Saturday, April 25, 2009

Are Alzheimer's Caregivers the Forgotten?

Forty percent of Alzheimer's caregivers end up suffering from depression. Do you want to see this happen to a loved one or friend?
One issue that really frustrates me is the treatment of Alzheimer's caregivers. Most Alzheimer's caregivers hear people tell them how wonderful they are for taking care of their loved one. As a caregiver, I learned to appreciate these compliments. They help, they really do.

However, if you have a friend or a loved one that is an Alzheimer's caregiver and that is all you do -- it is not enough. Many Alzheimer's caregivers are forgotten by family and friends. This is a sad truth that is rarely discussed.
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I meet and talk to caregivers all the time. It is not unusual for them to tell me that as time goes on, and as Alzheimer's worsens, one by one their family and friends fade away. This is understandable -- Alzheimer's is scary and disconcerting. It is hard to accept, hard to understand, and hard to watch as it progresses.

It is not unusual for the friends and family to continue to call and give the caregiver the old 'rah rah siss boom ba" and then they get back their own life.

Meanwhile, the caregiver puts their life on hold -- or worse they have no life -- while caring for an Alzheimer's sufferer. Calling and letting the caregiver "vent" is helpful, very helpful, but it is not enough.
Like it or not, if you are a family member or friend of an Alzheimer's caregiver and you are not helping them--you have abandoned them. I am sure this sounds harsh. But, it's not even close to the harshness of your own behavior.
Caregivers need help. A few hours here and there to get away from it all is an important step in improving their lives. Some time to enjoy the world outside their home. Time to re-attach with others.

Why am I so passionate and adamant about this?

Forty percent of Alzheimer's caregivers end up suffering from depression -- four out of ten. Do you want to see this happen to a loved one or friend? .
Alzheimer's is a sinister disease--it kills the brain of the person suffering from Alzheimer's.
And, it will try to kill the brain of the Alzheimer's caregiver.
I really don't believe this problem is well understood.

Here are my immediate suggestions.
  • If you know an Alzheimer's caregiver, find a way to organize the troops--family and friends--and get involved. Somebody has to take the initiative and if you are reading this article--take charge now.
  • If you know a family that is dealing with Alzheimer's send them the link to this article and encourage them to organize up their own troops and do something.
  • Nothing works better than a small team of caregiver helpers. The key words here are team and team work.
Here are some actions that will improve the life of the caregiver and help them avoid depression.
  • The Alzheimer's caregiver needs to get away from it all. They need a respite every few days. This means someone must taking over while they go do something they enjoy. You might find this difficult to believe, but when I get to go to the store, take my time, and look around at the surroundings -- it is a treat. I bet you take it for granted.
  • Invite your Alzheimer's caregiver and their loved one over for lunch or dinner. Most Alzheimer's caregivers tell me that one of the biggest problems they face is socialization. If you don't believe me--ask. Socializing really benefits the Alzheimer's sufferer (see: A Wonderful Moment). What is not as apparent is how much it benefits the Alzheimer's caregiver.
  • This one is tough but could very well keep the caregiver from becoming depressed. Many sufferers of Alzheimer's get up in the middle of the night. This means the caregiver needs to get up with them. Sleep deprivation often leads to depression and it can cause erratic behavior. Imagine going night after night without sleeping well.
  • Do you know an Alzheimer's caregiver? Ask them when was the last time they went to a movie? You might be surprised when you hear the answer (that's went, not watched). Solve this problem through team work: one person can look after the sufferer, and the other one can take the caregiver to the movie. This is a "get away from it all experience" that is really beneficial to the mental health of the caregiver.
Here is what I learned. Many caregivers get abandoned by friends and family. The reasons for this varies widely--ranging from denial, dysfunction, to fear of Alzheimer's. Many times friends and family while living their own busy lives fail to realize what is happening to the caregiver. An Alzheimer's caregiver might vent to you or me about their difficult day; but, they rarely tell friends and family that they need help. Worse, they rarely get asked directly from friends and family what they need most personally.

I am not talking about running down to the grocery store to pick up a quart of milk.

Let me summarize.
  • Forty percent of Alzheimer's caregivers end up suffering from depression.
  • You can do something about this problem.
  • The best solution is to organize a small group of people, and to come up with a plan to assist the Alzheimer's caregiver.
  • You might consider adopting an Alzheimer's caregiver.
I know from my own experience that if you take action you'll end up feeling good about yourself. Action will change and enrich your life.

Don't allow Alzheimer's to take control of the caregiver -- form a team to take control of the problem. The caregiver gets a life, the sufferer gets more effective care, and the team gets the wonderful feeling that comes along with doing something and getting involved.

Note: I realize the above does not apply to all families and friends of Alzheimer's caregivers. On the other hand, I know that this article is about one of life's dirty little secrets....

Bob DeMarco is a citizen journalist and Caregiver. In addition to being an experienced writer he taught at the University of Georgia , was an Associate Director and Limited Partner at Bear Stearns, the CEO of a software development company, and a mentor. Bob currently resides in Delray Beach, FL where he cares for his mother, Dorothy.

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