Dementia, The Long Goodbye

Dementia has to be one of the worst diseases to watch happen to a loved one.

For the past 4-1/2 years my 87 year old Maternal Grandmother (Gramcracker) has lived with my two youngest children and me. I was asked if I would be willing to let her live with me by my parents. After talking with the kids, it was decided that we would do it. After all, we all thought she would pass away within a year or so. It would give my children an opportunity to really get to know their Great-Grandmother, and how bad could it be? Little did we know what a physical and emotional toll it would take on us all.

Gramcracker was a very accomplished and widely traveled woman. I say "was" because the Gramcracker of my youth no longer exists. What remains is only a shell of her former self, the once funny wit and great conversationalist are no longer visible except in very fleeting moments.

I did not and perhaps still do not understand all of the complexities of Dementia, what I do know is that it has stolen my grandmother from me. I have been robbed of something that I didn't fathom I would ever miss. I miss her inappropriate questions, her incessant need to know anything and everything about others lives, no matter how personal or embarrassing. Grandma knew best (at least she thought so) and expected everyone to conform to her desires. This was at times a source of silent consternation within the family. She was the epitome of "if momma ain't happy, ain't nobody happy".

The Gramcracker of today lives in an ever constricting and smaller world. Grandma once had a Christmas card list that held over 500 names. I remember well seeing the stacks and stacks of cards and letters she received each year. She was a prolific letter writer, and never forgot a birthday or holiday. She doesn't even know what day of the week it is anymore. The file cards in her address book get fewer and fewer on an almost monthly basis, as friends and family die. Sadly without constant reminders she doesn't even remember they have passed. She has asked more times than I can count, for me to mail letters to family and friends that are long since gone. She can no longer hear well enough to use a phone, and the letters, that were once delivered almost daily have dwindled to a few dozen a year at best.

Having an elderly family member with dementia at home is like having a large infirm toddler, only worse. A toddler at least learns from their mistakes whereas a dementia patient NEVER learns. They are not forgetful, you have to have a memory to forget, they have none. They can be told something one moment, and the next the very conversation is wiped clean as though it never occurred. I continue to learn that it does absolutely no good to argue, the only one upset is me, she won't remember in a matter of minutes. Dementia is cruel, in that person suffering from it, rarely knows that there is anything wrong with them. Those of us not afflicted are the ones that suffer the loss, even if they do sense something is "off" it is only fleeting.

I have had to "grandma proof" my home. There are childproof locks on the cabinets and a lock on the fridge and the knobs for the stove are locked away. She has very nearly burned the house down, by setting something on the stove and then going to bed. She has emptied the fridge and freezer during the night and left it all out to spoil. I have found food stuffed in drawers and inside her stockings and slippers. It is a daily task to track down the things she has taken and moved from one room to another. All the while not understanding that there is anything strange in doing this.

She says she is ready and willing to die, and wonders why it won't happen. She is waiting for Bob (Grandpa) to come and get her. She has told me many times she sees him standing in the hall in swimming attire. To her this means he is just checking on her, as they loved the ocean and spent many years living near or traveling to the beach. She said once he did tell her "come on it's time to go". She told him she needed 5 minutes, his reply was " I don't have 5 minutes" and he left. One more example of Grandma wanting to be in control. After relating this story to me, I asked why she needed the five minutes. Grandma said "a girl needs to look pretty". I told her the next time he comes and says "let's go" she should sit up, get her Ass out of bed and go with him. I told her God doesn't care what she looks like.

This experience of living with Grandma has been one of the hardest things I have ever done. I eat worse, sleep less, gained more weight and have been more frustrated than I would have ever imagined.I have had to drop everything I was doing to care for her, and plans have been disrupted no matter how well planned. That being said, I wouldn't have it any other way. She deserves to be surrounded by some of her own possessions and by people who love her.

I love my Gramcraker, and miss her. The woman I loved is no longer here most of the time. This is why I call this entry "The Long Goodbye". I have been saying goodbye and grieving for years.