Archive for April 2012

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The ‘Defining Event:’ Coming Face to Face With Alzheimer’s

Wednesday, April 25th, 2012

When a person is beginning to show signs of dementia, that person and their loved ones are typically in denial. They can make excuses for, or try to ‘explain away,’ the symptoms. This can go on for months or even years. But in many cases there is eventually what I call a ‘defining event.” That’s when something so bizarre and shocking happens that people are forced to face the fact that the person is demented.

I personally made excuses for Ed’s behaviors for years before the ‘defining event’ occurred. That was when he was looking for his scissors and I told him to look in his kitchen – which is where he kept them. He then asked me, “What’s a kitchen? I don’t have a kitchen.”

No amount of prompting or explaining helped. I tried in vain for 15 minutes to help him remember what a kitchen was. That was when I finally had to admit that he was demented.


Maybe It Isn’t Alzheimer’s: 10 Conditions That Can Mimic Dementia

Saturday, April 21st, 2012

If your loved one is showing signs of dementia it’s critical to take them to a doctor as soon as possible. First, because if it is Alzheimer’s, treatment works best if started early. The other reason is that a small number of people showing signs of Alzheimer’s actually have something else, and some of those other conditions can be treated or even reversed.

Conditions that can masquerade as Alzheimer’s include things such as underactive thyroid, vitamin deficiencies, too much calcium in the blood, syphilis that has spread to the brain, severe clinical depression, delirium, certain viral or bacterial infections, lead and mercury poisoning, schizophrenia, and a rare condition called normal pressure hydrocephalus (NPH).

My New Public Speaking Career

Saturday, April 14th, 2012

I have decided to launch a series of speaking engagements,during which I’ll describe Come Back Early Today and also share some of my experiences as an Alzheimer’s caregiver. I’m currently arranging engagements at some dementia care facilities here in Kansas City. Several of them have evening education presentations for the general public, with a focus on meeting the needs of Alzheimer’s caregivers.

I’ve also been invited to speak at the annual meeting of the Kansas Activity Directors Association (KADA)  in Wichita this coming fall.  That organization is made up of Activity Directors in long-term care facilities.

As soon as I have some events scheduled locally I’ll post the details here.

Moving On After A Loved One With Alzheimer’s Passes Away

Wednesday, April 11th, 2012

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 a month earlier. That’s when I knew my grief was largely resolved.

Alzheimer’s and Grief: Anguish Over Multiple Losses – Part II

Saturday, April 7th, 2012

Note: This is part II in a two-part series about Alzheimer’s and grief

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.

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 has found that 72% of people who have a loved one with dementia are actually relieved when the person dies. This can lead to severe 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 my book, Come Back Early Today, about my 30-year relationship with him, focusing 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.

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.

Alzheimer’s and Grief: Anguish Over Multiple Losses – Part I

Wednesday, April 4th, 2012

Note: This is Part I of a tw0-part series on Alzheimer’s and grief

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

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 long before the person even dies. One can feel completely overwhelmed by the prospect of so many years of grieving.

Grieving 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 the patient declines little by little. It seems that every time a caregiver is able to come to terms with the person’s level of functioning, they get 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.”