Jun 262015

Tim, diagnosed with Frontotemporal dementia in 2012, living with HIV

Working in information technology and then for many years as a part of a management team, my career was very important to me. At the end of 2009, however, I realized that I was having trouble focusing on my job, and one day after a lunchtime walk, I felt like I had lost sight in one of my eyes. Thinking it was due to stress, I didn’t tell my partner Ron. I explained it away.

In early 2010, I took a work trip to Denver. During that week I had issues typing and communicating. When I met with my boss to discuss the trip, I had trouble speaking. That’s when I decided to see a doctor. “After talking to you, I think you need to go to ER right now,” he said.  I found out that I had had a stroke, and doctors suspected that several mini- strokes had also occurred, which accounted for my vision loss.timblog

Despite having some answers, I didn’t have them all. After returning to work a couple of months later, I was still struggling to do my job, which resulted in my being demoted. In January 2012, I was laid off. Due to all of the anxiety I was experiencing, I started seeing a therapist, who suggested that I make lists of coping strategies, but I never made the connection in my head to actually complete the tasks.

While in therapy, I was also undergoing testing and not sharing the results with Ron. I would come home and say “everything is fine” very nonchalantly. Ron knew everything wasn’t. “Either you are not communicating properly or you are just not telling me something,” he said. From then on Ron accompanied me to my appointments. We learned that the results of the testing indicated that there was a problem, but no conclusive diagnosis. Ron crusaded to find out what was really going on.  Eventually, in 2012, after many tests and much anxiety, I was diagnosed with Frontotemporal dementia (FTD), which is caused by progressive cell degeneration that affects the frontal and temporal lobes of the brain.  

Ron is my everything. He is my advocate, my only support, and my protector. If it wasn’t for him, I probably would not have received a diagnosis. I don’t even realize how many times a day he helps me make decisions. He’s good at subtly guiding me, as I can get very easily lost in a task. He is always looking out for my best interest. Because of FTD, I don’t have a perception of what repercussions exist due to my actions. I can’t even imagine what my life would be if I did not have him here.

Having been HIV positive for 25+ years, I treat the diagnosis of dementia like HIV; it doesn’t define who I am or what I can do. I don’t let the dual diagnosis control my life. I present myself first – work experience, life experience – and eventually my story unfolds. When I introduced myself to Congressman Cory Booker, I said, “Something you might not know about me is that I was diagnosed with dementia in 2012.” It was amazing how his constitution changed. “I wouldn’t have known,” he replied. It changed his whole perspective.

I tell people who I speak with on Peer-to-Peer Outreach Program calls that they have to look at their diagnosis as a new adventure. (Peer-to-Peer Outreach is a program of the Alzheimer’s Association that connects newly-diagnosed individuals with others living with Alzheimer’s and other dementias via telephone in order to share their experiences.) It’s a new challenge in your life. You will find different ways to accomplish tasks and you will find talents that you never had before. I never used to be able to speak in front of people. Because of my diagnosis, I can now give a speech. I still have challenges, I still have anxiety, but I have been able to do things I couldn’t do before as well.

As a care partner, Ron has a thankless job. I don’t always acknowledge what he does for me. Some doctors have suggested that the word dementia not be used in front of me and I appreciate that Ron is so honest with me about the diagnosis. Individuals living with dementia deserve to have advocates. You need someone who will go to battle for you. Ron does that for me.

I was losing direction and I needed to find a new outlet, so Ron encouraged me to get involved with the Alzheimer’s Association. Being an Early-Stage Advisory Group (ESAG) member has allowed me to let people know that their life is not over – that life is what you make of it. If I had a tagline like the women do on the Real Housewives reality shows, mine would be: “Get to know me first. I am more than my diagnosis.”

Ron, Tim’s care partner

I knew something was wrong long before Tim received a diagnosis. As his advocate, I helped coordinate his medical team and began making plans for the future. We went to an elder care lawyer (who was very helpful) and sold our home that we spent 10 years renovating .A lot of people wait too long to plan. The sooner you do that the better.

