Differences.

I enjoyed visiting my hospice patient, but she has just 'graduated' from hospice care. There are two ways to leave hospice care, get better or reach the end. So far, more of my patients have gotten better than died, but you have to be prepared for anything. In my trips to see those various patients, I've been quite interested to note both the differences in the places where the elderly are being placed, and the people surrounding them.

I've found there are as many different family homes and assisted living facilities as leaves on a tree, even though they fall under a particular heading. Some are bustling and lively, some are luxurious, some are homely, some are dingy and worn-out, some just seem like a hospital. I think its the last that I dislike the most. When I was looking for a place for Dad, there were several facilities that just might as well have called themselves hospitals, that's what they looked like. Only the barest effort was made to make them seem at all homelike. I avoided those places like the plague, and fortunately I could, as Dad had enough money to be able to pick and choose his home. I feel for all those people who have no choice but to place their parents in a cheaper, hospital-like facility.

The last place I visited was quite luxurious-like many, it combined regular assisted and retirement living with a wing for those with memory issues. There was a deluxe dining room, a chapel, a spa and a library-it was obviously the kind of place that needed money, and probably a long waiting list to get into. The memory wing was only one floor, comfortable appointed like the rest of the floors, but obviously prepared for heavy-duty use. No matter how expensive, it's still a locked ward-luckily it just doesn't smell like a hospital.

I just find it interesting, the growing number of places we're opening as places to put those no longer functioning as members of society. There are probably more adult family homes in your own neighborhood than you're even aware of. And I find it interesting what money will buy. I'm lucky I could pick and choose for Dad and not everyone can do that. Is there a way to make it more fair, I wonder, to homogenize these homes so everyone experiences the same comforts and care? And would we want to if we could?

The more things change...

I have a new hospice patient, and I am really enjoying visiting and spending time with her. She has dementia, but its not too far advanced yet, so she's still pretty engaged. We are able to have fairly long conversations, even though much of the subject matter doesn't always make sense. Talking to her reminds me of talking to Dad, back when his illness hadn't progressed to where it is now, and I feel a little sad.

I've noticed many of the same verbal tics and ways to cover up mistakes or forgotten information that Dad used to use. He got really good at covering up, and would use certain open-ended or vague phrases that very carefully obscured the fact that he didn't know what I had asked or what I was talking about. There were times when I found it infuriating, even though I could guess how hard it must have been for him to not have that information available to him anymore. My new patient has a few stock phrases, too, and I feel so sorry for her because I know where this is going for her. It's only going to get worse.

My Dad wasn't a big talker anyway; we spent long stretches of time quietly together. But there were times when he felt a little loquacious and chatty, times when he actively wanted to engage with me. I always tried to make him feel listened to, and as if he had been engaged in a full, satisfying conversation where his opinion mattered and he was heard. It was one thing I was really good at with him.

He can't really do that anymore-he's gone past the stage of engaging. Spending time with this lady makes me feel like I've got a little bit of him back again-it feels familiar because of the way she talks, so similarly to Dad. It does make me sad that she will eventually reach the stage where Dad is now, but until then, I'll keep trying to make her feel like her words matter, just like I did with Dad.

Stuff.

I really like watching shows like American Pickers, and Storage Wars, and similar. As much as I enjoy seeing all the neat old items and antiques found by the guys on American Pickers, the thing I can't stop thinking is, "Who's going to clean up all that stuff when the homeowner is gone?"

When I started cleaning out my Dad's house, the story that provides the structure to my book, I was weighed down by the sheer scope of the project. There was garbage and paper and furniture and clothes and tools and tons of other stuff (nothing valuable like on Pawn Stars, however!). It was daunting and it took my six months to finish. I know I'm not the only one to have to face this kind of project. Three out of eight people in a writing class I took had already had to clean out one house. It was incredible. My mother-in-law, having just finished my book, told me she had cleaned out four houses in her time!
At what point do we stop acquiring stuff, and encourage our parents to stop acquiring stuff, and in fact, start getting rid of it?

