New Member - First Post

@baj Has your husband had a sleep study performed? He may have sleep apnea which could be causing his being so tired. My husband was tested after his dementia diagnosis. He now sleeps nightly with his CPAP machine and head mask on and it has made a tremendous difference. He sleeps soundly through the night and wakes up refreshed.

My father was diagnosed with vascular dementia. He went fast. I recall he fell a couple of times. It wasn't because he was dizzy or tripped, he said that his legs just wouldn't support him - they just gave out on him. It was extremely intermittent. I wish I would have known that was a symptom of dementia (among other things) but I didn't realize it.

My father had a few small strokes, he did not realize it at the time and I didn't realize it until I went to the doctor's visit with him. His brain went fairly quickly after that but at least he had the wherewithal to give me his car keys and try to at least maintain his muscle strength.

It is difficult. There is nothing you can really do about it except make them comfortable. My father was basically a gentle soul but he would get scared because he had the hallucinations at times. It doesn't really get any easier, at least n my experience and with people with whom I have spoken about this topic.

Welcome, Linda. I am glad you found "this community," as the volunteer mentor Scott calls us.

I am also fairly new here. Since your husband has vascular dementia, his prognosis is guarded at best. So, I want to share this post that I wrote on another site for "Caregivers Support," for caregivers in general (not just for dementia):

"My heart goes out to all of you who live with dementia or care for someone who has it or some other form of mental impairment.

My husband George has Alzheimer's, Lewy Body, vascular dementia and Parkinson's. For the past year, almost every day, he wakes up depressed and says that it'll be his last day.

Until last week, I was unable to get George to talk about his end-of-life wish. He rarely leaves the house, but I convinced him to go on a "date"--to make funeral arrangements. I told him that our culture attaches a stigma to death; but we can reject that notion and choose to view death as a part of life's journey. I told him that we have been fortunate to travel that path together, and that the next phase will be a continuation of that adventure. We don't know who will get there first--but the other one of us will not be far behind.

Most days, I feel as though I am living upside down; and due to sleep deprivation, I don't know whether I am coming or going. Still, I try to find a moment of joy (experience wonderment, awe and gratitude) in each day knowing that our days are not getting any longer.

For those of you whose days on earth are coming towards the end, I hope these poems will comfort you.

“When Death Comes” from New and Selected Poems: Volume One 1992
Mary Oliver

When death comes
like the hungry bear in autumn;
when death comes and takes all the bright coins from his purse

to buy me, and snaps the purse shut;
when death comes
like the measle-pox;

when death comes
like an iceberg between the shoulder blades,

I want to step through the door full of curiosity, wondering:
what is it going to be like, that cottage of darkness?

And therefore I look upon everything
as a brotherhood and a sisterhood,
and I look upon time as no more than an idea,
and I consider eternity as another possibility,

and I think of each life as a flower, as common
as a field daisy, and as singular,

and each name a comfortable music in the mouth,
tending, as all music does, toward silence,

and each body a lion of courage, and something
precious to the earth.

When it’s over, I want to say: all my life
I was a bride married to amazement.
I was the bridegroom, taking the world into my arms.

When it’s over, I don't want to wonder
if I have made of my life something particular, and real.
I don’t want to find myself sighing and frightened,
or full of argument.

I don’t want to end up simply having visited this world.

In Blackwater Woods (excerpt) -- Mary Oliver

To live in this world

you must be able

to do three things:

to love what is mortal;

to hold it

against your bones knowing

your own life depends on it;

and, when the time comes to let it go,

to let it go."

Best to you and your husband.

George's Wife

@baj Has your husband had a sleep study performed? He may have sleep apnea which could be causing his being so tired. My husband was tested after his dementia diagnosis. He now sleeps nightly with his CPAP machine and head mask on and it has made a tremendous difference. He sleeps soundly through the night and wakes up refreshed.

Welcome, Linda. I am glad you found "this community," as the volunteer mentor Scott calls us.

I am also fairly new here. Since your husband has vascular dementia, his prognosis is guarded at best. So, I want to share this post that I wrote on another site for "Caregivers Support," for caregivers in general (not just for dementia):

"My heart goes out to all of you who live with dementia or care for someone who has it or some other form of mental impairment.

My husband George has Alzheimer's, Lewy Body, vascular dementia and Parkinson's. For the past year, almost every day, he wakes up depressed and says that it'll be his last day.

