So it's over two years since Mom finally passed peacefully away and I'm finally getting used to the idea and feeling good about the things I was able to do for her during her last, dark years. No more guilt and no more regrets. It has taken all this time.
Before she died, a friend who had been down a similar path with his mother said this to me: "Bob, no matter how much you have done for her, when she dies you will feel like you didn't do enough." I listened respectfully and thought: 'Not me. I've been there for her through all the trying stunts she pulled as her mind and temperament went down the tubes.'
He was right, of course. From the moment the last shovel full of earth fell on her coffin until just a few months ago, I was hit with full fledged guilt for all the squandered opportunities to do even more for her—that I didn't do. The more that time passed, the more my memory focused on positive things in our mutual past and the less clearly I recalled the negatives—and the guiltier I felt.
There's no help for it. So I'll say to you what was said to me: "No matter how much you have done for your loved one, when death finally comes you will probably feel like you didn't do enough."
If it happens to you, roll with it. I'm told now by experts in caregiving that it's a common feeling and that it passes. I can now say it's true.
It passes!
Bob Tell
Author, "Dementia-Diary, A Caregiver's Journal"
http://www.dementia-diary.com
Sunday, February 8, 2009
Wednesday, January 28, 2009
How Many Different Dementias Are There?
This is a repeat of the single most popular post on my blog, one that is also appearing on eldercare blogs, zines and sites throughout the web. It first appeared on my former website on September 17, 2006, and on this blog in July, 2008. It gets hundreds of "hits" every month and readers frequently tell me how helpful it is to them. So here it is again. Feel free to continue a conversation on this theme, caregiver burnout, caregiver support, or on any other related topic:
In 1906, Dr. Alois Alzheimer presented a key paper to the meeting of the South West German Society of Alienists. In it he described the disease syndrome that now bears his name. Today, Alzheimer’s Disease has become the common term most people use whenever they talk about any kind of dementia. In fact, the very term “Alzheimer’s” has become a catchall for any syndrome in which progressive cognitive dysfunction is the major manifestation.
However, there are dozens of other dementias including, to name just a few: Multi-Infarct Dementia, Frontotemporal Dementia (FTD), Pick's Disease, Progressive Aphasia, Corticobasal Degeneration, Lewy Body Dementia, Senile Dementia, Binswanger’s Disease, Vascular Dementia, Parkinsonian, etc.
From a caregiver’s point of view, it almost doesn’t matter which dementia is at hand. The perpetual grief and mourning felt by the caregiver will be the same regardless of the specific process affecting his or her loved one.
My special interest is in Multi-Infarct Dementia because that is the one that affected my mother and the one I write about in: “DEMENTIA DIARY: A Care Giver’s Journal.” (Another name for this syndrome is Vascular Dementia.)
I should say that I am not a physician or a professional expert in this disease. I am, by profession, a hospital administrator, so I do feel equipped to at least understand the language of the clinicians. What I know comes from 16 years of watching my mother sink into her opaque world, plus 16 years of discussions with physicians providing her medical care.
Here is the way one physician described Multi-Infarct Dementia to me. It is caused by multiple strokes, some call them mini-strokes. The “victim” of this condition may not be, indeed usually is not, aware that anything out of the ordinary has occurred. Neither are his or her significant others.
Perhaps there is momentary weakness, headache, or dizziness, but nothing major. Over time, however, enough damage is done to the brain that symptoms begin to appear such as: confusion, impaired judgment, aphasia, irritability, depression, mood swings, inertia, significant memory loss, and a host of possible others.
Not all symptoms are experienced by every sufferer, but sooner or later most of them may appear. And the symptoms of Multi-Infarct Dementia are not really all that different from Alzheimer’s or other dementias. I’ve been given to understand that these differences are subtle, hard to tell apart for a layman.
Health care professionals have explained that if one were to line up sufferers of each of the various dementias next to one another you could probably differentiate them—but that’s what it would take.
If you are dealing with a dementia in a loved one, good luck and best wishes in your search for help and understanding.
Bob Tell
Author, "Dementia-Diary, A Caregiver's Journal"
http://www.dementia-diary.com
In 1906, Dr. Alois Alzheimer presented a key paper to the meeting of the South West German Society of Alienists. In it he described the disease syndrome that now bears his name. Today, Alzheimer’s Disease has become the common term most people use whenever they talk about any kind of dementia. In fact, the very term “Alzheimer’s” has become a catchall for any syndrome in which progressive cognitive dysfunction is the major manifestation.
