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Posted: June 28, 2004

Practical Caregiving

Nancy Reagan as Caregiver (Part 2): A Differing View

I seem to have struck a nerve, as well as some harmonious chords, with my column on Nancy Reagan caring for our 40th President during his decade-long battle with Alzheimer?s disease. One thing was clear about the mail I got: feelings were strong on both sides of the equation.

Perhaps one of the most important letters I received was from Carol L. in New York, who made a case for not shining too much light on Nancy Reagan as caregiver, lest it not do justice to all of us who don?t share the resources of the former First Lady to care for her ailing spouse.

Fair enough, as I think about it, so let?s take a look at another view of the situation portrayed in my June 14 column, ?An Open Letter to Nancy Reagan, Caregiver.?

As I considered Carol?s comments, I first turned to Chris Pederson, founder and publisher of this website as well as The Caregiver?s Home Companion and The Caregiver?s Hotline newsletters. I asked him for his reaction both to my column and Carol?s response. This is what he told me:

?The writer speaks eloquently, and has a different point of view. However, she draws conclusions regarding your (and our) intent that are not accurate -- we know well the pain and anguish of everyday caregivers and do everything we can to address their needs. That's why we're here.

?However, at the same time, there is absolutely nothing wrong with pointing out a very public situation with a very public person (or couple) which can stand as an inspiration for those same caregivers who do not have the same opportunities and privilege as Nancy Reagan, and therefore can and do take solace in someone else experiencing their pain, if not to the same degree.?

I think that sums up not only the institutional view of this website and its publications, but it also lays the comparative foundation to share Carol?s views with you ? as well as my reply to her. Don?t forget to tell me what you think.

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Dear Jean:

While I respect your deeply felt reflections about Nancy Reagan as a role model and your own experience with your mother, I am concerned that your column, like so much I read about caregiving, is as likely to instill and foster guilt as it is to acknowledge the realities of caregiving.

Not everyone can ? or should ? emulate Nancy Reagan. Most caregivers have jobs, and need the income. They have other people, including children, to take care of. They do not have live-in help. They do not have the knowledge that at the end ? whenever that comes -- there will be a national outpouring of support and grief.

While we do not know about President Reagan?s condition toward the end, it seems to have been manageable at home. Many people with AD are combative, hostile, paranoid, and violent. To suggest that it is somehow a failure to ?turn over the care to others? demeans those whose only way to survive is to do just that. It does not mean they love the person less or feel the loss any more deeply.

I have cared at home for my husband who suffered severe brain damage in an automobile accident almost 15 years ago. He is quadriplegic and has many of the same problems as someone with AD. I do not have live-in help, although I do have day workers so that I can continue to support us financially. I would be horrified if someone held me up as a role model.

Carol L., New York, New York


Dear Carol:

Thank you for your email. The purpose of CaregiversHome.com is to help everyone who is taking care of their loved one, whether their loved one is in a nursing home or living in a home setting. The degree of help needed and the type of help needed varies with each individual and family.

I took care of my parents at home without a silver spoon in my mouth. I know firsthand what it is to take care of someone with Alzheimer?s disease because Mom had it. Mom did become combative at times, but it was when she didn?t understand what I was doing or trying to get her to do (like get out of bed and onto the commode).

I found that if I took more time and was more gentle, she would eventually come around without fighting too much. When Mom felt loved and secure, she acted like a sweet little child. When she was angry, she acted like an angry little child throwing a temper tantrum. She didn?t know much and didn?t understand much ? just like a little child. The only difference was that her body was old and she was forgetting things instead of learning things. I wish everyone could spend enough time with their loved one that has Alzheimer?s disease to see that. All that most people see is an old person who doesn?t know anything.

Dad kept having strokes. I changed my parents diapers, washed them, fed them and I did all the other things needed. The help I received was very limited because I needed the government to pay for it. I had to get a mortgage on the house to keep taking care of them at home. I will be making those payments for many years.

Nancy Reagan became a role model because Ronald had been President of the United States and she was his wife. Their love and devotion to each other was well known before he announced that he had Alzheimer?s disease.

She felt the pain all family caregivers experience, and we can all relate to her and feel her pain. We need someone to stand up for us, and we need for someone to push very hard to find a cure for Alzheimer?s disease. We need Nancy Reagan to do that. In doing so, she became one of us.

I think you will find that I try to cover all sides of family caregiving, but it is impossible to do that in each column. It takes many columns with each column covering one issue.

I admire you for taking care of your husband the way you do. That is such a struggle, both emotionally and physically. We all look to other caregivers to encourage us, and just knowing that you are taking care of your husband like you are will encourage others. That does not mean you are a role model. It means you are encouraging others. I wish you the best of luck.

© 2004 Pederson Publishing, Inc. All Rights Reserved.
Commercial use, redistribution or other forms of reuse of this information is strictly prohibited without the prior written permission of Pederson Publishing.

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Please send me your questions, comments and issues regarding the practical side of caregiving at ASKJEAN@caregivershome.com, and remember to take advantage of our professionals and experts in the Ask an Expert section of our website. You'll find it in the left column on our homepage.

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