The Value of Support Groups for Caregivers and Patients

Last year after I was diagnosed with FTD the Alzheimer's Association awarded me a grant so I could attend a Dementia Support Group called, "The Memory Club". The group is made up of individuals who have been diagnosed with various early onset Dementia's. I am the only person in the group with FTD - Frontotemporal Dementia.

A question was asked of me by Sharon Denny the program director of AFTD - The Association for Frontotemporal Degeneration . What is the most valuable thing I learned from Riverstone's "Memory Club".  


I took the question to the talented members of Riverstone's "Memory Club" and the upcoming list is what we thought of.


(I am truly the luckiest person in the world. As I sit here typing in Starbucks, one of the lovely barista's just came by to take my cup to give me a free refill).


Many of the answers listed below can be used in context for both support groups of both caregivers and FTD/Dementia patients.


For me, the most valuable thing I learned is number O:


0.  Find happiness and purpose in life again.

a. Everyone has a right to happiness and purpose in life. 

1.  Make subtle changes and adjustments in your routine to adjust to life with Dementia.
a. You need to learn to keep adapting to the changes made by dementia.

2.  Learning to live with Dementia in a positive way.
a. You need to keep a positive attitude  and work around all obstacles.

3.  A sense of belonging.
a. You are a part of something and feel comfortable with the people and atmosphere.

4.  Expressing our experiences to peers in an effort to minimize our problems.
a. Having others that can relate to your life and you to theres.

5.  You learn you are not alone.
a.  You might be lonely, but your not alone.

6.  Learn you can function with your crazy ways.
a. No one is perfect. Live life and enjoy. Get over things fast and move on.

7.  Life is not over, we can rebuild our lives.
a. You can have a full and wonderful life. Just different than before.

8.  Awareness of Dementia.
a. Be aware and accept the a changes in your life. You can't be happy if you keep fighting for the life you had before Dementia. You need to be aware of yourself and your life to move forward.

9.  Get a 2nd opinion,  don't necessarily trust every doctor you see because they are a doctor.
Listen to medical opinion, but don't disregard your instincts and don't think twice of seeing someone else when it comes to matters of health and wellness.

10.  A friendly, supportive, understanding environment.
a. You can breathe and relax. Better and cheaper than a psychiatrist office.

11.  We are like brother/sister.
a. You can develop new close relationships with others that understand you and you them.

12. Learn how to live, not how to die.
a. Get busy living, never give up.

13.  Dementia is a not a mental illness. Medications for mental illnesses do not necessarily work with Dementia.
a. Be extremely careful of all medications and there side effects.
b. There are no FDA approved drugs for FTD. The UCSF website has a guide to medicines for FTD.
c. Do not take Aricept for FTD.

Being diagnosed with  Dementia is a shock to the system. It's not easy being told to get ready for the end of your life.


You have a progressive terminal illness with no cure. 


You're told to make end of life plans. The only thing you can think of when leaving the doctors office is life is that I have Dementia and I'm going to die.  You are in shock and many people do not get over it. 

Caregivers and loved ones lives change drastically as well. They also have to go through the shock of there loved ones having a terminal illness. 

Support groups will help ease the pain and help both caregiver and Dementia sufferer make necessary changes in lifestyle to create a new life. 


To find a FTD support group for caregivers in your area. Check the AFTD Website for the regional coordinators. 

 The Association for Frontotemporal Dementia http://www.theaftd.org/

For caregivers of other types of Dementia's and if there is no FTD support group in your are, contact your local Alzheimer's Association.


Those diagnosed with FTD should try one of the Dementia Support Groups. They can find out where these are from the Alzheimer's Association. It was nothing short of a life changer in my case. 


Remember, you get out of it what you put into it.


It will not be the life you once knew, but it can be a life with happiness and purpose.

Dementia is not the end of life, it is just the beginning of a different type of life.


I am looking to start a FTD patient support group in Manhattan. The purpose will be to help us find happiness, purpose and to deal better with having FTD. Please contact me if you are interested.


Howard

FTD - Explaining Irrational Responses and Questions

Living daily with FTD I find myself constantly answering questions with irrational responses or asking questions that have no relevance to the topic of conversation. I'm always responding with "are you angry at me",  "Am I irritating you", "Did I so something wrong", "I did it again didn't I?". These are constant questions from someone  living with FTD. Often I'm not sure of what the person is saying or meaning. I'm not sure if they are being inquisitive, sarcastic, or critical. I have one friend who constantly tells me one thing, and then tells me he is playing devils advocate later so I never know what the hell he is trying to tell me.


