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!

The long good-bye continues

Mom has defied the hospice staff so they have stopped predicting, although today there are very much telltale signs of which I will not go into detail.

She has now lapsed into a coma and is resting very peacefully. I told my brother to make plans to fly down tomorrow, which will mark three weeks – just as Dr. K. predicted on Jan. 20, but later in the day told him to hold off until I call him. Dying is not a precise science.

Mom’s fortitude is quite amazing. What many don’t know is that both my mom and grandmother had a stubborn streak. Not a big one, but enough of one.

The ever wonderful Dr. K. called hospice today to see how both mom and myself are doing.

This last week has been particularly emotionally draining on me. I even left about an hour earlier than I normally do. I simply cannot see mom like this. This is  definitely not her as I remember her nor do I want to remember her this way

So please forgive me, mom. I might get in a little later than usual tomorrow. I know you would not want me to suffer like this and it is just too painful for me to see you – my beautiful mother – like this. I know you know I will love you forever.

Processing it all

Friday, February 3

There’s so much to say but I just haven’t had the energy to pound it out on the keyboard.

I have had the good fortune to work bedside this week by my mom. As I look over, she’s sleeping peacefully and comfortably. While it’s been difficult to see her decline, I will cherish this time.

During the week she’s been at different levels of awareness. For instance, this morning as I bent down to kiss her good morning and tell her I was back and I loved her, she opened her eyes, was able to track me and give me some kind of nod of recognition and a small smile. I fed her about five ice chips and watched her as it slowly dissolved in her mouth and she slowly drifted off to sleep.

She slept most of the day – a combo of her current condition and being on a pain med to make her more comfortable. It’s not that she’s in any pain, but is exhibiting what they call “terminal restlessness,” where she will squirm in her bed and raise and lower her arms. The pamphlet says this is due to lack of oxygen in her blood.

This time I’ve been able to spend with her has given me not only precious remaining time with her but also the ability to process it all and added time to say good-bye. I know the processing has worked because I’m able to contain my crying to a degree. So why am I crying now as I type this?

A hard, sad week

It’s Thursday, Jan. 26, my brother’s birthday, so happy birthday, R.
I’m writing this from my mom’s hospital room. I’m in disbelief at how fast she has deteriorated in just a couple of days since Friday when she was admitted to the hospital because of dehydration and a low-grade fever.
Here’s the timeline of events:
Sat., Jan. 14 – We drove into Dallas to see J & R’s new apartment and to see the newly engaged D and S. Mom did well with the walker albeit walking slower than usual. She still kind of had an intermittent glassy, far away look, something I noticed a little last week. She did fine with our visit though.
Sun., Jan. 15 – Stopped by mom’s apartment after lunch; she was sleeping. She slept the entire 3 1/2 hours I was there. BP has been low.
Mon., Jan. 16 – Now have fairly regular aide, TJ. Seemed like mom was sundowning a little tonight.
Tues., Jan. 17 – Appointment with Dr. K. Everything sounded good. After looking over meds, saw that her normal dose of 2.5 mg of Norvasc was increased to 10 mg during her last hospital stay in December and never reduced back, which could have contributed to her lethargy and zero energy. Mom was ambulatory, using her walker.  Mini mental status test however, showed a 13 point drop in 13 months. In 2010, she scored 19. Today, 6.
Wed., Jan. 18 – I stopped by during breakfast. She was sitting at her table in the dining room eating. Her face lit up when I walked in. Had difficulty talking. We visited for a little while, then I left for work.
Thurs., Jan. 19 – Spoke with Dr K re current issues – speech, lethargy, etc. Dr. K suspicious mom has had some TIAs. I stopped by on my way home from work. She was sitting in a wheelchair in her room in front of the TV with her companion. Mom really wasn’t watching, and looked like she dozed off a little. Companion told me she refused to get ready for bed. At that, the companion and I assisted mom to get into her pjs and wash up.
Fri., Jan. 20 – Because I was concerned about her Thursday night I stopped by Friday morning on my way into work. The wonderful companion, TJ, who Dr. K had independently recommended was with her. She was dressed but laying on her bed with no energy. TJ and an aide helped mom into the wheelchair and took her to her small glass table for breakfast. Her appetite has dwindled. I’m pretty convinced mom might have has some TIAs. Faraway distant look in eye but understands and knows who I am. She was able to squeeze my hands when I asked her. Mom unable to walk well or dress herself. Increasing care to 12-hr shifts. Working from mom’s apartment all next week. Her BP this morning was excellent – 140/70. Got call from home health nurse at 3:30 that mom was very dehydrated and running a low-grade fever 100.9. Dr. K ordered blood work but couldnt do because of dehydration. Had ambulance take mom to hospital where I met her in the ER. BFF C. met me there, too. Husband J. also came by. I have the best, supportive friends.
Sat., Jan. 21 – My brother flew in and L. picked him up at the airport. C. spent most of the day with us at the hospital. Mom slept on and off. Seemed she would stay alert between 5 minutes and if lucky, 10. All of her labs came back fine, so we were in a quandry about how/why she got like this. Dr. B. basically said it has a lot to do with the debility of old age coupled with her advancing dementia. Mom was able to engage in short conversations and later that evening we skyped with D. in Houston via iPad. Gotta love technology. I also did some wedding planning and got confirmation for the band we wanted.  C. spent most of the day with us and brought us a bunch of healthier goodies to eat. She understands what I’m going through having lost her mother about 14 years ago to lung cancer.
Sun., Jan. 22 – I was back at the hospital by 8 a.m. and mom was up. Her eyes were open and continued to be able eat her meals OK. A neurologist came in and we decided to proceed with an EEG. My brother and I stayed ’til about 7 and then went out to dinner.
Mon., Jan. 23 – My brother R. and I returned to the hospital and remained there during the day. R returned to NY tonight. Today mom was sleeping a lot more with few periods of alertness. Mom was moved to another floor she was no longer considered a cardiac risk. I’m grateful to be able to work remotely from the hospital this week.
Tues, Jan. 24 – Mom is sleeping much more and awake less and less as well as eating and drinking less and less. I met with various people from hospice as we decided to supplement her at-home care when she’s discharged with hospice care. However, with less and less awareness of her surroundings, when she’s discharged, probably on Friday, she will go directly to a hospice facility nearby. Mom had an EEG yesterday. The doctor is putting her on Keppra IV for the seizures that were indicated.
Wed., Jan. 25 – I freaked when I walked into mom’s room. She wouldn’t respond to me, wouldn’t open her eyes and the floodgates opened. It’s been one big sob fest. Turns out the Keppra simply zonked her out. She really ate or drank nothing today. R. and D. talked to her on the phone and she  responded. She was even able to have a short conversation with D., said her name and “I love you, too!”
M. came up in the afternoon and BFF L. brought dinner and stayed with me for 2 hours until we both left at 8 p.m. Having tragically, suddenly and unexpectedly losing her own mother last March when she suffered a stroke at her son’s wedding, she knows and understands what I’m going through as well as the wonderful benefits of hospice. Later this afternoon, mom was discharged and transported to hospice. Huge kudos to the hospital staff caring for mom…and me.
This has been the most emotional journey I’ve undertaken and grateful for the wonderful friends and family I have.