Dementia happened to Tim much earlier than it does for most. He was hoping to work up to 15 more years, build funds for retirement and travel. We moved from the suburbs to a 55+ community, and we live a very different life here. Tim and I have attended support groups through the Alzheimer’s Association, but I have also found support in our community by connecting with other caregivers. While other community members are older and their experiences more varied, their support is still valuable. Almost all of the people that are involved in support groups and services in the community are much older than us and it’s hard to relate to one another. Prepare yourself, because as a care partner, you have to realize it will only become even more intense.

You have to seek out advice. You have to be realistic. It won’t get any better. You have to take advantage of every moment together and celebrate what you have. Your relationship will change greatly. There are times when it’s difficult, and it’s usually little things that push you over the edge. You get by, but it’s very difficult. It is very hard to see your loved one diminish in front of you. I love Tim, but he isn’t who he used to be. As a care partner, you sometimes feel like you have the weight of the world on your shoulders.

It is a heavy journey and it is a process, but you do what you can do. It’s not all gloom and doom, but it has been difficult reflecting on the past three years. Neither of us have a career anymore. We had to sell our home and settle into a new place. Amongst all that, we were working on getting Tim’s diagnosis. I lost both of my parents and Tim’s brother and father passed away – we’ve had so much happen. But we don’t give up. You have to make the best of your situation. I want other care partners and caregivers to know that they shouldn’t give up their whole identity. You have to do things for yourself. Our situation is what it is. You have to try and take in every moment you have and hold on to what you can.

As a member of the Alzheimer’s Association 2014 National Early-Stage Advisory Group (ESAG), Tim Kaufman raises awareness of the financial impact of the disease and the value of an accurate and early diagnosis. He also addresses the needs of lesbian, gay, bisexual and transgender (LGBT) individuals living with dementia. Tim and his partner Ron live in Southampton, New Jersey.

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  12 Responses to “I Am More than My Diagnosis”

  1. My husband also had FTD. He was diagnosed with dementia in 2008 and a firm diagnosis of FTD in 2010 and passed away in November 2, 2014. It was a very difficult road for him to travel, but we learned how to slow down and take each day one at a time. This disease is so out of our hands, so we prayed to be guided along this journey. When the end comes, you will welcome that he no longer suffers and is finally peaceful.

    • My husband has been diagnosed with early dementia 2013 I don't know what type but he has problems finding his words to speak ,not fluent anymore ,he is not completing things like the other day he was taking money out at automatic teller machine and punched in the numbers then walked away leaving card money and receipt in the machine . He loses a lot of things and nothing is simple anymore .i feel like I fix up one mess after another . It tests my patience and sometimes I get really stressed and show my frustration instead of being calm .i feel so guilty because it's not his fault . I hope for his sake I can change ,I want to and I have improved but it's hard sometimes .i pray that God will help me to be calm and at peace . I have been grieved and devasted with this diagnosis . Hanging on by a thread in my faith sometimes . I need Gods guidance and I would love my husband to believe in God . How did you cope

  2. Thanks Tim. This entry is in June end-of-monthPWD “Perspectives” newsletter https://paper.li/f-1408973778

    • Thanks Tim! I have worked in the Neurology field for many years and am retired. My partner of 48 years is showing signs of Alzheimer's disease. Waiting to see a Neuro-memory Dr. I am so anxious about the future. You have given me hope.

  3. Bravo to the both of you! You are a very lucky guy to have a partner standing by you. Your medical and work situation sounds almost identical to what I have been through. No partner here though. Just take things one day at a time. I try to cope by going out biking, hiking, playing tennis, and golf. I have to make sure someone is with me though, in case I forget where I'm at or what I'm doing. As a 49 year old, one of the hardest things is relating to people with a similar diagnosis who are much older. It sounds like you are doing very well.

