In My Own Words

In My Own Words post page

By Online Dementia JournalJuly 16th, 2020

In My Own Words


by Anne Fargusson,

PAC Core Team Member

I was on Facebook the other day looking at a site called, Ask the FTDers. This site is meant for caregivers to ask people with frontotemporal dementia anything that might be helpful in caring for their loved one.

Usually the caregivers ask very important, poignant questions. The other day, someone wanted to know if their loved one actually cared about all the things they were doing for them. It is not unusual for people with FTD to have a flat affect and therefore no real reaction. Having said this, I was starting to feel uneasy and somewhat annoyed. I was reminded that there are several sites for caregivers including books and other publications, but very little is written about how the person with this disease feels.

I was diagnosed with FTD at age 48 and I am now 62. I was an RN and loved my job, but my job left me along with my income. I struggled with a new, unpleasant identity. Massive amounts of medications to control my behavior turned me into a living zombie. I lost friends and family. People, including family, were yelling at me seemingly all the time. I was frustrated, despondent, and embarrassed. I became so distraught that my teenage son found me in the garage with the car engine on. That didn’t work, so I ingested mouthfuls of Klonopin at one time, just to dull the mental anguish. Sometimes, I took way too much. Finally, I saw a counselor that really helped get me on the mental healing side of this whole nightmare.

Why do I open myself so much to you? I want caregivers to know we appreciate and thank them even when we are incapable for expressing it. But please don’t discount that we are struggling also.

10 Comments on “In My Own Words”

  1. Thank you for sharing your story. Whether it is FTD or any other dementia, I maintain that all of those living with dementia know and appreciate what caregivers do for them! I was caregiver to my husband (2 types of dementia, FTD and Alzheimer’s type) as well as now as administrator for an assisted living I opened specifically for those with dementia. I teach staff and families alike that the resident may not be able to express themselves as they used to, but to believe they do appreciate–and if you watch their eyes closely, you will see their expressions (all of them: humor, thanks, sadness, etc.) in their eyes!

  2. Thank you for sharing your journey. My husband is suffering frontal lobe Alzheimer’s. He has a flat affect and has trouble making decisions.

  3. Thank you for your authentic response and willingness to share so openly.
    No One wants to rely on another in our mixed up society, when actually relying on one another is a source of strength that we’ve lost over the decades.
    Giving and receiving without expectation of anything other than the joy that it’s within our abilities to give is not as hard as it sounds. But it is a mindshift.
    Your abilities to share and write about your experience is a gift. I’m so glad you’re part of the PAC team and i got to hear you speak the other day and to read this.

  4. Excellent Anne! Thank you for speaking for all of us so eloquently, and for sharing your story!

  5. Excellent Anne! Thank you for speaking for all of us so eloquently, and for sharing your story!

  6. Thank you for sharing your experience. I am also an RN who is recently disabled and I find it heartening to know I am not alone. Sometimes it really is just one day at a time.

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