The past few weeks have been a whirlwind. We brought Daddy home from rehab on June 17th, his 78th birthday. We have hospice involved with him now. He has settled in quite well. I can already tell that he is more satisfied. He is staying awake longer and enjoys being rolled up to the porch to sit and eat his breakfast each morning. Occasionally, he asks to be rolled out to my brother's house to see my nephew's chickens (quite the neighborhood entertainment!) Daddy is definitely happier.

As far as his health goes, he is unable to do anything for himself. When I lift him, it's very difficult because he is so stiff. He cannot walk, stand, or feed himself anymore. His speech is so very limited, though he can get out, "NO." Although sometimes he says no for yes. This disease is very odd, because if I give Daddy a word to say like, "Daddy, do you want Coke or tea?" He can repeat back, "Tea." But for him to come up with the words on his own...it rarely happens. I think this is the most frustrating part of the disease for him. As I have stated before, if we don't understand him on the third attempt, he just gives up and says, "Don't know." He has a horrific bed sore on his left heel. This is the only side he can still move and from dragging it up and down, it's caused an extensive wound. When we dress it he gets very agitated and repeats over and over, "Oh me, oh me." I hate to hear him say that when we are working on his foot. Daddy has lost a tremendous amount of weight and his legs are so thin. Moma is trying to feed him well, but it's going to take a lot to get some "meat on his bones" as she puts it.

Moma is happy to have him home, though at times she feels guilty because we have so many people coming in to help her out. It's funny because I think she is the epitome of "in sickness and in health". What great lessons I've learned from her over the past months. She has tirelessly given of herself to Daddy. She would go to his room every day for at least 8 hours and rise to his every need. Now, she is constantly making sure he is comfortable, fed well and of course, loved well. I admire her and wished she could see things through my eyes, because although I admire her for what she does every day for Daddy, I'm also very worried about her. I know what caregiving can do to a person. She looks tired and I can tell these past few months have taken a toll on her.

Daddy has his days where he is very quiet and unresponsive. We believe these are the days when he is thinking. He was very quiet after his first visits with the hospice nurse. She asked him many questions that have to be asked, but are difficult to handle. "If you stop breathing, do you want them to resuscitate? Do you want a feeding tube should your swallowing become too difficult?" All necessary questions on any healthcare standpoint, but it makes me think too. I know he would not want to be this way. Anyone who knows my Daddy knows what kind of man he was and this is not how he wants to live. The good and bad part is Daddy still has his mind, so he is aware of what is happening, just not able to do anything about it. He's trapped inside a body that can't do anything he wants it to do. This is not quality of life. This for him is a living hell.

Daddy is about the same as he has been. A contractor is busy at their house trying to set it up to make it handicapp accessible. He's making a larger bathroom for the basement where Daddy will live if and when he comes home from the nursing home. At first I thought it was a definite that he would come home, now I'm not so sure. Mom is very discouraged with his "walking". Daddy has been talking about walking with the therapist and the other day Moma got to see this "walking" for herself. She was highly discouraged. She said it wasn't really walking, just a lot of moving with A LOT of help.

Our trips to the nursing home have been fewer lately. I've been going every other day as opposed to every day. During my last visit, I watched them move him from the bed to the wheelchair; he looked so feeble. His right arm frozen to his chest with two fingers sticking out. He is also getting a gaze about him. When I sit down he will stare a hole in me. That's part of the disease too.

Daddy's speech has grown far worse in the past two weeks. He cannot get words to come to his mouth. It's so frustrating to see him wanting to say something, stuttering and searching, and then finally to give up and say, "I dont' know." That's his way of saying, "It's not worth it."

Dad's quote, "I don't know" is how we all feel. I don't know why he's not walking more. I don't know why he's not trying harder. I don't know if he can help it or not. I don't know if he'll come home. I don't know why he sleeps so much. I don't know how much longer we'll have him with us. I don't know. I just don't know.

Reality

Dad had a bad Saturday a couple of weeks ago. When I arrived that Saturday afternoon, he was trying desperately to communicate to us that the staff had left him in bed all day. He was NOT happy! I decided to "drop in" on Sunday morning since I usually go to church. Just wanted to keep the nursing home on their toes, never knowing what to expect. I walked down the hall to check Daddy's room and his bed was made but he wasn't there. I figured he was in the dining hall and went to check on him there. When I turned the corner, I saw my dad, among many other residents, trying to feed himself with an adult bib on. It took my breath away. I had to stop and take a moment to think about what I was watching. What had brought us to this point? Why was my Daddy in a circle of people who were in such bad shape? How had all of this become so bad? What was he thinking? Even now as I type this I can see so clearly what I saw that morning. It was heartbreaking! The worst part was that many of those other residents were better off than my Daddy. I walked over to help him finish his meal and as soon as I could, rolled him back to his room. As I left that day, I cried all the way home. I cried off and on that entire day. I had seen him much worse than this when he was hospitalized but this particular day CBGD became a Reality.

