Monday, January 27, 2014

Teepa Snow is Coming!

For those of you who don't know who she is, Teepa Snow is the acknowledged and recognized expert on dementia behavior and how to help caregivers deal with it positively. She is an amazing practitioner of respectful and compassionate techniques, a great teacher for caregivers and professionals, and a truly empathetic and kind caregiver advocate. She is coming to Seattle for these events - I am lucky enough to be going to the February 11th session. Hopefully, I will learn more helpful techniques to pass on to my caregivers!

CAREFORCE Hosts Dementia Expert Teepa Snow
for the Tenth Consecutive Year in the Seattle Area
February 11-14, 2014
Space is limited for all sessions with Teepa Snow in February 2014
Pre-registration is Highly Recommended.
Pre-registration Required for CEUs** (see below)
February 11 - Morning and Afternoon Bothell, WA
9:30 AM - Noon How to Communicate with Someone with Dementia
1:00-4:00 PM Making Moments of Joy for People with Dementia
Cost: Free to family caregivers - $10 per session for CEUs. Lunch Provided.Location: Northshore Senior Center  10201 E. Riverside Dr., Bothell, WA 98011
Registration Contact: Nikki Bagli (425) 984-7183 This e-mail address is being protected from spambots. You need JavaScript enabled to view it
Sponsors: Northshore Senior Center; Family Caregiver Network of Snohomish County;
Snohomish County Long Term Care & Aging; Chateau at Bothell Landing;
The Alzheimer's Association of Western & Central Washington; CAREFORCE
February 12 - Morning and Afternoon Sessions - Everett, WA8:30 AM - Noon Dementia 360 - Understanding Dementia from Everyone's Perspective12:30 - 4:00 PM   Non-Traditional Stress Management for People Dementia and Their Caregivers
Cost: Free to the Public - $10 per session for CEUs
Location: Everett Elks Club, 2802 Hoyt Ave., Everett, WA 98201
Registration Contact: Providence Hospice and Home Care (425) 261-4800
Sponsors: Providence Hospice and Home Care of Snohomish County; CAREFORCE
February 12 - Evening Session - Seattle, WA
7:00 - 9:00 PM - Making Moments of Joy for The Person with Dementia
Cost: Free to the Public Location: Horizon House Sky Lounge, 900 University St., Seattle, WA 98101Registration Contact: CAREFORCE (425) 712-1999Sponsors: The Alzheimer's Service Coalition; CAREFORCE
February 13 - Morning and Afternoon Sessions - Seattle, WA10:00 - Noon -What Happens to Memory? What is Lost and What is Kept?1:00 - 4:00 PM - The Effect of Lifelong Personality Traits and Preferences on Behavior and Needs
Cost: Free to the Public - $10 per session for CEUs
Location: The Greenwood Senior Center, 525 N 85th St., Seattle, WA 98103
Registration Contact: The Greenwood Senior Center (206) 297-0875
Sponsors: The Greenwood Senior Center; CAREFORCE________________________________________________
February 14 - Morning and Afternoon Sessions - Seattle, WA8:30 - 11:30 AM - How to Communicate with a Person with Dementia12:30 - 2:30 PM - What Happens to Memory? What is Lost and What is Kept?
Cost: $20 per session - plus $10 per session for CEUs
Location: Jefferson Community Center, 3801 Beacon Ave S. 98108
Registration Contact: CAREFORCE (425) 712-1999;
Parks Department Employees Use Regular Registration Process

Sponsors: The Seattle Parks and Recreation Department; CAREFORCE

Thursday, January 23, 2014

Eating, Chewing, Swallowing.

The last few times I’ve visited Dad have been during lunchtime, something I usually try to avoid as I know the staff have six people to feed and I don’t want to get in their way. I prefer to come in the afternoons because Dad is not cranky from waking up, and I can skip lunch. Unfortunately, this means he is drowsy or asleep from eating, but you can’t have everything, and, the last few months he has been more alert at this time so I can interact with him.

