Category: Death & Dying

Advocacy, Death & Dying, Life & Living

my mom is a question mark: august 9, 2016

My Alzheimer's Story

It was hard to imagine how Mom could have possibly been comfortable. She sat in a wheelchair, her swollen feet up on the footpads, her body contracted into the shape of a question mark: back hunched, chin to chest, broken right arm held in a sling wrapped under her breasts (and propping them up), her upper torso was squeezed into a golf shirt that was at least one size too small. Her arm was completely black tinged with blue in the sling, and sore to the touch. It must have been extremely painful to get the shirt on.

Nevertheless, when her friend Shirley, with whom we were having tea and cookies in the living room asked her, she said she was fine. She responded likewise when I asked her, and got a little impatient with all the questions about the state of her well-being:

We ought to believe what people who live with dementia tell us about their own experience in whatever way they communicate that information to us, which is often through their actions and words. We must listen, not impose our judgment of their circumstances on them, but rather check in with them and believe what they tell us even when, or maybe especially when it doesn’t fit with our preconceived ideas.

Our afternoon involved some storytelling, at Mom’s specific request. Strangely, I had a bit of a hard time coming up with a story, and in the end suggested The Paperbag Princess, which, keen to hear any story at all, Mom readily agreed to:

Mom was not a feminist, as I am, and I think she might have preferred a different ending to the story. But endings are mostly not ours to choose.

https://myalzheimersstory.com/2018/08/09/my-oh-my-what-a-wonderful-day-august-8-2016/

https://myalzheimersstory.com/2018/07/26/the-beginning-of-the-end-july-26-2016/

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Advocacy, Death & Dying, Life & Living

my oh my what a wonderful day: august 8, 2016

My Alzheimer's Story

“How are you feeling Mom?” I asked.

“Feeling fine,” she said.

“I’m so happy to hear that Mom,” I said. “And I’m so happy to see you. I didn’t see you yesterday, and I’m really happy to see you today.”  I gave her two big kisses on the cheek.

She was already in a wheelchair, so there was no need to transfer her from a recliner to roll her down to the elevator that would take us to the first floor for tea.

Mom’s aphasia made it hard for her to string words together, and that sometimes made it hard for me to decipher what she was trying to say. But she had no problem singing, and her ability to articulate her thoughts invariably improved after we sang several songs, so I wove our favourite tunes into conversations whenever I could.

“I played golf yesterday, Mom,” I said. “I had a 96.”

“Ninety-six,” she said.

Then I went on to tell her about the rainbows, which led us naturally to you know what:

When we got about halfway through, I took out my phone…

We also sang “When you wore a tulip,” “Take me out to the ballgame,” and “My wild Irish Rose,” after which I offered mom a cherry square to accompany her tea. Listen to the change in her ability to answer questions, express herself, and articulate what she likes and wants:

Thanks to the unknown baker who made the delicious cherry squares we savoured on that my oh my, what a wonderful day. They brought us both great joy ❤

https://myalzheimersstory.com/2018/08/07/in-the-arms-of-the-angels-august-7-2016/

https://myalzheimersstory.com/2018/07/26/the-beginning-of-the-end-july-26-2016/

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Advocacy, Death & Dying, Life & Living

in the arms of the angels: august 7, 2016

My Alzheimer's Story

I didn’t see Mom on August 7 (a Sunday), because I played in an interclub golf event, which lasted the whole day. But I knew she would be safe and loved for at least part of the day because Ingrid* would be with her from 3 p.m. in the afternoon until about 7, as she was most Sundays.

Like Sally,* Gaby, and our Caroline, Ingrid was one of Mom’s earthbound guardian angels. She’d been visiting Mom weekly for two years. And just like Mom loved Sally, and Sally loved her, Mom loved Ingrid and Ingrid loved Mom. Same with Sandy, who went to the residence to do Mom’s hair every Friday. Mom and I were incredibly fortunate to have these angels in our lives. We never would have made it otherwise. Never.

I called Ingrid later, to see how her time with Mom had gone that afternoon. She confirmed my experience of the previous several days. Mom was tired, exhausted even, and both of her legs were swollen; one was worse than the other.

“She ate her dinner with her eyes closed,” Ingrid said. “But at least she ate.”

Ingrid described the fixed stare as Mom “not being there.” She doesn’t look directly at me, she said, but somewhere else, like she’s spacey or something. I told her I knew exactly what she meant. We wondered at the potential causes: the trauma of the injuries she’d suffered, Mom’s fighting spirit, and/or her letting go of this life.

“We also don’t know if she’s on any additional drugs,” I said.

“They don’t give her anything in front of me anymore,” Ingrid replied. “The only thing they do in front of me is the eye drops. Other than that I don’t see when they give her medication.”

