Parenthesis

parenthesis |pəˈrenTHəsis|noun ( pl. parentheses |-ˌsēz| ) a word, clause, or sentence inserted as an explanation or afterthought into a passage that is grammatically complete without it, in writing usually marked off by curved brackets, dashes, or commas. 

Gregory has become a parenthesis.

Several years ago, when Aaron (a doctoral candidate to whom we were introduced by our massage therapist Sarah, and whose research we became part of) got to know us, he commented that he was impressed that we still functioned as a "couple." That we were in a relationship that still functioned even though Gregory's Alzheimer's was slowly changing the face of that relationship. 

More accurately, I guess that I would say we functioned with RESPECT for each other. Even though I was "in charge," handled all of our finances, made all of our decisions, took care of all the details, etc; I tried to make sure that Gregory was part of and informed of all the things I was doing. Gregory in turn deferred to me and accepted, with faith in me, my new role.

Slowly, however, he needs to be less part of the decision making process. For example in the beginning he would decide what to order from the menu when we ate out. When he couldn't decide what to order, I began to offer suggestions off the menu. Eventually I narrowed it down to: "Do you want beef or chicken?" Now I just order for him. He is always pleased with my selections and often will reply with, "Oh goodie. This looks really good."

At this point in our relationship, I make all of the decisions in our life. I let Gregory know about activities the day before and again on the day of, but usually do not go into much detail or give too much advance notice because he only forgets or gets agitated about not being able to remember what I told him. This leads to a usually failed guessing game on my part.

I often do not ask his advice because even if he has some, he is unable to communicate it. Now-a-days it sounds more like this. Instead of "What color do you think we should paint the hall?" it is "I was thinking of paining the hall the same shade of white." He will agree. Instead of "When do you want to go visit your family?" it comes out "I think we will go to Michigan to visit your family soon." He will agree. Instead of "Do you want to go to the movies?" it is "We are going to see Batman." 

I still work hard at treating Gregory with respect but the face of it has changed. Here is something I just recently noticed. In the past, I would sign a letter, or birthday card, or e-mail: Love, Gregory and Michael. Based on social convention, the person doing the writing always puts their name last.

Then I began to sign them: Michael and Gregory. Now I have begun to sign some of them: Michael (and Gregory.) I guess I have moved to this format to show that it is a communication from me, not necessary discussed with or part of a decision with Gregory. If I know that Gregory would also send love or a greeting if he could, I leave out the parenthesis: Michael and Gregory.

Interesting. It seems that Gregory has become a parenthesis, inserted as an explanation or afterthought into a passage that is grammatically complete without it. A somewhat fitting description of what our relationship has become.

What if IT happened to me?

Of course dementia can happen to anyone so yes I have thought about it. I am not sure that there is anything I could do to "prevent" it in addition to what I already do to live a healthy, active, productive life.


I have prepared our finances in a way that the next in line trustee would take control of Gregory and my personal and medical lives and decisions if I couldn't whether due to a form of dementia or something like a stroke or heart attack. 


If I began to feel dementia creeping in I hope I would recognize it, as least in the early stages, and take action. We have a large enough support group that someone would let me know if they thought I needed a "look see."


It would be very important to me then, as we did in the past for Gregory, to control all those things I can and provide for the future of those which I may not be able. Never easy but as I have written before, can't spend (waste) too much time anticipating what MIGHT be at the risk of missing the wonderful that still is.

Balance

I cannot get the balance
For this round
Of when to think for him
Or when to let him think
His own thoughts.

Managing our Finances

When asked for a survey, 

• What was it that happened that made you realize you needed to take over your loved one’s finances?
  
• What did you expect it would entail? What does it really entail?
  
• If you have been doing this for awhile now, what do you wish you knew then that you have learned now?

This is how I responded. 


I have found that over time I take on more and more of the responsibilities that I used to share with or which used to be done alone by my partner. This "taking over" has become a natural progression of being able to continue dealing with the twists and turns of Alzheimer's. My gradual "taking over" helps both of us feel less frustrated. One does what one has to do. Complaining and fretting doesn't help what is.

I am fortunate in having a well founded, over 35 year committed relationship with Gregory so we are "used to each other," and have build a high level of trust in our love for each other. He continues to be aware of what he is NOT able to do and looks to me for support, which I am able to give gracefully (most of the time.) I read on a web site that Circle of Care recently reviewed that if I am not able to be gracefully caring all of the time ... there is no question that at least I do care all of the time. He has been able to give up his grand piano, driving, cooking, and more with little or no fuss and I have been able to compensate. His quality of life and sense of self continues to be strong. From what I hear, this might be a miracle.

Running our daily financial affairs is no big deal. What was a big deal, especially for a same sex couple without the benefit of being legally married, was: 1) getting our trust in order, 2) getting our power of attorney for property and health care taken care of, 3) arranging for Gregory to receive Social Security Disability and Medicare at 55 when he was diagnosed with Early Onset Alzheimer's. It will become even more difficult when or if he needs to go on Medicaid. We had a wonderful elder care lawyer to help, the State of Illinois Department on Aging (it seems that most states have something like this,) and gratefully I am intelligent enough to figure our what we needed to do.

What do I wish I knew then that I know now? YOU CAN DO IT! The fear and depression can slow you down but YOU CAN DO IT! And there are people and organizations out there for the express purpose of helping you. Don't feel overwhelmed even though it is overwhelming. Take one bite of that elephant at a time, chew, digest  and before you know it that elephant will have turned into dinner. YOU CAN DO IT!

Expectations Are What You Expect Them To Be

When you love someone, nothing is impossible. While I am spiritual and NOT religious, I do like the quote from 1 Corinthians 13:7 "Love bears all things, believes all things, hopes all things, endures all things."

I first suspected that Gregory was having problems long before he was aware of them. Eventually we had the doctor run a number of tests (with Gregory's permission.) When we got the verdict of Alzheimer's we were almost relieved because now we understood what he had been going through and why, as well as what we could do to get on with our life.

As Gregory lost abilities, I learned to compensate. As the rules changed, I was able to figure out what the new ones were. As it became evident that there were no rules, I learned to "roll with the punches." I knew that I had to change my behavior, because he couldn't change his.

I cannot say that I ever had expectations (advance ideas) about what caregiving would entail. I just adjusted as it was needed. I chose not to think too much about what future caregiving might bring as I would rather live for today. That does not mean I don't study up on what I might expect to happen but when it gets too depressing, I put the books down.

As we needed to accomodate we accommodated. As our roles needed to change, they changed. I am fortunate that Gregory has always been so good natured and content and calm and that he has been able to hold on to those attributes even as his abilities continued and continue to dessert him. He defers to me, he trust me, he loves me and I love him.

So my expectations are only that I will continue to grow into being the best caregiver I can be, I will make sure I take care of my own health and mental well being, and I will strive to keep Gregory safe, happy, and involved, I will make the right decisions when I need to make them.

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/