Every time I describe my father's house, I see a peculiar expression cross the face of the person I'm talking to. They usually then start thinking about THEIR parent's houses, and I can see them going from room to room in their minds, looking at the sheer amount of material it will fall to them to clean out. It really made me start looking at MY stuff, and it started me cleaning my closets and rooms out more regularly. I won't be having any kids, but I don't want to leave a bunch of crap for some poor random person to have to clean out.

Interesting Article

I found an article that caught my eye while poking around on Yahoo! It discusses pretty basic stuff that many of us already know, or already did, but its still good information!

http://shine.yahoo.com/channel/parenting/when-you-parent-your-parents-2408321/

(Plus the title of the article is the same as one of the chapters in my book so it really caught my eye!)

Being sick.

Well, I'm sick. I have a cold that I'm just starting to come out of and its really knocked me for a loop. It's been so long since I was sick that I forgot how truly bad I can be at it. Some people are good patients, they take care of themselves and wait to get over it, but I'm not quite like that. Largely due to my religious upbringing, being sick brings up some hard emotions.

I love my Dad but this is the main thing I resent him for. We were raised Christian Scientist, and the main focus of that religion is that there is no illness or dysfunction. We are a perfect reflection of God and therefore have been tricked into believing we're sick. When we were sick as kids, my Dad didn't want to know about it and encouraged us to pray to get better, making us feel guilty if we weren't able to achieve wellness through prayer. In my book, I've gone through the trouble this has caused me over the years-its the central irony behind his illness and my taking care of him, even though he never took care of me when I was suffering from my big illness. In addition, I've had other loved people leave me because of illness, so part of me is always expecting that to happen, as well.

We all have things that our parents did to us, or ways we feel they neglected or hurt us. It's hard to remember that when we look at them now in the throes of their dementia. Or for some, it may be all they remember as they go about caring for the person who didn't necessarily care for them. All across the country, there are people caring for ill parents who didn't care for them and they are encouraged by society to keep doing so while not mentioning the hard feelings that might be bringing up. I want to tell all those people that you're not alone. I love my Dad and I forgive him (mostly) for the ways that he hurt me-and I'll continue to care for him. But that doesn't mean I should forget and squash down those feelings of hurt and resentment, and neither should anyone else. And I'll continue to get better at being sick.

Guilt.

I've been reading some of my favorite blogs this week, trying to find more, and just seeing what's going on with my fellow caregivers. There's one blog I particularly like, listed on my blog list, by two sisters who are caring for their father. They just sound like lovely women, who love their father very much, and there was one recent post that caught my eye.

One of the women was writing about how their father was spending much more time, either at a facility or adult daycare, I'm not sure. The point was, much of the time previously taken up with caring for her father she now had free and she was having mixed feelings about it. She detailed the feelings of guilt and shame at not being with her father so much, and even mentioned how worried she was about what other people would think of her for "ditching" her father. I just wanted to cry, I felt so bad for her, and I wanted to reach through the screen to tell her to stop.

I remember those feelings of guilt and shame so well; was I doing this right? Would people think I was a bad daughter for not spending more time with Dad? Was it wrong to want a few hours to myself? And, of course, the big one, would people think I was a bad person for putting Dad in an assisted living facility? I still feel guilty feelings for putting boundaries on how much I can do with and for Dad due to my health issues. I still wonder whether the people at Dad's home judge me for not spending more time with him.

My good friend would ask me who I was talking about when I said "people" or "they". And she would point out that only I knew what could be best for Dad, and for me. She also pointed out that most people who knew me thought only of the good I was doing for Dad, and how much he must appreciate it. Where does this belief come from that we have to give up so much of ourselves, that we have to work for another until we're exhausted, and feel guilty for wanting to live our own lives? I want to know where-and how do we get rid of it?

