Monday, February 23, 2015

Teepa Returns!

Once again, Teepa Snow is coming to Seattle!

If you are able and you live nearby, I really urge you to sign up for one of these classes. Teepa is the master at interacting with dementia sufferers and can absolutely make life easier and more comfortable for you and your care receiver!

Here is the link to With A Little Help Homecare's site.

Saturday, February 21, 2015

Hollywood Alzheimer's.

I recently ran across an essay that made me simultaneously laugh until I cried – and think. The essay was about romantic comedies and how trite and sometimes annoying they can be. Characters act in unlikely ways, or have problems that are amazingly easily solved, emotional events happen quickly and are wrapped up nicely, a character has a terrible disease and is healed or inspires the world, etc. The writer writes about certain characters having what she calls, “Hollywood Alzheimer’s”, speaking in particular about a film I won't name, but her description cracks me up. 

“…(the actor’s) preppy shagger acquires sudden depth because his dad has Hollywood Alzheimer’s. A gentler variant of dementia, Hollywood Alzheimer’s does not cause you to take a s**t in a shopping center or shout ‘Are you an Arab?’ at the district nurse. Hollywood Alzheimer’s sufferers bark the odd non-sequitur but drift into lucidity long enough to deliver homilies about finding your one true love, and to help their sons nail (the female character.)”

First of all, I thought this was absolutely hilarious, because it is so right on about how Hollywood and the media portray dementia (and it’s also really well written!) I know there have been a few movies with characters with dementia, which I suppose we should be grateful for, but Hollywood really does have this magical thinking about dementia and how it manifests and what it’s like to live with. They always seem to portray it as a gentle withdrawal, a long, sad, stylish goodbye – which it can be, but more often manifests as yelling, delusions, incontinence, and agitation!

Granted there have been a few really good films on this subject, such as Iris and Away From Here, both of which, I believe, portrayed a more realistic view of living with dementia. Kelsey Grammar played a powerful man beginning to suffer from Lewy body dementia on the television show, Boss, the first media mention, I might add, about LBD. And I know there’s Oscar buzz about Still Alice, which was an excellent book before it was a movie. In fact, my local news stations keep digging up families that have been affected by dementia to say how good they think Julianne Moore's portrayal is.

But how soon will the topic of living with dementia sink back into obscurity once the award shows are done or the TV shows are over? And why can’t we consistently show something on the big screen or TV that really seems authentic, and why can’t we make it so the lives of caregivers and care receivers, and the struggles they go through, is out there in vivid color, clear to everyone? Maybe it would bring them some much needed help!

I know, I know, it’s Hollywood, it’s escapism, it’s all fiction. And it is true that it is bringing some sort of awareness to the huge problems of aging, and illness, and dementia, and caregiving – but is it good awareness if the portrayal is completely false. I just wish it could be a little more close to the truth, to how it really is. Does the viewing public really need to be so sheltered from what is a very real life experience – one that they themselves might experience? We should be shown the reality of something that is so life-changing, so that the right kind of awareness can be brought to bear, and the right kind of help – financial, governmental, medical, etc. – can begin.

Wednesday, February 11, 2015


Poor Dad. I went to see him today in his new room. They had put in the new carpeting and it looked great, although it really still smelled like new carpet. When I came in the front door, one of the caregivers saw me and smiled at me and told me that Dad was currently being changed, since it was just after lunch, and could I wait a few minutes.

As I waited, I chatted with one of the other residents who had a stroke; he's made some strides but I don't think he'll ever leave. I also chatted with the house owner, Greg, and we discussed the fact that Dad has lived there for five years! Unbelievable. We moved him in a few days before my birthday in February five years ago, when I had just started dating Paul. Now every time I have a birthday (44!) I remember moving Dad.

The owner told me that a few days ago, Dad had been very energetic and happy, answering with a "Pretty good." when asked how he was, and agreeing with his name when they asked him if that was him. Greg said he'd even seemed to walk more easily. I was so happy to hear this, and thought it lined up with how Dad has been on recent visits - more engaged and smiling. When I was cleared to go into his room, though, I could see right away that Dad didn't look well. He was hunched in his recliner, face drawn, mouth in a tight line.

His eyes were fixed on the wall, and I moved slowly into his line of vision, as I've been doing lately, until I met his eyes. I think I saw him register my face, but his eyes and face didn't change one bit: he looked very unhappy and stressed, and he refused to smile at me or even really let his eyes register my presence. I can only guess that it was because of the ordeal he had just experienced - being cleaned and changed - people performing intimate, private functions in order to keep him healthy.

I can only imagine how it must be to have once been an independent, functioning adult, with control over your body and life, and now you must suffer others to do what we do for babies. The loss of dignity and control must be horrifying, even to someone with dementia who has limited idea of what is happening around them. There are some things I think we always understand - and some things that are too upsetting, no matter what our mental state. The loss of privacy and control. It was obvious that he hated it with everything he has left.

I stayed for a little while, sitting next to him on the little stool I brought, wishing I could do something to make it better. It seemed like the only thing to do was to leave him alone and not impose my presence on him, so he could recover in peace and some semblance of privacy. I hope he is able to get back to the happier, talkative place. I hope he has a good nap this afternoon and wakes up feeling better. And most of all, I hope he is able to forget each time he must undergo these kinds of care.

Monday, February 2, 2015

Gut Instincts.

