My Christmas Blues...

[jessybx19]

This year Christmas was a bit more difficult. My dad died 3 years ago from complications of PSP but this illness had taken my dad long before. I often get angry and go through the "why him" phase. I feel cheated. I feel like my kids got cheated. My mom also was cheated. Thinking that she would be able to enjoy her husband and travel more, instead she went from being a wife to a full time nurse... With a crash course degree

I had to educate myself in order to advocate for his needs in and outside the hospital. There were times I wish I could of done a better job but you dont find too many people who underatand this illness that can become your allies... It was a fight with the medical system. It was even more so when you came in with knowledge. My biggest fight was to ensure my dad was being treated with dignity. Every ill human deserves that.

Then there was my dad. The sickest part of this illness was that he was very aware of hus surroundings even until the end. He eventually became a prisoner of his own body. You could see him wanting to escape by the look in his beautiful brown eyes. The rapid decline that would leave him less mobile year after year until his departure. I remember him finding humor in situations around him and his fight to let out a laugh. His excitement everyday when he was able to taste my mother's cooking even when pureed. He could still appreciate the flavors.

I miss my dad so much. I miss us getting worms for his fishing trips. I miss his stories of growing up in Puerto Rico. I miss watching T.V. with him. I love shows like the Twilight Zone, Jacques Cousteau and family feud because of him. Each year we would watch March of the Wooden Soilders for Christmas, as well as Charlie Brown, Frosty the Snowman... Well name the specials and we probably watched it.

I hope to keep the traditions we had alive. I have to. I will also continue to seek peace and closure, those have been the hardest to grasp.

As caregivers be kind to yourselves. You play so many roles and it can be exhausting. Accept help from those who are sincere about it but also seek help before you become overwhelmed. Have a plan because once the decline begins to happen it will come fast. Finally work with your medical team but work with a team who will also take your experience and knowledge into consideration. You now your family member best and if your medical team in and out the hospital is not on the same page don't be afraid to advocate. I know this can be challenging for various reasons but in the end it will be worth it.

Love you all!

In solidarity,

Jess

Pic: my mom and dad with my twins in the background.

[Dickwin]

Jessy,

Thanks for visiting. Folks like you have a wealth of knowledge to impart to those of us who are still in the grips of this damned disease. I, for one, appreciate your continued support.

Wishing you and your family some peace and goodwill in the New Year.

Regards,

Dick

[Hidden]

Merry Christmas Jessy. God Bless You & Your Family. I agree with you so much because we traveled a similar journey. Mom had PSP.

Keep on keeping on with your dad's traditions with your twins... You are blessed & a blessing.

Sending you gentle hugs... Granni B

[JantheNana]

Merry Christmas Jessy. Your story about your Dad sounds very much like mine with my husband of 53 yrs whom I lost in July of 2017. He was the leader of our family and we carry out many traditions because of him,like on Christmas Day going to eat Chinese food. We can laugh now as we remember the things he did and said.

He and I worked hard building our own business for 35 yrs and looked forward to retiring and traveling but when that time came,so did PSP.

I felt (and still feel) robbed of that time together. My advice to anyone is while you are well enough to do something,do it,as you never know what the future will bring. Blessings to all! Janet