While talking with a caregiver the other day, I was touched by how she lamented the loss of order in her home as she cares for her husband who has Alzheimer's. She said she hasn't seen the top of her dining room table for eons. I told her that it was okay because I hadn't seen the top of my desk forever.
She smiled. She understood the humor I tried to inject into the conversation. She appreciated the momentary diversion and knew I wasn't making fun of her housekeeping skills or making light of something that obviously concerned her.
I quickly grasped the frustration of disorder in her life, a life in which she had been able to control much of her environment, keeping people and pets in line for decades until recently.
It wasn't just clutter; it was chaos.
"That isn't me," she said with a sigh.
Alzheimer's not steals only our loved ones' memories and lives, it works tirelessly to destroy other corners of our world … our skills, our simple, yet important, accomplishments that maintain our dignity and our homes and our lives.
Think of any caregiver you know, no matter what health challenges confront their loved ones. Offer to sit with or entertain their loved one. They may appreciate that simple break to clear off the dining room table at their own pace … to sort and shred to their heart's content … to regain their little corner of order in a chaotic world.
It's a priceless and well-deserved victory.
Monday, August 31, 2009
Tuesday, August 25, 2009
Alzheimer's: Breaking sacred promises
Sometimes it takes a while for everything to soak in, for you to fully comprehend a world that makes no sense, a world that consumes you within the sacred walls of your own home.
When it comes to Alzheimer's, no two individuals with this damn disease are alike. No two caregivers are alike. However, they all share one trait: they're human.
Many caregivers feel enormous guilt when they physically can't keep up with the demands of 24/7 care. But there comes a moment when our very human instinct to survive kicks in, when it commands more attention than guilt, even for only an instant.
And sometimes we must break sacred promises we made to the new stranger who now lives with us, someone who has resided in our home for many years, someone who has shared our kitchen table or even our bed. We remember the day they told us, "Don't you EVER send me there," and we vowed they'd NEVER have to go to adult day care or an assisted living facility or a nursing home.
We will cry while we make that decision and all the way home after we entrust someone else to care for our loved one, whether it's for eight or 24 hours. We will cry in the middle of the night and the day, over-analyzing everything we have done or think we should have done, allowing our exhausted imaginations to come up with new avenues of guilt.
Leave those regrets behind when you make those tough decisions. You will have done the best thing for your loved one and yourself when you ask for and/or accept help. You will have given them the attention and care they need when you are too exhausted to watch their every move. You will have given them more love and focus when you see them and care for them.
You will have saved yourself and become a much better caregiver in more ways than you can calculate because you can begin to rebuild your body and your mind and your spirit.
And isn't that the person your loved one with Alzheimer's will always hold dear in a place deep within them?
When it comes to Alzheimer's, no two individuals with this damn disease are alike. No two caregivers are alike. However, they all share one trait: they're human.
Many caregivers feel enormous guilt when they physically can't keep up with the demands of 24/7 care. But there comes a moment when our very human instinct to survive kicks in, when it commands more attention than guilt, even for only an instant.
And sometimes we must break sacred promises we made to the new stranger who now lives with us, someone who has resided in our home for many years, someone who has shared our kitchen table or even our bed. We remember the day they told us, "Don't you EVER send me there," and we vowed they'd NEVER have to go to adult day care or an assisted living facility or a nursing home.
We will cry while we make that decision and all the way home after we entrust someone else to care for our loved one, whether it's for eight or 24 hours. We will cry in the middle of the night and the day, over-analyzing everything we have done or think we should have done, allowing our exhausted imaginations to come up with new avenues of guilt.
Leave those regrets behind when you make those tough decisions. You will have done the best thing for your loved one and yourself when you ask for and/or accept help. You will have given them the attention and care they need when you are too exhausted to watch their every move. You will have given them more love and focus when you see them and care for them.
You will have saved yourself and become a much better caregiver in more ways than you can calculate because you can begin to rebuild your body and your mind and your spirit.
And isn't that the person your loved one with Alzheimer's will always hold dear in a place deep within them?
Thursday, August 13, 2009
Some decisions are for the best with Alzheimer's
When it comes to Alzheimer's, some of the hardest decisions we must make tax our soul with a price almost too great to bear.