“Yeah,” I said, unsurprised.

“I don’t know if it’s because I complained when she spit it out the pills, or if it’s because they give them to her at different times. I really don’t know,” Ingrid said.

Ingrid may not have known why, but I did. It was all about power and control: of Mom, of me, of other residents and family members, of the staff, of the flawed approach to care.

“When I was there, she would also spit out the pills, and then they would force her to take them, which they’re not supposed to do,” I said. “If the person refuses, they’re not supposed to force them, but it’s been like this since the beginning.”

Could I have done anything differently? Anything better? Looking back, I don’t think so. I believe I did everything I possibly could, and so did the angels to whom I am so grateful – the ones that put their arms around Mom and me on our journey home.

https://myalzheimersstory.com/2018/08/06/dead-to-the-world-august-5-6-2016/

the beginning of the end: july 26, 2016

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Advocacy, Death & Dying, Life & Living, Real life, Toward better care

dead to the world: august 5 & 6, 2016

My Alzheimer's Story

“She’s dead to the world,” Mom would say of any small child she found sound asleep. It was one her favourite expressions along with “Don’t tell me!”, “Heavens to Betsy!,” and “I’ve got to get going.”

Dead to the world, figuratively, not literally, is how I found her on August 5, 2016; I tried to gently rouse her:

It became immediately obvious that she wasn’t going to waken, so I sat beside her for a half an hour, holding her hand in the silence. At least there’s no TV blaring, and she’s not in pain.

The situation was unchanged the following day, when I again sat beside her for close to an hour before leaving her to sleep in peace.

Earlier in the week, I had asked Eric to come for a music session, hoping the guitar and some singing might buoy her spirits. But I called and cancelled when I saw how she was. “Maybe another day,” I apologized on the phone.

There would indeed be one more day when the three of us would share a final hour of music together. But it was destined not to be August 6, 2016.

https://myalzheimersstory.com/2018/08/05/sometimes-nothing-works-august-4-2016/

https://myalzheimersstory.com/2018/07/26/the-beginning-of-the-end-july-26-2016/

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Death & Dying, Life & Living, Memories, Tips, tools & skills

what do you say to people living with dementia when someone they love dies, or when they ask about someone who is dead?

My Alzheimer's Story

Online care partner groups are supportive environments where family members who care for people they love who live with dementia ask and get answers to all kinds of questions. Sometimes the questions, such as this type, are heartbreaking:

My mother has Alzheimer’s disease, and my father is terminally ill with cancer. His time is very short now — only a matter of days. I’m worried about what I should say to Mom about Dad’s death. How do we tell her about his passing? We figured we would take her to the funeral home for a private visitation, but not keep her there for the visitation or funeral. What do we do after he’s gone and she asks about him? Do we break the news to her over and over? Or keep changing the subject when he comes up?

Experienced family care partner and USAgainstAlzheimer’s FB group moderator Jessica Price-Parrott answers this kind of question with excellent advice:

“My mom and grandmother were each other’s everything. Once my grandfather died my mom was her helper, friend, caregiver, and protector. My mom lived just two blocks away and really met all of my grandmother’s needs. Fast-forward fifteen years to when my mother was diagnosed with Alzheimer’s. My grandmother watched the disease progress in my mom. My grandmother passed away first. At this time my mother was in a memory care facility. I did not take my mother to the viewing, and I did not tell her that her mother had died.

I think this is extremely situational. You really know your mother best. I chose to not tell my mom because her brain would not allow her to grieve like you or I.

I know some people who tell their loved ones with dementia and that’s that. The person who is living with dementia never asks another question about it. Others ask over and over again, and grieve every time they are told the person they love is gone.

At first I thought my mom needed to know, it was her mother, she deserved the truth, and it wasn’t fair to her for me to not be honest. The more I thought about it though, the more I felt that telling her wouldn’t be fair because her thought process wouldn’t allow her to grieve in a healthy way.

When Mom asked how her mom was I would say she was fine and well taken care of. I figured that wasn’t a lie. God was keeping her safe.

As Mom lay dying she opened her eyes and looked at me. It was then I told her that her mom was waiting for her. I smiled, and loved her. She closed her eyes, and passed away peacefully.”

My mother and grandmother were also very close. When Mom asked about her mom, or her sisters (all of whom were gone), I told her they were happy and peaceful.

Also like Jessica, I was at my mother’s side when she died. During her final hour, I repeatedly said the same thing to her: “Gran is waiting for you Mom. It’s okay to go. She’s waiting for you.”

