Editor’s Pick
JULY 28, 2009 2:07AM

Living With Dementia. Miles Before I Sleep.

Rate: 26 Flag

I can see his bones poking through the back of his shirt as I watch him through the window. He knows I'll work a bit and come back. But sometimes, I pause to watch him as he sits there, enjoying the sun on his skin

It all started in March. Dad's in the hospital, come, they called.  It was dicey, the first days. We almost lost him. Pneumonia, starvation, pulmonary embolism, an unidentified mass in his stomach, loss of hearing, flashbacks, paranoia, and the beginnings of dementia.  And he's gone blind - that was the worst blow for him. 

We never knew. He still sounded like his old self on the phone. Always has. Still does. So he didn't tell. Didn't want to worry anyone.  That alone makes me weep.     

Somber faced medical staff. He can't live alone anymore. He'll need to go into an institutionalized care facility or live with a family member. One by one, the heads went down. Silently, the social worker picked up a list of care facilities. Hearts and air grew heavy. 

I'll move back, I said, shocking eveyone including myself.  He can live with me.  I'd thought about it, but didn't decide until that moment.

But, I'd seen him get confused and scared when new voices walked into the hospital room. "Who's there? Who are you?" he'd ask, curling his emaciated body into a ball on the bed.  I couldn't leave him that way for the rest of his days. Couldn't. He is my father.

So I packed up my home. Hugged my daughter. Sobbed not just a little as I left her behind. With thousands of miles of road behind me, I find myself in the middle of nowhere on the Canadian prairies, where the sidewalks get rolled up at six PM. Land of my birth.

He's lost so much weight. Too much. A third of his body weight?  Legs that look like the starving children Sally Struthers introduces us to. Strong hands that once flung bales of hay with no effort are little but skin stretched tautly across bone.

I have to keep security locks on the doors so he can't wander at night even though sometimes he yells at me for it. I work with one ear listening, grateful to have work that travels along with my computer.

When he's not living in a world of flashbacks and the enemy, he likes hugs and oatmeal for breakfast. Loves the sun on his skin and being able to open his own window when he wants to.  He loves warm baths, hot cocoa  and hugs before bed.

It is not easy to live with, the growing bouts of dementia. Yet, they are sprinkled with glorious bursts of lucidity and nostalgia and laughter.  Remember when, Dad? I reckon the only thing harder than caring for him would be not caring for him.

Most days, I struggle to identify the emotions I feel, much less find words to describe them.

I have realized, though, that it's possible to feel joy and heartbreak at the same moment. Shared laughter while my heart feels like it's shattering.  But, I'll talk about the garden another time...  

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You could be speaking of my mom. I feel every word you write. I wish you more good days than bad.
Thank you for catching us up with this powerful and gorgeously written story about your dad. You are a trooper.
It sounds like you made the right choice. This is sad and beautiful all at the same time. Wishing you strength - and time to write whenever you need to.
Boomer, it's great to hear your voice on OS again, but it's also sad that it pertains to such a difficult subject. The fact that you instinctively chose to be the caregiver during this difficult time speaks volumes to your character and love. Best wishes for strength and patience and love during this hard, emotionally charged time.
Echoing the prior sentiments, wishing you more good days than bad. It sounds like a tough road you're walking, but at least there is sunshine at times.

Sending you good thoughts and prayers....
My mother takes care of my grandmother. This was beautifully written, and read/rated with great appreciation for the strength, compassion, and patience of both of you.
I, too, have given up some of my life to be a caregiver. Three of my other siblings fled in all directions after robbing my mother of her house and dignity. They will never be able to be at peace when she dies.

Your actions take courage, conviction, and grace. Congrats on being a special human. Our society needs more like you everyday. Hell, the world needs more like you. Do you have any clones?
There's a special kind of purgatory--neither heaven nor hell--about caring for an aging parent. You want to cry or kill them, depending on the kind of day they have.

But what always sobered me--both my parents are gone--was knowing that it was my turn now to care for them.

Even more sobering is that now I realize: it'll be MY turn in short order. That's why I really take good care of my health, even though I know eventually I'll have to enter a nursing home myself, and I'll be the only one to decide. But that's the price of choosing to live alone...
I’d hoped your silent blog would come to life again. And now I understand your absence. What a beautiful post on such an emotional journey. Tough, heartbreaking decisions – your words are full of the complexity of our modern lives, ‘One by one, the heads went down…Hearts and air grew heavy.

Welcome back. And here’s to more joy than heartbreak.
I am living this with my mother and seeing my future through your painful present. You are doing God's work.
Beautifully written.
"I reckon the only thing harder than caring for him would be not caring for him."

