Gift Ideas!

Here's a great link for the always-difficult task of Holiday shopping, which can be even more difficult when buying for caregivers or their care receivers. Happy Holidays!

http://www.caregiver.com/channels/alz/articles/holiday_gift_ideas.htm?utm_source=Caregiver+Newsletter&utm_campaign=966d9b2dfb-Caregiver_Newsletter_120315&utm_medium=email&utm_term=0_8c5d5e6a5e-966d9b2dfb-94106117&mc_cid=966d9b2dfb&mc_eid=100ae55e57

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.

Understanding.

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.

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.

https://ce.mayo.edu/node/3845

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.

https://lewywarriors.wordpress.com/

http://lbdtools.com/  This one is awesome, of course.

https://www.facebook.com/groups/lyndseywilliams/ This is a closed group so you must ask to be included but it looks great.

http://lifetimesthreelivingwithlbd.blogspot.com/

http://www.lewybodyjournal.org/

http://parkblog-silverfox.blogspot.com/

http://confessionsof1caregiver.blogspot.com/

Twenty-five Years.

Sunday the 2nd was the 25th anniversary of my mother's death. It was a hot, muggy afternoon and evening, just like the one the night she died, and I thought about my 19 year old self, sitting on the floor by the couch where she lay, reading late into the night and watching over my mom. She went fairly quickly, but I'll never forget her last, struggling breaths - wheezing and choking. I've since learned in my training that this is called Cheyne-Stokes respiration, and it is very common before death; it is labored and gasping.

I'm thinking about this also because a few weeks ago, I was sitting with Dad and he was sleeping in his chair. He was exhausted because earlier in the morning, his caregiver had urged him to walk around the house and visit with other residents, and I think it really wore him out. Even benign activities like these can be incredibly wearing to someone with dementia, and he looked done in. His face sagged, his body twitched, and I found myself watching his chest for his next breath - not something I usually do!

It occurred to me that he could die right then, after fifteen+ years of dementia and illness, this could be it. It was unsettling. Dad has been hanging on so long that I forget that at some point, probably sooner rather than later, he's going to go. I will be happy for him when it happens since I know he wouldn't want to live like this, but it really woke me up that it could be sooner than I think, and I'd better start preparing, emotionally, for the end of my father and the end of my care of him.

Fortunately, this weekend, Dad's house had their yearly barbecue and my sister, my dad, and I were all together for the anniversary of my mom. This is not something that happens often, all of us being together, and it really made me feel good. I was glad to be with my sister and my husband and my father and all the residents of the house, eating chicken and salad and enjoying the sun. I think our lives would have been incredibly different if my mom had remained alive, but I hope she was looking down on us this weekend - glad that we were all together.

Does the Story Ever Change?

This winter, I read the memoir written by Stephen Hawking's ex-wife, Jane, about their life together, their family, and the progressions of both his disease, and his fame. It was fascinating, not only because he is a fascinating man with an amazing brain - and illness history - being one of the few people who has survived so long with ALS, but also because of her, and her story. I ended up reading it from the perspective of a caregiver because so much of their story was about what she gave up to care for him, and it mirrored so much of what I see with caregivers and the elderly today.
 
By the time they married, he was already suffering the effects of his illness, and she took him on knowing it. However, at the time, doctors thought that he would only live a handful of years and die young, so I imagine she thought it was worth the extra effort of a husband with such a serious illness - wanting to have time with him even though it wouldn't be long. Instead, he ended up living, for forty years, with all the attendant difficulties, symptoms, and struggles of his illness - and she became his caregiver.

It broke my heart to read about how much she took on, and how long she managed their lives and his care, without much help. People assumed she was coping, and didn't offer help - even his own family didn't think she needed assistance; social structures assumed they had money because of his fame, and wouldn't help very much; Hawking himself refused to accept care from anyone else except her, and was in denial about how much care he actually required; and she had to fight for every bit of assistance and money they received. She ended up almost destroying her own health for his care.

Granted, this all started back in the sixties and seventies, before there were laws about disability access, and much support for caregivers. However, it struck me that things don't seem to have changed that much, even though we're in a century of miracles - the Internet, people living in space, instant connection around the world, and other technological marvels. We still live in a culture of assuming the family will care for the ill and elderly without needing outside help; expecting people to spend their last dollar before social help will kick in; and, it seems, willfully ignoring the massive challenges and struggles that caregivers face. It is unfortunate that things have changed so little in the last fifty years.

I do see changes that are being made, programs that are coming on line to help caregivers, organizations formed to fight for them, and provide services. The effort is just so woefully behind the problem, though, and I still see caregivers going under. We need more stories like this, to show in plain language the toll that caregiving takes on a family: policy makers and politicians need to hear these stories, so tell yours whenever you have a chance. Go to www.lbda.org and tell them your story - they'd love to hear it, and they will use it to help make as many changes as they can.

I Volunteer!