I know Mom heard me, and I’m sure it comforted her as much as it did me.

dying with my mom

10 normal ways care partners express grief

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Care Partnering, Death & Dying, Life & Living, Love

7-part palliative care plan works (for people AND cats)

My Alzheimer's Story

About a month after Mom died in August 2016, her little kitty cat Pia Roma, who had lived with me since late February 2013, began to behave strangely. Coquetishly cute Pia, with her big yellow eyes, had always been a little odd, but this was different. She wasn’t herself at all. There were continence issues, a lot of meowing and more vomiting than usual.

“She has chronic kidney disease,” the vet told me after some blood tests and an overnight stay at the clinic. “And probably a bit of feline dementia too.”

The vet gave me medication for the CKD, and put Pia on a special diet. Pia continued to enjoy an active life for an older cat, despite her dementia. When I took her back for a check-up in 2017, Pia’s kidneys had actually improved. In the four years we’d been together, we’d grown really close, and I was delighted she continued to be so well. I was equally devastated, however, with the results of this year’s check-up, which took place last week. I wrote about it on my personal FB page:

“I took Pia to the vet yesterday afternoon. Unfortunately, the news isn’t good. The vet was impressed with the great shape she’s in for a cat her age, which I think is 16. The vet said her heart is in fabulous condition; she was surprised and impressed when I told her that Pia still runs around, plays, and jumps up and down from my desk to the floor and onto my very high bed.

The blood tests, however, told a different story. The results showed that, while her thyroid is fine, her kidney disease has progressed from stage I, which is was two years ago, to stage III, which it is now. The vet reckons she only has about six months more in this world.

The only thing that can be done for her now is palliative care to keep her comfortable. Of course I feel desperately sad, and I can’t stop crying, but what to do? This is life. And death.”

As with any terminal illness (e.g. Alzheimer’s disease, kidney disease, etc.), the patient does not suddenly die the minute she or he is diagnosed. People (and animals!) can continued to live relatively well until they die. I believe our job as care partners is to support those we love in living as they go through the process of dying. If I’m not mistaken, that’s what palliative care should be about. Hard as hell in the midst of our own grief, no doubt about that. But I know it’s possible.

So I have a palliative care plan for Pia. It’s essentially the same as what I tried to do for Mom, even though my hands were tied in many ways. Here’s the plan:

1) watch and listen carefully to try to determine what her needs are and do what I can to meet them

2) focus on what she can do each day

3) make her life as joyful as possible

4) maximize comfort

5) minimize pain

6) let her be the driver

7) respect the process and hold space for both of us

I know all these things worked a treat when I was with Mom, and I believe they’ll help Pia as well. Maybe they’ll be a blessing for those you love too.

https://myalzheimersstory.com/2018/02/25/3-wise-thoughts-on-being-with-someone-you-love-as-they-die-which-also-apply-to-being-with-someone-with-dementia-as-they-live/

https://myalzheimersstory.com/2018/04/27/understanding-the-suffering-associated-with-dying/

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Advocacy, Death & Dying, Life & Living

understanding the suffering associated with dying

My Alzheimer's Story

Palliative care physician Dr. Mike Harlos gives advice to other palliative care doctors and nurses on how to best support people who are dying, as well as their family members and friends who may be going through the process with them. I love Dr. Harlos’s wisdom and gentle manner, which I have also featured here, and I wish I had known of these videos before I sat by my mother’s side as she took her final breaths.

The thoughts Dr. Harlos shares in the three-minute video below won’t stop the pain of being by the side of someone you love as she or he nears death, but the reflections and advice might alleviate the pain a little; they might ease the suffering overall, and thus allow for a deeper, richer and more meaningful final life experience.

Final hours at the bedside: Is my loved one suffering? from Canadian Virtual Hospice on Vimeo.

Here’s a transcript of the video:

“In palliative care, we don’t treat pain or we don’t treat shortness of breath, we don’t treat nausea; we’re treating suffering. We’re helping people with suffering. Suffering is the total experience related to a certain issue. So the person with pain is experiencing a physical symptom, but there’s also a meaning to that symptom, there’s an emotional context to that symptom, there’s a spiritual context, there’s a cultural context and that whole package is the suffering.

Sometimes the suffering is mostly physical, and sometimes it’s mostly spiritual or emotional or cultural and sometimes it ripples out to others in the room, and you can actually sometimes be aware of the total suffering in a room. So when someone changes, when someone is declining, it’s often seen that this person is suffering, even if they look comfortable. In fact families might say in the same breath “he had a good night, he looks good now, I think you’re on top of the pain,” and there might be a pause and then they might say “how can you let him suffer this way? You would not let an animal suffer this way.”

