Great Article for All to Read, some trials and many blessings...

https://www.linkedin.com/pulse/16-things-i-would-want-got-dementia-rachael-wonderlin

Had to start out with this link today.  It is an awesome article by someone who must be an amazing caregiver!  Please read it if you are a caregiver or if you are an FTD sufferer, read it and give it to your caregivers.  It is, of course, geared to people with Alzheimer's Disease as most things dementia related are.  Some of her items you would have to change up a bit for FTD, like including me in family gatherings. Gatherings would need to be kept small and calm, but the idea is the same.

It should open the eyes of some caregivers, family members and friends of FTD sufferers, and those with any form of dementia.  To some, all these 16 things will seem obvious, but there are still more who need to read it.

I sat with a family member for three days when she was admitted to the hospital with end stage Alzheimers, until her death.  I didn't sleep much, and got few breaks, until my sister arrived from several states away to help me out. Her other family members, more closely related than I was, did not understand that she could not handle staying there alone and that no one, absolutely no one, should have to die alone. She was obviously confused with where she was and why she was there and was in pain.  I held her hand the entire time and talked soothingly, praying aloud and monitored her care. It broke my heart that her immediate family members were not with her. For one of them, it was unavoidable and much regretted, for the other, it was shameful. This family member lived within a few miles and, get this, worked right in the same hospital and apparently believed that a couple quick four or five minute visits each day was adequate. I am so very thankful that I could be there with her and thank God for that blessing often. Fortunately, I was less far progressed into my own dementia at that time.

This happened about two and a half years ago. Thinking about this today kind of scared me, because I realized how much I have deteriorated in that time period. My own condition also causes me to wonder about something. My grandmother, my mother, her sister (my aunt) and her brother, all died from what was diagnosed as Alzheimer's Disease. Now that I am well informed about FTD, I strongly suspect that they all had FTD, at least to start with. Some studies show that FTD sometimes does precede Alzheimer's in a patient. Since it can only be truly diagnosed under autopsy of the brain, we will never know for sure.  I do know that looking back at the earliest signs of a problem with my mother, in hindsight unfortunately, were similar to mine. The most striking similarity is that she was getting lost in familiar places and having difficulty figuring out how to get from one place to another, even if one was in sight of the other. So much more research is needed on this often ignored condition.

This week, I continue to have worsening problems with balance and walking. I also am finding myself confused as to how to do familiar things. This morning, for instance, I could not remember how to turn on my computer. I kept touching buttons on the keyboard and just staring at it, until the on button finally registered in my mind. I fight to keep these realizations from leading me into depression. I am so very thankful for my online support group. Sometimes, it is only the other sufferers who can relate and understand. I am also thankful that I see my therapist this week. She can often pull out solutions to little problems for me. I may not be fortunate enough to live in an area large enough to have medical doctors nearby who understand FTD, but I am so blessed to have found a psychologist who does.

I have been fighting the nasty virus that so many seem to have right now, that it does not help my mental state. Add in the post-holiday blues and my birthday coming up tomorrow (my birthday is a long and painful story in itself... bad memories on my birthday), I am struggling.  But, I am determined to win and overcome this melancholy. Thank you for "listening" to my story about the death of my loved one from two and a half years ago. It is something that still disappoints me in a family member who I have loved deeply, still do, and felt close to. I just don't understand how someone can allow a loved one to be alone in times like that. Fortunately, I know I will not be alone. I have my husband, my daughter and my sister and I imagine they will all be by my side, they certainly are now!