Monthly Archives: November 2015

I just can’t stand it

I want to rip out my brain or kill myself or …well what do you do when he strokes your face and says, Babe, what has come between us? He has no idea what is coming down. To him, maybe?, it is just him and me and us, which has defined both our lives for 3 decades.

I just want to die. It hurts too much. He suffers, but forgets, and babbles the same words – when they are words – over and over and over and over….  (Oh you, dear reader, find that boring, hey, or overdone – ha!) but I just can’t stand it. It is appalling.

Nothing will ever make this good – it is a hole in my soul which will never heal. Yes one day if I survive this pain, I may walk around again among the living and laugh and smile but I will never again be whole. There will always be a tear inside my soul, my heart, my gut, I will always be walking wounded. And to me right now getting to that state would be a victory, a healing.

I suspect when I think about it that many of us are walking wounded – how can it be otherwise with the terrors of this world. You die, or you survive, walk, or crawl away, wounded. And most of us I am guessing cover it up, let the wounds scab over and scar,  and carry on.

Why go through it I don’t actually know.

He wants to know, in this brief painful moment while he is not moaning about wanting to go home, sweet mother, to that imaginary home which vanished when his father died 40 years ago or more, he wants to know why I am going away from him. And I have no answer,  only pain. I cannot cry because that will only upset him.

The caregivers tell me he answered the phone into the door handle in the office while I was away and later, held his glass up to the kitchen cupboard door to get water.

And I have no answer for what is tearing us apart.



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Another Respite Morning

As we lay together in bed this morning, our bodies giving each other comfort by their touch, their smell, the old safety of a good enclosing hug — we have always been each others’ haven and the memory is in the touch — (I weep as I write, it is so sweet and so beloved) as we lay abed this morning, my heart – or my courage – softened, and I thought as I so often do, how wonderful to have him next me, my best friend and biggest fan, the only person in the world now who I know will love me no matter what.

I think, oh maybe I can keep him home, get more nurses, maybe I could do that until the end, with enough help.

And then he speaks: of strange things coming down the roof tops,  and of some boy who just ran through the room. He says, I think it could maybe be my mother and father are dead.  He the atheist says, I don’t know what I did to be punished like this… and I clinch my teeth and say “You are a good man. God is not angry at you.”

He asks,  Your brain is OK isn’t it, babe? It doesn’t hurt?

And then a bunch of repetitious gobbledygook, of the kind we have about 200 times a day (not exaggerating) — Where are we, When can we go home, Where is Delores? (That one is super freaky because the existential answer is, Who knows?) What can we do? Where is the car? — and I know, with a cold chill in my heart which I don’t know if I can survive, it makes no sense to sacrifice myself too.

I pack his bag for another week of Respite at the Lodge, that blessed place where I trust the staff to look after him.

He is not happy about going, and breaks my heart again and again as he says how much he loves me and wants to be with me. He adamently does not remember ever being there before (3 weeks ago) and pities me for my craziness. I take ownership of not knowing anything.

Later this day, I brief the nurses on how he has changed since the last Respite: more fear and anxiety (I’m afraid, he said, staring at his porridge, I can’t eat this… and he didn’t) – more little children running through the room, and sometimes strange men, more weird poisons coming from the clouds, more need for explanations on how to use the toilet (makes sense really – he grew up in the country with no plumbing).

The nurse agrees she has noticed he is more anxious, aggravated by a howler or two on the ward, and says they will make sure he gets some extra TLC. I say how much I am hoping he will land softly in their care when his turn comes up on The List, and she says yes we hope so, but there is no control over placements. “He is such a sweet man,” she says, leaving me relieved, but with a heart cracking again, after so many fractures.


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Diary of a Respite

Day 1

Dropped a somewhat bewildered and suspicious husband off at the Lodge with the help of the gracious staff who hi-5ed Don as they met us, to his flattered surprise.

No tears this time as I scurried off to the car, because the last week has been rough, even if this morning he was relatively calm and pleasant. Still scared by a truck next door.

But surprisingly what is creeping in tonight is guilt – guilt because I really feel ready for Don to go into care permanently, but that feels unreal and selfish.

I have enjoyed this oh-so-rare time alone so much, it seems like a self-indolent luxury.

Slept well but not soundly. Woke up thinking about how good and skilled the staff are. They all seem to be able to “read sign” and distract and divert with ease.

Day 2

A tad of work, couple of nice phone visits with friends, and a deep sleep until the alarm woke me. Took awhile to stop listening for the sound of Don breathing next to me. Debbie went to see him and he was calm and told her it was a good place. He asked her to stay the night with him.

Day 3

Good day of work and comforting lunch with my caregivers’ group, all of us poor souls mired in the endless chaos of being dementia caregivers. I spoke of my suspicion that Don was better looked after in the Lodge than here at home.

Then a nice slice of work, a quick snack for supper and some TV.

Day 4

Already? My time is almost up and I am not prepared to stick my head back into that torture chamber. Ten years is enough.

Day 6

The last couple of days have been life as I like it – a lovely mix of socializing, some work, a meeting and a good hunk of alone time. But I woke this am after 10 hours sleep realizing how tired I am, all the way to my soul. And this unexpected so-called journey continues. Could be worse – imagine dealing with this in the middle of a war, or being homeless……

Day 8

And it”s over. Don will be home for another 3 weeks until the next Respite. I was very lucky and my case manager scooped up two cancelations for us. This means that after those many years of almost constant 24/7, I will have had one week of Respite every month this fall. Unfortunately,  that can’t continue.

The nurse said Don fit in well and had made some friends. She said he shadowed them too, but, she said, “We’ré only on for 8 hours.” There does seem to be some issue with eating because she talked about coaxing a sandwich into him as he walked around.


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