Recovering from grief…or do we?

I’ve been away from posting for a long time. I take this as a positive sign of my recovery from grieving. But, do we ever fully recover?

Sure, I know grief is personal and subjective and everyone handles it differently; there is no right or wrong way. Everyone has their own timetable and needs to find their new normal.

But now and then those triggers pop up. Just when you think you have things under control – BOOM! – you see or read something that sets you back. This has happened to me a couple of times post-recovery. I try to avoid articles on dementia and Alzheimer’s because an uneasiness comes over me but at the same time, they draw me in; they’re so compelling. So, I’ll scan over them. Some are upsetting to me because I find myself second-guessing my care, reflecting on “should I have done this or that”, “why was I impatient at times….she couldn’t help it”, and the like.

Such an article, and a beautiful one, written by Dan Gasby set off that trigger recently. He is the husband and care partner to supermodel, restaurateur, magazine publisher, celebrity chef, and nationally known lifestyle expert  B. Smith, who has younger-onset Alzheimer’s,

The loss of my mother is still relatively new. In February it will be four years. I was depressed for the first 2 1/2 of those years during which I had a daughter and a son get married and welcomed two beautiful grandsons into our family; I now have a third due in a couple of months. Most days are good. When I think of my mother now I think of happy and fun times. I’m not bogged down by those deepest feelings of loss. That is a sign of recovery. I believe I have found my new normal.

Still, a day doesn’t go by that I don’t think of her or miss her.

Three years and coping

It seems a little surreal and hard to believe that today marks three years since mom’s been gone; seems just like yesterday and an eternity at the same time. I received sweet texts this morning from my daughter-in-law and friend, and phone calls from my daughters. I’ll visit mom later today and go to minyan tonight even though I went last week for her yahrzeit, the anniversary of the day of death in the Jewish calendar.

I went back into my email correspondence with Ted, trying to find something. I often referred to Ted as “T.” in my writing, and came across L’s exquisite eulogy that so embodied the essence of mom.

During the heavy grieving period we all cope differently. For me, it was wearing mom’s clothes and using her nail polish on my toes so when I looked down at my feet it was like looking at hers. And today, I’m wearing one of her sweaters and a pair of sandals that I bought with her.

A day doesn’t go by that I don’t think of mom or tell her how much I love her. As Ted so poignantly and elegantly told me as only he could, “nothing dies that is remembered.”

In that case, mom is very much alive in me … and always will be.

Stumbling and Recovery

Something very strange happened to me last month. Or maybe it’s not so strange. For all the positive steps moving forward in grieving the loss of a loved one, you can stumble. And that happened to me last month.

I still get the shakes when I see the word “Alzheimer’s” in a heading or within text. Still, I read a review of “Still Alice” in The New York Times last month. But it was the readers’ comments that hit me hard.

As I read some of them, I started crying. They brought me back to my care-giving experiences. Not only did I share many of the readers’ experiences but it caused me, again, to question my care: Did I do everything I could? I knew mom had dementia but did my denial of Alzheimer’s hamper my care-giving? Should I have quit my job to be with her all the time? I still see her big smile and eyes light up when I would stop by for breakfast on my way to work. Could I or should I have done things differently? My friends and brother will give an emphatic “No!”

I think care-givers always have these doubts, especially after losing their loved one. But these comments hit such a nerve in me and set a trigger off so much so that I contacted my local Alzheimer’s Association to look into a support group. And as I’m on the phone with the rep, I just started bawling. My emotions were just so raw – something not experienced for a long time as I was doing so well.

Well, after calling the group’s facilitator and finding out she was no longer there, I guess I got over “it” because I chose not to follow through and lost interest. I’m still thinking of contacting them to find a group. In the grieving process one thing I have found, at least for me, is the need to talk. I’m sure it’s the same for most.

PS I have not yet seen the film … but I will.

PSS Gratefully and thankfully my daugher is fine. Her brain lesion is gone, and one month after her second MRI in December, she went on to run the Houston Marathon and a PR – 4:20:07! https://iloveluci2.wordpress.com/2014/09/29/together-again/

Driving as a mental hazard

Driving has become a mental hazard for me. This is the time I mostly reflect and think about mom — the good times but mostly the last couple of months of her life when things started going downhill.

Nearly five-and-a-half months later I’m still playing out various scenes in my head, wondering if I took appropriate action when I noticed changes in mom’s condition. I know I did – taking mom to the doctor, hiring aides and then increasing their hours for more care, stopping by on my way to work, stopping by on my way home from work, and then finally planning to work remotely from her room to be with her and to observe her, but that never happened since she wound up in the hospital. If I know, deep in my heart, that I did do the right things, then why do I still feel this way?

The signs of behavioral change were there – hygiene accidents, forgetting how to answer the phone (but not all the time), giving her a toothbrush and gently redirecting it from her forehead to her mouth, telling me “I’m not a dirty person” when I tried to get her to wash up for bed one night, telling me one evening that she bought the place where she was living for me. These are the scenes that keep playing out in my head, scenes that I can’t seem to kick.

We never talked about death. We never really openly talked about Alzheimer’s – I always referred to it as dementia (which it was) – except for the times she wondered, “why me?”  I was afraid. I was afraid  to say she had a brain disease, but she knew her dementia affected her speech, memory and handwriting. Did she know she was dying? I didn’t really think she was dying, at least not yet. I know Alzheimer’s is a fatal disease but I never looked at it like that with her. Was I in denial?

I think it’s time for another visit with Dr. R.

Acceptance

I have only recently come to fully accept that mom suffers from Alzheimer’s. I know that dementia takes different forms and the one mom has is on the Alzheimer’s track, but never once have I admitted to myself or anyone for that matter that mom actually has Alzheimer’s. I’ve always said she has dementia as if to shield myself from the truth; dementia camouflaged Alzheimer’s.  It’s a truth that I didn’t want to, couldn’t admit to, until now.

Why now? I really don’t know. Maybe it’s from re-reading an article on dementia vs. Alzheimer’s and the fact that dementia is a symptom of Alzheimer’s and  that Alzheimer’s is not part of the normal aging process. It’s a disease.

I have seen a bit of decline in mom on one level mostly – speech. It has become frustratingly and increasingly more difficult for her to express herself. Word finding has also become worse. And she knows it. She says she’s stupid. I reaffirm to her that she is not, that she still has all the same knowledge she has always had but it is now difficult to retrieve.

She’s embarrassed. I told her don’t be. She’s not doing certain things because she wants to. It’s the dementia.

While I have personally accepted that mom has Alzheimer’s, I cannot and will not say that word to her. I still can’t. Not yet. Probably never.