Book Proceeds to the LBDA.

I forgot to add in today's post about my new book that I will be donating 30% of the proceeds from sale of the book to the LBDA. They are a great organization, doing great work, supporting the people who need it the most!

I hope you will buy a copy, not only for information and support, but also to help support the LBDA. Purchase details coming soon!

New Book - Caregiving: How to Survive and Get Out Alive.

I am so proud and excited to announce that I am getting my new book published! Once again, I am going to self-publish it and I have already submitted it to the on-line publisher to be put together. I also plan to send it out to a few agents since I would love the experience of it being published on a large scale, but I just really, really wanted to get it out in the world.

The book is about my experiences during more than ten years of caregiving! (An astonishing reality I figured out about halfway through writing the book – ten + years! That’s crazy.) It’s really a how-to this time, with some memoir pieces to back up what I’m saying about caregiving. I’m aiming it towards all caregivers, with a special emphasis on new and potential caregivers, and younger caregivers – like me.

What are the subjects, you ask? Well, as all caregivers know, there are certain topics and issues that are universal to caregiving and are talked about and debated and chewed over constantly. Things like: why does family not help out more? Should I lie to my care receiver? What should I do about driving and taking the car keys? How do I break everyone out of denial of the situation? And more.

I’ve taken a lot of those issues, which I’ve learned about through personal experience, my groups, and just reading all the great blogs, forums, and sites out there…. And I talk about them! Honestly, straightforwardly, and humorously, using my own stories to illustrate. I’ve gone chronologically from the denial that my family suffered from in the beginning, to living with my dad as his caregiver, to placing him in a facility, to having problems with family, to what I anticipate on his death.

I’ve also included stories about the unexpected turns my own life has taken, and what I’ve done to create a life for myself alongside of caregiving – something I think all caregivers need to do in some way. I’ve gone through some crazy stuff in the last eleven years, or so, plus, caregiving really brought me to what I consider my vocation – helping other caregivers!

The book will be available on Amazon and at the CreateSpace site, and I will provide those links when I have them. I hope you will read it and enjoy it when it comes out because I have created it for you!

 

Dad's New Digs.

I received a text from Greg, Dad's caregiver last week, asking if we could have a meeting; either at the end of that week, or some time this week. This, of course, struck fear into my heart, since meeting requests can signify bad news, and bad news from the place you hope your parent will spend the rest of their life is really bad. I texted back asking if it was urgent (hoping he would say no!), or could we meet this week on the day I was planning to come over anyway, which turned out to be what we did.

I got to Dad's house, and walked into the living room, saying hello to the Romanian couple that lives there and does most of Dad's care. They're a really nice pair, very quiet, but I know they really care for my father well. I was pulled into the kitchen by the wife, who handed me a paper towel-wrapped, hot, deep-fried stick of dough that when I bit into it revealed some delicious mix of Romanian-spiced sausage and ground hamburger. I happily finished it off while sitting with Dad and waiting for Greg. I knew that if Dad got one of these for dinner, he would be very happy.

As it turned out, Greg wanted to let me know that they would be re-carpeting the house, but he didn't anticipate any problems. He also wanted to ask whether I would agree to move Dad into a different room; a room he took me to view while he explained the choice. Dad has been in the same room since he moved in (five years ago!) but this new room is a little bit bigger and it has a big, tiled bathroom that is half shower, with bars on the wall. They want Dad to have something to hold on to for safety while they shower him, and the fact that it's a nice big wet room will really help them. It'll be a little more money, but I'm all for it.

As Greg and I chatted about Dad and the fact that he had been there so long, Greg went to get a photo of one of their residents, who still lives there, from twenty-years ago! I'm not sure what her illness is but it's degenerative, and at first, her husband lived there with her, until he died. I've had lunch with this lady, who seems happy and healthy. If one ever had a doubt about the care one's parent is getting, or the dedication of the staff, or the question of whether they're providing a comfortable, safe environment - I will tell you that seeing a picture of a resident who has been there twenty years will go a long way towards allaying any doubts or fears!

The fact that Greg and his family have been doing this for twenty years shows real love and dedication for what they do. Their desire to move Dad for his health and well-being only shows that to me again. I will always wonder deep down if I've picked the right place and right people, and I'll worry that he's not getting good care or that something bad will happen - all of those doubts and fears that just happen when you are trusting someone else to care for a loved one. I'm pretty sure this is a good place, however, and the right place - and that they just might love Dad almost as much as I do.

A Place to Go.

Several of my support group members have, in the last six months or so, lost their care receivers. They have stepped out of the role of caregiver for their care receiver. The years of care and worry and dedication, the hours of struggle, and labor, incredibly hard work have ended. They are now finding themselves in the role of widow/widower; tired from the journey and the struggle and wondering – what now?

This can be one of the unspoken truths about caregiving – that it does, ultimately, end – and, that the caregiver will most likely be exhausted and bewildered and just plain worn out. They are the ones who could now use some care and looking after, only where can that be found, outside of family?

A few years ago, I learned about a respite center in Washington called, Harmony Hill.

http://www.harmonyhill.org/about

Here is a description of the organization from their website.

“Harmony Hill began with Gretchen Schodde’s dream to create a retreat center where people could experience renewal and deep well-being. In 1986, Harmony Hill opened its doors as a small nonprofit retreat facility focusing on wellness.

In 1994, Harmony Hill added our Cancer Program, the heart of our mission, to provide support for those affected by a cancer diagnosis including caregivers and health professionals. In 2004, our cancer related programs became free for all participants.  

Today, Harmony Hill serves thousands of visitors each year through our many programs, including those living with cancer, those who seek a retreat away from their daily lives or those who want to make healthy changes in their lifestyle.  We also rent out our buildings/facilities to individuals and groups and offer everything from personal retreats to conferences, and are known for our generous hospitality and nurturing staff, as well as our delicious meals and spectacular site.   Our rental customers have the added benefit of knowing that when they come to the Hill they are helping to support our mission.”

I just thought that was such a great idea, and such a great place to go. I haven’t had a chance to visit it yet but I definitely want to. I urge those caregivers who have recently suffered a loss to find a similar place in their area, or, barring that, take some time off, away whether it’s camping, or traveling, or going to a spa for a massage.

You have just been through an incredible ordeal – caregiving – followed by the stress of whatever funeral or service came after it. You deserve rest, respite, time to think and be alone, time to be cared for, to recover your strength and well-being, to just recover yourself. Don’t jump back into life and whatever needs to be done – at least if you can help it. Now is the time to take care of yourself – or better yet – let someone else take care of you!