Reprinted with permission. Originally posted on LinkedIn by JA Bourke.
Foreword by GreyHawk
It's that time of year - a time of remembrance, and of family. And, gift giving. From the piece reprinted below the fold:
Monday, 24 November 2014 through Wednesday, 26 November 2014, you can download a free electronic copy of Her Final Year: A Care-Giving Memoir. You can take advantage of this regardless of whether or not you own a physical Kindle by downloading a free Kindle Reader app, which is available for a variety of platforms.
We wrote the book to share our stories with others who are undertaking or who have already completed, the caregiving journey. It's currently rated 4.9 out of 5 stars on Amazon - please take the opportunity to get a copy for yourself or for those who you think would benefit.
Thank you.
If you can, please let others know about the opportunity to get the ebook version of our book for free. And I hope everyone's holiday is safe, warm, healthy, and prosperous.
Thank you.
"Thanks for the Memories" - Dementia, Family, and the Holidays
by JA Bourke
The holiday season is upon us, and for many, it is a time to gather with family, friends, and sometimes far-flung relatives as well as new acquaintances. Memories are made and shared; bonds are formed, and strengthened.
It is also a time where loss, pain, and sorrow occur, or remind us of the mortality we face, and which we, too, share with others.
For those families where a loved one is suffering from dementia, the holidays can be particularly poignant: in many ways, their loved one - although still with them in body - may have already left them. Confusion and disorientation, coupled with a mind that is slowly traveling back in time, emphasizes the growing rift between where the loved one finds him or her self and where the rest of the family resides - in the here and now, moving inexorably forward in time, in sync with each other and with events.
Family caregivers often find themselves increasingly isolated as the person they look after slowly drifts away - they'll follow, and guide, and comfort the loved one, assisting as best they can on that lonely journey, while the rest of the family and relatives, friends, neighbors look on. Or look away. Or try to help - sometimes successfully, sometimes not so much.
The best methods for coping change with each passing holiday, and even within the course of a single day, as the loved one tires or if confusion and disorientation builds. But, that said, if your loved one can still clearly recall and communicate past memories of family and events - even if distant, and even if not completely accurate anymore - there's ample opportunity to take advantage of that capacity, and bolster the quality of the shared holiday in a way that all can enjoy.
It takes patience, empathy, tolerance, and love. And a commitment to a level of engagement - regardless of how much, large or small. It's something that everyone can take part in.
From a business perspective, those of us who build project teams, manage people and projects, dealt with clients and vendors, or perform a leadership role can find their skills in business actually translate fairly smoothly into situational management: if you take a little time to speak to the caregivers of the loved one ahead of time, learning what guidelines they can share regarding the loved one's behaviors and what memories seem to be current, relevant and positively meaningful, you can prepare yourself and other adult family members with that information. It's possible to form a strategy to approach the holiday, with a little preparation, so that key figures who can help manage the situation know what range of things to expect and plan for.
No, it won't be perfect. You can't plan for everything. If you're the caregiver, you can only share what you currently know - avoid loud sounds, have some sweets (chocolate? ice cream?) on hand, list some key events or family members that the loved one might be able to talk about.
If you're providing the venue for the family, understand the basics from the caregiver. If you're not familiar with that family member's history - what s/he is proud of, what s/he finds interesting or amusing, what angers or upsets him/her - then check with the caregivers, and make a short list. Share it with a few other adults who can help recognize and mitigate situations that go pear-shaped: do you need someone who can wrangle kids or pets? Or if the family will gather at a public location, is there someone familiar with navigating the premises who can help find rest rooms, lounges, or key personnel if required?
Not everyone can cope effectively with those suffering from dementia. If you're one of those folks, don't pretend otherwise: plan to do your best to be a good & gracious host or guest, but watch out for things that make you uncomfortable. If you're with someone who is better at coping and who can help cover you if you need to step back in order to remain on an even keel, have a frank discussion - and do your best to minimize any times you actually excuse yourself. Don't become part of the burden on those who can help buffer you.
Regardless of your comfort level, you may still find yourself able to cope and interact effectively - memories shared with the loved one, or about someone the loved one still remembers, aren't the only thing you have in common. Maybe you have a story about past family events or even business encounters that you could share which are innocuous, amusing and engaging.
I remember one family gathering where some neighbors were also in attendance; the gathering was at a sibling's home. My father had started to exhibit some mild "brain farts" - he didn't have dementia, but we hadn't learned what the cause was at the time. One of the neighbors sat with Dad, and they had a very interesting discussion dating back to Dad's work in the military. Although sometimes it was evident that Dad had some issues keeping track of conversation thread, the neighbor - who was CEO of a large communications company - was very patient, and appeared genuinely interested. Dad really enjoyed the conversation, and appreciated it.
He demonstrated perfectly how one could successfully engage with someone who was having difficulty communicating.
Another time, my wife and I took her mom - who was suffering from Alzheimer's, but was very much still alert and "with it" - to a restaurant in Quincy after a family get-together. The owner of the restaurant knew us well, and made it a point to include and directly engage with Georgia several times. Although Georgia likely didn't remember most of the previous interactions during that visit, each one had been positive and reinforced her overall sense of happiness and security.
Family and friends can help tremendously by simply being aware of, and prepared for, sharing the holidays with a loved one suffering from dementia, regardless of whether it's Alzheimer's Disease or something else. It doesn't take much - the caregivers generally perform most of the heavy lifting - but by engaging with the caregiver ahead of time for tips and information, and discreetly alerting other adults how they could help, even a little bit can go a very long way.
And that, in and of itself, can also build more binding memories and deepen the holiday experience for everyone.