Friday, May 22, 2015

Best Of!

Thank you once again to for voting my blog one of the 25 Best of 2015! What an honor to be consistently included in this talented group.

I urge you to check out the list of blogs since there are a few different ones this year. I am also heartened to see that there are a few Lewy body blogs - more than I have ever seen before.

Thank you to Healthline for making us bloggers available as a resource to your readers!


Thursday, May 14, 2015

The Symptoms of Grief.

I've been co-facilitating another Grief group through the hospice organization I volunteer for. The participants of these groups are always so different in terms of age, and which of their loved ones died, and how. The thing that unites them, of course, is that they are grieving a loss. We have an even mix in the group of those who have lost a spouse and those who have lost a parent; however, all of them died after some sort of illness, and most of them were on hospice at time of death. I make this distinction because we have had people with sudden losses, accidental or otherwise, and it can make a difference in the grief, to a certain extent.

I've done these groups before, and I tell my husband a little bit about them in the six weeks they usually last. The other day, though, he asked me why people attend the group, which I thought was an interesting question. We don't talk much about grieving and loss in this country, which is to our detriment, I think. Unless they have done some research or reading or been exposed to grief before, most people don't know much about it, or what it looks like, or the course it can take. They can be confused at some of the things they think and feel after a loss. They can also be confused, and sometimes angry, at the response they get from other people, even those closest to them.

We don't teach people that there is no "normal" when it comes to grief. Pretty much everything that people feel is a part of grief. We don't tell people that grief can be a physical process. It can make you feel exhausted all the time, it can give you energy, it can make you cry a lot - or not, it can make you feel achy and sick, spacey and forgetful and disoriented. It can make driving difficult, or doing other tasks, or keeping a schedule - some people have said that they drive right past their houses, miss appointments, and forget how to do things they've done forever. Different people handle grief differently; some may find they get through the process quickly and get back to function, others take longer.

We talk about "ambiguous loss" and anticipatory grief, which essentially means that people have had at least a little time to prepare for the loss and start their grieving process. This can be helpful but it doesn't mean that they won't feel strongly when the actual death occurs. Loss can also bring out anger - at the loved one, at God, the family, doctors, or friends - and guilt at being the survivor, or because one feels they didn't do enough somehow. We also don't realize that our roles will change after a loss. We may lose roles we held, such as caregiver or spouse, and take on new ones, such as new head of family. We also may have to take on the tasks and specialties that the loved one did, since they are no longer there.

Unfortunately, we also don't teach people how to respond when someone they know suffers a loss, which leads to confusion and distress when the griever doesn't feel supported. People often don't know what to do, or how to help, so they disappear from the grievers life. Alternatively, they may be over-helpful, or bring up their own experiences with grief, or have too many suggestions on how the griever should be feeling or what they should do. People often feel uncomfortable witnessing grief and may want the griever to "be strong" or "get over it" - basically to be the person they used to be. I tell everyone who asks that the best thing you can do for a friend who is grieving is just to be there: be the voice on the end of the phone; sit quietly with them and listen to anything they have to say; make concrete offers of help and then follow up.

The more we talk about grief and loss, the better. Grief groups help people talk about their grief, their loved one, and their lives moving on. Groups help give people the tools to work with their grief, and all future losses. And, I realized as I answered my husband, learning about their own loss and what grief looks like, means they can spread the word and help the next person who suffers a loss. It feels good to be training unofficial grief counselors, who can help spread the word about grief and how to deal with it.

Friday, May 1, 2015


It’s been a long time since I cared for Dad on a day-to-day basis; something like eight years now. Time, of course, blurs events so that when we look back on them, it’s hard to remember exactly what we felt or experienced at the time. I tell stories about me and Dad and what happened, but they’ve become flat narratives for me and they don’t really affect me anymore. Every now and then, however, usually when I meet a caregiver who is right in the thick of the tough stuff, I remember all the feelings and things I went through.

I used to spend from Sunday afternoon through late Tuesday evening with Dad, living in his house, responsible for his well-being, entertainment, and physical and mental health. He was still fairly lucid, and could still take care of a lot of his own self-care, but I cooked, and drove, and cleaned, and shopped, and entertained. I spent a lot of time thinking up activities for us to do to avoid boredom, and most of the time I succeeded. It was exhausting, however, and when I think back and wonder why it was so exhausting, I realize that it was because I had to be so “present” – all the time.
If you think about it, most of us are fully “present” only periodically throughout the day. Much of the time, we are a little checked out, doing things on auto-pilot comfortably. At other times, we are relaxing, letting our minds and bodies rest. However, when you are a caregiver (and, probably, a parent) you are “on” almost all of the time. You are forced to be present and aware and prepared for anything your care receiver can get up to, including disappearing in a crowded mall, which happened to me once or twice with Dad.

Even when Dad was present and accounted for, I had to be available to him mentally and emotionally. I was always making sure my attitude was good and I was listening to what he was saying and what he needed. I was interpreting his repeated sentences, and garbled phrases for what he was actually trying to say to me. I was making sure I was always aware of the atmosphere and environment around us, including whether he was doing something that might freak someone out, or someone else was doing something that might freak him out. Even just being at home, or sleeping, was tough because I was always waking up hearing things, or making sure he was safe and not leaving appliances on. And, in our particular situation, I was worried about something vital falling off the house, seeing as it was in such poor repair!
Of course, cooking, cleaning, shopping, and dressing someone are all tiring but I remember the being present part as the most exhausting. I wonder if that’s how it is for other caregivers? I remember going home exhausted on Tuesday evening, and being tired and a little out of it on Wednesdays. And I’m one of the lucky ones; I could go somewhere else after a few days, unlike many other full-time, family caregivers! These days, I see Dad for a few hours a week, and he doesn’t move or talk much, so I forget how things used to be.

