Saturday, April 26, 2014

Help for Sundowning.

Here is a link to a great article/video about dealing with sundowning. For those who don't know, sundowning is a syndrome that can affect dementia sufferers in the afternoon, causing depression, acting out behaviors, emotional outbursts, agitation and anxiety.

Although we aren't sure exactly what causes it, the theory is that changing light levels affects chemical levels in the brain. Here are a couple of good ideas for helping your loved one deal with the problem.

Tuesday, April 22, 2014

There Are Apps For This?!?

Let me first say that there should be absolutely no shock that I didn’t know about what I’m about to write about, considering that I am the last person you would call tech savvy. I do surf the net, of course, and look around for other blogs, and resources for caregivers, and, of course, I’m a big fan of internet shopping and book ordering but, I do not on a consistent basis use my laptop or my phone as the inimitable doorways to assistance, entertainment, information, and illumination that many others do. I am boring - and old - that way. (Although I shouldn’t really say ‘too old’ because my husband is older than I am and he knows quite a bit about, and utilizes many different, apps. Maybe I’m just lazy.)

Regardless. When I was doing research for my new book, I was trying to make the point that while technology and the Internet has, in many ways, revolutionized caregiving and how caregivers care for themselves and tell their stories, caregiving is still something that is done by instinct, by hand, from the heart, on the fly, and without the “apps” that we have all found so handy for doing everything else. Imagine my surprise to find out I was wrong. There ARE apps for caregiving.

So, I guess I have to face the fact, not only that I am something of a Luddite, but also that my point was even more true than I first thought: technology really is revolutionizing caregiving, and thank god, because something had to. Google alone has helped us diagnose our loved ones (and ourselves); find better doctors; investigate drugs that will help and products that will monitor and rescue; and locate services and people that will help us care. Through their websites, organizations dispense support and information, and even more resources. And don’t forget about blogs, which help us know we’re not alone in the wilderness, and sometimes make us laugh about the unlaughable.

So, all my fellow caregivers (who probably already knew all this)…spread the word! Tell other caregivers about apps you find, and blogs you love, and websites you discover, and every other cyber instrument that helps you do your job better, enjoy your life a little more. Better yet, tell me and I’ll pass them on. I’ve listed a few I found below.     One of the best information blogs on the web.     Has a state-by-state exhaustive list of resources and information. Fab.  The Lewy Body Dementia Association.    Lots of good stuff on LBD.    Hospice information.    Alzheimer’s information.    A list of the most-used apps and how they rate.


Tuesday, April 15, 2014

Square Peg.

One of the things that make Lewy Body dementia such a tough thing to diagnose is the capriciousness of its symptoms. Alzheimer’s can be a little more straightforward: the sufferer starts forgetting people they know very well, tasks they know how to do, and places they’ve been to for years. It then progresses on to other cognitive issues like decision-making, self-care, and executive abilities. It doesn’t tend to change day by day – people aren’t usually able to do something one day and not another. The progression is pretty predictable.

Patients with Lewy Body, on the other hand, can seem relatively normal on one day, and be completely non-functioning or unmanageable the next. It is one of the issues I hear about most from caregivers: “Yesterday Dad seemed fine, then today he doesn’t know who I am and he keeps talking to imaginary creatures. It’s like he doesn’t really have dementia sometimes. Is this normal?” Insofar as there is a “normal” in dementia, yes, this is normal.

It is one of the toughest realities of LBD. You can’t predict where in the brain it will settle or what functions it will affect or remove, and – even more strangely – sometimes some of those functions will come back! There’s no telling what is fully gone, or only obscured on a particular day, and what will come out from your loved one. They could remember your name and who you are one day, and not even recognize you the next. This, of course, only adds to the stress.

Dad was diagnosed with Alzheimer’s, but it never really fit him. Yes, when we took over he wasn’t feeding himself properly, wasn’t caring for his finances, and had some serious cognitive and executive-function issues. However, he remembered a lot, could figure things out, and was able to do a lot of things for himself. The fact that he was kind of high-functioning made things more difficult because at first I had to convince him to do what I needed him to do but also because he knew he wasn’t supposed to be with the barely-lucid people in the dementia ward, and it was hard for him.

Even though he hasn’t really talked much for the last three years, or spoken my name, or indicated in any way that he knows me – I’m sure that more is going on behind those eyes than he lets on. And I’ve thought that for a long time. When I found out that LBD sufferers don’t necessarily lose their memories or some cognitive functions, I knew that I was right – he was probably thinking more than I thought he was. I can only hope he isn’t aware of his situation anymore – I don’t think he is.

And that’s the problem with LBD. People who have it but who are diagnosed with Alzheimers are square pegs being fit into round holes. The problems won’t be the same, the solutions and medications won’t be as effective, and could actually be harmful, and people don’t know what to expect or how to respond. If your loved one seems like one of these square pegs, you might want to find out where they do fit: there are lots of other possibilities like Lewy Body dementia, Frontotemporal dementia, and Vascular dementia, to name a few.

Check out the new "Lewy Who?" campaign at the Lewy Body Dementia Association.

Tuesday, April 8, 2014

Great Stuff for Dementia Sufferers!

OMG. You have to look at the picture of this thing on Amazon. Such a great idea!

