JOAN’S WEEKEND BLOG – JULY 31/AUG 1, 2010 – DO YOU HAVE WHAT IT TAKES TO BE A CAREGIVER?

This week I came across an article by Gary J. LeBlanc, entitled “Characteristics of a Successful Caregiver”. Mr. LeBlanc was the primary caregiver for his Alzheimer’s Diseased father for 8 years, and has published a collection of his articles on the subject in a book – Staying Afloat in a Sea of Forgetfulness. Usually, when I read an article such as this, I simply put the link up in the Breaking News section, but this one touched a nerve, and I felt the need to discuss it. Please read the article below. My commentary will be at the end.

Gary J. LeBlanc
Common Sense Caregiving
Published: July 29, 2010

When caring for someone who is suffering from Alzheimer's or dementia, be prepared to face hardships unlike anything you have encountered before.

Unfortunately, not everyone who attempts caregiving will be successful.

There's no shame in admitting defeat or the need for help. This ordeal is unequal to any other and if you find that you're suddenly unable to carry out this crusade, please don't go through the rest of your life inflamed with guilt. This is definitely not what your loved one would have wished upon you.

Here are five main characteristics you will need to embrace while caring for your loved one. As long as you maintain these significant qualities you should survive this noble campaign just fine:

Commitment — faithful dedication to the cause of the patient until his or her final breath. You must stay devoted to the very end. Even if there comes a time when you can no longer care for your loved one at home and have to place them into a facility, your job is not finished. You still have to remain by their side, constantly making sure his or her best interest is always being looked after.

Compassion — concern toward the suffering and understanding the feelings of the patient and family members. One thing that I've learned is that denial is one symptom of Alzheimer's which affects everyone close to the patient. Many families are torn apart, some never healing their wounds. It is a devastating experience watching a spouse, parent or sibling dissolve right in front of your eyes.So, when caring for such an individual you must continue to be compassionate to all that are near.

Endurance — withstanding painful long years of misery for the victim and caregiver because of this dreadful disease.
You have to reach deep inside yourself and pull out all the endurance you can find. It is in there, believe me. Sadly, there is no time frame for this disease. There have been some cases where the victim has suffered a tormenting 20 years with this illness. This is not the norm; they usually only survive six to eight years after they have been diagnosed. But, you just never know. So, strap on your boots tight and dig your heels in and be prepared for a long-haul of asperity.

Unselfishness — generosity of putting your life on hold, including social isolation and financial burdens.
One of the first things you notice when you become a caregiver is that your social life will start withering away. Also, most caregivers will have to terminate their employment and in today's economy that is quite troublesome. There are numerous sacrifices that must be made in order to keep your loved one safe and comfortable. Being selfish is something a caregiver doesn't even have time for.

Honesty — loyalty toward and the protection of the afflicted one's assets and best interest.
The person you are caring for has placed all the trust they possess in you. You have to preserve all their holdings the best you can. You never know what expenses will occur toward the end of this disease. Thirty-five to forty percent of elder abuse comes from some type of financial devastation.

Stay true to your heart and always follow what instincts that are deep inside. You will know what the right thing is to do. By following these five characteristics you will undoubtedly make yourself a stronger individual.
Someday, after this arduous campaign is over, you'll be able to look back and know that you have developed morally and ethically into a better person from the experience.

Although Mr. LeBlanc cared for his father, which, as we know from this website, is an entirely different emotional ball game than caring for a spouse, he is still 100% correct in his list of caregiver characteristics needed to get through the Alzheimer journey of Hell. My question is simply – is this not too much to ask of ANYONE, whether a spouse, sibling, child, or grandchild?

In my blogs, and in our discussions on the message boards, we have touched upon every point he has listed, including how much better and stronger we have become from the experience. However, he does not seem to question any of the sacrifice for those who undertake the caregiving task. I do.

Let’s examine the “endurance” and “unselfishness” sections.  I am in no way suggesting we abandon our spouses, but is it realistic to expect us to put our lives on hold, become socially isolated, and financially bankrupt for up to 20 years of our lives?   

I am having a particularly difficult time with the “compassion” section. He is asking us to be understanding and compassionate towards family members whose struggles to come to terms with the disease are causing them to be in denial. Although he does not specifically state it, I am gleaning from his words that these family members are also offering no help to the caregiver. If I have no life outside of caregiving, am driving, feeding, changing, and bathing my spouse; if I am getting no sleep because he/she paces and wanders at night, I can assure you, there will be very little compassion left for relatives who are hiding their head in the sand.

My conclusions, after having read the article thoroughly at least 3 times, is that too much is asked of caregivers. Mr. LeBlanc states right at the beginning that not everyone will be successful at caregiving. He states there should be no shame or guilt if you do not have what it takes. So what happens to the PWD (person with dementia) when the caregiver is unsuccessful?? If they are not ready for a facility, what do you do? If there are no relatives willing to step up, what do you do? If there are no finances to hire someone to handle the job in your home, what do you do? You do the job, poorly, and probably end up in the courts for neglect.

I think the article was perfectly accurate in describing the life of a caregiver. However, we are human. We have physical, mental, and emotional limits. I, for one, do not even come close to the characteristics needed for this job. Who does?

MESSAGE BOARD TOPIC: Article on Caregiver Characteristics

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