Through the Years

I'm three years old, I have on a great big yellow helmet, ready to ride with Daddy on his motorcycle around the farm. I'm four years old, Daddy has me in his arms, carrying me up the stairs to put me gently in bed. I'm five years old, it's snowing and Daddy is letting me ride his back on the sled down the winding snowy path. I'm ten and Daddy takes me out to work with him, I held the light for a service call or two and then we'd go to Lowes where I would reap the benefits of my "hard work" in the electronics department. I'm 15 and Daddy lets me go on my first date after a lot of persuading and begging! I'm 16 and I'm calling home to tell him, "I'm not going to ever drive this VW again, it won't shift!" only to have him meet me, jump in the passenger side and show me once again how to drive a stick. So many memories...so much care that I didn't realize until now that I'm sharing this.

Lovey, dovey doesn't describe Daddy. Strong and reliable, that's what I think of when I think of him throughout the years. He never showed a lot of affection, but we knew he loved us. When I say us, I'm referring to my brother and me. By the way, my brother bears a striking resemblance to Daddy in his younger years.

Daddy was the one who we were the most fearful of, "Wait till your Daddy gets home." (It can still send a shiver up my spine) The funny thing is I can't remember when Daddy spanked us. I know he did, but I don't remember it. I guess it was the way he handled it. We knew he meant business and so we were remorseful and didn't let it happen again. But I do recall some swinging action in our direction of the backseat of our car; usually at my brother because he had gotten caught. We both knew that I had egged it on, but he was the one who ended up punished most of the time.

Daddy's attire was usually navy pants and his blue shirt with his name on it and the G.E. patch. He worked all of the time! He loved what he did which is why he worked until he was basically unable to a few years ago. Such unfairness, to retire to live like this. My mom and he should be at the beach right now, him watching T.V. and her shopping. That would be fair, but CBGD has ridden him with an unfairness like no other. Instead, his retirement is being spent in rehabilitation, confined to a wheelchair or hospital bed and away from his favorite place, home.

Synonym for CBGD=Unfair

After talking with a dear friend about my mixed emotions concerning my Daddy's disease, I decided to begin blogging to sort out my feelings. I'm hoping this will be good therapy for me.

My dad was diagnosed with CBGD about two years ago after having difficulty with his right hand. CBGD is a lot like Parkinson's but without tremors; at first that is what they thought Daddy had. After doing a series of tests, they came up with this 4 letter acronym standing for Cortico Basal Ganglia Degeneration. This stands for "one side of the brain is going away"; in Daddy's case it was his left side.

He worked for 30+ years as an appliance repair man, one of the best! Daddy had always been one of the strongest men I knew until the past few years. He had his strength, just not control. For example, he was holding a salt shaker and his hand opened and it dropped to the table. He couldn't control it. This is how this dreaded disease works. It takes what you can use and makes it unusable (if that's a word). He began to hold his right hand to his chest because he couldn't use it. Eventually this hand would be clinched and frozen to his chest, almost immobile. His legs would begin to slow down too. He walked slow, slower and the last time he walked, he broke his hip and hasn't walked since.

For the past two years we have gone to many different doctors. We've been to a Neuro-Movement Specialist at Duke, who the last time told him, "There's nothing more I can do." What he didn't realize was Daddy wasn't going to give up! He continued to search and search for something, anything to make him better. He even saw a Discovery Channel Health Show that explained a brain surgery performed to Parkinson's Patients that helped. "I want to do that." he said to me. What Daddy didn't understand was this surgery was performed to stop the tremors, not stop the Parkinson's. In other words, it would do nothing to help his disease. Soon, we were on the way to the Veteran's Hospital. Off to Salem, Virginia we went, only to be put back on the same page...nothing. This doctor did perform a brain scan which showed the white matter in his brain was shrinking. Just another dead end. On the way home, he mentioned going to Wake Forest...we haven't made it there...yet.

Daddy has had a lot of pain through this, mainly in his back. He's been to a Pain Specialist to have injections in his spine, but the last one didn't help. We have been blessed though, because Daddy's mind still remains much in tact. He has the memory of an elephant! He has had some OCD tendencies which I've learned are par for the course with this disease. Unfortunately, Moma has had to endure this the most plus my brother, who has been Mr. Fixit for the past year and half.

These symptoms sound awful, but the absolute worst...loss of speech. Daddy knows what he wants to say, only his brain won't allow the connection to his mouth. When he struggles for a word, inside I'm screaming, "Please let him say it! Please let him say it!" This has been the hardest for him. He will sometimes just give up when trying to tell me something or he'll just stop and say, "I don't know." He knows, believe me! He just can't get those words to come out. I cannot imagine how helpless he feels when this happens. I know how frustrated I feel.

Now that you have a window into our life with Daddy and this terrible disease, I will stop for today.

CBGD is a True Four Letter Word!