However, there are dozens of other dementias including, to name just a few: Multi-Infarct Dementia, Frontotemporal Dementia (FTD), Pick's Disease, Progressive Aphasia, Corticobasal Degeneration, Lewy Body Dementia, Senile Dementia, Binswanger’s Disease, Vascular Dementia, Parkinsonian, etc.
From a caregiver’s point of view, it almost doesn’t matter which dementia is at hand. The perpetual grief and mourning felt by the caregiver will be the same regardless of the specific process affecting his or her loved one.
My special interest is in Multi-Infarct Dementia because that is the one that affected my mother and the one I write about in: “DEMENTIA DIARY: A Care Giver’s Journal.” (Another name for this syndrome is Vascular Dementia.)
I should say that I am not a physician or a professional expert in this disease. I am, by profession, a hospital administrator, so I do feel equipped to at least understand the language of the clinicians. What I know comes from 16 years of watching my mother sink into her opaque world, plus 16 years of discussions with physicians providing her medical care.
Here is the way one physician described Multi-Infarct Dementia to me. It is caused by multiple strokes, some call them mini-strokes. The “victim” of this condition may not be, indeed usually is not, aware that anything out of the ordinary has occurred. Neither are his or her significant others.
Perhaps there is momentary weakness, headache, or dizziness, but nothing major. Over time, however, enough damage is done to the brain that symptoms begin to appear such as: confusion, impaired judgment, aphasia, irritability, depression, mood swings, inertia, significant memory loss, and a host of possible others.
Not all symptoms are experienced by every sufferer, but sooner or later most of them may appear. And the symptoms of Multi-Infarct Dementia are not really all that different from Alzheimer’s or other dementias. I’ve been given to understand that these differences are subtle, hard to tell apart for a layman.
Health care professionals have explained that if one were to line up sufferers of each of the various dementias next to one another you could probably differentiate them—but that’s what it would take.
If you are dealing with a dementia in a loved one, good luck and best wishes in your search for help and understanding.
Bob Tell
Author, "Dementia-Diary, A Caregiver's Journal"
http://www.dementia-diary.com
Monday, January 19, 2009
Oops, I forgot your name!
I'll never forget the shock I felt when I first heard the following comment from a medical professional: "It's not about memory, it's about cognition."
He was talking about dementia and what, in his opinion, is a popular misconception that leads to a lot of unnecessary worry by people who are suddenly forgetting names and where they placed things like the car keys.
What did he mean, "it's not about memory?" After all, it was obvious to me that it was indeed about memory. I was closely monitoring my mother's symptoms as she sank deeper and deeper into the opaque fog of her multi-infarct dementia. She was forgetful about everything, including exactly who I was. I mean, the nurse asked her during one of my visits:
"Look who's here, Millie. Do you know who this is?"
Mom smiled and said, "Of course I do. He's my grandson."
"No Mom," I said. "I'm your son."
"I knew that," she said, still smiling.
So wasn't that about memory? Of course it was. What the medical professional meant was that it's more complicated than that.
Most of us have heard the expert statement that if you forget where you put your car keys, you don't have to worry about dementia. But if you forget what the car keys are for, that's serious. That could be dementia. That's not just a memory problem (although memory is certainly part of the picture), that's cognition, which the dictionary defines as: "the act or process of knowing; perception."
It's subtle but it's real. Mom didn't just forget me. In fact, she remembered me. She just didn't know who I was.
This isn't just semantics. As we age, most of us develop retrieval problems where we can't instantly recall something or someone that should be very familiar to us. According to my medical professional, that's a normal memory issue far removed from dementia.
But it's still darned annoying, isn't it?
Bob Tell
Author, "Dementia-Diary, A Caregiver's Journal"
http://www.dementia-diary.com
He was talking about dementia and what, in his opinion, is a popular misconception that leads to a lot of unnecessary worry by people who are suddenly forgetting names and where they placed things like the car keys.
What did he mean, "it's not about memory?" After all, it was obvious to me that it was indeed about memory. I was closely monitoring my mother's symptoms as she sank deeper and deeper into the opaque fog of her multi-infarct dementia. She was forgetful about everything, including exactly who I was. I mean, the nurse asked her during one of my visits:
"Look who's here, Millie. Do you know who this is?"
Mom smiled and said, "Of course I do. He's my grandson."
"No Mom," I said. "I'm your son."
"I knew that," she said, still smiling.