One particular visit, when I came in to the house, all of the residents were seated and waiting for their meal. One of the caregivers was kind enough to pull a chair over for me next to Dad and I sat down and tried to get Dad’s attention. I think he was still a little sleepy or cranky, though. I watched as the caregivers set down full plates in front of everyone and began to help them eat. I watched one caregiver feed Dad his sandwich bite by bite, encouraging him as he chewed. I thought about eating and what a basic skill it is and how sad it is to see it lost.

Apparently, Dad is still able at times to feed himself, to lift the fork up to his mouth and take a bite. However, he rarely seems to want to do it. It isn’t clear whether the skill comes back to him periodically or he is just being stubborn by refusing to do it. It amuses me to think that he is sitting in his chair, refusing to participate with the enemy – those people who keep making him do things he doesn’t want to do. Dad’s little show of rebellion. Whatever is going on in Dad’s head, the staff are gentle and patient, and happy to feed him bite by bite.

Dad used to be the slowest eater on the planet. He could make an average meal last for hours, chewing each bite methodically and thoroughly. Often, to be courteous, I would sit at the table with him to keep him company as he finished his dinner. It became a problem in the Assisted Living Facility because the aides would take away his food before he was finished, something that really upset me when I found out about it. I was interested to see how quickly he was eating now, although that might have been because the aide was feeding him bites pretty regularly.

He does seem to still like his food, which makes me happy since it is one of the few pleasures left to him. It is why I bring him Christmas cookies and zucchini bread, in an effort to give him pleasure and maybe connect him to something happy from the past. I dread the day that he no longer wants to chew and swallow – or is no longer able to – which will mean we have moved into the final stages of his life. Until then, I may occasionally show up at lunch time to watch him eat and enjoy on some level what he is eating, even though he no longer seems to want to feed himself.


Sunday, January 19, 2014

New Book Review - An Unintended Journey.

I know that caregivers often don't have a lot of time to read the books that are aimed towards helping caregivers - an interesting irony. When caregivers DO have time to read a book, looking for support or information or a chance to shake their heads and say, "Wow, and I thought I had it bad!", the most disappointing thing would be if they, by accident, picked a bad one. That is why I have taken it upon myself to read as many of the books written for caregivers as possible and write reviews of them, so that when you finally have the time to read - you know that what you read might be worth that time.

An Unintended Journey, by Janet Yagoda Shagam.
 This is a big book, which ordinarily I like, but which might scare away caregivers who don't have much time to read. The title makes me think of one of the Hobbit books, which makes me laugh, but I think it is right on as most of us had no idea we would be making this kind of journey, nor would we have intended to, given half a chance. The reason it is so long, I found, is because it is packed full of information and stories, including a lot of little tidbits that a lot of other books don't cover (the type of tidbit that I'm always thinking needs to be covered!)

I really enjoyed the book. Shagam's mother suffered from dementia that made her progressively more agitated, temperamental, and difficult to handle. Shagam shares enough of her back story, however, that we get the sense that her mother may have always tended toward the difficult and that they had a complex emotional relationship from the beginning that made caring for her even more challenging. Shagam begins the book with some good, general information about dementia and aging and then segues into housing and care.

Shagam starts out caring for her mother, Dorothy, at home, and she goes into the details and challenges of hiring and managing in-home caregivers; managing different needs and behaviors; and even family dynamics - one of my signature and favorite subjects. Shagam seems to have made the decision to leave the really in-depth, specific legal and financial information to other books, of which there are many, although she does cover the basics. (Living With Lewy's - Amy Throop; The 36-Hour Day - Nancy Mace; The Elder Law Handbook - Peter Strauss.) Instead, she focuses on the 'little things', the kind of details and information I like and try to include in my writing because they are important things that all caregivers deal with but that a lot of books don't find interesting enough to cover. Things like behavior modification, and embarrassing events, creativity, and making your care-taker happy with little details like favorite foods - interesting details like that. She even goes into how you might tell your loved one they are moving into a facility, which most books don't cover.

