I am going to go on a long musing indeed but please, dear observers, do not feel obliged to read all this or respond. Honestly I just need a place to 'put' this.
Oh what I have learned in the last 2.5 years. I feel for everyone who is in the early phases of learning about and grappling with this disease, whether for themselves or a loved one. And to think that I say that only after 2.5 years which in many ways is a mere snap of the fingers...and yet sometimes feels like an eternity.
I am one of three siblings whose mom has Alzheimer's (or basically some kind of dementia for which the cause is unclear.) And I am sad beyond belief. As is often the case, as the 'daughter' I am the primary keeper of my mom's care. I have always been very close to my mom, but for a few years, after I got married and was traveling the world and my mom - who had remarried when I was very young - was busy raising my younger half brother and while we still were close, life was busy for both of us.
But luckily for me, I was able to share some of my travels with my mom, having her come visit me in Australia and then taking her to Cornwall, England to the town where the BBC Doc Martin series was filmed. She was always adventurous and I credit my own curiosity and love of exploration to her influence...even though her life decisions kept her squarely rooted in small town America.
Mom was only 74 when she got her diagnosis and when I think of the speed of her decline from the event that I believe precipitated her acceleration, I am nearly speechless. I think there were signs earlier but it became clear that the sense of purpose she had caring for her husband, my stepdad, as his health declined, coupled with his guidance (he was mentally very sharp), kept her steady and less symptomatic. With his passing in May 2017, the door for the disease to take hold and progress quickly was opened.
I am fortunate. Although it has been a really hard and stressful journey negotiating the doctors, the various care communities (AL, MC, skilled nursing, Private Pay..etc. ) , the legal concerns, the selling of her assets, the reality that she WILL run out of money, and I could go on...those challenges - and they are real challenges - pale when it comes to the storm of emotions I go through on a daily basis. I am just sad.
My older brother is sympathetic but totally removed physically and emotionally. My younger brother is able to be more empathetic because he is closer physically and does help with major decisions and POA activities etc. but he is also recently married and just became a first time father. He has his whole life ahead of him and needs to focus on that.
That leaves me, the childless professional, long married and supposedly settled, and physically closest to tend to mom. And tend to her I do, at the cost of having lost one job and risking my own marriage. Thankfully my husband is patient and has his own baggage so we know we are bound to persist and support each other through it all. And to be fair, I choose to be this involved. I don’t know how NOT to be. This is my mom!
But I often wonder if I am strong enough to handle the sadness.
My mom doesn't deserve this. My mom; the sweet, giving, persistent hero in a typical story of growing up in a time when women didn't have the same opportunities, but who did her best not to play the victim and to just be the wonderful lady she is.
No one deserves it.
Up until about 3 weeks ago, my mom would still look me in the eye and I could see the undeniable recognition there. She knew I was her daughter and that I loved her and she loved me back as deeply and strongly as I do her. Not all the time, mind you...but often enough that I could cherish that look, the strong hug in return to my own desperate embrace.
I haven't had that in weeks now and it is tearing me up. When I visit (she is in a wonderful Greenhouse Project community that I fought long to get her into) she seems to know vaguely who I am but shows very little emotion aside from perhaps a little annoyance that I keep asking her questions and trying to get her to engage with me. The transformation from someone who used to talk my ear off at any opportunity to someone who won't answer the phone, and barely talks to me is heart wrenching.
And I have been expecting this for some time now. Right? We - the loved one, the care givers, the daughters, sons, spouses etc. - we all know the story and how we will be forgotten. And yet as much as I have tried to prepare myself for this, it doesn't help.
And remember, my mom still knows who I am. But it is as if she no longer has feelings or emotions vis a vis me...unless maybe it is resentment or anger. And yet I think that too is my just my imagination and anxiety kicking in. But I have seen her respond to other people with some semblance of emotion - fake or real I cannot be sure. She has been adept during her decline at 'hiding' her weaknesses with a smile and some banter. But it seems like she reserves that for people she doesn't know well. I sometimes think that with me she is simply too tired to keep on faking it.
And so it goes. I visit often, hoping for some change, a flicker of passion or comfort that I am there. She continues to accept these visits, as if they are from an annoying, in-your-business neighbor.
And I wonder how long this phase will last and what will the next one look like.
And I miss my wonderful, precious mom, whom I love to the moon and back.