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.

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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/

Second Guessing

I don’t know why I keep doing this to myself – always second guessing some of the care decisions I made for mom.

For instance, I subscribe to caring.com, which provides helpful articles and tips in the caring of family members in various stages of dementia. One of the articles today focused on what to say to the end-stage dementia patient while sitting vigil. Its recommendation, which I already knew and did, is talking to the loved one and tell them how much they meant to you, what you’ve learned from them, assure them that everyone will be alright, etc.

I did talk to mom. I did tell her repeatedly how much I loved her, how much she meant to me, what a wonderful mother, grandmother, mother -in-law she was. Told her that I know she will be there at D’s wedding in the fall. So why don’t I feel this is enough? Maybe because I never got any real acknowledgment that she was hearing me but studies have shown that a semi-conscious person hears you. Even someone in a coma.

Then I went on to read a story about how to find the highest-rated memory care facilities in your area. Mom’s facility was not there. Other locations of it were but not the one she was in.

Then I reasoned that when I moved mom here she wasn’t anywhere near as bad as she became. When we agreed that assisted living was necessary, I half-looked into these other facilities that focused more on memory care but mom was already comfortable where she was and a number of people she knew had made a similar move from independent living to assisted living. I kept reading change isn’t good for those with dementia.

However, her transition into assisted living was not a good one. Two days after she moved there she fell, while with me, and fractured her pelvis. A two-week hospital stay was  followed by two-months in rehab. Two more short hospitalization followed later for bronchitis, and then her last hospital stay before going into hospice.

I think it’s time for me to make an appointment with Dr. R.

The long good-bye

It’s been a tough weekend.

I really never know what to expect day-to-day but it seems like Friday was the last time mom and I looked into each other’s eyes. She’s been sleeping the past two days but seems like yesterday she gave a faint up and down nod to me when I asked her a question.

D. came up from Houston Friday night and she and I, along with L. sat with mom Saturday. The girls visited for about an hour this morning as L. had to take D. back to the airport. It’s been hard on them. They were very close to their nana.

I hated for them to see her in this state but D. and L. said they basically said their good-byes to her last Saturday when she was alert and awake more and enjoyed seeing the pics of D. in some wedding dresses.

The hospice staff are nothing short of angels. The care and tenderness they continue to give mom and myself is unmatched.

My friends have been my rocks, calling, texting, sitting with me. Unfortunately, most of them have also lost their mothers as I am about to lose mine. My family, too, has been incredibly supportive – cousins emailing, texting and phoning me. My brother speaks to mom daily and we are both so, so grateful that he was here two weeks ago when mom was up and alert albeit in the hospital. I’m glad he has those memories.

J. came by this weekend too. I just hate for my kids to see their nana like this, but she looked very peaceful and comfortable.

I’ve been in touch with T daily. It’s so hard. He loves mom so much and I know it pains him so. I still play the song he recorded for her to listen to. T.’s concerned about me taking care of myself and not getting enough sleep or food. Sleeping has been so-so. I really don’t have much of an appetite and know I’ve lost some weight but that comes with the territory.

I have my highs and lows when I’m sitting with mom, looking at her. I never thought I’d ever see her like this. Even though she can’t respond to me I can still talk to her, tell her how much I love her, caress her hands and face and  put my face next to hers and hug her. That has been a big comfort for me.

I know she is showing signs of getting near the end and it is really just too unbearable to think of.

I love you, mom.

Mental Fatigue

I’m mentally exhausted.

I’ve been concerned about mom since her return to Assisted Living and her ability to do certain things on her own from what I’ve seen. There has definitely been some cognitive decline and this naturally concerns me.

Mom has had episodes of low oxygen levels that naturally cause her to get a little dizzy but to also lose leg strength, where her legs just buckle under her. This happened to her last week during PT and on Saturday when we were out, and required her to be on O2 for the rest of the day and night. She was better on Sunday.

I had a lengthy talk with Dr. K. this morning about these things and other concerns. She’s requested her current meds since the hospital changed doses on some of her BP meds to get her pressure under control. And any change in meds or the introduction of new ones can definitely have an effect on someone’s fragile physiological state like mom’s. She’s also ordering more regular breathing treatments.

Dr. K. agreed that it’s still too early to tell anything definitely since mom is still undergoing a recovery phase from her most recent hosp/rehab stay, but there has definitely been a cognitive decline in her functioning. In fact, for mom, every three days back in her normal environment is the equivalent of one day for a “normal” person, so this is going to be a long recovery phase. Dr. K. also agreed and recommended that mom get some assistance during this period. It might even be indefinite, which wouldn’t surprise me.

Thankfully, Dr. K walks on water for mom and she can do or say no wrong. When I told mom about getting a companion to help assist her in the morning and at bedtime, she kind of grunted. But when I said that Dr. K. strongly recommended it, mom said, “OK.”

I also spoke to AL’s activities director to talk about encouraging mom to get involved in some of their programs and as a relatively new resident, to just do a little more hand holding while she acclimates to yet another new environment. She was sympathetic and receptive.

We’ll see how things go and hope for the best.

Stop the world – I want to get off!

The title of this 1961 play, later adapted for film in 1966, is pretty much how I’ve felt lately. Again.

Like the circus backdrop of this production, I feel like I’m running around in a 3-ring circus – between work, mom, my bucket list, holiday anticipation, etc., etc., etc.

When does it end?

Mom got discharged from the hospital yesterday and back in rehab where she got a celebrity welcome. It was sweet and the nurses and aides swooped in to give mom a hug. She’s not thrilled with having to share a room and is on a wait list for a private.She still has a bit of congestion and having breathing treatments four times a day. I’m hoping she won’t have to stay there for more than two weeks.