Sometimes those decisions are made for us when we least expect … and they're the right answer.
The physical and emotional toll of tending to the everyday needs of a loved one with Alzheimer's or any catastrophic illness or injury is costing our nation and our individual families dearly. Caregivers are exhausted and fragile because they're truly on call 24/7 …
What is she doing when I'm not watching her all the time? Is tonight the night he may decide to wander out of the house? Can I leave her alone 15 minutes while I get a shower? How can I get him to eat and drink properly? What if … what if … what if …
Many families justify with good reason their decision to keep a loved one with Alzheimer's at home, certain that the familiar surroundings are the best location for them and enable the caregiver(s) to do their job taking care of their own.
Those 24/7 days and weeks continue to multiply as time goes on. Caregivers are more prone to illness and injury, and what will a family do when that day comes, when the primary caregiver is incapacitated for a day, a week, a month or even longer?
Think about that very carefully …
More tomorrow.
Sometimes those decisions are made for us when we least expect … and they're the right answer.
The physical and emotional toll of tending to the everyday needs of a loved one with Alzheimer's or any catastrophic illness or injury is costing our nation and our individual families dearly. Caregivers are exhausted and fragile because they're truly on call 24/7 …
What is she doing when I'm not watching her all the time? Is tonight the night he may decide to wander out of the house? Can I leave her alone 15 minutes while I get a shower? How can I get him to eat and drink properly? What if … what if … what if …
Many families justify with good reason their decision to keep a loved one with Alzheimer's at home, certain that the familiar surroundings are the best location for them and enable the caregiver(s) to do their job taking care of their own.
Those 24/7 days and weeks continue to multiply as time goes on. Caregivers are more prone to illness and injury, and what will a family do when that day comes, when the primary caregiver is incapacitated for a day, a week, a month or even longer?
Think about that very carefully …
More tomorrow.
Wednesday, August 12, 2009
Who do we believe anymore?
Or is it supposed to be "whom"? Oh, heck, who or whom cares. It's 4 a.m. and I refuse to follow all the grammar rules at this time of the morning when I'm just now climbing into bed …
But not before I try to keep my head from shaking on the pillow to the news that gets crazier and crazier. So, it's unAmerican to speak up at these town hall meetings against the policies being forced down our throats? Well, Mr./Ms. Federal Government, people are angry, we are very angry.
We're tired of flying coach whenever you choose to ride first class on our dimes and dollars.
We're tired of hearing how nobody in the government really knows where all the billions of dollars in stimulus money went.
We're tired of raiding our couches in search of loose change while corrupt politicians and government employees rob us blind.
We're tired of trying to find a way to care for loved ones when the respite programs we so desperately need are being cut back.
We're tired of being told that government knows best when it really doesn't.
We're tired of your lack of accountability when you then hold us accountable for your costly mistakes.
We're tired of not being heard, so that's why some of us are shouting at the town hall meetings.
No, I don't condone the shouting. I do condone listening and common sense. I do advocate doing what's right and not what will get you re-elected.
Who do we believe anymore? The list gets shorter every day.
When government respects us, we may start respecting it again …
I'll sleep on that one.
But not before I try to keep my head from shaking on the pillow to the news that gets crazier and crazier. So, it's unAmerican to speak up at these town hall meetings against the policies being forced down our throats? Well, Mr./Ms. Federal Government, people are angry, we are very angry.
We're tired of flying coach whenever you choose to ride first class on our dimes and dollars.
We're tired of hearing how nobody in the government really knows where all the billions of dollars in stimulus money went.
We're tired of raiding our couches in search of loose change while corrupt politicians and government employees rob us blind.
We're tired of trying to find a way to care for loved ones when the respite programs we so desperately need are being cut back.
We're tired of being told that government knows best when it really doesn't.
We're tired of your lack of accountability when you then hold us accountable for your costly mistakes.
We're tired of not being heard, so that's why some of us are shouting at the town hall meetings.
No, I don't condone the shouting. I do condone listening and common sense. I do advocate doing what's right and not what will get you re-elected.
Who do we believe anymore? The list gets shorter every day.
When government respects us, we may start respecting it again …
I'll sleep on that one.
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