Category Archives: dementia

Celebrating A Life With Alzheimer’s

I found this touching letter written by a man battling Alzheimer’s.  The author’s son submitted the letter, which was written by his father nearly 10 years ago at the onset of the disease.

…if I fight it and think positively maybe I can conquer this Alzheimer fellow . It would be a pleasure to laugh at him and say goodbye. Think of what you have achieved in the past years and these thoughts will help. You have raised children, and they have loved you and you are so fortunate. Appreciate what you have. You have to be strong, I realize, but you can do it! I volunteer at two hospitals and enjoy taking people to their destinations in the hospital. I sometimes (actually quite often) joke with them. As I am leading patients upstairs, I will humour them a bit by telling them “I am taking you first to Las Vegas” and then we will go up in the elevator. They always laugh and say, “Oh please!” It makes them feel good and I feel good also. Another casualty of the fiendish Mr. Alzheimer is the family. My family takes good care of me but sometimes I feel they are at fault because they are being overprotective. They mean well but it makes me feel like a nothing. In my case, I am on the borderline of Alzheimer’s. I say this because, I am not that bad. I forget names, that is all! I was advised not to drive but I still feel that I can drive better than all the hot-shots on the road to-day. I have not seen the statistics of my condition and on my next visit to my doctor I will ask him to show me the results of my tests. I still play a great game of tennis, I bowl and do all the normal other things that people do, and yet I have this Alzheimer’s’ stigma. Maybe if they (whoever they may be) could live with me and see how I act daily I wouldn’t be put in this category.

To read the entire piece, check out The Birthdays Continue Despite Alzheimer’s Disease.   It will make you smile.


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Filed under advocacy, aging, alzheimer's disease, dementia

What Alzheimer’s Disease Has Taught Me (so far)

I’ve been in long term health care for 15 years now.  I’ve worked with and cared for numerous individuals and families who have been touched by the heartbreaking disease known as Alzheimer’s.   There have even been a few of my own relatives who have lived with AD–few aunts and uncles.   Then, a couple years ago, my dad was diagnosed with Alzheimer’s-type dementia.

My knowledge base has grown and grown over the years I’ve worked in geriatric care.   More than most anyone, I am well trained and equipped on what to expect and how to handle the myriad of twists and turns that accompany AD.   Still, as anyone will tell you, when it’s *your* close family member who is part of the Alzheimer’s equation, all bets are off.   It’s impossible not to be emotionally invested in whatever happens on this journey.

Granted, I’m a pretty easy-going person.  I try to look for the positive and the lessons that can be found in any situation, no matter how hard, sad or devastating.  (I get this trait from my dad, I believe).  And while my dad is in the early stages of AD at the moment, I realize things can change quickly and that there is no more taking things for granted where he is concerned.

The Alzheimer’s Association has a wonderful online support forum filled with tons of people who either are caring for someone with AD or who are dealing with the disease in some way, shape or form.   I  recently was inspired to add to a great thread where forum posters list what they’ve learned from Alzheimer’s Disease.

Here are just a few of the lessons I’ve learned so far:

  • Many people with AD can still keep their sense of humor through most of the disease process. Looking for the humor in those not-so-great moments can be a life saver!
  • People will forget what you say and what you do for them, but they will never forget how you made them feel.
  • Hugs and kisses go a long way, especially when you don’t know what to say.
  • We’re a society that prides ourselves on our “intellect” and we are trained to live in our heads. Perhaps AD is here in part to teach us to live in and with our hearts more.

I wish this disease did not exist, but I continue to remain open to what it has to teach on an individual and collective level.   The lessons are always there, you just have to be open to finding them.

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Filed under advocacy, aging, dementia, loss theory, social work skills

ElderNews You Can Use (4-24-10)

ElderNews is a semi-weekly round up of links around the web that touch on topics of aging, death/dying and health care.