Unfortunately, these feelings will never completely go away, and I've done a lot of healing work to be able to turn the volume down on them. Now, whenever I hear another caregiver saying how guilty or ashamed they feel for wanting some time to themselves, I take them by the shoulders(if I happen to physically be with them) and tell them to stop! I point out all the wonderful things they are doing, and that there is no way possible to take care of anything or anybody if we haven't taken care of ourselves first! You HAVE to put yourself first, otherwise there will eventually be nothing left of you to help others; plus, you were given a life that's just as important as that of your charge. You deserve to live it, and don't forget it! Let's all remind each other of that as much as possible.

Would they be proud 2?

Its kind of funny how my Dad's life and mine has become intertwined. I can tell Dad now that I've written a book and he will look briefly interested and probably say something like, "Oh yeah? That's nice."-provided he feels like saying anything at all. But it won't have the impact on him that it would have, and that's a little sad. What's also terribly sad and heartbreaking is the number of people in the same situation.

Having just had the book debut, I've been looking through Amazon's choices for books on dementia and LewyBody and caregiving and all that. What started to shock me was the sheer number of books written by ordinary people about their loved ones with dementia. Obviously, I'm not the only one who felt she had a story to share. Books written by adult children of ill parents, books written by spouses, book written by those stricken by dementia themselves! It's a little shocking to tell the truth, and that's before you even consider the number of blogs out there, written by people just trying to get through the day, in the grip of this terrible disease, dementia.

And we're all just out there in the great silence, spinning our stories, sending little flares up about how our lives are affected by this thing. To read how some people are dealing day to day is inspiring and awful. This disease, almost more than any other, affects families and loved ones almost as much as the afflicted. The stories are never exactly the same, but they are close enough to give comfort. For a while, my life wasn't as affected Dad's life as it was a few years ago when the events of the book took place, although that's beginning to change again and things are heating back up. I guess we all have no choice but to keep going day to day, keep writing our blogs and our books and hoping that the hardships we've experienced aren't for nothing - that maybe by telling them, someone else will be helped.

Would they be proud?

This last weekend was full of excitement about my book coming out, how it looked, how to begin marketing, etc. This project has been in the works, from writing it to publishing it, for about four years. Then my fiance asked me whether I thought my parents would be proud of me for writing and publishing a book, and I had to stop and think for a moment.

It's been so long since my mother was alive that I no longer really know how she would think or feel now. I think that at one time, she nurtured dreams of writing a book, herself. I suspect if she thought anybody would write a book, it would be my sister! She has always been known as the writer of the family. I have to think she would be proud of me, though, for having set out to achieve something and finishing it. What's interesting about all of this, though, is that if she had remained alive, all of the things I've written about probably wouldn't have happened.

I've often thought that the reason my Dad's brain and consciousness started to deteriorate was due to her early death. He began to develop symptoms about six years after her death and it slowly progressed from there. They were pretty much each other's social circle, largely keeping to themselves, without too much interaction with friends. It begs the question, if she had remained alive, would Dad have developed dementia at all? Or if he had, what path would it have followed? There are events in , too, that are intertwined with my father's, that I suspect wouldn't have occurred, either.
It's just interesting, and a little sad to ponder what would have happened if Dad had still developed dementia, but my mother had been there to care for him, and not me.

It's here!!

Well, as you can see if you look to the right of the posts-my book is here! I'm so very, very excited! It's taken me three years to get it to this point; and, of course, the whole thing started eight years ago. I've read the book now too many times to be objective. All I can hope is that it's an interesting read, and it brings you some information or comfort you didn't have before.

If you click on the cover image, you will be taken directly to the Createspace site where the book can be purchased. It will also be available on Amazon in a week or two if you prefer to buy it through them. I might change the picture link to Amazon once the book has listed there.

Please don't hesitate to give me your feedback on the book, I'd love to hear what you think, and don't worry, I'm going to keep up with the blog as I'm sure there will always be more stories! My thanks go out to everyone who helped me or continues to help me on this journey.