Alzheimer's-Dementia Activity Hand Muff Puppy

Price:$59.95 + $9.90 shipping
In stock.
Usually ships within 2 to 3 days.
Ships from and sold by GeriGuard Solutions.
The Alzheimer's-Dementia Activity Muff is a therapeutic hand product that provides comfort, warmth and activity to promote increased flexability and brain stimulation.
  • The muff helps to relieve boredom & anxiety about being alone. The wooden beads, ribbons and the soft squeezie ball (inside) are great for sensory stimulation. A comforting solution to those with "busy hands".
  • Made of cozy fabric, with soft smooth satin or faux suede pocket for personal essentials.
  • It also features movable marbles, strand of textured ribbons, loop of colorful wooden beads and a soft squeezable ball tethered within the center of the muff.
  • Machine washable.

Sunday, April 6, 2014

When Dealing With Non-Caregivers, Hold the Rancour.

Every week I spend some time looking at the many excellent blogs that I know of written by caregivers and those suffering from dementia. A lot of these bloggers are kind enough to list me on their blogs, or they stop by occasionally and leave comments, and I try to return the compliment. Inevitably, I will scroll down the list that most bloggers have of the blogs they follow or enjoy and I will click on those that look interesting, then click on links I find on those blogs, and so on. I also spend time on some Facebook groups I belong to and forums that I read. On all of these sites, I have noticed sometimes, a disturbing tendency towards attacking non-caregivers, or people who are uneducated about caregiving, or just others who say, admittedly, stupid things about caregiving.

I read a post the other day that was positively flaming with anger, describing a conversation that the writer had, or wished she had had, with someone who made a careless comment about dementia and those suffering from it. The writer was incensed that this person would not only make this comment but would perform the act that the comment described. The writer ranted about the stupidity and selfishness of the person and how she wanted to set her straight.

Other posts I have read elsewhere also lambast people who have made careless comments to the poster, or been thoughtless in their actions, or performed some other crime against caregiving. And believe me, I have been subject to some pretty stupid, and really hurtful, comments and actions myself. I have been abandoned by friends and family at challenging moments, and have had to listen to the ignorance of others who didn't understand what I was going through with Dad, and I have been angry. And I also understand that these blogs and groups and forums and posts are vehicles for caregivers to let off steam and deal with some very understandable and grievous stress and frustration. I can choose not to read them. I have also probably written some angry words myself.

However, I can't help but think that if we could just educate people about what we are going through, instead of yelling at them. If we could just help them understand what is happening to our loved ones - and, let's face it, may very well happen to their loved ones in the future - maybe we could help the next caregiver that person encounters, or maybe that person will do something caring or helpful at the next opportunity. In addition, we don't know what that person's experiences might have been, or why they are making the comment or performing the action. Perhaps the dementia sufferer they won't visit or are crude about was abusive to them. We just don't know people's personal stories.

A little more compassion, for everyone we encounter, might not be such a bad idea. Maybe if we held the rancor a little, as justifiable as it might be, we could change people, and the caregiving struggle, for the better, just a little bit.

Thursday, April 3, 2014

Holding On to What is Left.

There are many ways in which I feel I didn’t know my father. This is partly because his story started long before mine, and partly because he was so private and uncommunicative about his past and his thoughts and feelings that all I have are the bits and pieces he saw fit to tell me, or that I observed, or that I was told by others. This information may or may not be entirely accurate because it is impossible not to have altered this information, either through faulty recall or due to the effect of translating it through my own filters of belief and understanding. 

There are a few things about him I am familiar with or accustomed to – ways my heart still recognizes him as being my father, but there were so many elements about him that were a mystery to me, so many ways in which we were not close or connected, that I have been able to feel a peculiar detachment throughout much of his illness. Perhaps it made it easier that he wasn’t the most engaged father and that we weren’t terribly close because there wasn’t much that I missed about him, like I missed about my mom.
I read so many posts on Facebook and blogs and forums by people that mourn the loss of their loved ones to dementia, and wish for those people back in the ways they used to be. I have never wanted Dad ‘back’, or wished that he was the Dad he used to be. I have been saddened by all that he has lost and by the fact that he will never know my life the way it is now. But I think it’s more that I grieve the idea of how it would be to have a father now that I am an adult. Perhaps if your relationship with your loved one was similar, you’ll understand.
You can’t have back what you never had to begin with, but with a little grace, a little luck, and a lot of work, you can have something that is new and good.  I didn’t feel as if I needed to hold on to who he was which made it almost easy to adjust to who he became in his illness - the new person I would meet each day. I accepted each person that showed up. It was easier to adjust to what disappeared in him because there was so much I didn’t know about him. But I am doing my best to hold on for him to all the things he used to be and do and know.
For those people who are closer to their loved ones, who know them more intimately – everything they think and feel and have experienced – those people will have an even harder time as the disease progresses. They will have a much harder time adjusting to the loss of all they have known, valued, recognized, and depended on and they may have difficulties forging connections to who that person is now. Dad and I were able to make connections in our own way. We joked and teased each other, and had fun together doing simple things like walking and going to lunch. He also showed me a lot more affection as the disease progressed, and expressed his love and appreciation for me.
I may be an imperfect repository for Dad and what he was, but I am a necessary one - a memory holder and storehouse of as much as possible of Dad. The disease forced him to give up so much, and will eventually force him to give up everything. I believe that tiny elements of what makes my Dad who he is will remain within him until the very end, and I’ll do my best to hold on to who he was, as well. Long after he is gone, I will remember these facts and feelings so that he lives on in my memory. It is a gift to your loved one to listen to their stories, and to hold on to a little bit of their souls. My Dad and I have certainly had our issues, but it comforts me to run these memories through my mind and tell the stories to my husband, because in that way, a little bit of Dad remains in other people, as well.