Friday, August 12, 2011

Depression and Dementia

Most people that have dementia have had a normal life with employment, family, joy, happiness, loss and sorrow. When your diagnosed with dementia, your health and life can only go in one direction. Your whole life is turned upside down. Change is difficult but possible. The fact is you need to take your life into your hands immediately and make decisions and choices to find a way to be happy. Everyone has a right to be happy.

Depression is the number one enemy for people with dementia.

Pretend you are reading this next line with a Bob Marley, Jamaican accent.......
"I don't doo dee depression 'ting mon"!

Having dementia is a great excuse for allowing yourself to be depressed. On the flip side, since I have dementia, I can accurately state that I forgot how to be depressed :).

No matter which way you look at it, depression is not allowed into my world! Sorry, but I don't have time or patience to be depressed and it is not an option.

As far as I'm concerned depression is not allowed into my life and I will institute immediate changes whenever I feel that pesky parasite disrupting my quest for a peaceful, happy existence. When I write that depression is a pesky parasite it's because depression constantly tries to suck the life out of existence and I believe that people can combat depression with a mindset instead of pharmaceutical cocktails. I believe this to be true for people with dementia and people without dementia. Unfortunately, many psychiatrists have become just dispensers for pharmaceutical companies and society has come to believe there is a magic pill for everything.

Dementia is extremely difficult to treat with drugs. Chemical and structural changes slowly destroy the brain. It is difficult to administer drugs to a constantly changing condition. It's the difference between shooting an arrow at a stationary target or trying to shoot an arrow at a rabbit that's constantly changing direction and speed. Pharmacutical options can often be somewhat effective but side effects can be equally disturbing. Drugs will pacify your mind into living an illusion that may or may not work for you. People with dementia experience a mindset that like that of a running rabbit, it's constantly changing direction and hard to pin down with a single drug. However, it's possible to incorporate subtle changes to routines and activities to keep depression at bay, much more effectively than with drugs.  In fact, life is a constant flow and if we stagnate we will start to deteriorate, but if we keep moving we allow fresh new things to constantly enter our lives. This applies whether you have dementia or not.  Change is inevitable with dementia. Every facet of our life will be turned upside down. Work, family, driving, friendships, hobbies will change.

If we stagnate then a pesky parasitic invasion will take place and be allowed to win.  It is imperative to constantly trying new things and activities. You will find a renewed life filled with purpose and happiness, but you will have to put in the effort to make it happen.

Let me tell you about the last 12 months. I might have a reason or two to be depressed. I will also explain  what changes I instituted in my life during the way not only to keep from being depressed, but to keep my sanity.

May 2010 - I am admitted into NY Cornell hospital. Doctors begin to titrate me off all the medications I am on for being bipolar. I have been on a combination of pharmaceutical cocktails for 6 years. The doctors realize there is another underlying problem and order a full battery of testing done. I go through severe withdrawal symptoms from Ativan etc. I spend the next 6 weeks in the hospital.
June 2010  -My partner, soulmate and love of my life split up after 6 1/2 years. This was coming for a long time not only because of my illness, but other factors as well. My heart was shattered.
One of my doctors, (Psychiatrist) tells me the PET scan of my brain revealed an abnormality. She refuses to tell me what it is and tells me I need to wait 2 weeks for all the neuropsychological testing to be completed.

So here I am in a hospital with no family, going through withdrawal symptoms from these horrible drugs, my stepfather of 37 years dies,  my soulmate splits up with me, I'm told I have brain damage and the doctor refuses not only to tell me what it is, but tells me I have to wait at least two weeks to find out. I did put in a complaint with her supervisor about her lack of people skills. I did have many friends visit me at the hospital and help me keep my sanity.

Two weeks later still in the hospital we have a meeting with psychiatrists, the neuropsychological team, social worker, and my friends. They tell me I have this rare form of dementia that is incurable. I ask if they are 100% sure. They tell me only an autopsy can give 100% conclusive evidence. I ask them if we can wait a while on the autopsy. I am also informed that upon leaving the hospital I would need immediate neurological care, can never work again, need to put my affairs in order (power of attorney, medical proxy, a will), driving would soon not be possible, need home health care and need to join a group and get psychological help to deal with my dementia.

Is this depressing? Nah, we haven't even got started yet. Okay, you ready for some really juicy depressing stories? Sorry, we are not going there. Just like misery likes company and violence permeates violence, continually ruminating and discussing depressing things just creates and spreads depression.

Support Groups
Anybody that knows me knows that I am a very private person and there is no way I am going to discuss my life and issues with a group of total strangers. I have been on my own since I was 15 years old and just like I have tackled many obstacles in my life alone this was not going to be any different. There was no way I would even consider joining  a support group.