  • Cognitive stimulation therapy helping dementia patients in the UK.    In the facility where I work, the recreation department has a daily structured program in place that is very similar to this concept for our more severely cognitively impaired residents.  I can tell you the program  does seem to aid in reducing agitation and some other dementia-related behaviors.  It would be interesting to gauge as to whether or not CST has any effects on improving our resident’s overall cognitive capacity.
  • How the Class Act is seeking to set up a Class Program to assist caregivers in managing their loved one’s care at home.  While every bit of financial assistance is a wonderful thing, I would suggest a minimum cash benefit of $100 a day for those with more skilled care needs.   It already costs around $300 per day to reside in a long term care facility, so that would still be a huge savings.
  • I love the insights, tips and glimpses into the world of Alzheimer’s Speaks.  This blog is a beautiful narrative depicting the love a daughter has for her mother who has AD and resides in a nursing facility.  Her post about the “surprises” one can encounter when loving and caring for an Alzheimer’s individual is truly touching.
  • Only about 30% of adults create an Advance Directive.  Doctor’s need to step it up and encourage more of their patient’s to name health care agents and outline their health care wishes before a catastrophic medical event occurs.   More importantly, Advance Directives should be drawn up before an elderly loved one is no longer able to articulate his or her wishes.
  • The American Geriatric Society Foundation for Health & Aging lists tips to ensure caregivers find good long term care placement for their loved ones.

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Filed under advance directives, advocacy, aging, alzheimer's disease, death and dying, dementia, ElderNews, end of life care planning

An Identity Beyond The Dementia Diagnosis

Its a common malady in health care settings to think of a patient or client in terms of their disease or diagnosis.  Come to think of it, we all have a tendency to view people within a categorical lens; it’s what we’re taught to do.

Sometimes it seems like people would rather be diagnosed with any other disease than Alzheimer’s or dementia.  It is a devastating condition to live with, no doubt.   It can often be even more crushing for the family of the dementia patient.  One of the hardest things in the world to witness is your loved one fading away…and with Alzheimer’s/dementia, there are typically years of mental and cognitive decline that precede bodily or physical deterioration.   The person *looks* the same and *seems* the same on the surface, but their personality, language ability and memories are being torn away from them.   That’s a terrifying and sad thing to see happen in the people who mean a lot to us.

Still, a dementia diagnosis need not be the end of the world.

Just because your loved one can’t recall what they did five minutes earlier, doesn’t mean they don’t enjoy continuing to share and engage in their relationships.  Dementia can be an isolating disease, whether the individual lives in a long term care facility or in the community.   In the earlier stages, the person often is able to recognize that something is not right within them.   They notice some of the mental and cognitive  changes taking place.  Many people become embarrassed or ashamed by what is happening to them, and therefore begin to pull away from their family, friends,  and activities.  They don’t want anyone to perceive that they have a memory problem and they certainly don’t want to be identified solely by this degenerative and mind-robbing condition.

If you have a loved one with Alzheimer’s Disease or dementia,  one of the best things you can do for them is continue to include them in your life.   It doesn’t matter if you are repeating the same news over and over to them, or if they tell you the same stories from their childhood as though its the first time they shared it with you.    People with dementia just want to have someone they can talk with.   It means so much to be able to share in other people’s lives and keeping connected to the world outside sometimes helps the person with dementia to retain many  of their cognitive skills for a longer time than if they remained isolated.

And keep in mind: dementia may be a part of the person’s medical diagnosis, but it is not ALL of what makes them who they are and always were to you.

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Filed under alzheimer's disease, dementia, loss theory

ElderNews You Can Use

ElderNews is a semi-weekly round up of links around the web that touch on topics of aging, death/dying and health care.

  • Few are prepared for the heavy financial burdens of long term care. 
  • Tips for planning elder care strategies and initiating discussions on end of life issues.  Remember, these conversations are best held while your loved on is still relatively healthy and able to communicate their needs and wishes to you.
  • Forget Me Not Club works together to make lasting memories from ceramics class participants with dementia.
  • 31 year old woman with rare form of  Alzheimer’s Disease gives birth.

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Filed under advance directives, aging, alzheimer's disease, death and dying, dementia, ElderNews, end of life care planning, palliative care