That sounds contradictory, and how I would try to discuss that is to say “I understand that this is really difficult to be part of and to watch. You’ve just mentioned that he looks comfortable, so I’m wondering, I’m wanting to hear more about what you’re seeing as suffering. Sometimes when people describe that they’re describing the total suffering related to this circumstance and that includes what he’s going through and what you’re going through. And I think he’s comfortable, and I’m wondering how we can help you with what you’re experiencing, which I think is contributing to what you’re feeling as his suffering.”

Also I think what people are describing in that situation isn’t so much his physical comfort, it’s the huge gap between who he was and who he is now. And often in the last few hours of life particularly, there are physical changes that happen that you can’t change. Like people lose weight, their skin colour changes because there is not enough oxygen being circulated, they become cool. And I think it’s important to make a distinction between who this person is in their spirit or in their soul, versus the physical changes that are happening to the shell of that person because people might see those changes and think of it as suffering.

Sometimes even the breathing pattern is changed and it almost looks like they’re struggling for air because they’re taking deep breaths, or periodic breathing, and there’s a gasp, and really what’s happening is that their regulatory centre for breathing is changing and becoming weaker so the breathing is erratic and there’s a long pause, and then there’s a big catch-up breath which then may be seen as he’s “gasping.” So it’s important to be aware that some of those physical changes don’t relate to the experience that the person is having. It’s simply the way the body is changing in a very physiological or biological way.”

Thanks again for this palliative care advice and wisdom, Dr. Harlos.

https://myalzheimersstory.com/2018/02/25/3-wise-thoughts-on-being-with-someone-you-love-as-they-die-which-also-apply-to-being-with-someone-with-dementia-as-they-live/

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Death & Dying, Love, Spirituality

3 wise thoughts on being with someone you love as they die, which also apply to being with someone with dementia as they live

My Alzheimer's Story

In the three short videos below palliative care physician Dr. Mike Harlos gives advice aimed at other palliative care doctors and nurses. He talks about how to communicate with family members as someone they love approaches death.

But I think there’s something for all of us learn from his gentle wisdom on how to interact with those who find themselves at the side of someone they love as that person dies. It also struck me that what Dr. Harlos says applies equally to people who live with dementia who many others think are “gone” long before the actually are.

In these three short videos (each is less than three minutes long), Dr. Harlos shares simple pieces of practical advice with respect to communication:

  1. Assume they can hear you
  2. Take it out of the room
  3. Make space for final conversations

I invite you to watch and listen, and hope you will be as deeply touched by Dr. Harlos’s words as I was/am. Just listening to his voice at once calmed me, and brought me to tears. As I watched the videos, I  felt as if I were in the presence of an angel, albeit an earthbound one for the moment. I might have made the experience of dying with my mom more beautiful and meaningful had I been exposed to the Canadian Virtual Hospice before her death instead of after.

1 ) Assume they can hear you

Conversations at the bedside: Can my loved one still hear me? from Canadian Virtual Hospice on Vimeo.

2 ) Take it out of the room

Conversations at the bedside: Being mindful of what is said from Canadian Virtual Hospice on Vimeo.

3 ) Make space for final conversations

Giving space for final conversations from Canadian Virtual Hospice on Vimeo.

I wrote a poem about my final moments with my mom; it’s here.

https://myalzheimersstory.com/2018/04/27/understanding-the-suffering-associated-with-dying/

https://myalzheimersstory.com/2016/08/20/dying-with-my-mom/

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Death & Dying, Life & Living, Love, Videos

i know where to find her

My Alzheimer's Story

February 11, 2018: Because of my advocacy, Mom is all around me every day. I listen to her voice on audio recordings, I watch her on videos, and I write about her. I sit in her chairs. I eat off her dishes. I wear her clothes. I even inherited her BFF Pia Roma.

Some people might think that’s strange. Or morbid. I don’t. It’s what people have done for thousands of years when their stuff was passed down from one generation to the next. And it’s always more than just things. It’s stories and sayings and songs and ways of doing and being.

Despite being steeped in Mom, I still miss her sometimes. When I do, I know where to find her.

More Over the Rainbow here.

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Advocacy, Antipsychotic drugs, Death & Dying, Life & Living

human rights watch nails crux of antipsychotic problem in nursing homes

My Alzheimer's Story

This six-minute video is the précis version of Human Rights Watch’s 165-page report published on February 5, 2018. It confirms what many dementia care advocates and activists, and even the US government itself has known for years: there’s a drug abuse problem in the country’s long-term care industry, and elderly people who live with dementia bear the brunt of it.

And the problem isn’t confined to the United States; it’s across Canada as well. I know from personal experience. 

I wonder if, like me, this video makes you ask yourself what’s wrong with this picture?

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