So wasn't that about memory? Of course it was. What the medical professional meant was that it's more complicated than that.
Most of us have heard the expert statement that if you forget where you put your car keys, you don't have to worry about dementia. But if you forget what the car keys are for, that's serious. That could be dementia. That's not just a memory problem (although memory is certainly part of the picture), that's cognition, which the dictionary defines as: "the act or process of knowing; perception."
It's subtle but it's real. Mom didn't just forget me. In fact, she remembered me. She just didn't know who I was.
This isn't just semantics. As we age, most of us develop retrieval problems where we can't instantly recall something or someone that should be very familiar to us. According to my medical professional, that's a normal memory issue far removed from dementia.
But it's still darned annoying, isn't it?
Bob Tell
Author, "Dementia-Diary, A Caregiver's Journal"
http://www.dementia-diary.com
Wednesday, January 7, 2009
WHERE DOES ELDERCARE TAKE PLACE?
This is my fifth post based on a policy paper of the Greater Detroit Area Health Council (GDAHC), entitled: "DESIRED CHARACTERISTICS OF A SYSTEM OF SERVICES FOR OLDER ADULTS." The full policy paper is very detailed and expands upon the lists I have quoted in this and previous posts with comprehensive narrative. Nevertheless, the basic lists are self-explanatory. The following list of "Service Delivery Settings" is a direct quote and an excellent example of a useful guide:
"SERVICE DELIVERY SETTINGS
• Home (single or multiple unit)
• Senior centers, day care centers, day hospitals
• Supervised apartments, congregate housing
• Homes for the aged
• Adult foster care facilities
• Basic nursing facilities
• Skilled nursing facilities
• Rehabilitation units/facilities
• Hospice
• Hospitals
• Practitioner offices
• Ambulatory care centers
• Specialized nursing homes for the mentally ill and mentally retarded
• County medical care facilities"
Can you think of anything to add? If so, please comment.
Bob Tell
Author, "Dementia-Diary, A Caregiver's Journal"
http://www.dementia-diary.com
"SERVICE DELIVERY SETTINGS
• Home (single or multiple unit)
• Senior centers, day care centers, day hospitals
• Supervised apartments, congregate housing
• Homes for the aged
• Adult foster care facilities
• Basic nursing facilities
• Skilled nursing facilities
• Rehabilitation units/facilities
• Hospice
• Hospitals
• Practitioner offices
• Ambulatory care centers
• Specialized nursing homes for the mentally ill and mentally retarded
• County medical care facilities"
Can you think of anything to add? If so, please comment.
Bob Tell
Author, "Dementia-Diary, A Caregiver's Journal"
http://www.dementia-diary.com
Monday, December 29, 2008
WHAT OTHER OLDER ADULT SERVICES SHOULD BE AVAILABLE?
This is my fourth post based on a policy paper of the Greater Detroit Area Health Council (GDAHC), entitled: "DESIRED CHARACTERISTICS OF A SYSTEM OF SERVICES FOR OLDER ADULTS." This following is a direct quote:
"The continuum of care should include support services, personal care services, basic and skilled nursing care services, and acute care services in a wide variety of service settings ranging from in-home to institutional environments…Acute medical care includes primary, secondary and tertiary medical care and alternatives to the biomedical models of care preferred by certain ethnic groups…Certain services should be available and accessible on a temporary or respite basis for caregivers and/or care receivers (e.g., housing, personal care, supervision, etc.)…Certain services should be available and accessible on an emergency basis (e.g., medical, housing, psychological, etc.)."
Can you think of anything to add? If so, please comment.
Bob Tell
Author, "Dementia-Diary, A Caregiver's Journal"
http://www.dementia-diary.com
"The continuum of care should include support services, personal care services, basic and skilled nursing care services, and acute care services in a wide variety of service settings ranging from in-home to institutional environments…Acute medical care includes primary, secondary and tertiary medical care and alternatives to the biomedical models of care preferred by certain ethnic groups…Certain services should be available and accessible on a temporary or respite basis for caregivers and/or care receivers (e.g., housing, personal care, supervision, etc.)…Certain services should be available and accessible on an emergency basis (e.g., medical, housing, psychological, etc.)."
Can you think of anything to add? If so, please comment.
Bob Tell
Author, "Dementia-Diary, A Caregiver's Journal"
http://www.dementia-diary.com
Friday, December 19, 2008
WHAT PERSONAL CARE SERVICES ARE NEEDED BY OLDER ADULTS?
