I’m sitting with my mom for several hours this morning after a very early drive to Kahala from Kaaawa.
We scheduled this so my sister could attend a meeting at her church in Aina Haina. It’s the same church we both attended as kids. Bonnie became active again as soon as she moved back several years ago to help care for our parents. I haven’t been there for decades except an occasional visit to the thrift shop with Meda.
In any case, this is not pleasant duty today. My mom has been nauseous, complaining of pain in her neck, and zoned on some combination of meds that I’m not fully up to speed on.
We are in new territory. She was approved for hospice care a week ago. It means she can stay at home, and there will be more support for her as well as for my sister, who is on the front line in daily care. This week has been filled with the initial round of nurses and medical evaluations, the first visit with the social worker, a new round of medications, and lessons in the hospice routines and case management.
Her condition in the past week seems to have remained in a narrow range. On a good day, she can get from her bed into the living room on her own steam with the aid of a walker. It takes a while, and might be touch and go, but she can do it. Then she occupies her regular chair and goes through the motions of looking at the day’s mail, or digs into one of the stacks of miscellaneous papers accumulating at her feet. I don’t know if she is actually processing the information. I can only hope for the best.
She eats, although not enough to fuel a 10 pound cat. A bit of fruit, cut up and waiting in a dish. A couple of spoonfuls of poi. Soup or broth. Juice. A partial cup of coffee in the morning. Part of an english muffin. On a good day, she drinks enough fluid to ward off a second bout of dehydration like the one that put her in the emergency room several weeks ago.
Today is not a good day.
She is sitting up in a spot on the sofa in the living room. A glass half filled with water sits near her right hand. She’s wearing a “world’s best mother” nightgown under a worn, deep blue fleece jacket, a dark green blanket across her lap, well wrapped despite the warm day. She’s here, but her mind is obviously floating in a very different space. This is something new, and I would guess it’s purely chemical. She’s switched several medicines, and some adjustments obviously have to be made.
In the short time I’ve been here this morning, she has already had a couple of brief conversations with herself regarding some obscure genealogical reference or family link. “Cousin or nephew?” I hear her ask.
Meda thought she heard the word “obituary.”
I walked over to in front of my mom, who looked up, but seemed to stare past or through me without seeing.
She then seemed to doze off while sitting up, then appeared to be dreaming, or living out a dream. Once she looked up, eyes opened, and suddenly launched into a slightly garbled rendition of Hawaii Pono’i, struggling to find the words and string them into something close to the right order. Then the lights went off again, her eyes closed. In a minute, she rubbed her neck, then nodded off again.
Later, she appeared to be acting out eating something. Her hand went to her lap, feeling along an imaginary table, her fingers curled to scoop something up, made the slow trip to her mouth, and then she chewed, slowly. It was like watching kids acting out a tea party. I waited, then asked gently if she would like a spoon of poi. It startled her. She shook her head, “no.” Dream trumps reality.
Parts of her body hurt. Arthritis in her shoulder, the hip that was replaced when she was a spry 80-year old. I know there are other sources of pain. She rubs her neck repeatedly, grimacing as she does. I tried several minutes of massage, repeated at intervals. It doesn’t seem to offer any relief. My instructions were to give her a pill for pain about now, but in light of her current mental confusion, possibly a reaction to other meds, I’m holding off.
Then she appeared to decide to move. The process of deciding took time, then she reached out, fumbling as she tried to get ahold of the walker parked in front of her. I offered to bring the wheelchair. She shook off that idea, got one hand on the walker’s grip, then the other.
When lucid, she has repeated said that she doesn’t want to be treated as an invalid. Today she isn’t lucid, but clings tenaciously to that idea. She wants to get around on her own, at least nominally.
Getting upright is difficult. Today she could not have done it on her own. But the two of us got her vertical, and, very slowly, she released the brakes and began to shuffle in the general direction of her bedroom. I stood close by, nudging the walker past obstacles, prepared to react if she fell, not sure whether she could manage this physical feat. She managed. First the eight or nine feet to the door into the hall, then a shuffling turn towards the right. Bedroom now straight ahead. She faltered once, staggering backwards, almost falling. I caught her and got her upright again. Then she finished the job, getting the final ten feet, remembering to lock the brakes, turning and pivoting next to the bed, then sitting on its leading edge, finally shifting herself towards the pillows and sort of falling over into sleeping position, legs following.
She has powered through many of the crises of aging, but at 98, life is catching up with her. I doubt that she’ll be able to go into her yard again, or water the plants that she has cared for over the 70 years living in this house. She climbed into the larger of the two mango trees well into her 80s, but now the few steps down from the house to the lanai are probably an insurmountable barrier.
She has outlived all of her friends, experienced death many times over, and prepared detailed directives on what to do, and not do, when it is her turn. She has prepared for this quite deliberately.
It doesn’t make this long moment any easier.
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I recently read the book “Death With Dignity” by Robert Orfali. It’s well researched, well written, intensely intimate (the author describes his own experiences living with a dying soulmate), and filled with good advice. It was not only a “good read” but also helped me improve my own power of attorney for healthcare.
I don’t think it’s the painkiller that putting her “on another plane.”
