Saturday, May 24, 2014

Quiet Dangers.

A few years ago, my father had emergency surgery for an infected boil. I happened to be out of town at the time, but the surgery went well and he was out of the hospital in a few days. When I went to see him the morning he got back home, he looked just awful. Gray, a little clammy, stiff, and obviously still in a great deal of pain in his nether region. He looked like he’d been through the ringer. A few hours later, I got a call from his caregiver that he was concerned about Dad, who wasn’t eating, was sweating profusely, couldn’t go to the bathroom, and just seemed ill. I told Greg to take him to the ER and I took off.

When they came into the lobby, poor Dad looked like a spooked horse. Eyes rolling, showing the whites, stumbling, and obviously in distress. We got him into a wheelchair and the nurse took him back. As I waited next to him, I felt so helpless. After hours and tests, it was determined that the problem was excessive pain: Greg hadn’t given him enough pain meds because he hates to drug up his residents. Once the doctor-administered pain med started to work, Dad was a lot better. I made sure that Dad got all the pain meds he needed after that.

What too many people don’t know, caregivers and non-caregivers alike, are the life-threatening effects that things like pain, discomfort, infections, and surgeries can have on those with dementia. An infection can cause unexpected of behavior issues, acting out, total withdrawal, catatonia, and, of course, death from the dangers of the infection. The effects of anesthesia can include permanent muscles stiffness, Parkinson’s symptoms, and cognitive breakdown. Pain can cause some of the same things, as well as making the individual unable to do things like eat, go to the bathroom and sleep. 

For us, these are relatively simple things, (usually) easily fixed. But for a person with dementia, it becomes a whole other, serious, issue. Because, the problem is, they can’t tell us what is going on! We have to guess and make mistakes and cause even greater discomfort before we figure it out. They, and we, have to rely on their bodies to help us understand. I felt so bad for Dad, having to suffer for so long, not knowing why, and not able to tell anyone about it, bewildered and in pain. I know what it’s like to be in pain, and it’s something you want to go away ASAP.

This is why the more articles, and blog posts, and forum topics, and Facebook posts I see warning people of the dangers and effects of pain, infections, and surgeries, the better. We need to keep getting the word out, not only to family caregivers, but to professional facilities so they know exactly what they are looking at when they are looking at it, and can act as soon as possible. Nobody deserves to be in pain or discomfort, and everyone deserves to be heard and cared for – we need to listen to what they may be trying to tell us.

 Here is a link to a great article recently on another possible effect of UTIs.


Monday, May 19, 2014

More Stressful?

Another great, if a little repetitive, article about family caregiving and the fact that the need for it will only grow. It opines that caring for a spouse is more stressful than caring for a parent. Certainly, caring for a spouse has it's own special stressors and issues, like the fact that you used to have a partnered, loving relationship with that person. However, as a caregiver for a parent, I can say that I have had my stressful moments!

Most of us have seen this information and these statistics in other articles, but I can't complain if the message keeps getting repeated. The more times we see the stark reality that Medicare does not cover long term care, the better. There are still too many people who believe that it will. Acting now to plan for the future, whatever that might be, is essential.

Our country is not prepared for the increase in caregivers that will be needed and our legislature needs to continue to look at laws that will help families care for their loved ones with care and dignity.

Friday, May 16, 2014

New Friends!

I was contacted the other day through my website by Corey Ozar and his sister, Sofia, who have recently created a new social network for caregivers. Called Carepond, it seems to be a little like for caregivers, although more about support and fellowship than dating! Here is a snippet from their press release:

"Caregivers are looking for information and support. CarePond seeks to provide both of those things through a variety of unique mediums:
• A question & answer forum offers reliable, honest, and practical advice from other caregivers and caregiving professionals, sorted by various topics that are easy to browse.
• Private messaging or group chats allow users to speak with other caregivers in real-time. Users can share their personal experiences with one another in a supportive environment with others who understand what they are going through.
• User matching algorithm is able to match caregivers with one another along a variety of dimensions, including location, relationship to caregiver, and primary condition of the care recipient. Users are able to find and connect with other caregivers around the globe in situations similar to their own."
I've signed up and checked it out and I like it! Their concept is simple, fresh and a great way to exchange information and stories. I urge you to check it out, as well.

I was also contacted by a fellow blogger who invited me to post a link to her unique blog, on which she posts solely through poetry. I've written a few poems in my day (and if you saw them, you'd know why I switched to non-fiction and blogging!) and I have to say I'm impressed with her skill.
I invite you to go and appreciate them, too!

Sunday, May 11, 2014

I Will Miss Him When He's Gone.

I visited Dad on Friday and he was snoozing, as usual. I sat down next to him and after a few minutes, he started pulling on his blanket and opened his eyes. I leaned over him, stroking his arms and hands, and smiled at him, “Hi Dad!” He looked back at me and gave me a faint smile but something didn’t seem right about his eyes, or his face. He just seems altogether more frail, but there’s something else.

The last time I saw him, I noticed that his face looked a little different, as if his cheeks had fallen in a little or something. This time, one eye seemed wider than the other, and it was looking off in a different direction, just a tiny bit. The other eye was narrower and looked a little puffy. I know he rubs his eyes a lot, even after I got the doctor to give him some eye drops, but the other eye bothered me a little, as did the changes to his face. Could it be possible that he’s had a little stroke?

