We spent Christmas in Ohio with Bear's family. It was a great time. I am sitting in his parent's living room while I type this..... Browns game is on and we are all cuddled up on the couches. I love spending time at his parent's house. It is so cozy and homey.
It is remarkable how much has changed this year with his Dad. It has only been six months since Papa Bear was diagnosed with Dementia with Lewy Bodies. I just watched him stand beside the couch staring at in for almost five minutes. It is like his body doesn't respond to what his mind is telling him to do....like his body is frozen even though his mind is telling him to move.
Christmas Day was difficult for him. He sat expressionless on the sofa beside Mama Bear all afternoon. He didn't respond to any of the gifts and had difficulty opening presents. At one point, he exploded in anger at MB.... he told her NOT to buy anything and he said she better find the receipts and take everything back. She just exploded into tears. It was hard because she brushed it off the first few times, but after a while, it just tears you up because we are all mourning the way he used to be at Christmas. I think it really hit hard this year because last year he was able to keep his spirit up, but this year, it was gone. I set down with him to go through some baseball cards, and he was unable to process the experience. That broke Bear's heart because that is something they have always bonded over.
I think we all fear that he will not get better, but just continue to become more frail and disoriented. It is hard to see such a kind and gentle man struggle so much to get through a normal day. I think it is even harder on MB, who has to watch her partner leave her a little more each day. I am so thankful I had a few years to get to know him, and I know his legacy will live on through Bear and our children.
Sunday, December 26, 2010
Wednesday, December 8, 2010
Christmas Memories.
Christmas at our house was always fabulous thanks to my Mom. Here are some of my favorite memories by house:
Creekwood
Creekwood
- I remember her staying up all night stringing fresh cranberries and popcorn for the Christmas tree.
- Getting the most ridiculous gift of my life: Pinky, the 15 foot snake that I BEGGED for....She thought it was the ugliest thing in the world, but because she bought it for me, made me love it even more.
- Penty and I needing to take breaks between opening presents because there were so many under the tree. He would get soooo excited about the smallest gifts....it was precious.
- Seeing my Dad put things together and videotaping us in the hall waiting to see what Santa brought us.
- Mom reading Christmas stories in the living room to the family. She was the best story reader.
- Getting my first Dooney and Burke and my American Girl dolls. She always knew how to SHOCK me with presents.
- Going to NorthStar mall every year to shop....just the two of us. We would look for clothes for my Dad and pick up a few things for ourselves. I would lay in the Dillard's dressing room on the floor and she would model for me.
- The house always looked amazing. I loved going through all of the ornaments and hearing the stories of how her and my Dad gathered them. We have started our own little collection, and I think of her with everyone I buy.
- When I think of the house at Christmas, I think of love, warmth, and sparkly lights. She always made it magical.
Purpose and Diagnosis
After two years of wondering why my Mom was changing, we finally got our answer in March 2010. Her neuropsychiatrist gave us the results of her in-person tests, and said that she had a high IQ and strong vocabulary, but her problem solving and ability to learn from mistakes were impaired. This is what we feared after her CT scan showed frontal-lobe strinkage, and the test results lined up with the CT scan results. It was official. She had frontotemporal dementia (FTD).
Since March, it has been a swift, and painful journey. My Mom was my best friend in the world, and now she is a shell of the person she once was. I miss her with my whole heart everyday. I want to document this journey of loss and love, so I can remember these moments, and do my best to carry on her legacy.
So....what changed in the two years leading up to her diagnosis?
In March of 2009, I took matters into my own hands. I told her she would be staying with me and going to a mini boot camp. I made her wake up early, work out, take art classes, and eat healthy. She seemed to do pretty well, but everyday was a struggle for me. It wore me out. After a week, she went home and committed to keeping up with the walking, eating, and waking up. A week later, she was back to her same habits.
Around that time, we got a new doctor for my Mom. This is where the journey changes. I am so thankful we had a good doctor that started digging deeper into what was going on with her.
A few weeks after leaving my house, I was panicking that she was falling deeper into depression. I called the mental health facility here, and they suggested an appointment to determine if she was a fit for the depression outpatient program. She was, and they accepted her for the month-long program. Once she was finished, my Dad and I wondered if she should go inpatient, because she seemed the same...closed off, detached, and unaware of her impact on her family. The directors thought inpatient would be too much.....she was stable, and she wasn't hurting anyone. Sometimes I wonder if we would have known her diagnosis sooner if we would have moved forward with that....however, it probably would have completely freaked her out!
Even after the outpatient, she was the same for months. My Dad and I were at a loss of what to do next. Finally a breakthrough. My Mom started on a raw foods diet and took herself off of all of her drugs. Her doctor was shocked of course, but asked how she was feeling since being off of anti-depressants. She said she felt great! The doctor immediately noted that if she was depressed, she would not have been able to take herself off meds so easily. At that point she ordered a CT Scan and that led us to the diagnosis of FTD. Here we are nine months later, and things have definitely changed....
Since March, it has been a swift, and painful journey. My Mom was my best friend in the world, and now she is a shell of the person she once was. I miss her with my whole heart everyday. I want to document this journey of loss and love, so I can remember these moments, and do my best to carry on her legacy.
So....what changed in the two years leading up to her diagnosis?
- We used to talk twice a day on the phone, and she stopped calling.
- She stopped asking questions and caring about what was going on with me, friends, and family.
- She would have a few drinks and act like an idiot.
- She didn't sleep at night, and slept all day. Eating habits were terrible.
- She would say inappropriate things---it was almost like her social "filter" was gone, and she said anything on her mind.
- She would go off on tangents and not listen to what you were expressing or sharing with her. She would take the conversation where SHE wanted to....even if it was unnatural.
In March of 2009, I took matters into my own hands. I told her she would be staying with me and going to a mini boot camp. I made her wake up early, work out, take art classes, and eat healthy. She seemed to do pretty well, but everyday was a struggle for me. It wore me out. After a week, she went home and committed to keeping up with the walking, eating, and waking up. A week later, she was back to her same habits.
Around that time, we got a new doctor for my Mom. This is where the journey changes. I am so thankful we had a good doctor that started digging deeper into what was going on with her.
A few weeks after leaving my house, I was panicking that she was falling deeper into depression. I called the mental health facility here, and they suggested an appointment to determine if she was a fit for the depression outpatient program. She was, and they accepted her for the month-long program. Once she was finished, my Dad and I wondered if she should go inpatient, because she seemed the same...closed off, detached, and unaware of her impact on her family. The directors thought inpatient would be too much.....she was stable, and she wasn't hurting anyone. Sometimes I wonder if we would have known her diagnosis sooner if we would have moved forward with that....however, it probably would have completely freaked her out!
Even after the outpatient, she was the same for months. My Dad and I were at a loss of what to do next. Finally a breakthrough. My Mom started on a raw foods diet and took herself off of all of her drugs. Her doctor was shocked of course, but asked how she was feeling since being off of anti-depressants. She said she felt great! The doctor immediately noted that if she was depressed, she would not have been able to take herself off meds so easily. At that point she ordered a CT Scan and that led us to the diagnosis of FTD. Here we are nine months later, and things have definitely changed....
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