Comments on: Your Survival Check List

By: Kathy Ritchie

Kathy Ritchie — Mon, 14 May 2012 17:37:04 +0000

Thank you for the suggestion… I have them on my list of resources and follow them on FB, so I can share info they post on their wall. My check list was something I created just based on my own experiences figuring things out along the way.

By: An

An — Mon, 14 May 2012 13:45:50 +0000

kathy, you should also know that there are alot of resources at the association for frontotemporal degeneration – http://www.theaftd.org – - they focus on all the aspects on this group of terrible diseases, including helping the caregiver – -

By: Kathy Ritchie

Kathy Ritchie — Tue, 11 Oct 2011 14:10:17 +0000

thanks for your note… i cant even imagine my life without the disease…. without all of this…. i suppose thats why its so dark; i cant fathom my life any other way right now. thank you.

By: Lina

Lina — Tue, 11 Oct 2011 05:40:23 +0000

My acting background helped me when my mother was in the grip of Alzheimer’s. Sometimes Mom talked to the real me, other times I became her high school friend Annie, or other early-life friends or family. At times she cast me in random roles like the kid who mowed the lawn. I never knew who I was going to be that day. Once I got past the bizarre horror of my mother thinking I was someone else, it somehow seemed comforting to play the roles, since it seemed to calm her. Annie was my favorite, since “Annie” seemed to bring out the best in my mother. Evidently they had some very good times together. Not sure how much was real and what was fantasy, and I’ll never know. It doesn’t matter. I always believed that perception is reality, and at that point I had to eat my own dog food.
My mother died five years ago. At the end she had no idea who I was, but she knew we belonged together. If I had written these comments while I was living it, my words would have been very different. Dementia is hell. Find the best ways to make the alternate reality work as best you can.

By: hally

hally — Wed, 13 Jul 2011 05:14:27 +0000

My mother was also (finally) diagnosed with FTD in early 2011. We knew something was wrong with her since 2007, when she started having panic attacks at work. Currently, she is 57. She will be 58 in 2 weeks.
I have hired a caregiver to look after her during the day but I do wonder how long this situation will sustain itself. The caregiver is in her 70′s and is quite healthy at the moment- but the thing about older folks is that, one day they’re great, the next day they could be dead.
Lately, I’ve been asked by my uncle (my mother’s brother) to host a surprise birthday party for my mother. I had to laugh when he said that- any day I could have a surprise birthday party for my mother and she would never be the wiser. There are these moments where my cruel side really come out. It’s either be cruel or be heartbroken, I guess. Frankly, I had no intention of doing any kind of surprise anything for her birthday; just driving down 120 miles each way to see her and take care of her financial, legal, medical, shopping and dental needs exhausts me. Plus, she lives in a single family home that must be tended to and repaired. I am her only child and most of the care responsibility has fallen on me. Thank God I have a very capable caregiver though.
I sometimes wonder what would happen if I got run over by a bus or just disappeared. Who would deal with this mess? Everyone in my family seems in denial about my mother actually having dementia; they think she is merely depressed. One of my cousins has the idea of taking her on for a week to “cure” her….I simply can’t wait for that!
Anyway, thanks for letting me vent. I do feel for you…..

By: Kathy Ritchie

Kathy Ritchie — Sun, 29 May 2011 14:50:10 +0000

ha. we are in hell together. thank you for reading and for your support. my friend passed along this facebook group… might be worth chking out…
for the kids of parents with ftd and other early onset dementias:
http://www.facebook.com/home.php?sk=group_187971611237497

By: Kathy Ritchie

Kathy Ritchie — Sun, 29 May 2011 14:46:48 +0000

thanks for your support…

By: Betty

Betty — Sat, 21 May 2011 20:25:30 +0000

Reading your blog today makes me realize just how lucky I am. I’ve been caring for my Mother (in my home) since last October 2010 after she had a fall, up until then she had been living in her own home, my sister and I taking turns just staying at night (my Father died many years ago). Here’s where the lucky part comes in, she’s over 100, ( will be 101 in September, God willing.) For now her mind is very clear but she can’t walk. She can stand up long enough to get into her wheel chair, that’s how I move her around. I am now confined more or less to just being at home and caring for her which is hard (no shopping trips, going out to lunch etc.) I was so used to going and coming as I wished, but I still say I’m lucky. After reading what you, your Father and (Katie H in your response) must be going through it breaks my heart. Sometimes life seems so cruel and we wonder why. Your life support list has given me many things to think about that I hadn’t thought of so “Thank you” for that.
Bless you for the comfort you’re giving your father, take care of yourself and stay strong.

By: Katie Hart

Katie Hart — Fri, 13 May 2011 20:31:23 +0000

Oh My God. You live my life. Ok, you are living your own hellish version of my hellish life, but still. I think you are the first person I have encountered that actually (almost) lives my life. I’m 24, my very own model of demented mom is 52. (And scarily enough, I’m Kate and my husband is John…) My mom was diagnosed with FTD in 2007 when I was only 21. My parents divorced over a decade ago so my mom was a single mom to me and my two younger sisters when she started showing symptoms. My mom was a pastor to a large congregation and to this day, still loves her communion. I totally understand the poop gag reflex and I don’t remember the last time mom spoke a real sentence to me that wasn’t mostly gibberish. I don’t know about you, but while I appreciate all the support that I can get, I get really sick of people saying “I know exactly how you feel because my mom is dying of dementia too!” The only small difference there is that the people that say that to me are in their late 50′s or 60′s and have had their mother throughout their lives. We don’t, and we won’t, and it sucks. I’m “lucky” because I found a great assisted care facility for her to live in just two miles down the road because I have to work and I can’t be home with her all day. None of my family lives any closer than 5 hours away and my younger sisters have mentally checked out of her care because they “just can’t deal with it.” I bake a lot. It’s a de-stresser for me. I’m so glad that I found your blog today. I’m going to be a frequent visitor now, for sure. Thank you for actually saying the hard things that I feel like I’m not supposed to say.
~Katie