Monica & Starleaf, 1980
My mom’s journey
Today is the eighth day of no food or water for my mother. Although, she does get about 2 teaspoons of applesauce per day as the delivery method for some of her medication. She was satisfied with various thirst-aids: Biotene spray, mouthwash, and lemon-glycerin swabs until 2 days ago when the chemicals began to burn her mouth. Now, she has a small spray bottle with water and Rescue Remedy drops that she now uses pretty regularly. Her dehydration has progressed so that she has been more uncomfortable for the last couple days and has to spray her mouth regularly to be able to talk. In addition she gets eye drops, nasal spray and a wet washcloth on her face at least every couple hours.
She wasn’t hungry until yesterday (and not thirsty the first 4-5 days). She continues to jokingly say she’s ready for her blood orange Italian soda with lots of ice at least a few times per day. Today she has a hard time being able to remember all of the words for it, but the concept is clear.
She still is moving around on her own without help- just us hovering and ready to grab her if she starts to fall. She moves very slowly- shuffling around- but wants to survey all the rooms in her house a few times per day. Hospice says she is not eligible until she cannot walk without help – they have different criteria for someone who’s chosen VSED. She is currently getting palliative care which costs $65 per day. We pushed to get the hospital bed last Friday (before the weekend) but she still is sleeping in her own bed as of tonight. Every day she says how grateful she is to be able to sleep in her own bed with her husband.
She is loving the interactions/and connecting with her caregivers, social worker and hospice nurses. She says she wishes she had more time to be with these new people that have come into her life. She is still loving, teaching, learning and exchanging ideas and I think the caretakers also feel very blessed to be in her life at this time. One woman who is here almost every night from 11-8 am is now her “sister from another mister” and even though she moans and is in terrible pain first thing in the morning, she gets her meds and then hangs out with Anyaa and has an enjoyable interaction while waiting for the meds to kick in.
I know she is a strong woman and she has proven it again throughout this process. She knows she wants to die and be as present as possible in the meantime. She is still happy and making the most out of every hour. At this point, I can say that it is a beautiful process. She is in pain, but has been for 40 years already, and is not suffering. I can see the happy ending in that she will be relieved of all of her pain and deteriorating body – she will be free. This is where we are at today – it looks like it will be a “Good Death” and exactly as she wanted it.
11th day- A couple days ago I realized that if my mom’s “soul or essence” was a flame, that it was diminishing in strength/intensity. I feel more accepting of her dying. I see that it will be a release — freedom. About the same time, she mentioned that for the first time, after trying to achieve it for 25+ years, that her monkey mind was gone. She wasn’t thinking of things that she needed to write down on lists so as not to forget, etc. She was in the “now”.
Yesterday was harder. She was not able to walk or even stand, at all. I got wakened up at 3:15 because my mom had “collapsed”, so Ron needed Anyaa’s and my help to move her on to the commode, and back in bed, etc. I went back to sleep at 5:00 and then woke up at 8:00.
It was ideally a three person job to get her on and off the commode and then we all knew that we needed to transition her to the hospital bed. We moved her, as well as the loveseat, into the living room, then moved the furniture around in the living room some more. It was a physical challenge and it was emotionally difficult for her (and Ron) to know that she would no longer be able to sleep with him. She has become more childlike in her need to know what is going on/or what will be happening- she seems more fearful.
She is very bossy and demanding. She wants everything done her way and is almost hyper vigilant: if she hears a noise, she pops up and wants to know what’s going on. Even if she is sleeping, if there is any soft noise, she awakens and has to see what is going on.
She seems as if she is holding onto life as hard as she can but has also said she is disappointed that she is still alive. When I examine it, it seems that she still is attached to various stories (resentments/people that she has still not forgiven), based on her mentioning at least twice yesterday that her mother used to hit her when she was a child so has a high startle reflex, and also about my dad leaving when I was born.
12th Day
Starting yesterday afternoon, she has gotten a lot more vocal about wanting water more often, and spraying significantly more into her mouth than before – I asked if she really wanted it – reminding her that it would take longer and she said I know and I want it anyway. She said it will “just mean more work for you”. Ron told me he had the same conversation with her again today. She is sleeping more, an occasional 3-4 hour long sleep but mostly less and still pops her head up often to see whats going on. She has a hard time sitting up on her own and needs us to support her back when she is sitting up. When she mentioned that she wondered why she was more tired and sleeping more, I responded that she might be closer to dying and she said “oh”.
