Wednesday, January 23, 2013

Dad, Past and Present.

I went over to visit Dad today. It's cold and rainy and dark here, so when I got to his room and saw him stretched out on his lounge chair under a blanket, I thought to myself, "That looks like a great place to be!"  He looked so comfortable, I thought he was asleep, but as I crouched down to look in his face, he opened his eyes and really looked at me, and then smiled.  I've said here before that I'm really not sure he knows who I am, and I'm still not sure, but today his eyes were so clear, faded blue, smiling as he saw me smiling at him.  It was nice to feel like he knew who he was looking at.

I've been thinking lately about how Dad is now - sleepy, sedentary, disliking to walk too much -  and how he was six or seven years ago when he still lived at home and I lived with him.  Then, he had almost too much energy, and his aide, Del, and I had to wear him out as much as possible!  I remember our rambles fondly, now, though.  We took long walks around Green Lake here in Seattle, and along Lake Washington, watching the ducks and the sailboats.  Every day I was with him was a walking day if the weather was decent.

We had other adventures, though, that I remember.  Dad loved to go grocery shopping and test out the carts.  One of our favorite things to do was go through the car wash with its multi-colored soap and big brushes.  I took him rollerblading a couple of times, which was, to say the least, interesting.  And we always went somewhere for lunch; somewhere we could get a Coke and a salad or fish and chips, nothing fancy but out in the world.  The thing was that Dad always seemed to enjoy himself wherever he was, which took me a while to get used to since that's not how he was when I was growing up.  I learned to enjoy the new Dad, though, and we had fun together.

Now, as I sit with Dad and the rain falls outside, and he dreams, perhaps of skiing down a mountain or flying through the clouds, I kind of miss these little ventures out into the world.  None of these things were really all that special, and I know at the time that I sometimes got tired and bored and at my wit's end., but they are things that we can no longer do together, and as such, they seem special. 

Friday, January 18, 2013

Competitions Everywhere!

Well, it looks like I've been nominated in a second competition; Best Blog by an Individual in's 2013 Senior Living Awards.

I know, I know, more voting, but I'd really appreciate a vote on this nomination as well.  Just click on the little yellow badge on the sidebar. 

These are big honors for a little blog like mine, and they'll only help me get my message of caring for the caregiver out to more of the people who need to hear it.

Thank you!

Thursday, January 17, 2013

Caregiving... Hold the Shame.

I was recently on Facebook (who isn't?), and I came across a link to an NBC news story about caregivers and how they neglect their own health and well-being in service to their caree's.  I've posted a link to the story below because it is actually a good story, as well as being one of my biggest action items/talking points.  It focused on one gentleman who is bringing up his own children while at the same time caring for his mother, who has dementia.  It also detailed how his health was breaking down because of what he was doing.

I am very conversant with exactly how poorly caregivers treat themselves because they are spending all their time and energy on their charge.  It is one of the things I always get caregivers to talk about when I meet them, both because they need that chance to vent, but also because I can then give them options on other ways to take care of themselves as well as spread cautionary tales about what happens to the health of caregivers who neglect themselves.  I get pretty bossypants about it, at times!

As I said, the article brought to light a pervasive and serious problem, in a fairly straightforward manner, and I would have had nothing against it except for one sentence that caught my eye and instantly irritated me, highlighting as it did what I believe to be another pervasive and serious problem.  The sentence is as follows: " Prater is among the millions of Americans who have stepped up to do the right thing and take care of family members who can’t take care of themselves." The part that really irritates me is the part about, 'doing the right thing.'

When we have to perform a difficult task or go through a challenging time in our lives, it often comforts us to believe that its for a higher purpose, or greater good; that we are good people because we are doing this difficult thing.  Caregiving can be like this; sometimes it is comforting and helpful to believe that we are good people, or doing the right thing, or serving a higher purpose, because of the effort and sacrifices we are making - the love we are showing.  I'm all on board with that - it has, in fact, helped me through some hard times.  The thing I dislike is the implication that ONLY those people who physically care for their loved ones, 24-7, are doing the right thing.

Sometimes, the right thing is finding a good facility for your loved one because you know that's where they'll get the best care.  Quite often, the right thing is hiring a professional caregiver to help you help your loved one because you aren't physically or mentally capable of giving them the best care - the care they deserve.  Personally taking care of your loved one is not the only way to do the "right thing".

There are hundreds of ways you can love and serve and be present for your ill loved one that don't involve physically caring for them.  I reason I know this is that I had to give up care for my Father because I knew I couldn't personally give him the care he needed and deserved, and I feel that this is how I did 'the right thing".  There should be no shame in caregiving!

I guess my message is, there are a lot of ways to do the right thing; do the one that works the best for you and your loved one.

Keep on voting!

Friday, January 11, 2013

Why Is It So Hard?

 I want to talk about something really important, something that doesn't happen nearly as much as it needs to, something that many people find really, really hard.  I'm talking about...talking, more specifically, talking about end-of-life events and decisions.

Statistics tell us that 60% of people say that making sure their family is not burdened by tough decisions is “extremely important”, however, 56% have not communicated their end-of-life wishes to their family.  Do you see the disconnect here?  Families across the country have no idea what their loved ones want in relation to some of the most important decisions out there! 

What could be more important than your wishes about health care and whether you want serious intervention in the case of an illness or injury?  Is there anything more important then how you want to die, and what you want done after your death?  I know these seem like difficult conversations to have, but are they really?  Or should we just buckle down, remove the emotional stigma, deal with our fears...and talk?  Talk about what really matters.