With that precedent being established the single most important thing you can do is get into a support group. Dementia is a life altering disease and to survive you need to make life altering decisions. Just like you had no choice in getting dementia, you have no choice in joining a support group. If you cannot find a support group there are now on line support groups and forums. I have joined the Association for Frontotemporal Degeneration's online support group   Finding and getting into a support group is probably the single most important thing that a person diagnosed with dementia needs to do. There is no way you can go about it alone or with friends and family. The same thing holds true about making subtle changes in your life not only to survive, but be happy.

A typical support group is with people that have different types of dementia but similar issues. Groups meet during the day and vary on the amount of time they meet per week or per month. The support group I belong to is called, "Riverstone Memory Club" and is located in Riverstone senior citizen center. There is no question that Riverstone gave me the tools necessary to make the drastic changes to once again have a happy, purposeful and meaningful life.

Being financially decimated by 6 years of being misdiagnosed, I had no money to join the support group in my area. Luckily and thoughtfully, the Alzheimer's Association gave me a grant so I could join the group.

Riverstone's Memory club consists or 12 members and it meets twice a week at a senior citizen center. Most of the people are like me with early to middle stage dementia. All of us have various types of dementia but all of us have the same common bond of having to deal with a progressive disease that virtually nobody on the outside has can actually understand. The group meets from 10:00 -2:00pm. I normally leave about 11:30am because my condition exhausts me easily and I need to rest.
Each week we discuss things like depression, isolation, nutrition and medical care. Our fearless leader is Carmen, a dynamic intelligent loving program director. When Carmen is is the room the energy level is drastically increased. There is also at least 1-2 social workers/interns in our group. We also discuss current events, do brain power exercises, dancing and field trips. We also have the most capable caseworker/social worker I have ever met. Milagros has helped me get home health care and medicaid after I was rejected 6 times. She also works tirelessly helping us with financials, legal and medical related issues. I could go on and on about Milagros, but I won't out of fear someone will steal her away from Riverstone. Told you I was self centered and selfish.  Milagros is a true angel impersonating herself as a lowly human.
Each of us are trying to rebuild our lives. Each of us are having similar problems we discuss. The members of memory club are a tight group and we speak honestly with each other. One of the members left the country to live his life with family abroad. After a few months he unexpectedly moved back. We were the only ones that could understand what he was going through on a day to day basis. Even though his family was loving, the only people that really understand him are us. I personally am glad he returned. I missed him and am honored to have him as my friend.They are some of the nicest people I have met. I am the only one there with Frontotemporal dementia. I expend most of my energy quickly by passionately discussing whatever topic is at hand. I do curse and say inappropriate things, but they understand I can't help myself. My disease is a hodgepodge of everything. I am always in the discussions because FTD effects my memory, relationships, behavior and every facet of life. There has only been one issue which I don't really need to discuss. I don't have any close family so I don't need to deal with the caregiver/family issues.  I am my own caregiver, meaning all decisions at this point are made by me. I do have a lifelong friend as Power of Attorney and Medical Proxy to take over in the future when the situation warrants.

Right now I do not have any time to even think about being depressed. Since I started this blog I have been totally overwhelmed with the response of people and the impact they say that it's having on there lives. Besides the blog, I have been doing other work to also help others with dementia and have found that this is turn is having a domino effect on many different people. I started it to help people with dementia and try to find purpose in my life again. Now it has turned into a mission.

I have had been approached by The Association for Frontotemporal Degeneration and Joseph Becker of Thinkfilm Inc. about making a film about my life and accomplishments with FTD.    Thinkfilm Inc. has produced hundreds of movie, TV, and corporate projects. It is also respected for it's work on the Emmy Award-Winning series The West Wing and HBO's K-Street.

I was contacted yesterday and told they are moving forward. 

How Fun is That! Move over Martin Sheen.

My life is extremely difficult and complex, but right now I am the happiest I've been in years!


  1. Howard this was a brilliant article. Thank you for being so enlightening and creating such a safe space for those experiencing dementia themselves or by a close person in their lives. People will benefit from this and become more accepting and understanding in light of what you share.

  2. Hi Howard! You are like a ray of sunshine on a cloudy day! My 71 y.o. mom has FTD. It was diagnosed about 3 years ago. And selfishly as the mom of two young kids, I worry about the chance of getting it myself. You have shown me in such a short time how fulfilling your life can be and the importance of staying engaged and giving back and it is inspiring. It will help me help her. I look forward to following your blog! You rock!


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