Apologia for these journals:
They are not about taking care of a relative with moderate to severe Alzheimer's/senile dementia.
For an explanation of what these journals are about, click the link above.
For internet sources that are about caring for relatives with moderate to severe
Alzheimer's/senile dementia, click through the Honorable Alzheimer's Blogs in my
links section to the right.
It is finished!
At 7:09 this morning my mother, My Ancient One, my That Girl, died.
SPOILER ALERT: The rest of this post may, for you, spoil an upcoming meal; your current attitude of the day; your attitude toward me as my mother's daughter, or companion, or caregiver, or as a person. I will be devoting the rest of this post to talking explicitly and in detail about the hours leading up to my mother's death, the death, and anything else that comes to mind as I review my mother's and my morning and her death. Be wary as you read.I returned to my mother's room immediately after publishing the last post. From then until a little before 0600 I sat in the wheelchair snugged up to her bed, held her hand, stretched my legs out on the lower half of the bed and rested my feet against her belly. A few times I tickled the underside of her fingers with mine and she tickled back. I rubbed her back a lot, too. Despite the morphine, her breathing was becoming alarmingly labored, although remaining between 20 and 24 breaths per minute. Her chest was heaving as though she was on a ventilator. Her right eye, which has been permanently edemic for some weeks, now, was open. Her left eye was buried in the pillow on which her head was resting. I think I asked her only one more time if she was "in pain", to which she replied, in a gargled sort of voice, "No," and, as well, if she was comfortable, to which she replied, with no gargle and somewhat louder, "no". In the meantime we kept each other company, I tried some more ice chips on her but they slid out of her mouth, she was no longer able to latch onto the eye dropper or the spoon for water, so I abandoned both of those. She was sweating a fair amount, although she didn't feel feverish, I fairly frequently lifted her head and wiped the sweat from around her face and neck.
I also talked with her, as I have been regularly throughout the last few days, about how honored I feel being her companion and caregiver, how much I admire her endurance and her fortitude, especially over the last few days, and did a lot of reminiscing about how "what a wonderful adventure" our life together has been...including "this very moment". I told her I loved her a few times, but, mostly I continued with my adventure-long habit of talking with love about our "unbeatable partnership". I also said, at least a few times, that if she wanted to continue on here for awhile, I would be with her all the way, no matter what, no matter how, no matter where. But, if she wanted to go, go, I've always known that was coming and I've always been okay with her own timing of her life.
During this time, contemplating her labored breathing, I decided to administer another .25 mL morhpine to her just after 0600. I waited for 20 minutes. It seemed to have no effect. I'd called Hospice earlier in the morning to report on what appeared to be my mother's quickly declining condition and underline that we needed Hospice's equipment company to deliver a hospital bed pronto in the morning. The Hospice RN reiterated that, although our regular RN was off today, another Hospice nurse would come by to visit and check on Mom later. By 0630, when it appeared that the second dose of morphine wasn't doing much, I felt we needed a nurse out to the house as soon as the office opened, as I wasn't sure that she even be able to take her next scheduled "palliative and comfort" meds by mouth and I would need instruction on how to deliver them, now...and, appropriately packaged meds for the job, of course. When I called Hospice again I also expressed doubt that I would be able to continue to care for her if the only meds available for home care were by mouth. I was frightened of the possibility that she would be thrown back into horrible pain sequences again. The RN responded that, as well as an RN visit and a nurse, she would send out the Hospice cadre, which includes the Social Worker. This clued me into the possibility of facility care until the end. My assumption (which was later corrected by the RN who attended Mom and me after Mom's death) was that this was confirmation of my fear that, whatever methods they had to handle her newly deteriorated condition, they weren't methods that could even be applied on the home front.
After the call ended, even though, by this time, it seemed likely that Mom was comatose, although I couldn't be sure, I told her about the call, explained that it looked like only a facility could dose her with her meds, now, and if death was closing in, it might be a good idea for her to leave before Hospice showed up. She was continuing to breathe like a machine under stress. She made no acknowledgment of what I said. Once business had been "discussed" I continued reminiscing with her, for a bit, mentioned that I would miss her when she finally decided to die, but that I was excited for the possibilities implicit in her new adventure. I told her I wished I didn't have to wait to join her, as we definitely have the word "adventure" by the tail, her and I, but to go on and pursue whatever happened with gusto and I'd be there later...no need to leave a forwarding address, I joked, I'd find her. Then, I stopped that and simply held her hand.
I also obsessively counted her breaths per minute, scrutinized each breath and its peculiarities (although each one was tremendously similar to the last). I also noticed that her right arm, which I'd been stroking and smelling (I'd lotioned her arms soon after her 0500 med dose; they were sooo dry and I realized that she hadn't been lotioned at all for over a day) when I wasn't holding her hand, seemed to be getting cooler, but I didn't think anything of this.
At some point I had unconsciously taken to breathing at her rhythm. I didn't realize this until I watched her take her last breath, breathed along with it, then stopped breathing when she did.
It was as though one moment the switch was "on", the next it was "off".
