Wednesday, January 13, 2016

Goodbye and Hello!

To all my readers, followers, and people who have found help and information on my site - thank you! Thank you for reading and commenting on my posts and for making me one of the top caregiving/dementia blogs. Thank you to other websites, as well, who nominated me for competitions and put me on "Best of.." lists - I was honored every time.

Some of you may have noticed that I haven't been posting regularly and that's largely because, while my dad is still alive and kicking, he's pretty peaceful and things are under control, so there isn't much to write about. I've been involved in helping and counseling other caregivers for a few years now, but I'm finding that I don't have as much to say about this subject as I used to, and I've cut back on my advocacy work, as well. One thing I do want to do is get back to my hospice work and continue with my bereavement counseling, and maybe even explore chaplaincy - there is more to be said about end-of-life issues and I hope to say some of them.

I've always had a lot of other stuff going on in my life - things that I wrote about - that never made it into my blog because it wasn't specifically about caregiving, such as my Rheumatoid Arthritis, being a step-parent, my journey with body/mind therapy, and my work as a bereavement counselor, etc. I continue to love to write, both as a way to process my life, and as a way to help others, and I wanted a bigger outlet for that. I've joked that I could write a couple of different blogs based on other aspects of my life; I decided to be efficient and just write one big one. I'll still be blogging about caregiving, especially as Dad's journey comes to an end.

I hope that you will join me on this journey and visit my new blog. I'd love to hear your comments and questions as I blog about different things, read and recommend books (like always!), and venture into parts unknown. I'll be leaving this site up as a resource for the next caregivers coming along. So here it is - goodbye....but I hope hello at my new site!

Thursday, December 10, 2015

Wednesday, December 9, 2015

Holiday Re-gift!

I'm re-posting a holiday favorite. Happy Holidays to you all and a very Happy New Year!

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.

Thursday, October 22, 2015


I've just started following a Lewy Body dementia patient/caregiver group on Facebook and, although I am a member of Memory People, another dementia group on FB (doing great work, by the way), this LBD group is more specific to what I do and see and has allowed me even greater access into regular caregiver's experiences. People are dealing with heart-breaking daily events and challenges and are doing their absolute best in trying circumstances.

A very energetic and angry series of postings caught my attention the other day and it made me think yet again about how regular people treat caregivers and caregivers treat caregivers. The post-er was incredibly angry at what she perceived as yet another person commenting on her life, and that of her care receiver. Apparently this person had listened to her story in the store; the caregiver's older mother had LBD and was suffering. The listener commiserated but said she believed that her older mother was doing so well into her 80's, sans dementia, because she had kept her mind busy, had been social and engaged with others, had kept healthy with her diet and exercise, and was involved in social and domestic projects.

The caregiver was furious, not only at what she felt was a possible condemnation of her mother's habits - or her own dedication to her mother - but at the fact that she hears similar comments all the time; that if only her mother had been social, or mentally busy, or whatever, she would have been fine. That it was, in fact, her mother's fault. Many, many caregivers agreed and expressed their frustration at people - and the media - assuming that all of these poor people with dementia must have not kept their minds busy, or eaten the right diet, or did puzzles, or whatever. They commented on all of the incredibly smart people in their lives who were rocket scientists, engineers, writers, etc., who still had dementia.

I really understand their frustration. While it's true that keeping your mind busy and engaged, and eating the right foods, into your later age is helpful, its not a guaranteed ticket to non-disease. Dementia strikes the incredibly intelligent as well as the average, man and woman, young-ish and old. However, my dad, while an amazingly smart engineer, was also depressed, anti-social, and withdrew into his own world - so there is something to be said for the theories about keeping oneself engaged.

So what I guess I really want to advocate for is tolerance on both sides; caregiver and random stranger. I know it is so hard to have your life and work as a caregiver commented on by people who really have no idea; so maybe random strangers could think twice before making those comments. We all have the instinct to help by telling people what has helped us or people we know. Believe me, I've been the recipient of everyone's treatment for Rheumatoid Arthritis, and I'm sure I've turned around and done it to others. In Bereavement training, we learn to help people in a group say things like, "What worked for me is..." instead of, "You should..."

And, caregivers, maybe you could take a moment to be patient and educate these random people instead of getting so mad. Who knows, one day these people might be dealing with the same problems as you, and a little help from you years earlier might help.

Thursday, September 24, 2015

International Dementia with Lewy Bodies Conference - in Miami!

I know, I know, what caregiver has time to attend a conference for three days - or the money to pay for it? However, it IS in Miami, which is a great place to attend a conference, and since I've been helping to plan the caregiver side of things, you can be sure it's going to be good.

An interesting feature will be the scientists, who are there to present papers and talk to each other, however, several of them are being shanghai'ed to talk to care families and give the latest info, research, drug potentials, etc. Worth going for that! There will also be many - short - workshops, with plenty of time to rest and talk to other families in between, and lots of really interesting speakers, many of whom have been caregivers so they know whereof they speak. And, of course, the Miami sun - in December!

It's being hosted by the Mayo clinic and here is the web link if you think you might be interested. Go to the sidebar and click on the Patient and Care Partner Track.

Wednesday, August 12, 2015

New Places!

I've been looking for some new LBD blogs and groups; many of the ones I knew aren't current because the care receiver is gone and the caregiver has moved on to other things. Here are a few groups and sites I've found that you may not know about and I hope you find them as interesting as I do!
Also, there is an International Dementia with Lewy Bodies Scientific conference coming up in December in Miami that is including a two-day caregiver/care receiver track. I'm on one of the committees helping to plan it and it's probably going to be a great experience, full of the latest scientific info and research, and support. I'll be posting more about it as we get closer to the date.  This one is awesome, of course. This is a closed group so you must ask to be included but it looks great.

Wednesday, August 5, 2015