Her book runs the gamut, from diagnosis to facility living to hospice care and what happens after death. There is a helpful and interesting section about the bureaucracy and paperwork that comes after a death, and, of course, ways to deal with grief and feelings. At the end, she includes several stories of the experiences of different families that I enjoyed reading.

From soup to nuts, Shagam covers most of the experience of caregiving, in a well-written, enjoyable read. The sections are short and interesting, so if you didn't have much time at the end of the day, you could read one or two sections. I really liked the book - it spoke to many of the unique experiences I've had with dad and the information and details I wish I could have found when I was first caregiving and on my own.  ****

Monday, January 13, 2014

Dying With Choice and Dignity.

I just finished a really good, if disturbing book called, Knocking On Heaven’s Door, by Katy Butler. It is a memoir describing Butler’s experiences over a period of several years, as her parents aged, became ill and died. The core of the book, however, are the struggles she and her mother went through in their efforts to help her father die with dignity. Butler’s parents were both reasonably healthy and independent as they aged, living in their own, beloved home. Then her father suffered a serious stroke in his late 80’s and the family were talked into inserting a pace maker to assist his heart. They would have no way of knowing how difficult that procedure would make her father’s, and mother’s last years.

As her father slipped into dementia, and increasing ill health, Butler’s mother was forced into greater and more difficult caregiving responsibilities, until her own health was at risk. Neither could find a doctor that would turn off the pacemaker and allow her father to die quietly. After her father’s death naturally, but not peacefully, Butler’s mother insisted on being allowed to choose how she would die; something that occurred a year or so after her husband’s death, but which would be much more natural and peaceful.

The author does an excellent job at conveying the horrors of declining health as well as the incredible stresses of being a caregiver, especially an older caregiver. She did extensive research on the changes in medical technology and ethics over the last 75 years and she does an amazing, and relatively objective, job in presenting the issues to the reader. Although the book was difficult to read due to subject matter, it was very well written and thoughtful; I think it is absolutely necessary for families who will soon be facing these issues to read it.

Reading it made me very glad that I have managed to place dad somewhat under the medical radar. He has a very good physician who visits him regularly in his home, but dad is still so relatively healthy, and well-managed, that he only takes a few vitamins and an anti-depressant. I am trying to help him to age and die in the way I know he would have preferred, under the belief system that he held to so long – Christian Science. To that end, I won’t be allowing any heroic measures at the end, nor will I encourage any medical interventions other than those to keep him comfortable. I worry sometimes about how dad’s end of life will go, and I hope I can make sure that it is peaceful and natural. Reading this book only made me more determined for that to happen.

Thursday, January 9, 2014

Tips on Parenting.

My friend and I went out to dinner the other night to catch up on each other’s lives.  She has recently joined me in the ranks of caregiver-dom and has had to endure a very steep learning curve.  She moved her mother, who was still independent and in reasonable health, in with her a few months ago.  A month after that, everything hit the fan and she began a journey down the road of hospitals, doctors, and difficult decisions.  Her mother is now home with her but has not fully recovered yet, and they have entered a place I know all too well – the place where you are now your parent’s parent, and neither of you are very happy about it.

Interestingly, I am also in the middle of writing a chapter about it for my new book, so it is very much in my mind.   Here is what I had written just before we spoke:

“One of the hardest things I faced as a young(ish) caregiver was the question of how to parent my parent.  There wasn’t really much information provided at the time about how to do any of this; no effective strategies, no suggested phrasing, no plans of action.  I had to learn as I went and deal with the questions as they came up.  How do I trump my own father, who, let’s face it, was clinging to his authority and superiority with every last fingernail?  How do you flip the energy of a relationship so that power that flowed in one direction now flows in another?  Because I can assure you – the flow-er does not want to become the flow-ee, if that makes any sense.  How do either of you swap such ingrained roles; parent becoming dependent child, child becoming authoritative adult?  How do you avoid stomping all over each other’s boundaries and hurting each other’s feelings?  How do you avoid getting triggered by your parent’s refusal to cooperate or their interesting new personal and behavioral habits?  And – possibly the most difficult – how do you help your parent navigate through their grief and rage at this process; and should you even try?”

