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 partnerto 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.
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.
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.
It’s adapted from the book “Knocking on Heaven’s Door: The Path to a Better Way of Death,” by Katy Butler, and due out on Sept. 10. So, I guess there is if you’re able to leave this world on your own terms whether it be doing anything and everything to prolong life or choose palliative care. As my generation of those born in the 1950’s and perhaps later face the imminent passing of our parents, it’s important to honor whatever wishes of dying they have.
Once my mom approached her 80’s she would comment that “we’re just living too long.” I would say, “Oh, come on, mom. It all depends on your quality of life.” I believe she had a good one…until she didn’t. She had directives of no heroics.
We talked about her dementia, however uncomfortable it was for me because while I acknowledged it privately, I was in denial that she had Alzheimer’s. I wish I had been more honest with myself about it because maybe I would have handled some things differently. Mom had a wonderful speech therapist and we often discussed her condition and progress. But I remember getting annoyed with mom when she couldn’t use her TV remote as I explained certain buttons to her. There were times when either I just forgot or didn’t want to acknowledge the increasing limitations of her cognitive ability. Why? My denial or acceptance was not going to change things. I’m still baffled by it.
One of my biggest regrets is not being there when mom took her last breath.
I had sat vigil with her in hospice for two weeks, about 10 hours a day. During the second week she was sleeping a lot more and less awake. I still talked to her, stroked her hands and face. The night before she passed way I decided I needed to sleep in a little and was going to come in a little later that morning. Where was my head? Her doctor had told me that it was going to happen that weekend. Why didn’t I just stay with her overnight?
The hospice nurses assured me mom was not alone, that they were there. But I wasn’t there. And to me, that makes the biggest difference in the world.
Still, I am grateful that mom suffered no pain, and went peacefully.
I’ve written often about T., mom’s companion of 26 years. In many ways he reminds me of my own father. T. is very well-read, is extremely articulate, has a great love for classical music, and is very loving.
Since mom passed away 16 months ago we’ve kept in touch through phone calls and emails. Conversations are never too long, just a call to say hi and see how each other is doing.
At 98, T. remains quite an amazing figure. He just never ceases to amaze me.
I recently sent him a link to a chamber music festival’s live webcasts so he could enjoy listening to it. I work as a volunteer, providing PR assistance for the Mimir Chamber Music Festival in July. Mom loved the festival and always thoroughly enjoyed the concerts.
Upon receiving the webcast link, I promptly received an email from T. In response to my mention of how much mom enjoyed the festival, T. wrote, in his inimitable way, “If being loved was the only thing she needed to stay alive, she would be with us today.”
It is now 15 1/2 months since mom’s passing. Along the way I have made progress and have had some setbacks in the grief process. This is expected.
Thoughts of mom still flood my mind while I’m driving. Perhaps because it’s alone and quiet time for me. Hindsight being twenty-twenty, I go over choices made and not made. This Monday morning quarterbacking always enters the picture and plagues me but not to the extent it has in the past. That’s progress.
Another bit of progress is that M. and I finally hooked up mom’s big flat screen TV – the TV she asked for shortly after Thanksgiving 2011, saying she needed a bigger screen. It is a very nice TV but it was too personal for me at the time to use it. Maybe because she barely got to enjoy it herself and I didn’t feel right about “enjoying” it. Whatever the reason, I’m OK now about it now.
Along the way my daughters have quietly been observing my progress or lack thereof.Case in point: A couple of weeks ago one of them asked if I had lost weight because the walking shorts I was wearing looked a little large. I replied, “No, they’re are nana’s.”
Well, that sent them rolling with laughter. “Mom!” D. declared. “You were doing so well. I think you’re regressing.” I countered that they just have to be taken in a little at the waist and was wearing a belt. I thought they looked fine.
Yes, I like to keep mom close to me be it with her clothes, her jewelry, pieces of her furniture, her paintings, and most importantly, thoughts of her.