People say they understand FTD and what's going on in the person's mind, but very few do. Caregivers try their hardest but it is difficult to understand how the person you are talking to sometimes understands what your saying and sometimes doesn't. It's especially difficult when you know and love the person and want to believe they understand you and you them. 


Unfortunately the world can be a difficult place with FTD being a cruel joke on one and all.


It is extremely difficult to explain that your thought process is corrupted and the effect that has on you understanding what people are saying to you. It also affects how we read facial expressions and body language.  A person can say or mean one thing and I will take it a totally different way. I constantly try and slow myself down and not answer to anyone quickly as to not misinterpret, but it's virtually impossible. When you're in a conversation and engaged with someone you need to respond to questions and comments. Circumstances are constantly changing and I find myself often without a clue of what is going on. Getting lost in the sauce is easy to do and sooner or later I will always say "What did you mean by that?" The response is usually, "Mean by what?" The person has no idea, that I have no idea, that I have no idea of what there intending to say(yes, I did say that and say that I did.) Sometimes I would say things and would be so far off base that people would just look at me and tell me I'm way off base or I have a vivid imagination. Very hurtful and frustrating for everyone.


I have been making those same comments for years now and it's simply because 1 +1 = 5. People with FTD cannot take facts and put them together to come up with a makes sense conclusion. If you say it is 75 degrees outside but will rain hard later, there is a good chance I will not take an umbrella, but will instead take a heavy trench coat.

____________________________________

A person that I'm in contact with wrote a couple of weeks ago that her husband took there children out to there Church after midnight to do landscaping. He marched back in with the kids at 6am. He explained that it was cooler at night than during the day. They do not live in the desert.


I had a remarkably similar incident.


My son Myles came to visit me in NY during July and I wanted to take him to a NY Mets baseball game. The day of the game was supposed to have a thunderstorm and possible showers. The next night game was supposed to be clear but 5 degrees warmer. 1+1=7. I took him to the game with rain because it was cooler and probably wouldn't rain that much. Made total sense to me. Guess what? Myles and I had a great time dry under the grandstand while the players never even made it out to the field it was raining so hard.


What's interesting about the two incidents is the flawed thought process that brought myself and the other man to come to the conclusion that these were good decisions. These are typical examples of things that people suffering from FTD do every day. Some people think we are crazy, but we are not. 


 Our decision process is flawed and we simply cannot put facts together to make a rational decision. 


I would do anything for my son and so would the man in the Church/landscaping story. We both love our children and try to keep intact our relationship even though it might translate into what is an irrational act. 

 It was a rainout but we were determined to have a great time no matter what and Myles and I had a blast.

I'm sure the man who took his kids on the midnight landscaping foray also had a good time with his kids.

They both turned in harmless adventures that will be imbedded as harmless FTD adventures.

Film about Howard Glick for AFTD

Hi Everyone,


I want to thank everyone for there support. This blog was started in July with the intention of advocating for those with FTD- Frontotemporal Degeneration. The purpose was to give insight and increase awareness of FTD to caregivers and the medical community by articulating my first person experience. I didn't realize at the time awareness of FTD was built upon family, caregiver, and medical community experience. Virtually no one diagnosed and living the disease communicated what it is like to live with it.


For those new to the blog, my bvFTD symptoms started manifesting themselves in 2004 with the first SPECT scan showing it in 2006 and further progression on a PET scan in 2010. I was misdiagnosed as bipolar for 6  1/2 years.


This effort by me to articulate what life with bvFTD is like has been received successfully with my involvement now in numerous online forums/support groups etc. worldwide for FTD/Dementia. Between my blog and email communications I have received over 4,500 correspondences since July. I also set up a Facebook, Twitter, and Linked-in accounts and I have absolutely no idea how many correspondences I've had with those.


Simply put, I eat and breathe my efforts 7 days a week, every moment possible. I am relentless in my efforts to further public awareness and help others. 


This is my life and I love every minute of it. I never sleep more than 4 hours a night. My laptop is never more than a foot away from me and in the absence of a woman in my life sleeps right next to me. It even has a special cuddling and snoring app. Right now it's 3am and I'm typing away. Though I am exhausted and am aware every fleeting moment of the symptoms of FTD, I have decided I am going to ignore FTD and press forward to create for myself a happy productive life. FTD is just going to learn to coexist with a Howard Glick that will manage the symptoms. 

FTD can hang out, but it's not going to rule my life.

In an effort to help me in my efforts to increase awareness of FTD, I was contacted by Sharon Denny of AFTD and Joe Becker of Thinkfilm Inc. about making a film of my experiences  dealing with being misdiagnosed, diagnosed, symptoms, and daily challenges with bvFTD.

