We’ve Come so Far…and Yet We Have so Much Further to Go!

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Penny Cook

Penny Cook, President & CEO, Pioneer Network, Family Member

As we gathered last week for our second symposium of 2021, Envisioning the Future: Dementia Care 2021 and Beyond, I couldn’t help but think of how far we’ve come in listening to the voices of people living with dementia and having them help guide what the future will look like for them and so many others to come. I needed to be reminded of the difference Pioneer Network and so many other organizations have made as we work to change the culture of aging, care and support because at this moment, I’m personally thinking about how much work still lies ahead of us.

My stepfather is living with dementia. At 92 years of age, almost 93, this is not necessarily surprising. He’s been living with prostate cancer as well and many of the side effects that come along with it. The last several years have been increasingly challenging not only for him, but also for my 87-year-old mother, his primary care partner. As I listened last week to the presenters who are living with dementia, I realized once again that neither of my parents were encouraged or supported to plan for what was going to happen. Only recently did a physician finally say, you have dementia.

Unfortunately, it came too late. My stepfather is not able to understand exactly what this means. He and my Mom didn’t have the opportunity to plan for what this life might look like. Last week we heard from Brian LeBlanc about the musical playlist he’s already made for his informal and formal care partners to play for him as his cognitive decline advances. Mike Belleville shared about the multiple conversations he and his wife, Cheryl, have had about what comes next. Mary Beth Wighton, another of our panelists, shared in her recent book, Dignity and Dementia- Carpe Diem, about the visits she and her partner, Dawn, have made to care communities in case she needs to move into one as time goes on. These are all people who have been involved as much as possible in planning their future.

After not being able to secure more services at home due to the severe workforce crisis in home care, my stepfather fell a few weeks ago and suffered a compression fracture of his spine. He had what is still too often a typical emergency department experience of hospital staff seeing him as his diagnosis, rather than a person who just happens to be living with the diagnosis of dementia. When he was admitted, the staff didn’t take the time to know him, nor did they seem to understand how to communicate with someone living with dementia. He was left in his own stool for hours without being cared for. His food was left for him without staff members listening to my Mom say that he needs cuing, and sometimes hands on assistance to eat. There was poor communication between the hospitalist, urologist and orthopedist. It showed me once again how broken our system is, how ageism runs rampant and even with a strong advocate, it may not be enough.

My stepfather moved into a nursing home two weeks ago. Out of the only eight homes in the area they live, it’s supposed to be one of the best. I confess that a few strings were pulled to help him move in there and I’m not sure they helped, but he’s living there now. It took a week or so before things became settled. There was still a quarantine period, there are still visiting restrictions and it’s taken everyone a while to learn his nickname, but I think it will be as okay as it can be. As I write this, I see that even my expectations are lowered tremendously about what his new life in the nursing home should look like.

To be honest, I look back right now and wish that I could have tried harder to support them in these conversations. Human nature is such though that it’s sometimes difficult for us to listen to family members in addition to professionals. It’s very sad and I know that so many of you reading this have had experiences like this and much worse. I know that some of you do the work you do because of your personal experiences. Writing to you as the leader of Pioneer Network sometimes makes me feel like a hypocrite but I don’t stay in that moment very long. Instead, I reframe that thought into this — We have so much work to do.

Last week’s symposium reminded me that we need to stop talking and start acting. We say this again and again…the time is now for change. Let’s mean it this time. Are you with me?

14 comments on “We’ve Come so Far…and Yet We Have so Much Further to Go!

  1. Daniel Young on

    Penny,
    Thank you for reminding us that we need to prepare as you and the others have said, by creating lists that our loved ones can use to make the transition easier. This past weekend we attended a funeral of a loved one who had been cared for in her home by her husband. She died unexpectedly, but as she wished, not wanting extraordinary services or efforts that would simply prolong her life and her pain. I think when we make our lists, we should keep that in mind should those conditions come upon us. This woman was a champion for the disadvantaged and the poor. All who came in contact with her knew the, so she was greatly admired and loved, and it was the largest funeral we’ve ever attended. Speaking of lists and notes, her husband said the last note her received from her, he found under his pillow. It told hime to be sure to make his bed! Everyone laughed when Bill to us about the note. That was so like Pat, caring for everyone before and after her passing.

    Reply
  2. Jed Johnson on

    Penny:

    My husband and I are counting on you. . .and all fellow “Pioneers” as we look towards our own aging future. While we have a long way to go, I/we are deeply appreciative of how far we have come. Thank you, thank you. . . for all you continue to do.

    Reply
  3. Wayne Langley on

    Penny,

    Thanks for sharing the all-too-familiar scenario. It’s one that grabs our emotions every time we hear it – and even more so when the story revolves around a loved one. There are many with you, Penny, and are here for the work ahead.
    We all know change is slow and hard but nonetheless frustrating when it seems the change is simply doing the right thing. Our family experiences the broken health care system each time an incident occurs.
    Thank you for all you do to impact the much needed change in our sector, and in our society. Valuing one another will be the basis for lasting change.

    Reply
  4. donna woodward on

    Thank you so much for your very personal, honest, moving account, Penny. Every story of the suffering of the elderly is heartbreaking. I’m so sorry for what you, your mother and stepfather are going through.

    Yes I want to be with you, Penny! Where/how do we start? It’s frustrating that even now, 2021, with all that’s been learned about the needs of persons with dementia, often hospital staff still don’t seem to appreciate the implications of cognitive loss. Persons living with this need so much more attention and assistance.

    To me, the solutions must start by figuring out how to increase staffing so that the elderly frail get all the attention they need to maintain functionality.

    Reply
    • Penny Cook on

      We need to start by coming together and not continuing to put seperate Band-Aids on these problems. A collective voice should come first and Donna, I have you listed as one of those voices!

      Reply
      • donna woodward on

        Yes we need all our voices to come together, beautifully and strongly! If you saw the recommendations issued recently by the National Consumer Group et all, “A Framework for Nursing Home Reform Post Covid-19,” it looks like maybe there is hope for meaningful change! There is more to elder life than nursing homes, to be sure, but so many elders eventually do need care in a nursing home, and the current state of affairs isn’t acceptable. (Actually, it’s appalling.)

        Reply
  5. Susan Ostrowski on

    I empathize with you, Penny.
    As professionals, we discuss many things enthusiastically. But when we are in the roles of family members, things become a little misty. When I walk through the days with my 88-year-old parents, my voice becomes softer. I listen more. Things look daunting. But what choice do we have? I’m with you!

    Reply
  6. Maggie Calkins on

    Penny,
    It is so hard for so many people, couples, families, to start those difficult “what if” conversations. It’s as if talking about it will make it real, and not talking about it, or talking “around it” will keep it at bay. I have SO much admiration for the people- like your speakers- who have those conversations, who do plan ahead.
    I was able to do that with my parents, and it made all the difference in the world as my father’s dementia progressed, and as my mother became increasingly physically disabled. I am my siblings knew what was most important to them- what was essential and what was not. And we were able to honor their wishes.
    And I have started my planning- mostly practical things now like where all my accounts are, what the passwords are – how to get into my computer – and I am making sure there are people who know where to find that information. After all, I could get hit by that proverbial bus at any time. And I want to make it easy for those I leave behind.

    I hope your letter encourages others to start some of those conversations – and if someone is resistant to talking, share Penny’s letter. Maybe that will help open their eyes to how much more difficult it can be when you aren’t planning ahead.

    Reply
    • Penny Cook on

      Communications is so important, Maggie. Thank you for the encouragement and support and kudos to you for having the conversations!

      Reply

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