Thursday, May 21, 2009

On the Move

I decided to participate in the Memory Walk for Alzheimer's on the National Mall. I am putting a team together and our name is Knowing is Half the Battle. Not very original I know. But that is how I felt when I found out that my dad has AD. I said to myself "well at least now I know". My goal is to recruit 10 people onto my team. I hope we raise a lot of money because this is a worthy cause.

Wednesday, May 20, 2009

Father of the Bride

One of the worst things about this disease is that the suffers unfortunately lose much of who they are. He is still in the fairly early stages of AD, so these personality changes are not really recognized by others. Friends say "well he is old and that is how older people are", and that may be true. But I can see him slipping away.

My father and I were once very close, well we are still close but things have changed between us. There is a tension there that didn't exist before. Like I said I am an only child, daddy's little girl. Now that I am not only his daughter but also caregiver, dietitian, secretary, accountant, therapist, and mother; we don't get along as well any more and it makes me really sad :(

I am getting married next year and I really want my dad to be there. I want him to walk me down the aisle, and kiss me on the forehead. I want to dance with him to "What a Wonderful World" and have the whole room oh and ah. Sure he will be there physically, but I'm not sure about mentally. I wish I could go back 10 years to the way we were back then.

Monday, May 18, 2009

Seems the National Spotlight is on Alzheimer's Disease

I was on my way home from work on the subway yesterday and I saw an advertisement that read What's the Cost of Alzheimer's to Today's Workforce?. Constant leave, job loss, poor work performance just to name a few. I was struck by this question and I would like to know statistically what is the cost? I haven't finished digging for facts yet, but there are many examples of the sacrifices caregivers have to make in the HBO series The Alzheimer's Project. During a quite emotional segment entitled The Fence, one daughter gave up her job in the city to move to her mother's farm. She works the land and spins yarn from the live stock just to make ends meat. Her sense of loneliness and desperation was palpable. I just wanted to reach into the TV and give her a big hug. What an amazing job HBO did by the way. In any given installment of the 5 part series I can cry or I can smile, often times both.

I think it's great that the national spotlight is being put on this terrible disease. Only then can we hope to fight it.

Friday, May 15, 2009

I Dropped the "A" Bomb

I came straight out and told my dad his diagnosis verbatim from the doctor's notes. He pretty much just nodded. I asked him "how do you feel about it?" and he said "I'm frustrated but I guess there is nothing I can do." He didn't seem worried. I think I am more worried then he is. I am more and more confident that he should move into an "Independent Living" facility (as opposed to assisted living). I found a fantastic one and we even dined there a week ago. I asked him when he would be ready to move. He told me that he had to get his books in order first. His house is a mini-library. He doesn't want me to rush him, but he does acknowledge that it is a necessary step (Thank God).

I am anxious to get him in because I also want to find a therapist in the vicinity of the retirement home. I don't think he is depressed, but I think he needs an outlet and it would be very beneficial to him. There are some things he holds back from me, and that is okay as long as he gets them out and shares them with somebody.

With love, God bless

Tuesday, May 12, 2009

All You Need is Love

My name is Cynthia. I am an only child and I am the primary caregiver for my father who suffers from early Alzheimer's disease. My father is 76 years old... I am 24. This is my story, my journal if you will. There will be a lot of tough love on this blog, but it is LOVE. Some people may not agree with my approach, and that is fine. I can accept the fact that I am imperfect, but I know that I am doing the best that I can do with the cards that I have been dealt. I also know that they were dealt to me for a reason, that of which I do not question for a second.

My father was diagnosed on April 14, 2009 with Alzheimer's dementia with component of micro-vascular dementia. An MRI from one year ago showed moderate cortical atrophy as well as changes common with micro-vascular disease. The doctors asked my father after his exam if he wanted to know the diagnosis. He said "No". I have told him that the doctors said he suffers from dementia. He does not know that it is most likely due to AD. I don't know how to tell him.

God help me.