There is all the wisdom in the world right there in that statement.

My Dad's last words to me, a few months before he died were, "You are not my daughter. I don't know you." Ouch, ouch, ouch. Dementia is cruel, cruel, cruel.
You are a good decent human being, a magnificent daughter, and a lovely writer. Thank you for sharing such a personal story.
I thank you for this post.
Lunchlady2 - thank you so much. Sorry to hear your Mom is in the same boat. It's hard. I know. Boy, do I know.

Emma - Some days I troop better than other dayss. I guess we all do, through all life's curveballs.

Lisa - that's it exactly. Sad and beautiful all at the same time. I feel that way sooo often.

Procopius - Thank you for such kind words, and for welcoming me back. :)

Bill - Funny, you know... that's what I wish for daily. More good times than bad. So far, they're running neck and neck, but I can live with that.

Elsma03 - You sound like you're familiar with the road I'm on. I'm learning as I go, but as I watch Dad, I learn so many things that I want to take care of before I'm that age. Most of all, I realize how important it is to take care of my eyes. Go for the cataract tests. Go for the glaucoma tests. Don't put them off. Ever. Losing his vision was the worst blow by far.

David - thank you for the welcome back. I had to smile... here's to more joy than heartbreak. I'll toast you on that. Good words for life in general, too, not just caring for an aging parent!

Cartouche - Thank you. I feel for you and your Mom. It's not easy.

Marcelleqb - thank you. :)

Wakingupslowly - I know that ouch feeling very well. Dad has already told me that once. Mostly, he's pretty good, but there is the occasional spell that's really, really rough.

Nofrillsmonkey - you're very welcome, and thanks for taking the time to read it, and for the kind compliments. It's a hard road, but I think that it would have been harder, for me, not to care for him. I couldn't have lived with that forever, you know?

HellsBells - You're very welcome, and I thank you for reading it. I know that when it gets rough here, I'll be coming back to find some comfort in all these kind responses.
You paint a vivid and very touching picture with your beautiful, spare prose. I could just picture your father there soaking up sunshine on his tired old bones and it gave me a lump in my throat because I've seen my mom and dad do the same thing. They remind me of old dogs. My parents still have each other at least and so far have managed to muddle along. But, like you, I've made my home far away from them and don't know what will happen when things reach the crisis point. I try not to think about it. But I can't imagine them all alone, in the care of strangers. I hope you'll keep writing about this. I expect it will help you, and it will certainly benefit your very grateful readers.
"The only thing harder than caring for him would be not caring for him." Beautifully put.
I understand dementia. Totally.
Sometimes I feel like my young (under 42) spouse has early-onset Alzheimer's, though I know that it isn't. It's just the neuro disease coupled with all the meds that makes it feel like, nay, present like dementia.

It is hard and scary.

You are a good and loving daughter and I hope you can feel that every day down to your toes.

And, you are a gifted writer.
Laurel, not Lauren... I read your comment many times. That's the part that wouldn't rest in my brain; strangers caring for him at the end of his days. A parent shouldn't spend their last days alone, no matter how many last days there are. There are so many moments balled up inside me. Writing helps, and thank you for reading.

latethink... thank you. At that moment of decision, I didn't ask myself if I could do it. I asked myself if I could live with knowing I didn't. I couldn't. If that made any sense.

Brenda... I loved the letter to your Dad.

And yet... Down to my toes. Funny - my toes are a source of amusement to Dad because unless it's unbearably cold, I'm always barefooted. Every time we sit down together, he looks down to see if he can see my toes. Then he laughs and says "you're barefoot again" It amuses him. On warm days, he's started going out on the deck with bare feet. That's new to him and makes him laugh. And, thank you for the compliment. :)
Thank you for posting. Some days, probably many days, you'll need a touch of support. Come here. I wish you peace of heart and stability of mind as you care for your dad.
scupper... I vote for many days. I'd say all of them, but that would be overly dramatic and untrue except, maybe, when I'm overly tired. But yes, many of them... mostly, I wish I could make other people understand what mental illness is - what dementia is, so they would stop looking for "normal" behaviour. But, of course, I cannot... *sigh*
After reading your poem, I had to read this. Because you went to stay with him, you got all of the best he had at the end. You gave him the greatest gift, allowing him to stay home and die consistent with the way he had lived. My mother was at my house for 6 weeks in her last months and then I couldn't care for her anymore because she wasn't mobile. She wanted to die in my house, surrounded by her grandchildren and I wasn't able to make that happen. You are so lucky that you were.