I wrote in my book that I wished there was more preparation for new caregivers so that they didn’t adopt bad self-care habits, and allow themselves to be pushed beyond their limits.

“There are so many potential dilemmas and pitfalls that caregivers face. There are often no clear cut choices, no set in stone options, and no absolutes, and we must navigate our way as best we can through the difficulties. There was no one to make any rules of give out guidelines, so people just made it up as they went along using who they were and what they heard, learned, and believed. There is not much official or professional training for the “family” caregiver so most family caregivers are thrust into the job without proper training in how to care for a patient or themselves.

I think that, lacking much official structure and guidance, caregiving has evolved into something potentially toxic and self-destructive. Doctors, advocates, professional, and caregivers, all need to fight what caregiving has become. We must teach people how to survive caregiving; and maybe even win at it.”

I really believe this, and I am excited when I hear about hospitals offering caregiving courses for the lay-person in how to give care without giving everything! It would be great if we could create some sort of organization strictly about caregiving that streamlined information and instructions and ways of doing things, and created classes in every city to help caregivers in everything from how to get someone to bathe who doesn’t want to bathe, to how best to speak to and treat your loved one so they don’t become agitated or angry. This might be a pipe dream but maybe someday.

On the other hand, guidelines and trainings aside, there’s a lot to be sad for your gut, and following what it and your instincts tell you, as long as it doesn’t lead you into not taking care of yourself. When I started Dad’s care, I was accustomed to having to cater to my chronic disease and fatigue before everything, so I was well-versed in being “selfish” with my time and energy. (It helped that we had the money to hire other aides.) I was determined that caring for Dad wouldn’t wear me out completely.

As well, I had never had much exposure to anyone with dementia, including how to communicate with them, yet Dad and I did fine together. I found that it was quite easy to let him remain in whatever internal world and time was most comfortable for him, and, since we were not incredibly close, I was able to make the shift from having him as a father, to someone I loved and was caring for. I told untruths, I redirected him when necessary, and reconfigured his environment to assist him. And I did most of this on my own reconnaissance. I pretty much winged it for the first year or so, and we did fine.

So yes, find classes, consult experts and other caregivers and forums and websites, for the best ways to give care for your loved and yourself. Try to get the right information so that you can start out right and hopefully remain in control of the situation. But don’t discount your gut, and your instincts – they can be powerful experts as well.

Friday, January 30, 2015

Teepa Snow Interview.

This is an amazing interview with the amazing Teepa Snow! She is so insightful and commonsensical in her approach to those suffering from dementia. We should all follow these straightforward guidelines with our loved ones.

Monday, January 26, 2015

Cancel Christmas, and Other Helpful Tips.

Over the holidays, I helped a caregiver with the type of problem that is unique to caregivers of people with dementia. I won’t mention her name but I asked her permission to write about it because I thought it was such a perfect example of how we can make our lives – and the lives of our care receivers – a little bit better.

This caregiver is caring for her mother, who has Lewy Body dementia and is currently on hospice care and getting more and more frail. She is still somewhat lucid and verbal, and enjoys spending time with family, and my friend. It being the holidays, my friend had lavishly decorated her home in the traditional manner, was baking and preparing holiday foods, and friends and family were stopping by and making plans. But she noticed that something about it being Christmas, which her mother was very aware of, was triggering her mother and was making her more and more agitated.

Her mother would ask after her own parents – where were they? Why weren’t they around for the holidays? She wouldn’t, or couldn’t, take in my friends reassurances and distractions. She would also ask after her husbands, both of whom were dead, and become sad and agitated. She would ask to bake or help decorate, which she was too frail to do. It was her surroundings that were causing her to remember what would normally happen during this time, and, of course, her disease was making it impossible to know why things were now different.

The idea popped into my head as my friend was talking, and I said, “Since it’s Christmas that is agitating her, maybe you should make her think that Christmas is over. Tell her it’s January!” We sat with this for a minute, and I could see her face at the thought of giving up her Christmas cheer and lights and loveliness. I suggested that since her mother isn’t very mobile, that maybe taking decorations only out of the places she would see might also work. My friend promised to go home and think about it. In the end, she did reduce the decorations and over-stimulating objects and events – at least where her mother could experience them – and it worked. There was much less agitation and upset and a lot more peace, and my friend still got some of her Christmas cheer.

It just made me think about being creative and using our imaginations to make things different for our care receivers. If your care receiver would be more comfortable with a different environment or slight changes in the structures around them, or even in thinking it’s a different holiday or season than it actually is – why not make it happen? Some facilities will paint the door out of the memory unit to match the wall, or make it look like something else because the sight of the door agitates people too much. There are all sorts of tricks and things to try that soothe and comfort and help the situation.

Think outside the box! Be a little crazy! Buck convention and don’t let anyone or anything tell you what “should be.” Pretend Christmas is over even though it is December 3rd, and take down the decorations! Have another family member bake the cookies and bring them over so the smell isn’t in the house. YOU still know what’s what but your care receiver will be more comfortable and less agitated, which will in turn make your life easier. Look around their environment today and think of ways to make it a better place to be.

Tuesday, January 20, 2015

Donation Update!

Just wanted to post a quick donation update to the LBDA from the sale of my new book!


Whoo! And thank you to everyone who has bought a copy and helped me donate to a very worthy organization,