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Grief and Alzheimer’s — Anguish Over Multiple Losses : Huffingtonpost.com


From Huffingtonpost.com by  (Author, Come Back Early Today: A Memoir of Love, Alzheimer’s and Joy) 04/ 3/2012

When Ed, my soul mate of 30 years, developed Alzheimer’s, I sank deeper into despair each day. I thought a lot about grief related to loved ones with dementia. How you lose them little by little, but they are still there. I was thinking about how many years the grief may last before they finally die, and then another kind of grieving begins.

Death is typically a clear starting point for grief, and it’s clear that eventually there will be more or less an end to it. But with dementia, loss comes in bits and pieces and drags on and on for many years before the loved one even dies. It is understandable why I felt overwhelmed by the prospect of so many years of grieving.

1. Grief Over the Loss of the “Previous Person”

When a loved one is showing clear signs of dementia, that person begins to fade away, resulting in feelings of loss and despair. And there are so many losses over time. These may include things such as negative personality changes, not being able to have meaningful conversations, and, in many cases, the person with dementia not even recognizing loved ones.

This type of grief continues as a loved one declines little by little. It seems that every time a caregiver is able to come to terms with the person’s reduced level of functioning, they get even worse. One way to deal with these continuing losses is to learn to let go of the “previous person” and learn to love and cherish the new person just as he or she is. This process, which can be very difficult to master, must be repeated over and over as the disease advances.

My personal experience, as I describe it in Come Back Early Today was that I could reach Ed again when I began to interact with him as though he were a toddler. I took him little stuffed animals, which he absolutely loved. Then I started to play with him and the stuffed animals, and I invented other little games to play with him. We both enjoyed it immensely. My pain at losing the “old Ed” was significantly decreased as I saw how much joy I could bring to my “new Ed.”

2. Anticipatory Grief
Anticipatory grief is that which often occurs when one is expecting a person to die. It typically has the same symptoms as grief after any other death. To deal with this it can be helpful to try to shift your focus from the anticipated death of the person to trying to enjoy together the time that’s remaining. It’s important to try to think of all the ways you might be able to improve the person’s quality of remaining life.

3. Grief When the Person Finally Dies

Grief when a loved one with dementia dies can be more difficult than that for other types of death. One reason is because the caregiver has usually already been grieving the loss of the person for years. It’s difficult to endure the seemingly endless grief.

When a person with dementia dies, their loved ones typically experience the normal stages of grief — denial, anger, bargaining, depression and, finally, acceptance, although these are not always experienced in the same order and not everyone goes through each stage. Some people get stuck in one stage, which can lead to complicated grief (see below).

Research shows that 72% of people who have a loved one with dementia are actually relieved when the person dies. This can lead to incredible feelings of guilt. It’s important to realize that feeling relief when a person with dementia passes away is normal and that there’s no reason to feel guilty about it.

I was able to work through my grief after Ed’s death in part by writing a book about my 30-year relationship with him, focusing primarily on the years when he was demented. The project started out as a way to remember Ed and honor our life together. But mid-way through the process, it became meaningful to me also as an exciting creative endeavor, helping me resolve my grief.

4. Complicated Grief

Complicated grief, also referred to as unresolved grief, is that which does not lessen with time, or is so intense it significantly interferes with one’s life. It may appear as major depression, lead to substance abuse, cause thoughts of suicide or take on the symptoms of post-traumatic stress disorder. It may also become chronic grief. Surprisingly, complicated grief may also manifest itself as a complete absence of mourning. Complicated grief usually requires professional help from a physician and/or psychotherapist.

5. Moving on

Grief must be fully experienced before you can move on. You need to allow yourself time to grieve. It’s important to take good care of yourself physically and emotionally during this time. It will also help to realize that with time your pain will lessen and you will be able to move on.

At some point — when you feel you’re ready — try to begin “returning to the world.” Take up a new hobby or go back to one that lapsed while you were caring for your loved one. Spend more time with the family members and friends you may have seen less in the preceding months or years. Some people also benefit from doing volunteer work.

Much to my surprise, one day I suddenly realized that I’d completely forgotten the third anniversary of Ed’s death, which was a month earlier. That’s when I knew my grief was largely resolved.

