Tuesday, September 25, 2012

Are Alzheimer's Caregivers the Forgotten?


I meet and talk to Alzheimer's 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.

One issue that really frustrates me is the treatment of Alzheimer's care partners.

Are Alzheimer's Caregivers the Forgotten?

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.

Bob DeMarco
Alzheimer's Reading Room

However, if you have a loved one, family member, or friend that is an Alzheimer's caregiver and all you do is tell them what a great job they are doing -- 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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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 to their own life.

Meanwhile, the caregiver puts their life on hold -- or worse they have no life -- while caring for a person living with Alzheimer's. 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 caregivers 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 take 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 this 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 them. Both the caregiver and patient need to talk and interact with other human beings. Don't you?

    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 to do 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. If this is happening to someone you know, you need to help design a plan that allows them to get the sleep they need.
  • 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 is went to a movie theater, not watched a move on television).

    You can solve this problem through team work: one person looks after the patient, and the other one takes the caregiver to the movie.

    This is a "get away from it all experience" that is really beneficial to the mental health of the Alzheimer's caregiver.
Here is what I learned from other caregivers.

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.

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 person living with Alzheimer's 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.

Don't hesitate, or be afraid, to email this article or a link to this article to anyone you know that has been touched by Alzheimer's disease
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Bob DeMarco
Bob DeMarco  is the Founder of the Alzheimer's Reading Room (ARR). Bob is a recognized expert, writer, speaker, and influencer in the Alzheimer's and Dementia Community worldwide. The ARR Knowledge Base contains more than 4,500 articles. Bob lives in Delray Beach, FL.
Search more than 4,6500 original articles in the Alzheimer's Reading Room Knowledge Base