Today, Feathered Quill reviewer Barbara Bamberger Scott is talking with Nancie Wiseman Attwater, author of A Caregiver's Love Story and Reference Guide.
FQ: How did you organize your time and energy to write this memoir/guide, given what must be a very busy life as described in it?
ATTWATER: I am an early riser. The dog wakes me up around 6am to be fed and I then manage to get a lot of things done before Bill wakes up. When I am writing a book, I reserve a few hours every morning for writing, proofreading and organizing. It has worked well for me for several books, so I just kept up the routine. I enjoy writing, and don’t consider it work so it feels good to sit down in the same place every day at my desk and continue my stories.
FQ: Does positing and writing about these facts give you, overall, a sense of hope?
ATTWATER: I wouldn’t say it gives me “hope.” What it gives me is a chance to get all my feelings out of my head and down on paper where I don’t seem to worry about them as much. I am very organized and can get a lot done when necessary. Writing is a type of stress reduction for me. Bill’s illness is terminal. I watch him decline a little more every day. We now have a hospice nurse that comes to see him twice a week and a nurse to help bathe him. It is an ongoing battle, so to speak, but we keep moving and trying to get the most out of the time we have left. I haven’t been writing much lately, I’m thinking I need to get back to it.
FQ: Do you see positive changes emerging in medical care/facilities that could make a difference in the future for those like yourself as a home-based caregiver and for those like Bill needing almost constant oversight?
ATTWATER: I can see that there are more caregiver provider companies now, but the problem is they don’t seem to give a lot of thought to who they hire. Because they cannot do “medical” things, just about anyone can have the job. Right now, we have a young gal who is only 18, but does a wonderful job taking care of Bill. Cooks for him, does laundry, etc. I have a list of duties for the caregivers, and I will say that many days it gets ignored when the TV is on, and their cell phone is in their hands.
It is thought to be best for a person to stay in their own home, if possible, instead of going to a facility. The care is supposed to be better in one’s home, but what they don’t seem to mention is the toll that takes on the caregiver. I’m a trained nurse and can handle emergencies and come up with ideas to take better care of Bill. But I get so tired, and my temper gets a little short that some days I feel I’m not doing him any favors by keeping him home. His dementia is becoming more of a problem, and he needs me to fill in the gaps for him. A medical assistant in a facility wouldn’t be able to do that. He will always say “Get Nancie, she’ll take care of it.” He knows I will do this no matter the toll on me.
FQ: Apart from caregiving, is writing now your primary avocation or will you continue to explore other avenues of creativity?
ATTWATER: I am a quilter, knitter and needleworker and I get to explore a lot of creative outlets with those three hobbies. Time is an issue as they all require attention to detail and some spare hours. Some days, I tell myself to sit down and sew, or knit for the day, like I used to be able to. It never happens. But it’s nice to think I will someday again. I have always enjoyed watching TV and doing needlework while Bill rested. Lately I’ve been in bed fast asleep by 7pm. I know I will get back to all these avocations eventually, but then again that means I will be living alone to do it.
FQ: Could you envision a documentary illustrating your own life experience and development of your methods of dealing with sickness and impending sorrow?
ATTWATER: Well, I could see that of course. My best friend in Utah will always ask me “Who is going to play you in the movie?” when I send her a new book to read. It seems like a playful statement, but I believe the information would be valuable to anyone who is faced with the illness of a loved one. It’s doesn’t need to be a spouse. It could be a parent, sibling, close relative or even a child.
Dealing with impending sorrow is another issue I deal with every day. I try not to cry about this, but I was reading my book to Bill because he can’t read it now and I can’t get through a chapter without the tears falling.
FQ: What is your best memory of life together with Bill since he has become an invalid?
ATTWATER: Our life remains full of love despite the obstacles. Our early days of travel are fond memories, and we speak of them often and look at the photo albums of those happy days as a reminder. Bill remains very pleasant even on his worst days and he doesn’t remember the good times as much as I do. It’s easy to remind him and try to keep his spirits up with the memories of when he was up and about, doing the cooking that he loved and taking care of everything in the house.
FQ: Have you considered speaking about/organizing workshops based on these important topics?
ATTWATER: I am doing a lecture to a group here where I live in June. I would love to do more. I think that organizing this information into a workshop with a discussion of other people’s needs when it comes to caregiving would be wonderful.
FQ: What would be your strongest recommendation to the typical reader of this work – someone facing similar dilemmas, with or without a medical background?
ATTWATER: Read everything you can find. Look up diagnoses on the internet. Be sure you understand everything. Learn about all the medications you are giving to your loved one. When going to the doctor take notes; do not rely on your memory. If you have access to your doctor via their website read all the after-visit notes and be sure you understand them. Be a loud voice, be annoying if you must because your understanding of the medical issues is imperative to the care of your loved one. Don’t be afraid to ask questions. Even more than one time if necessary.
There are times that even with my medical background I forget what the doctor said or recommended. I was always in the mode of getting Bill in and out of the doctor, making sure he had oxygen and was comfortable in the wheelchair. This sometimes got in the way of the doctor visit. I had too much going on to remember it all. Get help if you can, involve family if they are willing and be careful of your own needs as well.