I know that I am not getting Alzheimer's. I have googled the signs and symptoms enough times to realize that. Still, there are some days that I just can't remember why I walked into a room or if I locked the door or who I was just about to call. I have read over and over again that these occurrences are just part of the normal aging process that people in middle age start to get. But still it's disconcerting. Especially because caregiving for a special needs adult requires so much memory: doctor appointments, medicine schedules, school or daycare requirements, grooming details, automatic vitamin deliveries, medication refill reminders. Well the list goes on and on.
I am really extremely organized. I have done everything I can to create schedules, appointment reminders in my phone, Post-Its galore. I have pill organizers, visual schedules, white boards for the other caregivers to alert me to items they are running out of, and other tangible tools to keep it all straight. And for the most part, these strategies work well.
But what has me boggled is how much it is necessary to rely on these tools. As time progresses, the need will increase, I realize that. But what will happen when the day comes when I don't remember to input all of these appointments into my phone or setup the daily medication dosages. Who will do it?
A couple of times, when Blake was younger, I brought him to a respite home for overnight visits when I had to travel for work. Both times, they screwed up his medication. And these were nurses. Sorry to sound paranoid, but this really happened. I think I still have Post Traumatic Stress from these occurrences.
So who will do it?
I just read something on a listserv that I haven't been able to stop thinking about. On the subject of what will happen to our children when we are gone, a parent wrote in that he basically doesn't worry about it, because he will be dead. I thought that maybe he was just some random person with a unique way of looking at things. But then a couple of parents wrote in that they agreed with him. I was so shocked that I started thinking about it. Is it possible that there are many people who feel this way, but just don't express it? Perhaps, they don't worry about what won't affect them directly? Do you think this is the case?
I know you can accuse me of over-thinking on this subject: Who will take care of our kids when we are gone. But in my defense, that is my job as a blogger and a writer. Right? But are there so others who just say whatever?
3 comments:
Val, this haunts me all the time. I too was told this by a psychiatrist and was enraged. It si going to be so traumatic for them when we are gone. i know my son does not understand death and I wonder all the time what will he think when I am gone. will he think I abandoned him? I too do all that needs to be done as far as medications ordering preparing and dosing them out. I do it for 4-6 weeks in advances there is always a few weeks on hand in case. I also have it written out in his medicine bag. But I try hard not to think about what will happen when I am gone it scares me so much. I have always imagined that if I know I am going to die I am going to take him with me. I would rather know he had a happy shorter life than to know what happiness and security is and then to have to deal with people who will not treat him right. there are so many horror stories of things that get done to kids like ours. I know it is not good to avoid thinking about it but it causes such internal panic. I don't know how 0people think because I think a lot of us are scared to talk about it.
That is why we have to build residential communities for our children. They must have a place that they can live in a safe and secure manner. One good thing that came out of Always Leave Them Laughing is that it caught the eye of some influential people, and now we have a wonderful group of movers and shakers who are starting the planning process to build a residential community in Florida
I thought I was the only one--now I found you. Right now it is 4:45 am--yes my day begins early--did not know there was a name like scaccer to describe me--but how can I get your LifeCare book??
My first name is VEE
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