Good reads for family caregivers

September 1, 2021 marked exactly one year since I said my final goodbyes to my mother.

Those last few moments with my mother are burned into my mind’s eye. The hospice nurse arrived to tend to her. I sat beside her holding her hand while awaiting the arrival of the mortuary team. There were two of them and they worked gently but quickly. And then she was gone from me… forever.

Despite how it might sound, the memory is not a morbid one. In fact — quite the opposite. It brings me a sense of comfort knowing I was with my mother until her very last breath. She brought me into this world… and I helped her out of it on her way to whatever is on the other side.

I believe family caregivers experience so many unique moments [such as this] that may be hard for others to understand. That is… until you move through it yourself.

That’s really why I have chosen to share with all of you my caregiving journey. By keeping it REAL, I hope to offer a window into some of the aspects of caring that you may not find elsewhere.

So in this edition of the Keeping it REAL Caregiving newsletter, I would like to share with you a couple of books I have read over the years; all which I found to be extremely helpful.

In fact, let’s call it, the KIRC Book Club. Do you have any specific titles you have read which have given you valuable guidance you believe will be helpful for others?

Drop a line in the comment section and join the conversation and be sure to SUBSCRIBE to the Keeping it REAL Caregiving newsletter!

I would love to hear from you! You can also email me at [email protected].

In future articles we can make this Book Club a regular feature. Sound good? Okay – let’s dive in!

How We Die: Reflections on Life’s Final Chapter, by Sherwin B. Nuland

Several years before my mother became ill and needed hands-on care, I happened to meet a woman who was in nursing school. She told me about this book – it was required reading for one of her courses.

The author, now deceased, was a doctor. I found this to be a thoughtful and easy-to-read book that explained various medical conditions but you don’t have to be a medical professional to understand.

Specific medical situations are told through the lens of real people and their personal stories. The author provides a roadmap of what happens to the body – physiologically – as we age, if we face various disease or if the body suffers some type of severe trauma.

I found this book to be extremely helpful in learning about some of the signs to watch out for regarding stroke and how an individual might decline afterwards.

It gave me my first exposure to what is known as TIA – Transient Ischemic Attack. I learned that TIA’s are often overlooked or misdiagnosed. But in reality if your loved one or elder has a TIA, it could be an indication something more severe is on the way.

That is just one example that stands out. I can tell you that because of the information in this book, there were many times I was able to find comfort in having some level of scientific understanding regarding the medical issues I was watching take place with my mother. In other words, I had a compass of what types of questions to ask her doctors.

Being Mortal by Atul Gawande

Ironically, this book was recommended to me by the son of a woman who lived at the same care facility as my mother.

The two of us began sharing stories of the challenges we faced. We both agreed we would have preferred to have our parent still living at home. But we also acknowledged their physical and mental conditions required 24/7 care that we were unable to provide at home.

We began chatting about how some elders remain strong and active well into their 80’s and beyond, while others decline. That’s when he mentioned this book.

The author delves deep into the origins of nursing homes and other senior care facilities. Also a physician, this author points out that current care models in our country can sometimes do a disservice to our elders.

He challenges our medical, insurance and housing sectors to ‘do better’ within the elder housing and care arena.

I believe this doctor is sounding the alarm that as a society, all of us have to think about our aging population with a different view. After all, if we live – and don’t advocate for change – that same future is waiting for all of us.

My take-away from this book? Just because we get older and perhaps need a bit more help, doesn’t mean we are any less important or desire our personal space, freedoms, friendships and interests to continue. Aging does not mean being tossed aside and devalued.

I learned this lesson well after meeting and interviewing an elder husband caring for his elderly and ill wife about this time last year. Update: he continues to take the lead for his wife, although he now has additional care help in place.

Courtesy: ScreenGrab

Evening by Susan Minot

Okay, if you google this one, you’ll get hits for a book and a movie. And there are plenty of reviews giving both a ‘thumbs down.’

I disagree. And here’s why. Evening is the story of a woman who is on her death bed and as she drifts in and out of consciousness she is reliving parts of her life.

Her daughters who are tending to her, get glimpses of their mother; parts they knew nothing about. And some of those parts are of lost loves and unrealized romance.

The reason I suggest this one, is that sometimes I think it can be helpful to realize you might hear your elder loved one talk about something or someone, that sounds like 100% delirium. What they are saying may not make any sense to you.

Near the end, I experienced moments in which my mother was hallucinating and talking about all kinds of people and things. Some of which I wanted to make sense of. Some of it I suspected were merely jumbled memories. But I will never know for certain.

When I think of this book and movie I wonder… was there some clue in her rambling pointing to who my mother had been all those years ago, long before I was born? Was she reliving something in her mind that no one knew anything about?

There is no way to have those answers. But If nothing else, it gives food for thought.

Okay troops… happy reading and let me hear from you! What else should we put on the ‘must read list’ for other caregivers? Can’t wait to hear some great book suggestions!

Until next time; Ciao~