The beginning of the disease we had never heard of.

I have found myself reflecting over the last couple of weeks. It's kind of when a birthday or anniversary comes up and you think of times past. Mom's five years of living at our home is an anniversary in essence. So my reflections have drifted back to the beginnings of a disease that I never knew existed. As I look back, Mom's disease started in her mid to late 50s. At that time, she and my stepfather lived in Las Vegas. They would visit Florida at least a couple of times a year and of course we would talk regularly on the phone. Initially, I noticed a big difference when I called her on the phone. She would answer the phone and really wouldn't say much. I would ask her a few questions, she gave me simple answers, and then she would hand the phone to my stepfather. This was not at all like Mom. Mom always was a little quieter around crowds, but not when she was talking one-on-one with us kids, grandkids, or her friends. I remember asking my stepfather if he noticed any changes with Mom and he said no. My stepfather was the talker so maybe he really didn't notice. I think it's important for people to know about my Mom and who she was(and still is). Maybe the changes in Mom that I write about will help those of you caring for a loved one with FTD to recognize the symptoms as you go along on your journey.

Alberta never went out of the house without makeup, the proper clothing for the occasion, or her hair out of place. She always had beautiful nails and glowing skin. She was extremely organized, detailed, was a planner, and spoke with a soft clear voice. Mom loved to read. She was one of those folks who would put away three or four books a week. You could watch the show Jeopardy with her and she would answer every question. Mom was very knowledgeable about history, politics, sports, music, and movies. Alberta worked her entire life until she retired at 62. The last 25 years of employment was at Allstate. Most of those years were as an administrative assistant in the claims division. Alberta loved to travel, go to amusement parks, garden, eat out, watch movies, listen to music, and see her family. Mom has seen about 95% of the United States, parts of Canada, Mexico, the Caribbean, and many parts of Europe.

So going back to my phone calls with Mom, as time went on the conversations were all one-sided. She hardly said anything. Sometimes there would be a long silence before she said a word. I would have to say Mom are you there? Then I also started to notice that her tone of voice was becoming emotionless. I would ask her if everything was all right and she would tell me yes Now keep in mind she is working a full-time job, taking care of their home, doing things with my stepfather, and pretty much what people do in their late 50s. So I began to think maybe I am reading more into it than what there really is. Mom was pretty healthy so that didn't concern me at the time. She had the normal cholesterol issues and elevated blood pressure, but that was it.

Mom is coming into her early 60s and is looking forward to retirement and traveling. They are also discussing moving from Las Vegas to Florida at this point in their lives. They made a definite decision in 2003 to move to Florida to be closer to family. They purchased a home on the lake about 60 miles north of the family. So even though they were now in Florida, they were a good distance away. We did get to see them more, but it was not a weekly or daily occurrence. I still called Mom and Tom on a consistent basis. As I got to see her more I noticed subtle changes through the mid-2000's. Her communication skills were still the biggest change. She was listening to what you told her but almost seemed afraid to respond. As I look back, and know more about the disease, I realize she probably could not find the right words and just became quieter. As I said earlier she also seemed quite unemotional. Loss of empathy and the ability to express and share feelings is an earlier symptom of FTD, which can also be taken as depression or many other illnesses. So Moms early-stage symptoms of FTD included speech, loss of empathy, and she was very apathetic.

It's time to end tonight and go tuck Mom in and get some rest. I'll continue on with the story which begins to get very interesting as disinhibition and behavioral issues start rearing their ugly heads! Until next time, be happy and hang tight.

Wow five years have passed!

Hi everyone. It's been a long time, but today is a great day to begin blogging again.

Exactly 5 years, to the date, mom has lived with us. Today is the five year anniversary of my stepfathers passing. It also marks the day that mom joined our household. The last time I posted was approximately 3 years ago. So much has happened and so much has changed in that short amount of time. Mom is in the end stage of her frontal lobe dementia. What does that mean? It means she is still capable of understanding what's going on (with a much longer reaction time), but is mute and bedbound. I can only imagine what it is like to be locked up inside of your own brain and not able to get out. If I was in my brain alone I would be in the insane asylum LOL. Mom also has major muscle rigidity in her upper body so she cannot write or use her hands. She cannot bend her arms, nor turn her head from side to side, or lift her head up. She is under hospice care and of course I continue to care for her 24/7. I still have an aide which allows me to at least go to the grocery store, medical appointments, and care for my grandmother.

It's all about keeping mom clean and comfortable and out of pain at this point. Mom still has her great facial expressions but her muscles in her face are also stiffening so her facial expressions are more rigid. All in all, for her condition, she seems happy and comfortable. She is very loved. The aide's I have had through the years have been loving and kind, hospice is very caring, and of course she gets much love from the family.

Caregiving for an FTD patient is very demanding and challenging from the onset of the disease and through all its progressions. There are a lot of stages we have journeyed through over the last five years that I will be blogging about. My next blog will start back three years ago and come back to the present. I hope you all will join mom and I as we journey back and simultaneously journey on. As I have often said in previous blogs humor is all important and above all gratitude is a necessity.

Until next time, be happy and hang tight!