 My father, an independent, proud and autonomous man was not anxious to give any of that up and we struggled for months about our new roles.  One of the things I found the most difficult was slipping out of my automatic deferral to his age and authority – something that was ingrained in me from childhood.  It took me a very long time before I could make decisions without second-guessing myself or asking myself whether it was something he would have done.  Listening to my friend, however, brought it all back: the struggles, the compromises, the threats, and the bargaining.  What I realized as she was talking, however, was how easy it has become.

I would never have guessed that being my parent’s parent was a role that would become second-nature.  I no longer agonize about decisions, I just make them.  I still act in his best interests, of course, but I no longer have to think about his input, as my friend does, nor do I think about how he would have acted.  It has, of course, taken ten years and a lot of work to get to this place, but I’m grateful to be in it, and it’s good to look back and see how far we’ve come.  I feel for her that she is right in the middle of it, but I do have this to say: Just wait, in ten years, it will be totally second-nature!


Friday, January 3, 2014

Art and Alzheimer's.

I stumbled on this blog via an article posted on Alzheimer's Reading Room by a writer/caregiver living in Seattle.  I think it is just fantastic so I posted the blog address as well as the link to the article, which is about visiting someone with dementia.  All good!

Thursday, January 2, 2014

Sibling Troubles: Re-post.

This is a great article I have re-posted from  It is all about constructive ways to get your family members to help you give care, which is a huge, and contentious issue, in family caregiving that many of us have experience with. It also fits nicely with a chapter about sibling relationships and caregiving that I just finished for my new book!  It seemed serendipitous.  This is a great website with a lot of good information and support and I encourage you to check it out.

Few things can make us feel crazier than expecting something from someone who has nothing to give.
- Melody Beattie

Though asking for help can be empowering, it is counter-cultural. We're taught to be stoic, not how to ask for help. Yes, how you ask determines your success. In a healthy family asking is pretty safe, but functional families are rare.
Most families have some imbalance of power, an inability to communicate, or simply a lack of kindness. Will they think you're not up to the job, be angry with you for asking, or pooh-pooh what you're saying because they can't admit there's a problem?
Coming smack up against your fears is your commitment to do your best caregiving. There is a way of asking for help that can work, but what do I mean by "work?" Your goal clarity determines your success. Let's say you need a break and want to call your sister to talk it over. If you define success as getting her to offer help, you've put yourself in a vulnerable position. You might self-righteously think, She OUGHT to offer to help out - this is OUR mother! While that's an understandable thought, you are setting yourself up for an upset. Your expectations are your worst enemy. Your goals and attitude are your keys to success. Let's see how such a conversation with a sister might play out.
  1. Define Your Goal Define your goal for the conversation simply: "I want to know how she is willing to help" or "I want her to brainstorm solutions with me."
  2. Dump Your Expectations Expectations make you vulnerable to resentment, an unnecessary energy drain. Your sister's life may be more complicated than you know. She may have her own difficulty accepting the situation. Decide that if she agrees to help, it's a blessing. Don't hang the relationship on one conversation.
  3. Be Clear Be clear within yourself and explicit in your words about exactly what would help. "I need three hours off each week;" Or "I need help in these ways..." Clear thinking and speaking increase the chances of getting helpful results. Do you just want her to listen? Or to give you advice? Do you want her to participate in another way that works for her?
  4. Be Gracious and Focused  If you ask and she says No, thank her for considering it. Stay focused on your goal. You want help while preserving peace of mind, which means avoiding getting sidetracked by resentment.
  5. Make Room for a Different Solution Finally, ask her what she would be willing to do to support you. If the answer is nothing, get it elsewhere. During caregiving, people you thought would be helpful may disappear, while others who were distant may step forward. When you are done asking, if you still need help, contact local social service agencies, senior centers, or churches. Find people trained in the field of caregiving who can tell you your options.

Holly Whiteside is caregiver's coach and author of "The Caregiver's Compass: How to Navigate with Balance and Effectiveness Using Mindful Caregiving."