two major hospitalizations #WorldMentalHealthDay #Dementia140
Underside, the 2 hospitalizations she had in '17, resulted to her brain power deteriorating the most. #Dementia140
Her speech is 100% gone now. We have to rely on her facial expressions to know if she's in pain. Hits and misses mostly.
The only 2 things she can do is swallow or spit. We have to do everything else for her - even swatting off a fly.
One of the painful things to see is how her friends ditched her. We can go almost 6mo without any of her friends visit her.
Praying 2018 be more kind to her. And le father mostly. #Dementia140
2 months later, no new clots. Yaaaaaaaaas! Mama's memory not getting better but no clots. #Dementia140
And this year was shit, my God, didn't she give us a scare. We thought she wouldn't make it at hospital 😭.
The look of betrayal on her face when she gained consciousness, then found a tube down her throat and her hands bound. Gai!
She rarely has those pockets of recognition now. And whenever they turn up, you can see panic in her eyes.
Relatedly, it's like the more Mama's cognition succumbs, the more the fam falls apart. #Dementia140
At times I think she can tell but again she can't recognize us. Yep, stings on both counts though.
And Mama made it to 2018. Aki God! 🙆 #Dementia140
Meh, we buried another of her friends, a neighbor, over the weekend. And one of her remaining sister-in-laws, week before last. #Dementia140
It is heartbreaking watching a palliative patient waste away, a niggling of helplessness when you can't make them better. #Dementia140
You want to make it better. But you can't, you have no tricks left. So you do what the docs don't say loud: wait. #Dementia140
"Wait". Such a fickle word but carries all the damn weight of what-ifs with it. Worse when you know the "wait" is more like "when".
[Mama’s] hands clapped in church on Sunday morning
[Mama’s] hands played the tambourine so well
[Mama’s] hands used to issue out a warning
She’d say, “[Nganyá] don’t you run so fast
Might fall on a piece of glass
Might be snakes there in that grass”
[Mama’s] hands.

Mama's been having better coupla days this past week. The swelling of the feet is back though || #Dementia140…😩
Times move in one direction; memory, in another ~ Dr. Spencer Reid (Criminal Minds, S012E12)

There are times like today I'd wish Mama all the years on earth; other times, like today, I am uncertain if it's fair to. #Dementia140
Yaaas, the swelling on her ankles is going down. #Dementia140
Every slight ill-health sets Mama back, and by the time she gets well, she's deteriorated major. Aki this year I don't want stories of DVT again abeg.
Almost April. Mama has not required hospital so far this year. #Dementia140
Mama has been having a streak of stayed alert all day yesterday, amid all the our clamoring. #Win
But damn, don't time fly so fast. Just the other day Mama was diagnosed with dementia, now she is full tilt manifesting stage 7 of 👇…
This July's winter has not been kind. Thankfully though, hospital visits have not been required. 🙏
Dear Mama

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