The following list was compiled by the Greater Detroit Area Health Council (GDAHC) for its policy paper entitled: "DESIRED CHARACTERISTICS OF A SYSTEM OF SERVICES FOR OLDER ADULTS."
These are services that a blue ribbon task force of experts on aging felt should be available in every community. Are they available in yours? Not every person will need every service, but every service will be needed by someone.
This blog post lists the Personal Care Services that were identified:
1. personal supervision and protection
2. supervision and assistance with personal care including care of skin, mouth, hair, etc
3. assistance in and stimulation of activities of daily living (viz., eating, bathing, transferring, etc.) and physical activities.
4. financial counseling, management
5. legal counseling
6. psychological counseling, diagnostic evaluations/work-ups
7. nutritional counseling
8. medication assistance and counseling
9. peer counseling, support groups, self-help groups
10. guardianship
11. therapies (occupational, physical, speech, recreational)
12. adaptation (personal and medical devices)
13. substance abuse counseling, diagnostic evaluation/work-ups
14. vision services
15. hearing services
16. dental services
17. provision of medical supplies
18. day care services
19. hospice services
20. pastoral services
Can you think of anything to add to this list? If so, please comment.
Bob Tell
Author, "Dementia-Diary, A Caregiver's Journal"
http://www.dementia-diary.com
These are services that a blue ribbon task force of experts on aging felt should be available in every community. Are they available in yours? Not every person will need every service, but every service will be needed by someone.
This blog post lists the Personal Care Services that were identified:
1. personal supervision and protection
2. supervision and assistance with personal care including care of skin, mouth, hair, etc
3. assistance in and stimulation of activities of daily living (viz., eating, bathing, transferring, etc.) and physical activities.
4. financial counseling, management
5. legal counseling
6. psychological counseling, diagnostic evaluations/work-ups
7. nutritional counseling
8. medication assistance and counseling
9. peer counseling, support groups, self-help groups
10. guardianship
11. therapies (occupational, physical, speech, recreational)
12. adaptation (personal and medical devices)
13. substance abuse counseling, diagnostic evaluation/work-ups
14. vision services
15. hearing services
16. dental services
17. provision of medical supplies
18. day care services
19. hospice services
20. pastoral services
Can you think of anything to add to this list? If so, please comment.
Bob Tell
Author, "Dementia-Diary, A Caregiver's Journal"
http://www.dementia-diary.com
Saturday, December 6, 2008
Are These Services for Older Adults Available in Your Community?
The following list was compiled by the Greater Detroit Area Health Council (GDAHC) for its policy paper entitled: "DESIRED CHARACTERISTICS OF A SYSTEM OF SERVICES FOR OLDER ADULTS."
These are services that a blue ribbon task force of experts on aging felt should be available in every community. Not every person will need every service, but every service will be needed by someone.
This blog post will list the Support Services that were identified.
SUPPORT SERVICES
housekeeping
laundry
food shopping
meal preparation and delivery
other chore services
home maintenance such as repairs, weatherization, painting, etc.
transportation
diversional and motivational activities
housing assistance
health screening, education, and health promotion services
information and referral
outreach
interpreter services
advocacy
security and crime prevention
companionship (visitation, attendant)
telephone reassurance
telephone technical assistance
emergencey response systems (e.g., Lifeline)
case management
preventive care (e.g., physical exams, immunizations, etc.)
adult education
employment
social work services
training in caregiving
A future post will present the GDAHC list of recommended Personal Care Services.
Bob Tell
Author, "Dementia-Diary, A Caregiver's Journal"
http://www.dementia-diary.com
These are services that a blue ribbon task force of experts on aging felt should be available in every community. Not every person will need every service, but every service will be needed by someone.
This blog post will list the Support Services that were identified.
SUPPORT SERVICES
housekeeping
laundry
food shopping
meal preparation and delivery
other chore services
home maintenance such as repairs, weatherization, painting, etc.
transportation
diversional and motivational activities
housing assistance
health screening, education, and health promotion services
information and referral
outreach
interpreter services
advocacy
security and crime prevention
companionship (visitation, attendant)
telephone reassurance
telephone technical assistance
emergencey response systems (e.g., Lifeline)
case management
preventive care (e.g., physical exams, immunizations, etc.)
adult education
employment
social work services
training in caregiving
A future post will present the GDAHC list of recommended Personal Care Services.
Bob Tell
Author, "Dementia-Diary, A Caregiver's Journal"
http://www.dementia-diary.com
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