Until last week, I was unable to get George to talk about his end-of-life wish. He rarely leaves the house, but I convinced him to go on a "date"--to make funeral arrangements. I told him that our culture attaches a stigma to death; but we can reject that notion and choose to view death as a part of life's journey. I told him that we have been fortunate to travel that path together, and that the next phase will be a continuation of that adventure. We don't know who will get there first--but the other one of us will not be far behind.

Most days, I feel as though I am living upside down; and due to sleep deprivation, I don't know whether I am coming or going. Still, I try to find a moment of joy (experience wonderment, awe and gratitude) in each day knowing that our days are not getting any longer.

For those of you whose days on earth are coming towards the end, I hope these poems will comfort you.

“When Death Comes” from New and Selected Poems: Volume One 1992
Mary Oliver

When death comes
like the hungry bear in autumn;
when death comes and takes all the bright coins from his purse

to buy me, and snaps the purse shut;
when death comes
like the measle-pox;

when death comes
like an iceberg between the shoulder blades,

I want to step through the door full of curiosity, wondering:
what is it going to be like, that cottage of darkness?

And therefore I look upon everything
as a brotherhood and a sisterhood,
and I look upon time as no more than an idea,
and I consider eternity as another possibility,

and I think of each life as a flower, as common
as a field daisy, and as singular,

and each name a comfortable music in the mouth,
tending, as all music does, toward silence,

and each body a lion of courage, and something
precious to the earth.

When it’s over, I want to say: all my life
I was a bride married to amazement.
I was the bridegroom, taking the world into my arms.

When it’s over, I don't want to wonder
if I have made of my life something particular, and real.
I don’t want to find myself sighing and frightened,
or full of argument.

I don’t want to end up simply having visited this world.

In Blackwater Woods (excerpt) -- Mary Oliver

To live in this world

you must be able

to do three things:

to love what is mortal;

to hold it

against your bones knowing

your own life depends on it;

and, when the time comes to let it go,

to let it go."

Best to you and your husband.

George's Wife

Welcome, Linda. I am glad you found "this community," as the volunteer mentor Scott calls us.

I am also fairly new here. Since your husband has vascular dementia, his prognosis is guarded at best. So, I want to share this post that I wrote on another site for "Caregivers Support," for caregivers in general (not just for dementia):

"My heart goes out to all of you who live with dementia or care for someone who has it or some other form of mental impairment.

My husband George has Alzheimer's, Lewy Body, vascular dementia and Parkinson's. For the past year, almost every day, he wakes up depressed and says that it'll be his last day.

Until last week, I was unable to get George to talk about his end-of-life wish. He rarely leaves the house, but I convinced him to go on a "date"--to make funeral arrangements. I told him that our culture attaches a stigma to death; but we can reject that notion and choose to view death as a part of life's journey. I told him that we have been fortunate to travel that path together, and that the next phase will be a continuation of that adventure. We don't know who will get there first--but the other one of us will not be far behind.

Most days, I feel as though I am living upside down; and due to sleep deprivation, I don't know whether I am coming or going. Still, I try to find a moment of joy (experience wonderment, awe and gratitude) in each day knowing that our days are not getting any longer.

For those of you whose days on earth are coming towards the end, I hope these poems will comfort you.

“When Death Comes” from New and Selected Poems: Volume One 1992
Mary Oliver

When death comes
like the hungry bear in autumn;
when death comes and takes all the bright coins from his purse

to buy me, and snaps the purse shut;
when death comes
like the measle-pox;

when death comes
like an iceberg between the shoulder blades,

I want to step through the door full of curiosity, wondering:
what is it going to be like, that cottage of darkness?

And therefore I look upon everything
as a brotherhood and a sisterhood,
and I look upon time as no more than an idea,
and I consider eternity as another possibility,

and I think of each life as a flower, as common
as a field daisy, and as singular,

and each name a comfortable music in the mouth,
tending, as all music does, toward silence,

and each body a lion of courage, and something
precious to the earth.

When it’s over, I want to say: all my life
I was a bride married to amazement.
I was the bridegroom, taking the world into my arms.

When it’s over, I don't want to wonder
if I have made of my life something particular, and real.
I don’t want to find myself sighing and frightened,
or full of argument.

I don’t want to end up simply having visited this world.

In Blackwater Woods (excerpt) -- Mary Oliver

To live in this world

you must be able

to do three things:

to love what is mortal;

to hold it

against your bones knowing

your own life depends on it;

and, when the time comes to let it go,

to let it go."

Best to you and your husband.

George's Wife