As I sat there, rubbing his hands gently, comparing how he looked now to how I remembered, I wondered but I don't suppose I will ever know for sure. Someone asked me on Friday how long I’d been caring for him and I had to think. It’s been ten years of care, of course, but I saw symptoms about five years before that, I think. Can it be fifteen years now that he has had this disease? I can hardly believe it but I think it’s true, which made me think – how much longer can it be before he dies?

I’ve gotten into the habit of thinking he will live forever, since it has been so, so long that we have been going through it. But, of course, he won’t live forever, and I wonder if maybe he won’t live much longer than this year or the next. I can hardly wrap my mind around it, and it shakes up my complacency a bit. On the other hand, I would be so grateful if he were to go soon – and easy – because I know with everything I am that he would HATE to live like this.

All I can do is prepare. I have the plans in place, the funeral home all ready, all the practicalities. But I have to start thinking more seriously about what it will be like to help him die, and I wonder how soon now that will be. None of can ever be ready, no matter how much planning we can do. If he HAS had a stroke, I hope it causes enough damage that his body starts to shut down; or maybe the next one will. All I want for him now is his freedom. But I will miss him when he’s gone.

Monday, May 5, 2014

Ten Plus Years of Caregiving!

As I've been writing my second book, a combination memoir/caregiving how-to (because there aren't nearly enough of those out there in the world) I realized that I've been a caregiver now for over ten years! Dad's life and mine intersected in 2003 and I moved in with him as his caregiver in April, 2004. I can't believe how quickly ten years have gone by, nor can I believe how much has happened in that time.

The crazy thing is, that my journey with Dad is not yet done. We are in lull-space, as I call it, watching Dad get more and more frail and waiting for the inevitable end, which, for his sake, I hope will be peaceful and easy, but, considering weirdness from the past, is more likely to be odd and drawn-out. This is my breathing room, I guess, but it has also given me the time and space to start helping as many other caregivers as I can, which I am grateful for.

So, I've decided to rename the blog, given that so much has happened since it's start, and the fact that my caregiving journey encompasses so much more now. I think the new name reflects better where I am and what I'm doing, and what an honor and a pleasure it is to be continuing this work. I hope you like the changes, and that you keep on reading (although I'm kind of hoping its not for another ten years!)

Friday, May 2, 2014

Books, Books, Books!

Once again, I throw myself into the breach and sacrifice my time and energy for my fellow caregivers doing something I really enjoy doing anyway – reading! Here are the latest book reviews for your enjoyment and edification.

Alzheimer’s Disease and Other Dementias: The Caregiver’s Complete Survival Guide – Nataly Rubinstein.

There are now several different books claiming to be the complete caregiver’s guide, with varying truthfulness. I did enjoy this book, although I don’t think it is the best of its type that I have read. I enjoyed Janet Shagam’s, An Unintended Journey, a little better. Rubinstein certainly knows what she’s talking about: not only is she a social worker who specializes in geriatric care management, but she cared for her mother, who had Alzheimer’s.

Like many, the book is a combination of memoir and information and she does give a lot of great tips in each section for different things like difficult behavior, communication, and caring for the caregiver. I enjoyed reading the bits about her mother and her own life, but I thought the tips were probably the best part of the book.

It is a thick book, with lots of information, most of which is covered in other, shorter, books like, Learning to Speak Alzheimer’s so if you don’t have the time or patience for a long read, choose other resources. It is kind of nice to have it all in one place, however, and I suppose you could jump around. In the end, she talks about respite care and institutionalized care but stops the journey there without covering end of life. All in all, not a bad resource if you have the time or just want a reference book. **

When the Time Comes – Paula Span.

I really enjoyed this book, which was an informative resource, memoir, and sociological study. It did cover some important issues with humor and compassion, as well as information. Span followed several families over an extended period of time as they wrestled with the illness and age-related issues affecting their loved ones and gives us fascinating insight into other caregivers’ lives. She also shares her own story about her mother’s dementia and her increasing worries about her father as he ages. She describes her book as a, ‘support group in print.’

Span describes the process of caring for our loved ones, starting with home care and its good points and pitfalls. The stories about families trying to hire private caregivers made me laugh because I, too, had my issues with private aides. She moves on into Assisted Living and its pros and cons, including a few tips on how to find a facility and what to look for. There are good facilities and bad facilities, and some that are in between. I always like seeing someone talk truthfully about facilities because they sometimes get a bad rep, but like anything else, they run the spectrum.

Dementia, itself, and the ways we end up having to deal with it, is often described as nothing but bad choices – choosing the best of the worst. To a certain extent this is true, as none of us wanted to have to deal with it in our loved ones. I like Span’s message of hope in the darkness, however, and her descriptions of how some families have chosen to deal with the way their cards were dealt. She focuses on a few issues, which I think is a great idea, since the step-by-step eldercare manuals, like the one above, can be too broad. I really enjoyed this book, and I would recommend it for anyone who wants to read about people experiencing the same problems they are, with compassion and humor. ****