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,

Friday, January 16, 2015

Monthly Mood Swings.

Dad's mood swings never fail to amaze me. And they're not hourly or daily mood swings that I see, although I'm sure he has them. They are kind of monthly mood swings. For a while there he seemed really cranky every time I visited. He would look at me sideways, from under his bushy brows, and I would feel the definite message of, "Don't touch me or try to be nice to me because I'm just not having it!" So I would try to walk quietly and not irritate him.

Lately, though, he's been much more approachable, when he's not dozing. I went to see him yesterday and he was snoozing lightly, so I sat on the bed, figuring I'd just hang out. Then his eyes opened and he stretched a little bit. I waited to see if he was going to go back to sleep but he stayed awake so I decided to let him know I was there.

Another thing he's doing lately is not really looking out, or up. He focuses down to the ground and you really have to work to make him move his eyes up. I braced myself on his chair arms, tilted my head way over so that my hair was swinging, and finally managed to catch his eye. I'm sure I looked silly, which was confirmed when he really focused on me and gave a very faint version of the sarcastic eyebrow lift/smirk that he does when he finds something funny, like the caregiver he likes going forehead to forehead with him.

I slowly tilted my head back, holding his eyes with mine, and crouching down a little so he was looking straight at me, and I smiled big and said, "Hi, Dad, it's good to see you!" He gave me the sweetest, big smile and said, "Good!", which seems to be his multi-purpose word - along with a little chuckle. I have to say - even though I've emotionally moved some ways away from him as my father - it gave my heart a little jolt. It was nice to see him look at me with friendliness.

I spent the rest of the visit crouched next to his chair, reading Walden to him; something he seemed to enjoy, although he gave me puzzled looks sometimes, as if to say, "What are you doing down there?" It was nice to be next to him for a while and I crept out quietly when he dozed off again. I don't know what his next monthly mood swing will be - perhaps we'll get back to moodiness - but I'll enjoy the friendliness while I can.

Monday, January 5, 2015

The Determination of Denial. (Book Excerpt)

I've written a lot about denial but as it's one of the central issues of caregiving, as it were, it tends to come up a lot. I remained in denial of my father's symptoms for a good few years before I was finally forced to do something. It took him wandering in the cold and dark several times - being picked up by the police - before I reluctantly took a look at his home situation. What I found there disturbed me. He had been eating only carbohydrates, living in one tiny area of the house - without heat, not washing his clothes, and spending too much time alone.

I was immobilized by the fears of what my father having dementia would mean to me. At first, I was too sick and tired to want to act, and then I was too happy with where my life was heading to contemplate the huge earthquake that was my father’s potential dementia. I’m not proud when I say that I have no idea how far I would have let things go. Accepting my father’s dementia required all the things I was afraid of: rearranging and adding a burden to my own life; discussing unpleasant truths with my ill Father, convincing him that he needed to give up years of life and independence; and breaking through everyone else’s denial process as much as possible so that we could all be happy and safe. 

So many people report having seen worrying signs of dysfunction long before a crisis, and are subsequently angry with themselves for allowing matters to reach critical mass before stepping in. I can only tell them my own experience and that it was solely by the grace of God that nothing too damaging happened. This is not easy stuff. Perhaps you’ve started seeing the same kind of things that I did - maybe worse, maybe better - but you haven’t yet acted on it. One of my worst moments was discovering that my father had been eating so poorly - it was unclear whether he got any proteins or vegetables – and living so roughly and uncomfortably.

Maybe you’ve noticed your loved one isn’t as well-groomed and dressed as usual, or that they are forgetting basic tasks like going out for groceries, paying bills, or feeding themselves. Maybe you’ve noticed that cognitively, your loved one is still lucid, but they are staying at home more, not doing favorite past-times. Maybe they just don’t seem well. There are lots of resources now that tell individuals what signs to look for, but that still doesn’t make it any easier to take that first step.  You will always question what you are seeing and feeling.

Sometimes a situation progresses slowly, like ours, making it easy to ignore or put off what needs to be done. Sometimes, the health of a loved one can change in as little as a few days, a week, or a month, causing a crisis - since nobody is prepared for it, it can be difficult to accept and adjust quickly. We’d rather play it safe, believe in a comfortable lie for as long as possible, than have to deal with painful reality. 

You will never get me to say that it was anything but agonizingly difficult and a huge challenge to trump my excellent training in denial. It is why I empathize so much with new caregivers who have so much to fight through before they can get down to what needs doing. Everything did work out, more or less, for the best, however. I do believe that putting denial behind me changed me for the better and initiated an amazing growth process. Being able to see and deal with my fears helped me help my father through the hardships that were to come.

It may take an incident, accident, a visit from the police, or trip to the ER before we can shrug our way out from under denial and take charge. In our case, I’m glad that nothing worse happened – that nobody was hurt or killed because of our inability to face the truth. Going against denial, however, meant going against a lifetime of training in the subtleties and fine points of disavowing reality. It’s important to at least be aware of our denial, even if we can’t yet force ourselves to act. But eventually, we will be asked to lead the way by accepting the responsibility of addressing, managing, and being honest about the emotional and physical realities of the situation.