Although, even up to the moment of her death, I wasn't sure it would be today, or even tomorrow, I wasn't overwhelmed when she stopped breathing. I waited for a few minutes to see if she was going to switch back "on". She didn't. I called Hospice. Then, I threw open my arms, looked up and said, heartily, "Good-bye, Mom, I'll see you later." After that I went outside (force of habit) and had a "last cigarette" with her. You didn't know I smoked, did you? For obvious reasons, I haven't smoked like I used to since August of 2004 when she forgot that she smoked, but even her diagnosis of lung cancer in May didn't provoke me to cut out the habit. At any rate, if she was capable of being aware, she would be pleased.
There was, by the way, no "death rattle". The Hospice RN explained to me that this was because she had no fluid in her lungs or backed up throughout her bronchial system. "Her heart probably heart stopped," she said. Considering the last four days, heart stoppage qualifies as a good death. There was also no release of fluid or bowel contents. I was right when I decided not to give her the senna when I was directed. She had nothing in there. Other than looking pale and having blue lips, which turned blue after death, not before (I kept an eye on them during her final minutes), she looked exactly the same dead as she had alive. Her expression was calm, as though she was asleep. When she was dressed and laid out on the bed for the mortuary to pick up I noted to the Hospice RN that it had been years since she'd been able to lay on her back, specifically because of her lung problems.
I was surprised that the nurse asked for clothes, but she was one step ahead of me. I began calling my sisters after I called Hospice. One of them, who is coming up with another this evening, requested to view the body. Since Mom's body is being transferred to Science Care for scientific research, I questioned the need for clothes. The Hospice RN, who had been involved in me securing information on the possibility of viewing, reminded me that my sister would probably not appreciate viewing my mother under glass (which is the custom with the mortuary, here, who handles Science Care calls), naked. True enough.
I remember mentioning here, although I'm not going to bother to find it, right now, that I was curious to see how the cats would react to Mom's death. Turns out, The Little Girl has been sleeping with Mom and companionating her on her bed almost constantly for the last four days. She was there this morning, curled up asleep at Mom's feet. She didn't flinch when Mom stopped breathing. She may have been aware that Mom died, but she continued sleeping. My interpretation is that this was The Little Girl's way of paying tribute to The Honorary Cat that Mom was, primarily because of Mom's talent for sleep. The Little Girl awoke when the Hospice RN entered the room. The RN attempted to pet her and The Little Girl glared at her suspiciously and spit at her. This is her habitual visitor greeting, so I don't think she was being protective of the Mom's remains. She stayed on for some minutes, then when activity in the room increased, she left. The cats have not been looking for Mom. They are neither acutely interested in nor avoiding her room.
I have, of course, been spontaneously sobbing off and on throughout the last several days, partly because Mom's physical difficulties have been hurting my heart, partly because I have assumed that they have indicated that her death is near. In the meantime, I'm not feeling much different than I have felt throughout Mom's and my years and life together. I haven't yet been surprised that her bed is empty. I am, though, astonished that Mom seemingly wasn't believing that it was time for her to die. I remember mentioning here, more than once, I think, that I rather suspected that Death would take her by surprise. I think that's what happened. I think the breath laboring was Mom's hard "death work", as it is called in one of the "Final" books, but I think she was working to hang on. I mean, isn't that a requirement of being immortal? I wonder, if there is such a thing as "the afterlife" and it is anything like that portrayed on John Edward's dead people show (which Mom had rediscovered in the last few months...I still have four episodes backed up for her to watch...perhaps I'll run them over the next few days and imagine her watching side by side with me), I'm thinking she may not yet know she's dead. After all, her Dead Zone was a constant presence, in one way or another, in this house. Initially, it probably won't seem to her like anything different has happened, except I still haven't returned from that errand I was running. What's taking me so long?!?!
I don't feel her with me...rather, I strongly feel myself with her. I'm not wondering about her life here...I've got the inside scoop on that, right up to her final punctuation. I'm wondering, really, now, about the nature of death and, if there is an after death "nature", what her experience of it is. She's always up for new experiences. So, I'm just wondering...
...take advantage of every opportunity, Mom...I'm expecting some really good stories when we meet again...
P.S. Oh, and, you haven't heard the last of me, here. The Mom part of this journal may be tripping the light fantastic, now, but the me part is sturdily here...I even have a few backed up opinionated posts about various aspects of caregiving and medical treatments that I wasn't able to polish off in the last week. They will be polished and published post mortem. And, well, you know me...although today marks the end of Mom, it doesn't mark the end of Mom & Me and the effect our 15 year (practically to the day) Adventure in Living Together has on me.
We're honored to have been with you and your mom on this journey.
Take care, and stay in touch when you have time.
Mom called me this morning. I knew this was coming because of your blog which I regularly read, but I still feel slapped in the face. I am so thankful Grandma had you there. It means the world to her and us. We all love you, and we're here for you for whatever you may need. You're in my thoughts every second. Please send my love to everyone.
The honor and grace you showed your mother is an inspiration to all who read your blog. Well done, Gail. And thank you for being generous in sharing it with all of us.
I think about you a lot I really miss you ....God Bless ......all my love..n...hugs ...Eilidh .....Ladyg...xxxxxxxxxxxxxxxxxx
I look forward to your future blogwork.
My thoughts are with you; you aqre a strong gal.
All material, except that not written by me, copyright at time of posting by Gail Rae Hudson