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The Best Alzheimers Caregiver Tool of Them All, Harvey


I love watching these videos of Dotty & Harvey, her talking parrot. What a neat tool in caregiving for Alzheimer’s & Dementia-related diseases. I can’t wait to bring Harvey with me to work & see him in action live. Thank you Bob DeMarco for all you do! ~ Lark E. Kirkwood

The Best Alzheimers Caregiver Tool of Them All, Harvey.

Reblog: November is National Alzheimer’s Disease Awareness Month


Each year, November is dedicated as National Alzheimer’s Disease Awareness Month. It is an especially significant time for me to reflect on how this disease has changed my life. Anyone who has witnessed a loved one struggle and eventually succumb to dementia is forever changed by this gut-wrenching, heartbreaking, and incurable disease. By its very nature, Alzheimer’s will destroy you as it claims your loved one. It will chew you up and spit you out as you stand by, helpless to stop the progression and inevitable outcome.

The key to emerging from the devastation for me was to find acceptance by determining what I have learned from Alzheimer’s, and then to use that knowledge wisely, both to make me a better person and to help others when possible. I don’t wish Alzheimer’s on anyone, but I do continue to hope that what people find beyond the finality of Alzheimer’s will help them see more clearly and live more purposefully. This is what I have gained from my mother’s journey through Alzheimer’s disease.

Following are a few of the numerous events to be held in conjunction with National Alzheimer’s Disease Awareness Month.

October 31, 2011: Loving and Living with Alzheimer’s Disease

A photography exhibition recognizing the contributions of Alzheimer’s patients and their families will be open for public viewing from 9 to 10:30 a.m. in the Russell Senate Rotunda, Capitol Visitor Center, Washington D.C. The photographs, taken by renowned photographer Judith Fox, chronicle her husband’s journey with the disease and provide a rare insight into caring for a loved one with Alzheimer’s. Registration is required, see link.

November 13, 2011: National Commemorative Candling Lighting

To honor those who have been lost to the disease or currently live with the disease. I will light a candle in memory of my mother, and pray for all those who have fallen to this disease, as well as all those who have been affected by it – caregivers, family, and friends. Click on link to find a local ceremony near you.

November 15, 2011: National Memory Screening Day

If you suspect cognitive impairment, either for yourself or a loved one, early detection is key to pinpoint the exact problem and offer solutions and options as possible. Do it for yourself or a loved one if you suspect Alzheimer’s disease. Click on the link to find a memory screening in your community.

Alzheimer’s is the sixth leading cause of death in the United States and an epidemic is predicted as baby boomers age over the next twenty years. November reminds us all to be aware . . . . . and to learn more . . . . we must find a cure.

Periwinkle ribbon

Music may protect against effects of Alzheimer’s


From: http://www.11alive.com/news/article/211172/3/EMORY-Music-may-protect-against-effects-of-Alzheimers

ATLANTA – Children who learn to play a musical instrument and keep playing for many years will enjoy a better brain when they age. Not only will they retain cognitive skills that others may loose, they may enjoy special protections against some effects of Alzheimer’s disease, according to a study conducted by Brenda Hanna-Pladdy, PhD., a clinical neuropsychologist in Emory University‘s Department of Neurology.

“Natural aging of the brain and the effects of the more accelerated decline found in neurodegenerative conditions such as Alzheimer’s Disease may be delayed or diminished, ” said Hanna-Pladdy.

Her study used a comprehensive battery of neuropsychological tests on individuals age 63 to 80. Those with more than ten years of experience playing a musical instrument performed best in tests. Those with less than ten years experience score lower. Those with no experience tested lowest. Subjects were tested on spatial memory, naming objects, and cognitive flexibility, the brain’s ability to adapt to new information. These abilities typically decline as the brain ages or affected by conditions such as Alzheimer’s disease

Previously, research has been done on the cognitive benefits that come with musical activity by children, but this is the first study to examine whether those benefits can extend across a lifetime.

Roger Lutterman of Sandy Springs scored high in tests conducted by Hanna-Pladdy’s team at Emory. “It’s not surprising,” said Hanna-Pladdy. “He’s been playing the piano for 60 years.”

When told of the connection between his musical history and his high scores, Lutterman, a retired Delta Airlines pilot, smiled and said, “it kind of feels like having an extra insurance policy in your back pocket.”

Hanna-Pladdy said, “Music literally changes and strengthens your brain because it is such a complex activity, demanding a range of auditory processing, motor skills, and memory. Playing an instrument helps create new alternative pathways for your brain to communicate and that plasticity may act as a buffer against cognitive decline as we get older.”

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