Valentine's Day

Ouch. This one was hard. You know how some people say, "If you have to be reminded it doesn't count?" Well I have decided that it does count. For Valentine's Day I bought Gregory a beautiful satin heart filled with Godiva chocolates. I didn't want him to feel badly that I remembered him for Valentine's Day and that he didn't remember me. Also I wanted to be remembered so I began to remind him a week early. "You have seven days to get me something for Valentine's Day." 6 ... 5 ... 4 ...  3... etc.

Today, he went out for his usual afternoon walk and without my reminding he stopped at the Barnes and Nobel and bought me a Valentine's Day Card (at least I think that is what he got, I will not know for sure until Monday.) I suggested he sign it and we could put it on the counter until Monday. He did not know what I meant. "It has been such a long time since I got anyone a card!" Then he got overwhelmed and began crying at not knowing what to do. While he sat on the bench, I held his head in my arms and we rocked together. When he calmed down we set about accomplishing this difficult adventure together.

He kept trying to take the card out of its bag but I explained, "I don't want to see it until Valentine's Day." I explained that one puts the name of the person on the envelope and writes a message inside the card. Based on the look on his face, I was not sure if he knew any of the words or concepts. I waited patiently while he did some heavy thinking, "I think I just want what's written inside." Maybe he did understand what I had said.

That was good enough for me so I sat him down at my computer desk, gave him a red pen, reached into the bag without looking (saying "I'm not looking.")  and gave him the envelope on which to write my name.

"This is going to be hard," he said so I took a post-it note and wrote my name on it. With some coaching he was 80% able to copy my name from the post-it onto the envelope. Next I opened the card (still not looking but with a little peeking so I could see where he should sign his name and pointed. This time I wrote his name on a post-it so he could copy. It was more difficult for him copying his own name.

Finally we were finished, he sealed the envelope (with my prompting) and we put it on the counter with my gift for him to wait until Monday. We will go out for dinner and then after watching a movie at home I am making Fudge Brownie Volcanoes (the kind you warm up in the microwave so the center fudge melts and runs on cutting) with Ice Cream. It will be good.

Frontotemporal Dementias

I have included this article because much of it speaks to the type of dementia with which Gregory is dealing. I have highlighted the parts that lead me to believe this and crossed out the parts that do not apply to Gregory.

Taken from "Perspectives: A Newsletter for People With Alzheimer's or a Related Disorder." Lisa Snyder, LCSW UCSD Shiley-Marcos Alzheimer’s Research Center 9500 Gilman Drive – 0948 La Jolla, CA 92093 Phone: 858-622-5800 Fax: 858-622-1012 email: lsnyder@ucsd.edu Click here to go to site.

Frontotemporal dementia (FTD), also known as frontotemporal lobar degeneration (FTLD), usually develops in individuals under the age of 65, the most common cause for young-onset dementia, and likely accounts for 10-20% of all dementia cases. Unlike Alzheimer’s that begins in areas of the brain responsible for memory, FTD damages the frontal and/or temporal regions of the brain that are associated with language, emotions, judgment, movement, and the abilities needed to complete complex tasks that require multiple steps.

There are many subtypes of Frontotempo-ral dementia that can affect behavior (behavioral variant FTD) and language (primary progressive aphasia, progressive non-fluent aphasia, or semantic dementia). Other more rare forms of frontotemporal disorders primarily affect movement (progressive supranuclear palsy, for example). People with all forms of FTD may also have some slowness or rigidity in their movements or a tremor similar to Parkinson’s disease.

Individuals with behavioral variant FTD can have very disruptive changes in social behavior and personality and may have little insight into these problems. These symptoms can be very challenging and they can struggle to function in social situations. Younger caregivers often have is difficulty managing these challenges at home especially with job commitments.

People who have FTD in the form of aphasia are unable to find the right words to communicate effectively and eventually are unable to speak, while people with semantic dementia tend to lose ability to understand the meaning of words and may not comprehend simple words. It may also be difficult for these individuals to recognize familiar people or objects.

Many people with FTD who have these language difficulties retain other thinking abilities and may try to develop ways to manage their communication challenges. Researchers at the University of California, San Francisco, have found that some individuals with semantic dementia can have considerable non-verbal creative abilities, including painting. 

In an article published in Alzheimer’s New Zealand’s, Alzheimer’s News, Graham, diagnosed with semantic dementia at age 59, states, “Dementia is like life: it never goes down a straight path for an individual of a family. I am currently following twists which were not planned for my future. It has been an in- teresting and challenging change.”

Since FTD can include a complex set of symptoms that vary considerably from person-to-person, strategies for managing the condition may vary and it is important to seek help from professionals and peers who are familiar with this dementia.

For more information on FTD, contact the Association for Frontotemporal Demen- tias on their toll-free help line at 866-507- 7222 or visit them online at their website: http://www.ftd-picks.org/

Both Sides of the Coin

A person who IS NOT afflicted by Alzheimer's Disease knows that they don't know, remembers that they forgot, understands that they are confused. He can use other words in place of the one forgotten, explain the function or use of the forgotten word, use metaphor or give you a definition of the missing word. He can "talk around" the missing idea. He can say things like, "I can't do this." or "Help me with this please." or "I'm stuck here." or "Give me a minute."

Most often one can do what I call an "Apple Find," like on the computer, wait a few seconds or minutes, or even later that night or the next day, and eventually the brain is able to search and retrieve. Somehow connections still exist and communication, in some form or another, can take place.

A person who IS afflicted by Alzheimer's Disease gets stuck, or lost, or frustrated, or angry. He cannot explain away the difficulty, give you a general idea of what he is trying to say, and sometimes does not realize that he could take you by the hand and SHOW you what he is trying to communicate.

Most often he stares into the distance trying to think, to remember, but the harder he tries the further the idea retreats. Eventually the retrieval not only gets harder but the thought he was trying to retrieve disappears and all is lost.

Frustrating for everyone involved! Sometimes with Gregory, I intuitively know what he is trying to say and after a short wait to give him the chance to come up with the word, I will ask, "Were you trying to ask about ....?"

Usually I can figure it out and both of us are able to avoid frustration. It is getting harder and harder to do this. Some times he just says, "Oh I give up" and he is OK with that. Sometimes I allow, "Oh just forget about it. We'll figure it out later." The irony is that he did just forget it and usually later never comes.