I’m intimately familiar with chronic pain management. Pain is unhealthy, and keeps the body from healing and coping in myriad other ways. Please don’t deprive her of pain relief.
Nausea could be caused from the pain meds without sufficient food. I have experienced it directly – both personally and in others when staying @ Rehab Hospital in 2008 & this year. Ginger – tea or in power form (capsules) does help, but food is even better – even if it is some bread or soda crackers & flat ginger ale.
Also talk to her doctor or hospice nurse about the nausea; they can get her some or promethazine or Ondansetron (Zofran IR) (instant release). The IR tab can be put under the tongue & is very fast-acting. Makes you drowsy though – but at least you won’t be nauseous. If she can’t do the tabs, there is always the Compazine (sp) suppositories. Not all that fun, but they work. I have used all of these; my mom was taking the IR tabs until she couldn’t.
I don’t agree with Nancy at all re: pain meds not putting her ‘on another plane.’ If she’s never taken what she’s getting now, especially now that her body’s losing weight & not fully hydrated, that could be a big part of the reason she’s drifting along with her mind and not being ‘present’ with you. I’ve also had personal experience with it – both in 3 weeks in ICU and this last time in the hospital. I’d ‘drift off’ & be doing all kinds of stuff – and when I’d come to, I wasn’t where I thought I was. Last time that happened, I had the Dr. change my meds so I could get out of that mental space & come back, so to speak. It was very disconcerting to me.
One thing I did while taking care of my Mom was to go online & find out about what to expect as time drew near. It was very helpful to clinically understand what was going on, and it was very accurate – especially about symptoms when the end was near.
I know you are trying to make her as comfortable as possible. You can add this for her comfort, since it appears that she’s not going to be tending to this world physically anymore: Play hymns for her if she was so inclined when she was fit & able, keep her warm (or cool), and monitor the amount of meds given – enough to settle pain, but not so much as to cause her to drift away or give her hallucinations.
PS – try also mildly-hot compresses for her neck – as well as a gentle cream like Topricin (DTE).
Any idea what the source of the neck pain is? Has a tumor in her neck or the area been ruled out? This would require an MRI.
Pain killer medications become such a guessing game, I feel. Trying to find the right combo that gives relief but doesnt cause some of these side effects she seems to be having is so incredibly tricky. Has prescription strength naproxen (Aleve) been tried to help with the pain?
If this were one of your cats, there would be an obvious solution. With your mother, there really isn’t any choice.
I know what I want for myself which is why I plan to leave well in advance, without any notice, and without getting anyone else involved.
Take care of yourself, too. It’s part of the natural rhythm of things, but it’s is a tough transit to make.
You are in my thoughts Ian. I have been a caregiver more than once and I know how it is.
The side effects of the drugs is as you say a guessing game. The Hospice people are always great, when they were coming by my home to help with my Wife I met 5 different nurses from 5 different countries each with a slightly different take on the situation but within the Hospice guidelines. A really great organization.
I feel honored you’ve chosen to share this struggle with us. Hospice is a wonderful addition to aid in this journey your family is taking and they make such a difference in how the end of life is orchestrated.
I will pray for all of you, but like Nancy know your Mom deserves the medication perscribed. There isn’t any need for her to suffer anymore because it won’t change the outcome.
Ian, I wish you and Bonnie strength to help your mother through this last phase of her life. My family went through a similar experience with our parents, both 97, a few years ago. As has been said a couple of ways above, do what you can to keep her comfortable, physically and mentally. At this point there is probably not much else to do.
We’ve been through something like this ourselves, and hospice is a blessing. Like everyone else who has read this post, you have my sympathy.
For future reference, one of the best forms of painkiller is DMSO, the solvent that one can apply to one’s skin. DMSO itself has painkilling properties, and it is absorbed within seconds through the skin. (It does give one garlic breath, however.) But it also draws any compounds mixed with it into the skin and blood stream. That includes painkillers that could cause stomach upset. Also, it blocks acetaminophen from the kidney, so Tylenol in ground or liquid from (e.g., children’s Tylenol) might be an ideal candidate for mixing with DMSO. So the next time you have knee pains, mix some painkiller and DMSO and rub it on your knee. Of course, do some research first and only buy quality products! (The primary form of using painkillers in France is suppositories, by the way. It does prevent nausea. I’ll stick with the DMSO.)
WOW – when did all this happen ? I have been very busy with my 81 year old mother and the problem of her expired land lease so I haven’t checked in lately . I am sorry to read this about your mom. It is good that your sister is there to take care of her.
Hi Ian – thank you for sharing this poignant piece.
I went thru what you’re experiencing with my father and later my mother. It’s painful to go thru this ending processs on this level of life with them. Over the years I’ve come to wrangle with the fact that I too will go the way of my parents. Then begins the quandry of choices I must make that will cover what I want without burdening my children with the reality of how much. I’ve become a part of two groups – one works with nano patches and the other with fruits that are hi in auto-immune properties. Though I know it’s difficult to do, going thru your mom on these final days WITH her actually gives her peace as she prepares to move on. It may seem like this dying process is for the dying – it isn’t. It’s for us the living left behind to contemplate our own quality of life. It’s good to know that you have family to take care of not just your mom’s physical needs, but her spiritual need as well.