Tuesday, 25 November 2014
I had this online chat on the wonderful site Caregiving.com which led me continue my reflections on holiday preparations yesterday:
I sent this video chat to another caregiver friend to begin a personal conversation about how we prepare for the holidays. My friend is the mother of two adult children with severe disabilities. Sadly, one of her boys passed away a few years ago and she misses him still. Her surviving son requires 24/7 nursing care, so holidays are very different for her family than they are for most.
Here's what she said:
In the old days, every single room in our home was decorated to the maximum. It looked like the Christmas Store exploded in our house. I made numerous fresh floral arrangements (as I was into that for a few years as therapy). I baked. I made candles, pouring wax into assorted forms and decorating them when finished to give as gifts. I hosted parties for our close friends for gift exchange, and made huge meals for the occasion. All of this, I did as a single parent. In our graduate student days, when we were poor, I baked pecan pies, and drove in the freezing snow on icy roads to deliver them in person to our friends. My pies were famous, so I was usually greeted at the door with fork-wielding friends!
My Uncle and Aunt had the largest home, so my Aunt insisted that she hold both Thanksgiving and Christmas. That meant that I got to haul my boys and their chairs, their meds, diapers, changes of clothes, books, toys, and whatever else, along with my pot luck contribution of veggies, and at Christmas ~ all of our Christmas gifts to the family. Then I drove an hour to their house ~ Load, unload, load, unload, arrive home after midnight, put the kids to bed and collapse.
When I insisted that I wanted to host Christmas, my Aunt said, "We're just trying to make it easier for you." I explained that it was far easier for me to cook dinner in my home than it was to haul everything down to their home and back again.
So what happened on Christmas Eve night the first time I hosted? One son had pneumonia, and at 3 a.m., he, my other son, and I were driving to ER in the fog. Got home at 6 a.m. Put the turkey in. Got the boys settled, tended to them, and when the family arrived on Christmas afternoon, I was ready. I pulled it off.
Not anymore. Now, I decorate a bit, with maybe a touch here or there in the living/dining room/kitchen. I don't have the strength or energy to decorate ~ unbox, put out, take down, rebox, put away. It's a lot of work. The Christmas decorations are on the top shelf in the garage, a precarious reach on the ladder for my husband. A broken hip isn't worth the festive ambiance!
Just the little decorating we do for the boys is tiring enough for us. As long as we honor them and bring beauty and sparkling, meaningful surroundings to them, we have celebrated Christmas exactly as we should.
We are just so grateful to spend Christmas at home, as we've spent a few in the hospital; Christmas 2004/New Year 2005. In 2010, our young man was released on Christmas Eve from ICU, but he was not ready to be home, and was sick that weekend, while we waited for a nurse. He was back in ICU by January 24 2011 for 40 days (we watched the Super Bowl in ICU).
Choose any holiday, and we've been in the hospital with one of our boys. Easter, Valentine's Day, Fourth of July, all of them ... When that happens, I bring the holiday to them. I wear Christmas sweaters, or I bring in a stuffed bunny from the gift shop, or balloons, or some appropriate decoration for that holiday.
As you said in the podcast, we're different. Even after 45 years, my remaining family members don't quite grasp how different we are. That's because I spent so many years trying to be Super Woman, attempting to make everything as normal as I possibly could.
And, as situations changed, we changed with them. We adapted. Because every day here is like the other for us, I have to work a little harder to make sure we acknowledge any holiday. I want to continue to be as normal as we possibly can, regardless of our situation.
In addition to our challenges as caregivers, my husband and I are grieving parents. The holidays are exceptionally difficult for us, because we miss our son. To help us through the holidays, we incorporate our angel son into everything we do. His room holds our tree and family ornaments and presents.
I guess I've always felt our difference, but it is never more profound than during the Thanksgiving-Christmas holidays. It is such an effort to try to be normal, while also cherishing our difference. It's been an unusual life. To say the very least.
My friend's holiday home experience made me think, "Every year, our celebrations shrink a little. Soon, we celebrate in one room with just our small family. But that's OK. There is love in that room and we know that everyone is comfortable with what we cannot and cannot do. And we are grateful."
Nick's designed his own 'manly' Christmas tree for his room. Note the World Wrestling Entertainment decorations and crushed beer can for a 'star'. All the gifts under the tree are from him to us and his helpers.
My book, The Four Walls of My Freedom: Lessons I've Learned From a Lifetime of Caregiving (House of Anansi Press) is available now from all major booksellers in the USA and Canada.
Thursday, 20 November 2014
For caregivers, there are two common types of toxic friends; the troll and the narcissist. The troll is someone who calls and visits often. He or she will ask many questions about your loved one and may even visit in hospital to chat over coffee or lunch. They will appear warm and concerned, while inquiring into the minutiae of your loved one's symptoms and treatments. This type of toxic friend does not offer help of any kind. They simply want to know. The human drama of a caregiver's life provides vicarious interest and fodder for their dinner table chat, but that is all. This type of friend cannot make the intellectual leap between listening to your experience and offering to sit with your loved one or doing your grocery shopping.
