Episode 37: Dementia and Caregiving with guest Rosemary Laberee
About Rosemary Laberee
Rosemary Laberee is not a physician. She is not a scientist or a medical professional. She is just an ordinary citizen who witnessed her mom's descent into dementia and she cared for her in her final year. Rosemary recounts that it was the single hardest thing she has ever done in her life.
She wrote her book “Mondays with Myrtle” because she desperately wanted to share her trials and tribulations, and her mom's trials. If there's a tiny chance that it helps someone else to cope with the stress and the sadness, or even if it just gives voice to another person's agony as they are going through this very sad season of life, that's what Rosemary wanted to achieve through writing her book. While there is a lot of information out there on dementia in general, Rosemary wanted to offer an alternative, up close, personal, and intimate view into the world of caring for someone who is in the advanced stages of dementia.
What is Dementia?
Broadly speaking, dementia is best described as a loss of cognitive function (mental functions) – e.g., thinking, remembering things, reasoning through things, etc. These mental abilities change dramatically as dementia progresses to the extent that it interferes with a person's daily life activities and their ability to take care of themselves.
Dementia is not a normal part of aging.
There are a lot of things that contribute to dementia – e.g., Alzheimer's. Alzheimer’s is the most common cause of dementia currently.
About Rosemary’s Book: ‘Mondays with Myrtle’
Rosemary’s book “Mondays is Myrtle” is part memoir and part dementia survival guide for caregivers. In the book, Rosemary recounts the trajectory of her mom's dementia and the stages that she went through. She describes what her days were like when she was her mom’s Chief Caregiver. Rosemary also illustrates, in some real detail, her mom’s slow departure from the earth. She offers little bits of wisdom on things that she learned on how to hold herself together through it all. Rosemary also shares how she learned to take a different view of a truly awful day. For example, there were days where Rosemary had just reached the end of herself and she couldn't see any joy or hope or reason to keep trying. Still she learned that leaning into it helped her find her reasons to keep going. In the book, she shares a lot of details about this experience.
What readers can expect to get out of the book
Rosemary’s greatest hope is that readers of her book will feel better equipped, if they are living through this season and taking care of a loved one – regardless of where their loved one is living (e.g., in their home or a memory care facility that they are regularly visiting). Rosemary believes that knowledge is power.
When dementia struck Rosemary’s family, she felt like she was at the peak of her own life (e.g., career, raising kids, etc.). She felt that she and her siblings were always one step behind where they needed to be to care for their mother as she progressed through dementia. Rosemary believes that if she had the information that is shared in her book, this knowledge would have helped her and her siblings be better prepared.
Rosemary hopes readers will also take the tidbits and treasures of wisdom on how to keep an older adult with dementia occupied and entertained throughout the day. Some things worked. Other things didn't work.
The challenges of keeping someone with dementia engaged in meaningful activities
Boredom is a major issue for individuals with dementia. It is often observed that individuals with dementia act out more and get more agitated when they are not occupied.
Rosemary believes that the challenge for caregivers is to change their expectations.
An individual with dementia is not going to gain a new skill, as would a 3-year-old, so your interactions will not be rewarding in this way. Alternatively, think of your interaction as giving your loved one with dementia a moment of pleasure. But, once the moment is gone, it will vanish like smoke in the air. But, regardless, the interaction still matters, because you infused that moment with happiness for them. Even if the loved one with dementia won't remember it, the positive feeling still exists in their heart.
About Myrtle
Rosemary’s mom, Myrtle, was a piece of work, an organizational Jedi, and a masterful solver of problems. She was funny and was always cracking jokes. You never had to wonder what Myrtle was thinking. She was a very upbeat individual.
When Rosemary started to notice changes in her mom
When things began to change, Rosemary noticed that her mother became quieter, but she never lost her sense of humor. Myrtle was laughing up until the last month of her life. She would still laugh so easily, even when things weren't funny. Laughter was Myrtle’s default mode. But, when things started changes, Myrtle became quiet.
She stopped eating at normal hours.
She stopped sleeping at normal hours.
She lost things
She stopped being able to solve problems for herself.
The above is what dementia looked like at the beginning for Rosemary’s mom Myrtle.
About Rosemary’s Mondays with Myrtle
Rosemary treasured her “Mondays with Myrtle.” For five years, Rosemary visited her mother every Monday. She decided to routinize it and visit her mother on Mondays. She reverse-engineered her schedule with her kids, and decided she was going to visit her mother once a week, rain or shine, no matter what.
It was wonderful.
Myrtle was living in a place that did not have nursing care; so, she needed to be able to dress herself, feed herself and go to the bathroom by herself - which she could still do at the time.
She would beam with pleasure every time Rosemary walked into her little room. Myrtle wasn't always sure who Rosemary was, but she knew that it was her happy time. Myrtle knew that Rosemary would sit and eat a meal with her, and then they would go outside together in the fresh air.
Myrtle couldn’t walk on concrete, because she wasn’t too sure on her feet, so they used a wheelchair and Rosemary would take her through the neighborhood that Myrtle grew up in. There walks were a blessing because Myrtle recognized things and places from her childhood. Long-term memories stay intact far into the development of dementia.
Towards the end of Myrtle’s time at this facility and Rosemary’s Mondays with Myrtle, she had a couple of falls and the facility instantly would take Myrtle to the hospital. Rosemary noticed that the few days her mom would stay in the hospital was her kryptonite, as it is for many individuals who are cognitively impaired. Staying in a hospital bed for multiple days, heavily sedated, wearing a diaper, not moving and not being stimulated is not a good combination. From Rosemary’s perspective, her mother lost a lot of her “cognitive territory” during those hospital stays. After her hospital stays, Myrtle entered her final stage in hospice.
If you are interested in purchasing Rosemary’s book “Mondays with Myrtle,” it is available on Amazon.
Support for Dementia Caregivers
Several excellent Facebook groups offer support for dementia caregivers. The largest Facebook group for dementia support is called “Dementia Caregiver Support Groups.” There are thousands and thousands of other dementia caregivers on this platform that are eager to share things that have worked for them and things that didn't work for them. The Facebook posts you will find in this group are brutally honest, but it is also the place where you'll find your answers to tough questions. People really want to help you. You'll instantly be a comrade if you join that group and you're going through a similar experience.
Rosemary also created a Facebook page called “Dementia Bulletin,” and an Instagram page of the same name. On her social media accounts, Rosemary posts updates, as well as interesting tidbits about dementia prevention. The science is moving in the direction of prevention now that they can’t seem to find a cure. Rosemary frequently posts about ways what you shouldn’t be doing if you want to protect the health of your brain. She reminds us, though, that she is not a doctor or a professional. She simply re-posts scientific articles and posts.
She reminds listeners that there are multiple online communities on Facebook for people who are living with someone who has Alzheimer's dementia. Still, she highly recommends the “Dementia Caregiver Support Group.” She spent a lot of time in this group when she was caring for her mom and going through it all. She doesn’t know how she would have gotten through without it.
What she realized from being in this online community is that what she was going through was normal. Her abnormal was normal in the context of dementia.
Having a community and a support network where people are going through a similar experience is so powerful and vital.
Conclusion
Hopefully, this episode provided you with some insights into the challenges of caregiving for a loved one with dementia and – importantly – ways to find joy and happiness in the little moments that you create with your loved one. If you are currently a caregiver for a loved one with dementia, hopefully, this episode helped you feel a little less alone and opened you up to the many opportunities there are to connect with others online who are going through a similar experience.
To learn more about Rosemary Laberee and join her online communities for resources on dementia research and support for dementia caregivers, you can follow her on social media@dementiabulletin: