Author Archives: delores663

Thrre’s been a lot of weird characters rummaging through our house lately, some of them pretty hard to pin down.

The dog lurking in the corner where the white stool sits is easy pickings. The one that runs across the counter or over the table is a little harder to explain, so best not bother.

The children playing just on the edges of vision, or laughing around the corner, are benign visitations.

But there has been this man…a few weeks ago the object of fearful whispering, much hushing and creeping around corners. Lately the man has been accepted as a casual visitor while Don asks : “What did he say to you – I know you were talking” -brushing aside my protestations of ignorance.

And it turns out, no wonder. I heard a long and cheerful conversation in the bathroom, and was somewhat startled but pleased when Don reported happily that, “I asked that guy but he doesn’t want any breakfast. “

Oh-kay. But the next day the mystery broke when Don pulled me into the bathroom, cannily staying around the corner, but certain I could catch a look at “that fellow.” Identity confirmed when I coaxed him around the corner for a quick look in the mirror.

This however doesn’t make my love any easier about using the bathroom when “That fella’s there again.”

And then there’s Sam.

“Sam!!! There you are! – I have been looking everywhere for you. I am so happy you came back.” Wondering vaguely what new linguistic failing led to “Sam” but really having a 100 other things to juggle,  I gave myself into his joyous embrace, while wondering if dinner would coax him into eating.

Later  as he helped cook by stirring up some flour, he asked, “Did you say one of our daughters wasn’t coming?” And I realised suddenly that “Sam” rhymed with the name of his first wife and mother of his children, his love not forgotten in this haze of memories.

Over and over and over. “I want to go home. C’mon babe, let’s go.”

This had been going on for 3 hours – we had gone for a drive, perhaps foolishly, twice, because I hoped the foul weather and the motion would break the pattern.

I should have known better. “I want to go home,” He wailed over and over. He would look around our house and recognise it as ours for a moment and then say well, that’s fine, but I want to go home.

C’mon babe,  let’s go. Tugging at me, hugging me and caressing me, ready to crush me and my chair,  sometimes demanding to know what was wrong with me  – was i mad? Worthy of temporary pity? Did I really want to push him away from me? –

C’mon babe, let’s go. What do we need to take?  C’mon babe.

I wept and wept and finally smarten ed up and gave him enough medication.

After it took effect, and between dogs and strange men running through the room, he kissed my hand, and said, Thank you, babe.

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.

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.

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.

In the care home, i walked up to my gaunt and ephemeral-looking man, who asked, who are you? After he understood it was me, he trembled and hugged me intensely with tears in his eyes.

We came home to a busy day in my home office and he slept most of the day and all night.

The next day, things changed. He was increasingly anxious, not helped by my busyness – it being press day. With a sad resignation, I gave him extra meds, as he babbled about Hitting the road. I felt so rotten, because at the Lodge he again had no extra meds in a week.

I can’t seem to get the hang of it and it is clear to me that he is better looked after in the Lodge, no matter what he thinks, and no matter how hard I try.

The truth is, I have a life of my own which constantly distracts me from his needs. I do not even have the desire to do any more than I have for the last 10 years. Having cut back and back and back on my involvement in my career( not totally unhappily because I did used to work too hard although I enjoyed it) I just don’t feel I have any more to give.

The Seniors Health nurse, who phoned today, went out of his way to tell me I had done a great job of caregiving to date, and I sort of believe him.

The trouble with this disease is that no one ever wins. No miracles. No cures. No matter what you do, how hard you try, this disease always wins and steals your love further and further away … until death sets you both free.

Last few days have been mostly … well, irritating to the point of wit’s end. Endless questions about “When we are going home,” coupled with a lack of comprehension so deep that the use of fork and knife is becoming problematic, and he frequently asks “Who are you?”

Perhaps it is all aggravated by the fact that i know have a week’s respite schedule for each of the remaining months of the year. We will see if next week’s break at The Lodge is as positive for Don as the first one, because I am truly at the end of my rope.

Certainly here at home he is agitated, restless, very afraid (yesterday he refused to eat his hash browns – his favourite breakfast – because “I’m afraid of them”) and easily irritated. Not exactly a happy camper, and not easy to handle.  I have resorted to more medication and I am trying to stay aware that under the layer of reasonableness (is that a word?) induced by the meds, there is a deep and plummeting dementia.

Fortunately, after the medication took effect, I was able to find some photos of Ontario under snow, and that seems to have settled the prospect of driving 3500 miles for now. He, who used to read maps and the atlas for recreation,  has no concept any more of distance, space, geography.

He seems to have given up on money, having decided the business cards with his poem on them are as valuable (and who is to argue with that!) He can be diverted by the birthday cards I saved for him.This morning i sat there showing him the cards and thinking to myself, how much i would like to have cards addressed to him showing up in the mailbox — just one every three months or so, from all the people who say they care so much for him.

So Don has been home for 5 days, and – yep – the love fest is over. Despite the heart-wrenching news that a beautiful lady from my caregivers’ group lost her love this week (someone whose disease was similar to my Don’s) I feel trapped in a miasma of…. word salad.

Nothing Don utters is decipherable,  yet he wants answers.

He is roaming the house choosing things to pack when we “go home” tomorrow morning.

He runs off on the caregiver when I leave the house for just an hour. I am trapped and desperate,  and he is constantly afraid. He wakes me up regularly to ask plaintively,  “What are we going to do? What can we do?”

And I don’t know whether to weep or scream, neither of which will help. My head aches. My heart breaks, over and over. I cannot stand this pain. And he is so afraid, whenever I let up on the medication.

All this after he did so well in the Lodge. I envisioned a home coming more peaceful, a  calm descent.

I have resorted to extra medication, more than ever, (Note the Lodge used none! Oh, more fuel for guilt) not because I am afraid of his multiple delusions – there is no hint of violence – but because I simply cannot stand it.

I, like my love, have no words for this unending nightmare.

Like all humans, I cry out, “What did we do to deserve this?”

Tomorrow is the end of the seemingly-endless week of respite, and I got almost nothing done — the garage isn’t cleaned, the cupboards are not tidied, the garden isn’t ready for winter. What I did do, is have long wandering uninterrupted conversations with friends, and walks in the woods and at the beach. Got my hair cut, bought new jeans…..

I cried my eyes out that first night, and later I started sleeping 10 to 12 hours each night. I talked to myself incessantly.  I found it hard to remember that I didn’t have to schedule every little thing around care for Don. It was weird to just be able to do what I wanted.

And I found I didn’t have a clue what I wanted.

By the end of the week, I suspected that I was addicted to being a caregiver – I didn’t know what to do, I didn’t have him for an excuse, and I didn’t even know what or when I wanted to eat. I did enjoy my respite time enough that I think I can get over the addiction.

I had no idea what kind of price I was paying for the caregiving, and I am thankful for the case manager and health staff who insisted it was time for this next step.

I love being alone. I have known for years that price I pay for this love. The dementia and the shadowing just makes it much worse.

More, I realise I will not have an idea who I am or what I want to do with my few remaining years on this sweet sweet earth until my responsibility for Don – at least the daily responsibility – is relieved. This is what I need before I die – time to be with and for myself in the universe.

Is that ethical? Practical? Shrug. It sounds to me like Don was pretty content in the very competent care of others. There was a heart-breaking moment when he told one of the caregivers that his wife had died, and was very happy to be told that was not the case.

So what’s next? Two weeks at home together and by coincidence, there is another week of respite scheduled. The silence of the stars awaits.

Here is a video from a  person with early onset dementia about how to talk with someone with dementia – it seemed to me much like what my love would say.

A conversation about dementia