Living Life When the Diagnosis is Alzheimer’s

At the Alzheimer’s Association we often hear from families that their first reaction after a diagnosis is one of relief, because now they finally know what they are dealing with. However, what follows shortly after is a profound sense of loss at what’s to come as the disease progresses.

What many people don’t understand is that while this disease steals so much of the person known and loved by friends and family, changes can happen relatively slowly. Speech, for instance, begins to deteriorate with a person initially having trouble finding nouns and eventually, they may be unable to put sentences together.  Following step-by-step instructions or a recipe may get increasingly difficult. Balance may be impacted so falling down and dropping and spilling things may occur more often. In addition, the ability to use good judgment to make decisions may begin to decrease. That doesn’t mean life can’t be enjoyed, or trips can’t be taken or new adventures can’t be planned. Simple adjustments may just need to be made to the way you’ve always done things.

While the symptoms of Alzheimer's disease are progressive, there is still a great deal of life to live after a diagnosis. What activities do you or a loved one continue to enjoy?
While the symptoms of Alzheimer’s disease are progressive, there is still a great deal of life to live after a diagnosis.

One man, who thoroughly enjoyed cooking in his beautifully-equipped kitchen, enlisted his wife’s help. They removed all the sharp knives, labeled drawers and moved things around so he could easily find what he needed. Then they simplified recipes and used the ones still most familiar to him so he could continue doing what he loved. Another couple who loved to dance was worried the wife’s balance problems would mean they had to stop. In fact, her dancing feet remembered all the right steps.  And yet another family switched to croquet instead of golf and now the grandchildren get out on the course with grandpa, giving them a wonderful new way to play and interact together.

Alzheimer’s is a fatal disease but it doesn’t have to bring life to a screeching halt. You can still do what you enjoy, maybe just a little differently. In fact slowing things down a bit and allowing additional time for an activity creates a more comfortable and enjoyable environment for someone with dementia . Figure out what kinds of activities are available in your area and adapt them when you can. If you enjoy visiting local museums, find out if there are hours when the crowds are smaller and whether there are docents who are trained for groups with special needs. The Denver Art Museum has a program specifically for those with dementia called Art and About that is coordinated with the Alzheimer’s Association.  Tours are offered each time a new exhibit comes to town. Walking trails designed for the sight impaired offer a unique way to follow guided walkways when balance and direction are issues for a friend or family member with dementia. If you’ve always loved to camp, try an RV instead of a tent.  A pop up camper or RV makes things easier on the care partner. More time can be spent enjoying the out of doors than on the set up, cooking and cleaning up involved with tent camping. If gardening is a special hobby, create a special bin for equipment and help mom find it each time she wants to putter with her roses. And try large-print playing cards to keep dad winning at the Bridge table. Keeping your friend or loved one busy, active, engaged and socializing may mean the disease progresses just a little bit slower. Regardless of the activity or the hobby, the real benefit is that by looking for ways to keep someone you love doing what they love, you have been given the gift of time with them to treasure.

To learn about the 10 Warning Signs of Alzheimer’s or for ways to keep a loved one active and content go to alz.org/co or call 800.272.3900

What activities do you or a loved one continue to enjoy?
What activities do you or a loved one continue to enjoy?

Even A Rocket Scientist Can Be at Risk for Alzheimer’s

I retired from Mission Analysis and Design (MAD scientist) 11 years ago, having worked a diverse mission set, including Apollo, Comet Sample Return, Mars exploration and classified projects (if I told you, I’d have to kill you).  One of my favorite movies is “Dr.Strangelove”.

My symptoms were first noticed by my wife about 15 years ago, which started a search for answers.  About 3 years ago, I was diagnosed with Early Stage Alzheimer’s, soon followed with a diagnosis of the behavioral variation of Frontal Temporal lobe Degeneration, or bvFTD.

I believe FTD is the more correct diagnosis, but am attending the monthly Alzheimer’s Early Stage patient support group since my diagnoses.  I encourage anyone who has dementia to attend this or any other support group.  It is a great way to share experiences in a safe environment.  You would be surprised at how many symptoms you have in common with others.

My dementia has noticeably increased over the last couple of years.  Memory is a challenge, as is math, including simple arithmetic.  Verbal communication skills and comprehension have also significantly declined.

 Difficulty completing familiar tasks can be a sign of Alzheimer's disease.
Difficulty completing familiar tasks can be a sign of Alzheimer’s disease.

The scientist in me can observe these things in a detached and studious way (a defense mechanism?) which helps, plus being a naturally low key person with a sense of humor.  Either that or my brain has reduced my ability to feel and/or consciously express things.  Probably some combination of all the above.

I have done some consulting for NASA, my last job ending in early 2012.  But it is clear that I can no longer contribute as I once did.  It was fun, and paid well, but all good things come to an end.

My motto is as it always has been, to love and appreciate my wife, to adapt to cognitive decline as best as possible, and to enjoy life as much as possible.

-Phil