I am currently filming my thoughts and experiences with the intention of making a valuable contribution to the field of FTD. The filming is being done with the help of an intern, Lena Pressman (NYC reporter Gabe Pressman's granddaughter).

The object of being a voice of those with FTD is to help improve awareness, inspire others with FTD to get back on their feet, help give insight and understanding to caregivers about loved ones, professional education, and the development of better resources that might one day lead to a cure.

Below are just a smattering of responses I receive on a daily basis which help keep me motivated moment by moment with my struggle with FTD.

Thank you again. Truly this has been so helpful for me. I'm now sobbing and can no longer read the screen, but we have to get it out!!!! :) I am so thankful for all of the wonderful memories I have and also thankful he is not suffering. Keep on keeping on...Take care!

Your blog is so eye-opening. Thank you much for sharing your story, as it is very helpful to those of us who love someone with dementia--no matter what type. Take care and God bless.

I'm catching up on your blog as we speak! :) Your posts sound so familiar to me...similiar to what we have been through with my dad!!! FTD does not define you guys and never will and there are people out there who care!!!!!! I just want you to know that. I care!!!

Hi Howard - I found your blog yesterday and started following it. My mom has FTD (She's 57, and has been ill for about seven years now). I found your blog to be wonderfully insightful. My mom doesn't really discuss or acknowledge her condition and is in a later stage - she is suffering some major memory loss already. Anyways I wanted to thank you for what you're doing. So many times I have tried to talk to her and understand what she is going through but it never brings me any answers. My husband is in the Marine Corps, and we are currently living in Japan, while my mother is living in California and my wonderful grandmother is her sole caregiver. I feel so detached from the situation that it makes me crazy! Your blog helps me feel a little less in the dark.

Hello Howard,

My apologies for the time it has taken to get back to you – I was away on vacation for two weeks and am just back as of yesterday!

Thank you for taking the time to write to me. I am happy to discover your blog. I work with people living with dementia at different stages, and am always so happy to hear people speaking out about their experience. Our groups are always happy to find out about new resources as well.

Thank you for getting in touch! Also, you say you love Montreal, I love New York (doesn’t everyone?).

early dementia said...

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.

Thank you Howard Glick. You are the most powerful and empowering person know. I am motivated and can move mountains because of your example. Like you I passionately work to empower the lives of others. Thank you Howard! !

Your blog is informative, inspirational, insightful and imbued with a sense of humor, kudos to you! Keep on keepin' and blogging on! 

What a brilliant way of taking arguably the most devastating moment of your life, and in one year turning it into something unimaginable.

"Your article was extremely moving and educational to me.. someone who is just learning what you are experiencing.

Anyway, I'm really impressed with the honesty and candor (humor and grace) you express on your blog and I'm looking forward to following your life adventure. 

Never give up your mission, Howard!

 - Minds i said...

Thanks Howard, this is a wonderful blog. It is communicating to the world what I already know, that your journey has been remarkable, the admiration and respect I have for you is equally remarkable. The potential of this blog is for caregivers, the medical and legal communities and people managing dementia; it's already a contribution.

You are definitely making a difference.

Your honesty and insights

are remarkable.  Your drive to spin gold from straw (seems like there should

be a more "ironical" metaphor) and help others is a gift.

i am reading your blog in its entirety and i am enjoying it. your candor and enthusiasm for life is nothing you should cry about! 

Your ability to educate and touch each and every one of us with your candor and your honesty is a gift. And while facing  adversity, each gift you give is immense.

This is just so so great.

How wonderful, how great.

Thank you very much, Howard.  My friend was just diagnosed with Pick's.  I sent your Blog to her parents and her mom is very interested in Blogging.  

You are inspiring!  Thanks so much!

Thank you so much for this.  You are an amazing and courageous person!  My father had FTD and passed away 14 years ago at age 58.  I was a caregiver for him.  I always wondered what he thought about living with his illness.  He once said it was sad, but then lived life to the fullest and we made every day count.  You are making every day count and I honor your courage and outlook to do the best possible with what life gives us.  For 6 years I have been facilitating a support group for adult children of a parent with young onset dementia.  I am passing along your blogsite to them  Thank you again.

All the best,

Gary Radin - Author "What if it's not Alzheimer's"

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I went from making a 100k+ a year to now being disabled with $1.45 a day in food stamps.

I now know the true meaning of purpose in life. I am living a dream few experience by making a profound difference in peoples lives. I will never take for granted one moment in this lifetime. There is no question I appreciate being able to do such meaningful work. As long as I'm breathing, I will continue on this path.

The only thing missing is the ability to spend more time with my children who reside in Seattle and the possibility of finding a partner in life.

Howard Glick