I really urge caregivers to be aware of this hyper-awareness because it’s something you just get used to doing and it can totally wear you out before you realized what’s happening. And for non-caregivers, who may wonder why their caregiver friends are so exhausted even though they’ve just been sitting around at home with their care receiver. Physically, they might not be doing much, but mentally and emotionally, they’re getting a full-on workout: being “present!”

Monday, April 20, 2015

Seattle Alzheimer's Conference - Amazing!

It was a truly amazing day at the Seattle Convention Center - amazing and a little heart-breaking at the same time because all of us were there because we have either been touched by dementia or we work to help those who have.

I met so many amazing family caregivers, including one woman that my companion and I spent a half an hour talking to, about her husband and the incredible trials they had already undergone - as well as the ones she feared were coming. So many people touched by the devastation of dementia in a personal way - it was a privilege to talk to them.

I also met many professional caregivers and people who ran facilities and support groups. There were two women who ran an Adult Family Home in another state who I adored - they were so matter-of-fact in describing the troubles they had keeping staff and keeping their residents happy and healthy; even the ones who had very disruptive behaviors. Both women said, when I commended them on accepting problem cases, that nobody left their facility until they were rolled out, no matter what they were doing. I love that!

There were lots of exhibitors; attorneys, facilities, care managers, and health care companies, as well as the local non-profit groups who were trying to spread the word about their free services or about planning out your end-of-life. All of them were friendly and knowledgeable and obviously felt strongly about what they were doing!

And thank you to the excellent care and friendliness of the Alzheimer's Association Washington, who fed us lunch and looked after us while we tried to look after those who needed help and information. Altogether a rewarding, if tiring, experience!

Many, many grateful thanks to my husband Paul, and to Julie and Nancy, my support group volunteers, without whom I would have been overwhelmed!

Monday, April 6, 2015

Care Package Rocks!

A luxury haircut, valued at $75!
Three hours of house cleaning, valued at $200.
Two hours of massage, valued at $140.
Teepa Snow videos, valued at $80. (Information on them? Priceless!)
Kauian soaps, valued at $30.
Signed copy of A Caregiver's Guide to Lewy Body Dementia, valued at $20.
A cozy West Elm throw, valued at $50.
Tea, coffee, honey, a lovely to-go cup, valued at $50. And more!

Please donate, whatever you can, and make sure you leave your name and/or your email address so I can add you to the drawing for this amazing Care Package!

ALL proceeds go to the LBDA - goods and services have been donated by my friends, family, and me!

Thursday, April 2, 2015

Caregiver Care Package!

Greetings readers, caregivers, and families! My first fundraiser is up and running and I invite you all to visit the link and take a look. As a thank you to everyone who donates, I am giving away a Caregiver Care Package packed with lovely goods and services. Please check out the link for details; whatever you can donate, whether it is $1 or $100, you will be entered if you either make sure to donate under your name, which I will use in the drawing or include your email address in your message. I wanted to do something nice for caregivers, but, of course, you don't have to be a caregiver to win - there are lots of other goodies non-dementia related.

I know most of my readers probably don't live in Seattle, and all of the services, donated by friends and family, are located here. If you win and you're out of town, I'll send you the Care Package goodies (with a few more thrown in) and you can donate the services to a local caregiver.

 All the money goes to the LBDA, which does an amazing job supporting caregivers and families, and spreading awareness about LBD. I'll be posting updates here from time to time, and thank you again.

Sunday, March 29, 2015

Reading Robert Frost.

As I have said before, if Dad is awake and alert when I go to visit him, I really enjoy reading to him. The Bible is a big choice, of course, because he knew it so well during his lucid days, but I often read to him from a collection of various poems, or from Walden. Unfortunately, of course, the last time I visited, his books were missing and I realized I had nothing to read from. Until I also realized that I had my phone with me.

I am the very first to admit (and, in fact, have written in my book) that I am not the most tech-savvy person. I still don't use my phone in the myriad of ways that people much more apt (and younger) than I use theirs. I have a few apps, but don't use them much, although I enjoy checking email and even blogging on my phone. The other day, a friend and I were hanging pictures at my house, and we couldn't both see how they looked because one person was holding them up while the other viewed from a distance. Suddenly, she suggested taking pictures with her phone, which we could then view; a solution that seemed so simple and yet so modern!

Anyway, I have started Googling all sorts of things on my phone, so I looked to see if I could find certain Psalms that I remembered. I found a bunch of links, in both the King James version, and other, more modern translations. I read several Psalms to Dad, which he seemed to enjoy. Then, looking for something else, I remembered Robert Frost.

I've always enjoyed Frost's work - who doesn't? I realized I've only really looked at his more well-known poems. As I brought up poem after poem on poetry sites, I got a better idea of the scope - and beauty - of his work. As I sat there, reading aloud to Dad, enjoying Frost's imagery and cadence and use of words, I felt myself relaxing and really enjoying myself. Every time I looked up at Dad, he seemed to be enjoying himself, too, closing his eyes every now and then as if to better enjoy the words. It was a very lovely afternoon.

If you've never investigated Robert Frost's poems beyond the popular ones taught in school - I urge you to do so. They are both lovely and complex. And if you've never read a Frost poem to a loved one - especially someone with dementia, or who is ill or confined to bed - I urge you to do that too. It might lead to your very own lovely afternoon.