Monday, February 01, 2016

dementia journey

I know I'm going to regret not blogging more often than I do. So here's hoping I post once a week from here on out. We'll see how that goes. The reality is I work 40 hours a week, I'm gone 10 hours a day and take care of my husband and hold down the fort the rest of the time. Needless to say, I'm tired. But thankful for everything. And I mean everything.  Too many things could have gone terribly wrong before my husband's Frontotemporal dementia diagnose.

So here's a list of bullets we dodged these past two years ~
  • it took less than 2 years to get an accurate Frontotemporal dementia diagnose, unlike many that are misdiagnosed for many years.
  • we found the perfect Adult Day Care right away.
  • no crazy drugs were administered before the diagnose causing adverse side affects.
  • he willingly gave up driving well before his dementia diagnose.
  • I was able to take over the finances before too much damage was done.
  • thankful he never cooked or baked, because now he's less likely to touch the stove.
All to say, God was watching over us and I am humbled and deeply grateful. Makes me all the more passionate about FTD awareness... to make sure more doctors and therapists and counselors and psychiatrists KNOW about this type of dementia. Frontotemporal dementia. Pick's disease.  Let's get the word out.

There is a definite ebb and flow to the deterioration of his brain. He is very much like a little boy, but then out of the blue will ask if he can rub my feet... which he did often, but hadn't the past 2 years. And might I add, it was a pretty amazing foot rub!

We will sit down with friends and he will pray the most beautiful, eloquent prayer before a meal... then take two bites, get up and go read in his room. He would go turn on the tv, but I've learned to hide the remote when we have company.

He will ask me several times within an hour if I can take him to Quik Trip for a fountain drink, and each time I will remind him we've already gone today, in which he cheerfully replies "oh, ok!" and happily go back to his room to read. He never argues, gets upset or is sad or angry. Makes me wonder if his short-term memory is being affected more and more with his repetitive questions.

He will be getting all his toe nails removed in the next week. He has not let anyone touch or clip his toe nails in well over a year. And we've tried everything. Needless to say, they are in real bad shape. He has to be in terrible pain, but his dementia does not let him identify the intensity of his pain. He says he's fine, even while limping.

He is fully aware that our daughter Miranda is pregnant and due any day with a baby boy. He mentions often that he can't believe Miranda has a baby bump. I'm hoping today he will let his barber give him a shave and haircut, so he's looking good for photo ops with our new grandson. It's been 2 months since his last visit. One never knows how it will go.

So I just got back from taking him... and it went... well, ok. The haircut didn't happen and he got up a couple times to leave when his beard was only half trimmed. Thankfully the shop owner Raya is a pro and she knows Randy has dementia and handles him very well.

So I dropped him off at his day care after the shave and I am now looking at a long list of things that I need to do on my day off... but unmotivated to do a single thing. I am so easily overwhelmed at the smallest tasks. But I will take baby steps today and begin the purging process. I have plans to fill the oodles of empty boxes in the garage with all my crap stuff and donate to my favorite charity thrift store. Yes, my goal is to get the van in the garage this winter.

Ok, I'm going in... cover me!


Me & my daughter Miranda at her Baby Shower

4 comments:

joanne said...

I am humbled and amazed at your courage, faith and strength. Your honesty is refreshing as well as painful to read. My hopes and prayers are with you all. Best wishes for that little grandson...it's a wonderful ride. ;j

marty (A Stroll Thru Life) said...

You are such an inspiration when you face such challenges. You have no idea how much you encourage others. I am totally in awe of you. God Bless.

deb said...

Prayers for you and Randy. Miranda looks beautiful (as do you)!!

Meta Campbell said...

Much love to you all!