Ron said that yesterday morning she woke up and said she dreamed of two guides, when I questioned further, one was carrying a tall cylinder of liquid and gave her something to drink. About 4:00 pm, she woke and said she’d been dreaming of Spain. She often mentions that she’s been dreaming when she wakes up. Until the last 2 days, she spoke of having dreamless sleep since starting morphine on 7/11.
I have less time to myself since 3 days ago – enough to sleep, go to the gym, prep and eat food, talk to Volker briefly and I feel trapped on some level. It is hard for me to be patient with her – way harder yesterday with so little sleep. Better today after enough sleep and two days in a row of going to the gym. I’m ready for it to be over and I feel guilty and know that I will feel guilty about it after she dies. But I also realize it is normal to feel that way.
This morning and afternoon I massaged my mom’s various body parts with other caregivers. I had been concerned that I would feel repulsed by my mom’s deteriorating body, but that is not the case. It feels normal to touch and care for her.
I had a dream that Ron told me that my mom was dead in the other room. I went into the room and saw a body with the hands and feet cut off (I thought it was her, but couldn’t understand why that happened – who would cut off her hands and feet?), then I looked further and did see her with all of her limbs intact.
My mother died on 7/24/18 at 11:32 am. It was her 14th day after the VSED began.
The last couple days were the most difficult – the 13th was the worst. She seemed uncomfortable but still didn’t answer that she was in pain when asked. The hospice nurse came by and suggested we increase her medication frequency, but it didn’t make any difference. She seemed squirmy and restless. She slept one 3 hour interval the night before and then no more than 30 minutes at a time the rest of the night and following day. She wanted to change her position every few minutes. She was so weak that she kind of flopped in a specific direction and then we’d need to follow through moving her body the rest of the way and hold her up or prop her with pillows, until she squirmed again. Finally, the evening caregiver (who hadn’t been there for the prior 3 days), told me that “this is wrong, your mom shouldn’t be suffering like this – she needs more pain relief”.
I called the “on call” hospice nurse and then doubled her dose. I was holding her up and she said “I think it’s time for Monica to get in bed with me”, not aware that it was me that was holding her. I gave her another dose of medication and lay down next to her, where she was flat on her back and then she rolled over to be “spooned”. It felt so comforting to me and I assumed for her as well. I thought “this is what she needs, now she will relax and fall asleep”. However, after 30 minutes, she popped up again. I told her I was concerned about her being comfortable and she affirmed that she was not comfortable. I called the on call nurse again and she advised me to up the dose more. I did, and around 9:30 she finally feel asleep and stayed asleep until I went to bed at almost 3:00 am.
I was dreaming that Ron was cleaning out the house – Christmas stuff – and that my mom and I were going to take a bath together. First, I popped a zit on my arm and out came a bunch of white stuff – at first I thought was a worm and then I saw it was the shape of a small unicorn and I mushed it by accident…and woke up. This was probably about 10 am and she was still sleeping (unconscious at this point). The caregiver that was there the prior evening, was there again and was watching her closely. Close to 11:30 she caught my attention and asked me to come that she thought we were getting close to her death. I got Ron from the other room and we got on either side of her and she took her last breath. It was a peaceful death and we were really pleased to have been with her when it happened. I’m sorry to say that I did not have an impression of her spirit leaving her body in a dramatic way, I felt more that her spirit “leaked out” at a slower pace.
The hospice nurse came and officially declared her dead. The next caretaker was one of the Buddhists and she mostly bathed my mother, while I helped to undress and move her body around. Ron joined in to change her clothes and we packed the sides of her body with dry ice. She requested to stay at home for 3 days for a specific Buddhist death ceremony. She will be cremated on the morning of the 27th and the Buddhist prayers will continue for another 49 days and at that time she will be ready to be reincarnated according to their view (which she didn’t necessarily share).
I am very sad but also feel fulfilled: I helped her on her journey to death and it was beautiful, but also the most difficult time period that I have lived through.
Starleaf VSED 