Lessons Learned: Letting Friends and Family Know

Don with his wife Cheryl.

This is my third post describing the journey with my wife Cheryl. In a period of 42 months, this insidious disease progressed from mild stage early onset Alzheimer??????s to the severe profound stage she is experiencing today.

After the initial diagnosis, Cheryl continued to function pretty normally. The doctors prescribed 10 mg of Aricept (the most frequently used drug to treat mild to moderate dementia caused by Alzheimer??????s disease) in hopes it would slow the progress of the disease.

At this point there were enough behavioral changes in Cheryl that I felt the need to talk with our immediate family and close friends regarding her condition.????? And frankly, I really needed the support. I?????wasn’t,????? however, ready to tell others. ?????There was and still is such a stigma attached to this disease. ?????After all,?????most people view Alzheimer??????s as an old persons?????? disease.????? Cheryl was only 57.

Over time, Cheryl??????s behavior became increasingly strange but most of it was exhibited at home so we?????didn’t?????have to explain it to others.????? Looking back, some of it was quite humorous, including the time she was going to bake chicken.????? We have two ovens in our home and Cheryl lit one oven to cook the chicken but put the chicken in the other one.????? I came home expecting the smell of baked chicken to fill the kitchen but was surprised to find none.????? Other behaviors were mostly harmless but concerning.????? She would, for example, occasionally leave the refrigerator door open or the water running in the sink.

As the disease progressed, there were behavioral changes in public that sometimes needed to be explained to others.????? On more than one occasion, Cheryl would go shopping and come home without her purse or groceries.????? She once accused someone at the store of stealing her purse.????? After returning to the store, the management returned the purse and explained that she had forgotten what aisle her cart was on so she simply got into the car and drove home.????? She also started to talk to strangers in the stores.????? This was very unusual for Cheryl because she was a somewhat private, quiet person.????? Fortunately the comments were generally nice and well meaning.????? She would go up to someone and say ??????My you look very pretty today,?????? to which the startled person would say, ??????Thank you.???????????????? Occasionally, however, she might say something hurtful in earshot of the person she was referring.

It now became apparent we needed to let other people know about Cheryl??????s condition, not only for social reasons, but for her well-being.

Early on, Cheryl could fly from Houston to Phoenix to visit her mother.????? We always booked a flight with her sitting in seat 1C so she would know exactly where to go.????? She was able to make her way to the gate, as well as to the baggage claim by herself.????? As time progressed, the situation changed and we had to escort her to the gate and get her early boarding permission.????? I got her a special pass describing her condition so the agents would know the situation and be prepared to help her.????? The last few times Cheryl flew, either her sister or I would have to accompany her the whole way.

As a result, 7 or 8 months after Cheryl??????s diagnosis, we started telling others about her condition.????? I was apprehensive at first because I?????wasn’t?????sure how people would respond. To my surprise, I found that after opening up to them we would often become engaged in conversations about their friends or loved ones who also had Alzheimer??????s disease.????? This was very comforting to me and often gave me an opportunity to learn how others dealt with the disease.

Another common response from people was to say, ??????If there??????s anything I can do to help, please call me.??????????? At first, I?????didn’t?????know how to respond to their offers of help. Someone (I think it was my minister whose mother suffered thought the torments of dementia), shared his response to this type of positive statements: ??????I appreciate that and please know if you are offering assistance, I intend to take you up on it.??????????? In this fashion, I was able to let people know I was open to accepting help, as well as fully expecting to need help in the future.

Alzheimer??????s disease touches more people than you may imagine.????? Do not hide the disease from others – there is no shame in the condition. ?????By letting others know your situation you can find people that have traveled the path before and can advise you on what to expect.????? Finally, by talking about the condition of your loved one, you will most likely find people who really are willing to help.????? Remember, as time goes on, you will welcome all of the help you can get.?????

How do I let family and friends know what is happening? http://www.alz.org/national/documents/topicsheet_telldiagnosis.pdf

Asking for help, and not being afraid to accept it. http://www.alz.org/texas/in_my_community_support.asp


-Written by Don Baird as part of our ??????Lessons Learned?????? blog series. Be on the lookout for more wisdom and lessons learned from Don in the coming weeks and months.

AlzTex Admin

The Alzheimer's Association Houston & Southeast Texas Chapter (www.alz.org/texas) consists of families, caregivers, scientists, health professionals, and concerned citizens who are committed to finding a cure for Alzheimer's Disease and to easing the burden of Alzheimer's Disease and related disorders on patients and their families and loved ones.