The Sisterhood of the ……
Haven’t had time to post much – been familiarizing myself with my new-found membership in the “Alzheimer’s Primary Caregiver’s Club”. Which is being done long distance and is even more infinitely challenging because of it. Mom definitely is showing signs and it is unlikely at this point, to get a diagnosis to confirm because of her mental state. She is battling severe depression and is in no shape to be told that she has what her mother had.
Alzheimer’s Diagnosis – Not So Much
According to an extensive report released this week by the Alzheimer’s Association, less than 50% of Alzheimer’s patients are actually given a diagnosis. That number is actually 45%.
Spending time with my mother this past week and I can understand why. Many will think oh well I would want to know – I would want to have an aggressive treatment program etc. Many have not just lost a family member to Alzheimer’s. We just lost my grandmother, her mother last Christmas after a long battle with this disease. My mother was her primary caregiver – by her choice. To drag her now in the midst of her grief to the doctor to tell her something that she already knows and is aware of doesn’t serve as much purpose as people might think.
For the record there is no cure for this disease. Contrary to the imagery commonly associated with Alzheimer’s there is a process one goes through long before you don’t remember faces and people. Throughout the entire process with regards to my grandmother – she would not remember on occasion but she was very much aware and she knew what was happening to her.
So marching my mother down to the doctor to get a diagnosis when she is terrified right now of her own mortality and her changing limitations really is not as helpful as it might appear to be on the outset.
Alzheimer’s – Being A Caregiver
Saying I was not prepared or ready for this is beyond being an understatement. No one I believe can prepare for this. There is no way to be “ready”. The construct within which all this is taking place adds more challenges to an already challenging situation. I am an only child. There are no other “RELIABLE” family members that can help. There are however, a proliferation of trifling, ne’er do wells who smelling blood have suddenly become “interested” when they were no where to be found when my grandmother was alive. Thinking perhaps they can share in some imagined bounty – they have slithered out from under the rocks they were hiding and add to a sense of disquiet and concern.
My mother lives out of state and at some point the living situation will have to change. I know this and I believe she is sensing this based on some of her comments and reactions. However again right now to have a conversation about her packing up and leaving her house – would not be productive ultimately.
So I spend half the week running back and forth between mom’s house and my place. It is understandably exhausting but what other choices do I have?
In order to deal with this situation I have had to literally shut myself down. The result of this has been manifested in bouts of insomnia, moments of feeling abjectly and totally alone, dread of the days to come and all manner of scenarios designed to make even a rock cry.
Alzheimer’s – Collateral Damage
Casualties to this current situation include: my ability to work, running back and forth unless you are fortunate to have a telecommuting type position is impossible. This makes everything else somewhat impossible by osmosis. I have started transitioning to free lance work but that has not taken fully off yet and so the word “wretched” comes to mind often when contemplating my current situation. There were not a lot of friends prior to this taking place right now socializing is hard to manage when you are liable to have to drop everything and go running. The thing that sticks in my mind in terms of casualties or things missing for me right now – is hugs…and TLC. Neither of these have I partaken of in so long that I cannot recall the last ones. I soldier on however, and fight to provide mom with as much moral support as I can muster.
In The Still Of The Night
There are endless days spent calming her down and allaying her fears and in the few moments I have to myself which are usually in the middle of the night – I find myself wondering how the heck I am going to manage. Then feeding the Insomnia monster I wind up getting up and going to find something to do to take my mind away from that kind of thinking. Lest one be dismissive – I have re certified for all my web development certifications because of this and will probably get at least a few more on the way. Rather spend my sleepless nights learning something – than crying alone in the dark.
For the nights and times this doesn’t work and my eyes are literally burning with unshed tears, there are a couple of options. One is the Alzheimer’s Association website which has forums, chat rooms and more information than one can ever take in all in one place. There are other people who are in the same situation and it is a way to communicated and socialize after a fashion with people who actually can understand what you are going through.
On the other occasions when I am feeling low and not up for even seeing the word “Alzheimer’s” I head over to a site called 7 Cups of Tea. It is the brainchild of a techie who wanted to provide a safe, online environment for people to be able to come and have someone to talk to, a listener if you will – which is one of the main parts of the site. There are group chats as well which are very strictly moderated in order to provide an environment that does not resemble chaos. The listener feature is run by volunteers who have to go through a training program prior to being able to engage with the site visitors. It helps – when there is no one to talk to or you are just needing a sounding board – which is often when dealing with the issues surrounding being a caregiver for an Alzheimer’s patient.
I am by no means an authority on how to deal with the issues surrounding this disease and having dealt with it in other family members does not, contrary to popular belief make it easier. In fact having dealt with major chronic debilitating illnesses does not do anything but wipe one out so there’s that. I can say that right now I am in one day at a time mode. Knowing what is coming gives me at least the opportunity to proactively deal most of the time. When I am at least in a position to do so bereft of feeling overwhelmed which happens on occasion. Sure I get scared and I worry, but i get up each day and continue on regardless….no other viable options are available.
It is as they say, “Necessity is the Mother of Invention”. Needing to find ways to cope and deal with things will make you a real soldier real quick whether or not you wanted to enlist…