Papa Tom

Ava loves her Papa.

Like I said yesterday, we visited with Tom last night. I am so glad we went. It was very nice! I got in some hugs and so did Miss Ava! As you all know, Tom has Lewy Body Dementia and is only 62 years old. My mom sees him every day (for the most part) and some days are good, some days not so good, some days are bad. For both of them. Tom has been losing weight pretty consistently lately and we don't know what will happen next or when. My mom has been in contact with Hospice and Good Shepherd so that we are prepared.

I would like to share some posts my mom has written on Facebook about LBD and/or Tom.

I wish she would put the funny things on FB but I think she feels bad that it would seem like she was "making fun". But, really, some days you just have to laugh or you'll cry. :) Love my mom and Tom so much!

 

Aug. 15: Early yesterday evening I got a call from the Manor. Evidently Tom was having quite a time and the nurse asked if I could come help calm him down. He was quite angry, wouldn't take his "vitamin" to calm down and they needed my help. Well, I immediately said that I would be there in 3 minutes....forgetting for the moment that I had granddaughter Ava spending the night. I wasn't frantic as I have gone thru this before, but told Ava that she needed to come with me and she didn't have time for shoes and socks. Like a trooper she jumped into the car (normally walk but didn't want to waste time) and we drove our 2 blocks. I explained that Papa was very confused and angry and that he needed us. She marched in, looked at Tom as he was basically being restrained by 2 nurses, took his hand and said "Papa, lets go for a walk." No fear...no tears...no reservations. He looked at her, took her hand (and mine) and we walked. Shortly after that he took his "vitamin". We walked and walked (as this time Ava played on the swings in the courtyard). Finally went back inside, got his pj's on and Ava planted herself on his lap. Ava and I spent almost an hour with Papa. He calmed down and saw a little reality. I tell you what....the unconditional love of a child is a blessing....no matter where you are, what is wrong with you or what you might be experiencing. She worked miracles. I am a VERY proud 'Nanny'. After we left she just said she was happy that Papa was feeling better. Ava is only 5 years old but she showed the maturity way above some adults I know. Like I said...what a blessing she is to us all.

 

Aug. 20:

Visits are very important to those with Dementia. They may not remember your name or even how they know you, but it DOES make them feel better. A hug, handshake, a few minutes of chatting may seem like a small thing to the visitor, but BELIEVE me.....it is a huge thing for the person with dementia. Please don't be afraid to see your loved one "like that".....most of the time they don't realize they have a disease. Remember....they are still 'there' in their minds.

 
Aug. 24: This article makes me weepy. We NEED more dementia awareness in the US as well. Most people think that Alzheimer's is the only dementia. Not true. There are many types under the umbrella called dementia. Each one robs the individual (and their families) of the life they once lived, memories they once had and mostly no hope for the future. There is NO CURE.
OstrichCare

Oct. 1:

30 years ago today I married the best friend I've ever had. He married into a family of 3 children and loved them as if they were his own. Never wavering in his commitment to family, love for us all and being the best husband one could ever want. I am still married to my best friend, although he is different now. Lewy Body dementia and Parkinson's have robbed him of the life he knew.....and the REST of his life. We had big plans for our retirement. Those plans have changed. His retirement is being spent in a nursing home, wondering why he is there. Mine is spent faking happiness when I am around him. It is heartbreaking.

I watched Good Morning America this morning.....everyone was "going pink" for breast cancer awareness. I applaud everything that has been done for awareness, mammo's for those who can't afford them and the research that has been done to eradicate this disease. Millions and millions of $$$$$$$$'s have been donated for research which has helped millions of women kick this cancer. My Mother, Grandmother and Great Aunt died of breast cancer and I have loved ones and many friends who are fighting it.

After spewing all this "bunk" as some might call it I am wondering why Dementia isn't "celebrated" or talked about as much as breast cancer. October is national Lewy Body Dementia Awareness month and September was National Alzheimer's awareness month. Did anyone else know that? Purple is the color for Alzheimer's and other dementia's. Did you know that? Dementia is the 6th leading cause of death in the U.S. Who knew? How many famous people besides Ronald Reagan and Glen Campbell have or died from dementia?

If a celebrity doesn't have it you don't hear about it. Do you have a friend or loved one who suffers from the most dreaded nasty disease I could ever imagine? SPEAK UP!

Thanks for 'listening' to me rant. Somehow it helps.

 

Awesome!  Whoopi Knows LBD!