Awakening

Someone recently compared mom and our circumstance to the movie 'Awakenings'.  It's a true story about Dr. Oliver Sacks who discovered that treating patients who suffered from Encephalitic Lethargia with L-Dopa, brought them out of the catatonia they were in.  It starred Robin Williams and Robert De Niro and in the movie, patients in a facility who were literally zombies are given a new medication and they awake and enjoy life again.  I can see the reverse comparison as mom was taken off some of her medications, including something similar to L-Dopa, and awoke from a zombie like stupor to come alive again.  In the movie, the patients eventually experience some adverse reactions to medications and are taken off of them and unfortunately they return to the zombie like state.  This will also happen to mom, over time but not because of medication, simply because that is the progression of dementia.

In the movie, while the patients are awake, they get to experience life again.  That is what we are planning to do with mom.  As she continues to gain her strength back we intend to get her out more and bring her home for short day visits.  It doesn't really seem like much but going out for Chinese food next week will be exciting for all of us and we look forward to it and we look forward to other day trips out again.   So, to get mom ready, my dad is walking with mom everyday and has hired a private physiotherapist to work with her twice a week. 

With the awakening though also comes other concerns.  Mom forgets that she doesn't walk that well and often tries to get herself out of bed.  For that reason she now has a bed sensor in her bed and gymnastics bumpers around her bed so if she should fall, the injury would hopefully be minor and the workers would be able to respond quickly.  She is still very unsteady, even with the walker and in the back of my mind is a fall and a broken hip.  I have known so many elderly people over the years and it seems to me that none of them ever bounced back from a broken hip.  Also in the back of my mind is that she will get stronger and more stable on her feet and one of these days might just get it in her head to bolt out the door.  The facility that mom is in uses sensors for residents that tend to wander.  As mom hasn't wandered because she couldn't, a sensor wasn't needed.  I'm thinking this will be next on the list of things to get for mom. 

Also with the awakening is the denial.   Mom argues daily with anyone who will listen and insist that she doesn't have dementia. When she compares herself to some of the other dementia patients around her, she has a very convincing argument.  She has forgotten the past years and the past 6 months and can't remember that only 5 minutes earlier she was arguing with the same person about the same thing.   There seems no point in trying to convince her otherwise so I just listen over and over and over again and then go to the washroom or take her outside or get her a drink of juice or read a magazine with her.  I try anything to change her thought pattern because there is no reasoning with her.   I have tried to present to her, scientific-like evidence that she can't deny and I try to help her understand that dementia has over 200 different types and sub-types and everyone is different.  It's pointless so I nod and listen and  most of the time within hours she has become more dementia like and not very responsive to anything.  I find myself, at times, and I hate to say this, enjoying the downward fluctuation because there is no argument, no aggression, no anger and it is really almost peaceful.

I wish, I truly wish that we could do what mom wants.  She wants to go home and live and home.  On some days I think we can and I plan in my head the ways in which we could manage.  I get happy and determined and I look up the cost of equipment and private nurses and I haven't done this just once either.  But then I have too have to remember the past years and months and remind myself that with Lewy Body dementia the fluctuations will eventually be lesser in degree and the physical symptoms will gradually return and worsen and she will return to her catatonic state of being.  So I  fluctuate and have to bring myself back down to reality at least a couple times a week.  It's wishful thinking, I know, but in those moments I day dream of things we could do again and places we could go again.  Then in my awakening I am reminded that they are just dreams and I look over to my mom and in her sun downing moments I watch her stare at the wall, not even aware that I am there.