If you have been keeping up with my recent posts, then you know that my family had a tragic loss two months ago when my cousin, Drew, died unexpectedly. Through processing this with my family, I have learned that the grieving process is very individualized. Some people seemingly zip through it, while others seem to take years. I have also learned that the process of mourning a loved one can sometimes start while they are still alive.
My husband’s grandmother has Alzheimer’s. For the last eight years, her mental health has been on a slow and steady decline. Up until recently, though, her physical health was not an issue. In spite of her initial dementia diagnosis (later changed to Alzheimer’s) Grandma has gone to the beach with us every Summer and has fiercely held up her end of the family card games. Over these eight years, we have witnessed small changes in Grandma’s ability to remember things. But she is great at covering. She’ll ask us when we are planning on having children and then when the we remind her about our daughters, she’ll laugh and say something like, “I meant MORE children.” She will refuse help walking up and down stairs reminding us that she’s been “…living in my own house longer than you’ve been alive.” She laughs off not knowing what time it is or what day of the week it may be, chalking it up to too much going on to keep it all straight. We are so fortunate that Alzheimer’s has not changed her personality. She is still just as happy and easy going as ever. I know this is not always the case with Alzheimer’s patients, and I am so very thankful for it.
It has only been in the last few years that she has really stopped being independent. She still doesn’t want to give up her home, so she spends some weeks at her own house with my husband’s aunt and the other weeks at my in-laws’ house. She no longer drives, but instead of taking her car away, we just never got it fixed last time it broke down and talk to her about how nice it is to travel places together. She doesn’t remember to eat or take her medicine, so her children have lovingly put systems in place to make sure she only takes what medicine she needs and eats nutritiously. Her short term memory has been gone for a while, but she has held on to the long term ones. It is always great to hear stories from her childhood and her days as a young, married woman. Recently Grandma started falling. This is a normal part of the progression of Alzheimer’s as people have a hard time balancing and the body is slowly forgetting how to walk. Her recent falls, however, have taken her disease from a slow and steady progression to a steep and rapid decline.
We went to visit her for Spring Break this year and it was the first time we had to talk to our girls about how Grandma might not remember their names. We told them how much Grandma loves them and that her brain just isn’t working quite as well as she wants it to. She was still telling us stories about her husband, but it was the first time I had heard her tell them in the present tense. We tried to play a card game together one morning (people with Alzheimer’s typically do better earlier in the day) and somehow she managed to win a few hands in spite of forgetting what the trump suit was or some of the rules of the game, but it wasn’t the same. She can no longer get around without a walker, but occasionally she forgets that she needs the walker. We have learned how to gently remind her of these things. We never tell her someone she loves died a long time ago. When she asks when she will see them, we just tell her it will be soon and move on. We start most sentences with things like “we have talked about this” or “I want to remind you.” She is blissfully unaware of the caretaking she requires and she really doesn’t know what she doesn’t know. My husband’s mother, uncle and aunt have made countless personal sacrifices to keep her in her own home or with family and she will never be able to say thank you or recognize those sacrifices. They have truly modeled for me what it means to be family. My own children have made sacrifices as well. They have given up time with their grandparents because it is just too difficult to travel with Grandma. The worst thing you could do is to take her out of her familiar surroundings, and so their own grandparents don’t always make it to recitals or school plays. The girls are understanding about this, however, and choose not to dwell on what they miss, but rather relish the times they do get to see them. I am so very proud of how they recognize the need in the family and focus their energies there.
No one knows how long it will take for Alzheimer’s to take Grandma away from us physically. That is one of the toughest things about this disease. It is unpredictable. But I do know that our time with Grandma, the grandma we all know and love, is already dwindling. We are mourning her leaving us long before her death. I do not know if she will know who I am the next time I see her. I’m not even sure she will know who she is. So we will make the most of the time we do have and celebrate the life she has lived. When she forgets us, we will gently remind her. When she doesn’t know that she loves us, we will love her. When she needs to talk about the past because it is all she remembers, we will let her. And in between visits, we will fight to learn as much about this disease and to find a cure.
I was so privileged to get to attend the local Alzheimer’s benefit a few weeks ago. Our “small town” raised over half a million dollars in one night to fund Alzheimer’s research and take care of people in our area with this disease and provide respite care for their family members. I was thrilled to get to come home after this event and share with my daughters the wonderful things that money would help to do. I was excited that they understood it was helping people like Grandma. If you don’t know someone who has Alzheimer’s yet, chances are at some point you will. It has touched our family in an all too real way, and we are learning to mourn the loss of our beloved Grandma while she is still with us. Just another step in the journey of talking to our children about the facts of life – and death.
Four Generations – May, 2012