I have had a chronic illness since I was 21, and it has completely shaped my life. I wasn’t able to have a full-time career, I always have to negotiate what I want to do with how much energy I have, how much pain I’m in, and whether I’ll have the stamina to finish whatever it is. This is not an easy way to live but I’ve made my peace with it – for the most part.

The one place where I’ve had the most trouble, and I write about this in my new book, is the feeling that I’m not living up to my full potential. I have a lot of mental energy and focus, but I don’t have the physical vessel through which to channel it. I have had a lot of part-time jobs, or customer service jobs that don’t require an excessive amount of time or energy. The one profession I have had, I had to give up, even though I loved it and was good at it – therapeutic massage. I have struggled with my self-esteem and with wondering what I could do to make my mark, or use my mental abilities.

Taking on Dad’s care was definitely a time and energy commitment, but I was fortunate in that he could afford to pay me and other aides to care for him. I was able to quit the job I had at the time, and take him and his business affairs on as a full-time job, without the full time hours. I thank the Universe every day for this opportunity because I don’t know what would have become of us if he hadn’t been able to pay me. I doubt I would have been able to do as much to help him – and we may have had to ask the government to step in.

Once I had placed Dad in a loving Adult Family Home, I had a little more time and energy to once again feel the pull of doing something, being something. I also wanted to serve in some way since I’d been so fortunate in my financial freedom. I decided to volunteer and it has been the smartest thing I’ve ever done. It has given me a purpose, a vocation, and sometimes a reason to get up in the mornings, stretch my sore joints and get going.

Now I know, more than almost anyone, what it is like not to have the energy or the time to do what we need to do, let alone what we want to do. If you are a full time, full-on caregiver, I know you don’t have the time to spend time with yourself, let alone volunteering. But, if you are doing it part time, or your loved one has been placed in a facility, or has died – you might want to consider volunteering. Whether it’s with an organization that represents the illness your loved one has/had, or another cause you feel strongly about, or your local food bank or other charity organizations.

I started out with hospice work, then switched to bereavement counseling, then to the Lewy Body Dementia Association as a call counselor. (And the best thing about that last one was that I could make calls from home, so I didn’t have to wear myself out going somewhere!) I really love being able to be of service to others, and I hope I’ve made a difference in some lives. If you have the time, or are facing the next stage of your life, I hope you consider volunteering – there are so many organizations and foundations that would be overjoyed to have your time.

What to Do, What to Do?

It's Summer again, and it looks like its going to be a great one. This is the time of year when we want to go outside, do fun stuff, and generally enjoy our world. When you're a caregiver, it can be hard to find things to do with your loved one, either because it's not safe, or you've just run out of ideas.

Summer was always the best time for me and Dad when we lived together. He could swim in the lake, we took lots of walks at the various parks in our area, we even went biking and rollerblading a few times! He's too frail to go out much now but I do still really enjoy when they take him outside to the patio to enjoy the sun, the fresh air, and the gorgeous flowers at his home.

If you are struggling to find things to do with your care receiver - and they are still mobile - keep it simple. Take a walk or an easy hike, feed the ducks, go canoeing, plant a container garden, or visit one or more of the tourist attractions in your area. There are more and more Alzheimer's Cafes in bigger cities. It may surprise you to know how many programs your local county, city, or Parks Department have that you could do together. I also highly recommend Judith Levy's excellent, Things to Do With Your Parent Who Has Alzheimer's Dementia.

Whatever the level of ability of your care receiver, try to find something fun and interesting you can do together, or something you can involve them in so you can have some valuable time off. But if, like my Dad, your care receiver isn't able to do much, don't underestimate the value of sitting together outside, with a cold drink, fresh air, a garden... and your cowboy hat.

If you are in the Seattle/Pacific Northwest Area:

Seattle Parks and Recreation has several great programs, including volunteering, farm visits, zoo and other walks and fitness. They sound amazing! Contact Cayce Cheairs at Cayce.cheairs@seattle.gov or 206-615-0100

Alzheimer's Café's, www.alzcafes.org:

Tutta Bella Pizzeria
4918 Rainier Ave S., Seattle
Second Thursday 3:30-5:00

Luther's Table
419 S 2nd St, Renton
Third Thursday 3:30-5:00

Best Of!

Thank you once again to Healthline.com 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.

www.healthline.com/health-slideshow/best-alzheimers-dementia-blogs

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

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.

Presence.

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!”

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!

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!


https://give.everydayhero.com/us/lbd-caregivers-need-care

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

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.

https://give.everydayhero.com/us/lbd-caregivers-need-care

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.

Gone Missing.

I always maintain how lucky I am in the care that Dad is receiving, how thorough and compassionate they are in looking after him and how safe I feel he is. There is not much to complain about in regards to the Adult Family Home where he lives. Something has happened a couple of times now, though, that is starting to bother me - something special has gone missing.