  4. Ron, I can personally vouch for the soundness of your comment: "You have to try and take in every moment you have and hold on to what you can." My wife started developing symptoms of early onset Alzheimers disease 10 years ago but we continued to have a wonderful life together for the better part of the next 7 years!
    The last 3 years have been have been difficult. As you so aptly stated "It is very hard to see your loved one diminish in front of you." Upon reading this I felt tears well up in my eyes.
    I try to concentrate upon how fortunate we have been to enjoy sharing 42 extremely compatible yrs together. Before I go to sleep, if she's still awake I sometimes ask her if she remembers some trips we took (she loved to visit foreign countries). I believe she understands me because she gets very calm and smiles. She does the same thing when I tell her how much I love her, and seems to be trying to speak. Don't give up! There is still something to share.

  5. GOD BLESS YOU in your journey and keep a journal.

  6. Ron you are doing an amazing job. My husband has been diagnosed with FTD in May. I have notice for the last 4 years something was not right. He was tested in 2012 and they thought it was MCI. The told my husband they could not find anything and wanted him to come back in a year. This was the wrong this to say to my husband. Because in his head the doctors told him he was ok. I fought and argued with him to seek other doctors but he would not. I wasn't until he was transferred from one store to the other (within same company) did his manager suggest he seek medical help because of issues at work. After 3 years he finally was retested and that was when he was diagnosed. The doctor was extremely surprised at how much he had declined. We are currently try to fight for short term disability with his work. This insurance has the doctors diagnoses but tell me he has no disability because he can walk, stand, and lift 25 lbs. I belong to 2 support groups. It is kind of hard at these support groups because my husband is only 55 and the others in the support group have their loved ones in their late 70s or 80s. Hang in there and cherish every moment you have together.

  7. I live in the UK but find the US help much easier to relate to. Like Karen my husband began with vague symptoms and although i tried to say he has changed so much. No-one appreciates its seems that it really depends on how you are before the dementia. Leslie was highly trained academically and seemed to put his hand to anything. Even now on a good day he appears perfectly normal, if you are comparing him to the average UK 88 year old. I insisted on a scan where they found slight brain shrinkage, but he deteriorated so fast in the last two years. Two weeks ago I was devastated to be told, after a 'tick box' consultation with the psychiatrist that he has Stage 2 Alzheimers.
    All your blogs are encouraging. I sank into despair.
    I do sympathise with you all. My heart goes out to you. Karen I would have thought things were easier for you in the US – I can't get disability here because the Govt. sees my pension 'as a benefit'. This is humiliating in itself, as I paid for everything out of earnings but as it is already counted as a benefit I can't get anything extra to help with the increased costs.
    Just mentioning this because it seems that worldwide the powers that be do not see mental disability along the same lines as physical disability. Nor do they seem to realise the stress mental and physical on the Carers who not only have to shoulder all the responsibility and work of the household but neglect their own health in the process.
    We all see things in one way the same and another differently. We don't go to support groups as we both helped out for 15 years in the elderly facilities and Leslie does not see himself as 'needy' and it upsets him to be amongst 'old people'.
    I spend what time I can on pushing for better understanding of these diseases and realisation that neglect of the carer is causing fit people to be stressed and ill.
    In the meantime I shall 'hang in and cherish every moment'. Thank you all

  8. Thank you for posting your story, Ron and Tim. My wife was recently diagnosed with Primary Progressive Aphasia and has developed some symptoms of Pick's disease now. I was devastated when we first got the diagnosis and each day presents new challenges. My wife and I have been together 30 years and she is only 54. I have been trying to find some LBGT support groups. Hoping to connect with other caregivers with similar challenges.

  9. Thank you, Tim and Ron for giving hope to so many people out there suffering with FTD or their loved ones suffering from it. I really appreciate Tim, that he has not let his diagnosis become an impediment in his life. In fact, he has made both his diagnosis his strength. It surely is a very positive trend for people who may think having dementia is detrimental to their whole lives. And of course, this wouldn’t have been possible without Ron.

    What an amazing duo! Ron’s sacrifice is commendable!

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