Wednesday, December 17, 2014

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!

Caregiving: How to Survive and Get Out Alive.

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!
Caregiving: How to Survive and Get Out Alive.

Friday, December 12, 2014

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.

Thursday, December 4, 2014

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.
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.”

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!


Wednesday, November 26, 2014

Holiday Awareness.

Yahoo had this article listed on their front page news feed and I thought it was so important to post here. It states that getting the family together for the holidays is a great opportunity to look for physical and mental changes in your older family members.

"The holidays aren’t just an occasion to give thanks and eat until you pop — they’re also an opportunity to check up on the physical and mental well-being of older family members. More than half of older adults with diagnosable dementia have never seen a doctor about memory or thinking concerns."

Don't jump on every little mental difference you see, and don't freak out if your Grandpa forgets your name for a moment; cognitive ability reduction is common as we age.

"Just because Dad forgets the pumpkin pie (for the second year in a row) doesn’t, on its own, suggest that he has Alzheimer’s disease. Chapman explains that certain mental processes, such as memory and thought processing speed, inevitably decline with age. 'Dementia, versus common memory loss, involves two symptoms, with memory problems being one of them,' says Dr. Rebhun, who trains other physicians in how to evaluate patients for dementia. Often the first signs include problems with decision-making and changes in how people make decisions, Chapman explains. Your loved one may not use good judgment or sound logic. For example, your mother might forget to put sugar in the cheesecake, so she sprinkles it on top after the dessert is baked."

And don't feel that you have to deal with it right that moment, or bring it up at the dinner table. Make your observations, check with other family members, and then arrange to have a talk with the affected family member at another time, in a quiet location. Bring another family member for support.

This is a great and timely article, and a good way to keep looking out for our families.

Monday, November 24, 2014

Holiday Care.

Its that time of year again - I can hardly believe it! Its not that the holidays sneak up on me - all you have to do is watch television to know they're here - but I guess I forget everything that's involved with them. All the stuff one has to think about and plan and worry about. This year, as in past years, I'm going to urge caregivers and the newly bereaved NOT to think about, plan, and worry about the holidays. Or at least TRY not to.

Last week was the final session of the Grief group I was co-facilitating with my friend Ross, who is an amazing counselor and friend. So many of the participants were fairly new to their loss and hadn't experienced a major holiday without them, so I took the fortuitous timing and made sure we talked about the week to come - this week. I told them how difficult holidays can be without loved ones and I urged them to really give it some thought, and be mindful about how they celebrated this year.

First of all, I support not celebrating at all! If you're not up to it, don't try to maintain the old traditions and things your family always did. Give it a year before you decide what traditions you want to keep or get rid of, and spend this year resting and taking it easy and not doing much. Go to a movie with a friend, or have a quiet dinner with close family, or go out of town. Several of the recently bereaved people I know are leaving on a jet plane for warmer climes.

If you absolutely want to celebrate in the ways you always have, get other people to help you...a lot! Go potluck or order dinner from one of the fine, natural grocery stores in the area. (PCC does a great Thanksgiving!) Wherever you are in the country, I'm sure you have a restaurant or grocery store that does a ready-made dinner. Have everyone bring a dish, while you supply the decorated table - something like that. Above all, take it easy, be good to yourselves.

I'm going to go visit Dad on Wednesday afternoon; check in with him, read a few pages, rub lotion into his hands, maybe. But I won't see him on Thanksgiving day. I know they always serve a great dinner at the Adult Family Home, so I'm not worried that Dad won't have the good seasonal food. I'll spend the day with my husband, relaxing and eating the chicken (we hate turkey), stuffing and everything else.

I'll serve the food in my mother's lovely serving dishes and think back to all the Thanksgiving dinners we shared around the table at our old house: lace tablecloth on the table; Grandma's white and blue china; the cut glass pineapple bowls for pickles and cranberry sauce; all of the good food, including green bean casserole, which I never learned to like. ( I did grow to like gravy, though). I'll think about my parents and my grandparents playing cutthroat pinochle after dinner while my sister and I read. And I'll give thanks for everything wonderful I have now.

Saturday, November 15, 2014

Hand to Heart.

I went to see Dad this week, sitting next to him on his bed as he dozed away under his blanket. He was wearing one of the new pullover shirts I got him and looked good- much better than the peach colored velour sweatshirt they've been dressing him in!

Towards the end of my visit, he surfaced from whatever dream world he'd been inhabiting and looked at me. I smiled at him and said hello, and got a faint smile in return. Last time I visited, he woke up and when I said hello, he actually said "Hello!" back. I'm not sure who was more surprised - him or me. Either way it was nice to hear.

No hello this time, but he did look at me. I grabbed the extra - special hand lotion I bought for him, took off my wedding rings and begin to gently massage his hands with the lotion. When I looked up at his face, his eyes were closed and his face relaxed and he seemed to be enjoying it so I kept on.

I've written before about my father's hands; how strong and capable they were, always rough with ground in dirt and oil, no matter how hard he scrubbed, and banged up from whatever motor or toilet he'd been working on. As I rubbed his hands, stretching out the fingers that have become contracted and tight and working on his wrists and lower arms,  I noticed how smooth and soft his hands were. Mine were callused in comparison!

It just brought home to me the fact that he does nothing- rarely using his hands or his body
in any way. The disease has stolen that from him. Of course his hands would be soft - there are no more engines to be fixed. All he touches now is the soft blanket I got him last Christmas. It made me a little sad but as I was finishing up something happened that helped me a great deal.

I gently put his hand down in his lap and smiled at him as I rubbed the rest of the lotion into my own hands. He smiled back at me with a smile of such singular sweetness and brightness that it surprised me - I felt he was looking directly AT me. It was a true smile,  Maybe a thank you for the meeting of our hands. And I drove home feeling not too bad after all.