I hear so many stories from caregivers about items that go missing in facilities; things that range in value from money to jewelry to glasses to clothing. My friends' mother had her teeth go missing and also a pair of glasses. She's in a big nursing home, though, and in those places patients wander into rooms not their own and take things, or our loved ones hide things and can't remember where, or clothes get lost in the laundry. And, unfortunately, sometimes there's theft by staff.

It's fairly common in the bigger facilities and most books recommend not bringing anything to a facility that you're not willing to lose. It's still difficult and frustrating, however, to have things taken from our loved ones' rooms. Frustrating and sometimes expensive. I know this, and we were lucky when Dad was in a bigger facility that nothing more than maybe clothes got misdirected; Dad had no hearing aides or teeth to lose, either. What I'm finding hard is that it keeps happening here!

A few years ago it was a quilt I made that I put in Dad's room; it made me happy knowing it was there. One day, though, I stopped seeing it and when I asked, nobody could find it. Ultimately, the owner learned that one of his former caregivers had taken it but he couldn't get it back. This time it's something smaller and less valuable, but still frustrating. I had several books is poetry and essays in Dad's room that I use when I read to him, as well as a nice, old Bible I found. When they moved Dad into another room a few months ago, the books didn't show up in the new one.

I asked the owner about Dad's books and he spent some time looking for them but still hasn't found them. I know he feels bad but I'm still irritated. Now I have to buy some new books, and I'm a little upset about the nice old Bible, too. I guess I should be glad all the pictures in picture frames made it over but he only moved ten feet - how hard can it be to move everything?

 I'm definitely going to tell all future caregivers I talk to not bring anything valuable to a facility - monetary or sentimental. If something goes missing, speak up and try to find it, but be prepared for never seeing it again. I know it's only books, and I guess I've learned my lesson about bringing something I'd miss. I can't say I'm not a little angry though that they couldn't have taken better care. And I still haven't really gotten over the quilt.

Other Dementias Need Better PR!

And speaking of Hollywood Alzheimer’s, as I did last post, what about the other types of dementia; not only in Hollywood, but everywhere? Alzheimer’s is not the only type of dementia there is. A lot of people don’t even know there ARE other types of dementia. In fact, a lot of people don’t even know that dementia and Alzheimer’s aren’t the same thing!

Dementia is not a specific disease; it is the umbrella term, as it were, for a group of cognitive symptoms affecting memory, thinking and social abilities, and what is called executive function. Dementia indicates problems with at least two cognitive brain functions, like memory loss and inability to perform daily activities. While Alzheimer’s is the most common cause of progressive dementia, it is far from the only one. And yet, since Alzheimer’s still has the best PR of all of the dementias, it’s still the one that gets the spotlight in the media.

In the beginning, Dad was diagnosed with Alzheimer’s dementia, by a very well-known expert in the disease. However, to me, with what little I knew about Alzheimer’s at the time – or dementia at all, for that matter – there was always a problem lining up Dad’s symptoms with the official symptoms. Dad’s dementia never fit, it manifested so strangely that it confused me and made things difficult.

He could do some executive functions, and perform some daily activities just fine, and he was very aware of certain things being wrong. He remembered a lot of things, but also repeated the same questions and statements often. As many caregivers find to their chagrin, he had enough presence and lucidity to make it very difficult to care for him at times. He wasn’t bad enough mentally for the dementia wing when we had to move him into it, and yet he had to go in there because he didn’t understand that he shouldn’t wander and run away from caregivers.

The moment I heard about Lewy body dementia, I was relieved to finally have some things explained! I recently ran into another caregiver who said the exact same thing about her husband: none of his symptoms or behaviors matched Alzheimer’s and yet that was all his doctors were willing to consider. Unfortunately, it led to a lot of problems in his care and years of frustration for her. And, since different dementias can react differently to different medications, not having the correct diagnosis can be downright dangerous for the sufferer.

Lewy body dementia - Parkinson’s-related, causing hallucinations, delusions, memory loss, physical limitations, and changes in day-to-day ability and cognition. Frontotemporal dementia – a group of disorders caused by progressive cell degeneration in the brain’s frontal lobes. Vascular dementia – memory loss, loss of cognitive function, and executive functions, caused by mini strokes in various parts of the brain. There are even some types of dementia that are reversible and/or temporary. I also have a friend who went through a tough time with her mother who was experiencing dementia-like symptoms - mixed with some psychotic symptoms - from a combination drug reaction/infection!

While I’m glad that Alzheimer’s organizations are getting the word out there and helping to increase societal and governmental awareness, and increasing research budgets… Alzheimer’s is not the only problem in town. Let’s get the word out about other types of dementia, increase research for all of them, but most importantly, get each sufferer the proper care for their disease.

 

 

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.
http://www.withalittlehelp.com/blog/teepa-snow-returns-to-seattle/

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.

Indignities.

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.

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.

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.

http://blog.beclose.com/?p=729

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 3^rd, 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.

Donation Update!

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

$15!!

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

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.

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.