11.16.2009

On being a family

Our family has been touched with what we are guessing is Alzheimer's and I have to say that I am not a fan.


When I was pregnant with the boys, we joked with my mother-in-law that she should quit her job and take care of them for us. She took it quite seriously and actually did just that. She decided that she wanted to get to know her grandsons and spend as much time as she could with them. And so she quit her job, sold her house, and moved in with us. She was here for us when the boys were little, allowing me to go back to work. She was here when I was very very sick and in the ICU for three months in 2007 - taking care of the boys day after day while Todd tried to spend time with me. She has been here for the first 4 1/2 years of their lives - playing with them and watching them grow.

About a year ago we started noticing some things that were just a little off. She seemed to be making poor decisions (getting lost on a trail with the boys and getting a ride back to her car with strangers), getting lost occasionally (came back from a trip and couldn't find car at the airport for a few hours), forgetting little things like where her keys or wallet were. They all seemed like they had fairly sound explanations (poor judgement, typical memory stuff we all experience, etc) and we didn't chalk it up to much more than that - although we started paying closer attention to things.

In the past 6 months we started noticing more and more that her confidence seemed to be waining, she didn't seem like herself - more quiet, less interactive, less involved at her church. And then even more recently we started worrying about her ability to take care of the boys. We heard about several instances from neighbors where she wasn't really handling them well, or didn't know what they were doing at all. Things started adding up and we decided that Roark and Cole needed to be in preschool full time with an after school program. We told Grammy that we were doing it for the boys - they need more interaction, need to learn more before kindergarten. But we didn't really confront her with what we really thought...Alzheimer's. Todd did call her doctor and asked him to try to schedule a physical to evaluate her, but we are not sure that ever happened.

Todd finally had to tell her that she needed to see a doctor (a few weeks ago based on more things happening) but that has not yet happened. She has an appointment this Friday (if it doesn't get rescheduled again) - but we are still really worried about what will happen before then. This past weekend she seems to have hit a wall, or rather is headed down hill. Perhaps it is caused by us putting the boys in full time care and disturbing her routine? She is now getting lost when driving to familiar places, and worse, not calling anyone for help - just continuing to get more and more lost - further and further away.

Part of this disease (if that is what this is) is paranoia and doubt. She doesn't think there is anything wrong. In her head, there is a logical explanation for how she ended up driving 9 hours out of her way on Friday night, or how she ended up driving 6 hours yesterday on her way home from lunch. It is ugly and difficult and just not fair.

I took care of my mom when she was sick and dying from cancer. It was difficult and horrible and I spent a lot of time being angry with her for being sick and for making my life so difficult. I was young, so don't be too hard on me for being a selfish little bitch. I then spent years feeling guilt for feeling angry -so I guess I got what I deserved after all.

Some of these familiar feelings started seeping through the cracks recently - "this is HARD", "I just really want things they way used to be", "I don't want to have to deal with this"... and then I realized what was happening, kicked myself in my own butt, and soldiered on - because Barbara is a good person, who loves us and who we love too. She gave up her life to be part of ours, part of the boy's lives. She is a wonderful, sweet, loving, kind mother, grandmother, friend - and this is tragic and sad, and not what ANY of us want. I am sure it isn't close to the life she envisioned when she signed up to watch her grandkids.

Next up: get her in to the doctor and find out what we can do. Is this Alzheimer's? Dementia? The result of some heart condition causing lack of oxygen to the brain? What can be done? What do we watch for? What are the risks? What is going to happen next? We just really need to understand what the problem is and what options she has for dealing with it. We need to give it a name so that we can talk about it, as opposed to pretending it doesn't exist.

In the meantime? We continue to support her, spend time with her, be patient, be loving, be a family.