I have heard so many stories from families who are facing the huge burden of making healthcare decisions for a loved one without truly knowing what that person would want.  I hear about arguments and stress between family members trying to decide what to do with the body of a loved one, what kind of funeral or memorial they would have wanted, and what to do with personal effects.  The last thing we should be doing while dealing with the grief of losing a loved one, is stressing out about feeding tubes and funerals.

My father and I didn't have an official talk about his medical wishes, so I have had to extrapolate what he would have wanted from how he lived his life and his religious beliefs.  We did manage to have a surprising but pleasant talk about death and what we each wanted done with our bodies after our deaths, so at least I have that covered.  I think he would want a memorial that was for us and our comfort, not really about him, but, then again, I don't know for certain.  There are many conversations I wish we'd had when we had the chance.

There is a growing movement urging families to have these discussions.  I've included one link to a new site and project that looked straightforward and promising, but there are many others.   
  A little research on the web should yield a lot of good information.  Wherever you go, whatever approach you decide on, the time has come to do what you fear.  The time has come to talk.

It's not too late to vote!  Vote once a day until February 15th.

Saturday, January 5, 2013

Dr. Jekyll or Mr. Hyde?

One of the biggest things I hear about when I meet caregivers and other people touched by Lewy Body Dementia, are the radical behavior changes in those with LBD.  All of the dementia syndromes cause some level of emotional, or personality, or behavioral change.  Alzheimer's disease, the most common of the dementias, causes memory and cognitive impairment, which leads to anxiety, anger, strange behaviors, and, of course, a regression into the past.  Stroke-induced dementia shares many of the same traits.  LBD, however, is a little bit different.  It seems singular in the drastic nature of its behavioral effects.

Caregivers report aggression, rage, violent physical behaviors, profanity, acting out, and rapid shifts in mood; often from individuals known for calm speech and behavior, friendliness, kindness, and patience.  It seems most often to be males who are at the effects of this, although I have heard of a few women.  It is one of the most common symptoms of LBD, and the one that catches everyone off guard, and I try to spread the word as much as I can about its commonality, while helping people deal with the emotional shock of seeing their loved one so very changed.  It can seem like you're living with Dr. Jekyll and Mr. Hyde.  While everyone with a loved one suffering from dementia is justifiably disturbed by its unstoppable, cruel corrosions of the person we know, there is something viscerally difficult about seeing a completely different person emerge from someone you know so well; more difficult, in a way, than forgetfulness and cognitive breakdown. 

I have some personal experience with the phenomenon of one's loved one doing something completely out of character.  My Father loved the idea of control - exhorted us at all times to be in control of ourselves.  I rarely saw him completely lose his temper, he never expressed his anger physically, and I can't remember one time I heard him swear.  Which is why I was surprised to receive a call from the facility where he lived, telling me that he had gotten aggressively territorial with another resident, attempted to punch a caregiver, thrown a chair, and had had to be restrained by police and EMTs.  He spent three weeks in a gero-psych ward because of this incident, drugged up on anti-psychotics and bewildered at the change in his surroundings.  This was when we began to suspect that he did not have Alzheimer's, but may instead have a far less well-known disease called Lewy Body Dementia.

The fact that it was so poorly understood, and had much worse PR than Alzheimer's, made it difficult to know how to deal with it, especially in terms of Dad's facility, which didn't WANT to learn how to deal with it. We were lucky to find a caregiver and owner of an Adult Family Home, who understood the disease and its effects and welcomed Dad; many others are not so lucky.  It is for exactly this reason that we need to spread the word about LBD and its symptoms, until it is just as well known as Alzheimer's ( and receives the same attention and funding!)

For those of you walking this hard road with your loved one, shocked at the changes and behaviors you see in one you knew so well; I'm so very, very sorry.  Try to remember that it is the disease that is acting, not your loved one, and that that person remains somewhere, even if only a little bit.  There are things you can do to ease and soothe the behaviors, and also medications that help, although I don't advocate drugging a patient.  But most of all - you're not alone - others are with you who understand what you're going through.

 Toll-free LBD Caregiver Link – 800.539.9767


Wednesday, January 2, 2013

Apparently, Life Is All About Weight-Loss.

First of all, let me thank everyone who has voted for and continues to vote for my blog in Healthline's Best Blog of 2012 contest!  Let me also thank everyone who visited my site because they saw it mentioned on Facebook or elsewhere - welcome.  I'm currently in 29th place - a little short of my goal of winning first place and achieving blog world domination, but at least I'm up there and that's great.  I have something to say about some of the blogs ahead of me, though, which might come off as sour grapes but its really not; its more a sadness about how little the world still knows about the challenges of dementia and caregiving.

Of the top 25 blogs so far, some of are about Rheumatoid Arthritis and/or chronic pain, there's one about menopause, one for breast cancer, and only two about dementia and/or caregiving.  The overwhelming majority of blogs in the top are about dieting and weight loss, having babies, or dieting and weight loss after having babies!  It seems appalling to me that an issue that is growing exponentially each year, and is only going to get bigger, i.e. dementia, has only 2 blogs in the running.

Again, I have nothing against dieting, having babies, or even RA(which, of course, I have!), and I'm happy for their creators that they are doing so well and serving so many people.  I'm sure weight loss after having children is a big issue, its just that it makes me sad that something that affects so many, many lives; that brings such pain and grief and hardship; that has long-term, serious mental, emotional, physical, and financial still so secret and unspoken.  I guess there's a reason they call it the silent epidemic.

Please, keep on voting!  I'd love if you would vote for me, but just voting for any dementia blog would be a step towards day-lighting this huge problem!