The second type of toxic friend is the narcissist.
Narcissists rarely, if ever, ask how you or your loved is doing. They are bored by others' experiences, so constantly direct the conversation back to themselves. No matter how difficult a caregiver's situation may be, it will always be worse for a narcissist - and despite their healthy family status, they will want you to listen and sympathise.
Caregivers soon find out that longstanding friendships don't necessarily translate into good friendships when the going gets tough. Some lifelong friends do show their loyalty and generosity, while others suddenly become too busy to call or drop by. The messy and often sad events in caregivers' lives may be too difficult for some people to witness and absorb. The fact is, not everyone is cut out for helping others through the toughest times. The trick is to determine quickly who will be a good friend for the long haul and who may be limited in their ability to walk with you through your caregiving journey. Wise and experienced caregivers will advise forgiveness in the case of friends who disappear upon hearing your loved one's diagnosis. Holding on to bitter feelings will only make it more difficult to spot new friends who genuinely want to help.
The extraordinary friend is one who intuits your needs, listens without judgement, visits often and always brings food. The new friend is an acquaintance who, upon hearing that you are giving care, offers help that is truly helpful. The kindness of new friends is always a surprise - often the most helpful friends are those you would least expect. Whether a good friend is old or new, it is clear that your friends are those who truly want to help. Friends will want to give what they can. Some may not cook, but their keen wit can suddenly flip fear into hilarity - that is a gift to a caregiver.
Caregivers have the obligation of reciprocating friendship, too. Most often, this means saying thank you. The sincere expression of gratitude is not a sign of weakness or evidence that the caregiver is miserably incapable of handling a loved one's needs independently. The gracious acceptance of help and friendship in the full knowledge that love flows both ways, is the key here. Good friends say, "You look tired. Here, let me help you." That's just what good friends do.
My book, 'The Four Walls of My Freedom: Lessons I've Learned From a Life of Caregiving' (House of Anansi Press) is now available from all major booksellers in the USA and Canada
Wednesday, 19 November 2014
I do not have that struggle anymore. A software program called Tyze Personal Networks now effectively connects everyone who cares for and about Nicholas. Tyze is owned and offered by Saint Elizabeth Health Care, a Canadian not-for-profit organization that has been supporting people at home for more than a century. Tyze is a private and secure online network that was developed to combine the efforts of family members, friends and professional supports in a circle of care. It is free to individuals but becomes more valuable when supported by a healthcare organization.
Before we were introduced to Tyze, Nicholas had a bedside, hospital-style chart where caregivers recorded both health and personal information. There was also a separate drug chart where staff signed for medications given. If Nicholas’ morphine dose changed, I couldn’t be sure that staff would see the notation in the bedside charts, so we installed a white board above Nick’s bed. There, we wrote important messages in large red lettering, hoping that new directives begun by one caregiver would be followed by the next one, especially if I was not home to point them out at shift change. Too often, a part-time health aide would give the old dose of anti-seizure medicine or morphine, assuming that nothing had changed since the previous week. They simply didn’t see the notes we had left.
LIFE AFTER TYZE
Today, we still use the bedside charting, but we do not rely on it to communicate messages of change in care protocols or important appointments coming up in the diary. Tyze Personal Networks shifts the responsibility for care from an individual model to a network model. A traditional, individual model of care looks like this:
Tyze has many features that enhance both social opportunities and continuity of care. For example, specialist medical appointments as well as recreational outings are entered into the calendar feature and network members receive timely reminders on their smartphones. Network members report feeling group solidarity because everyone has shared and equal access to information about Nick. Tyze has made it easy to share resources, to ask for help and problem-solve within the group.
OVERCOMING BARRIERS & ACHIEVING SUCCESS
"How did you persuade medical professionals to be part of a Tyze network?" is a question that many curious friends ask. The answer is not straightforward. In the case of Nick’s GP, he understood immediately that an online tool would help him to manage complex care involving multiple players but he was concerned that he would be bombarded with messages. He was relieved when we assured him that only the head nurse would send him private messages via the Tyze site. Plus, recent changes in allowable physician billing codes mean that our doctor can now be paid for the time he engages with Nick’s Tyze network.
The trickier barrier to getting Tyze up and running was compliance on the part of frontline care staff, especially after Nick moved out of our home and into a care facility. Every agency or institution has its own in-house communications linkages such as an intranet. At first, it was necessary to remind staff that their intranet excluded Nick’s family members but, eventually, everyone realized that the corporate knowledge of complex care was better managed as an integrated team with equal access to information shared by family and paid staff. Everyone began to appreciate the benefits of a single communication tool.
Like any tool, Tyze is only helpful if users populate it with pertinent information. When frontline staff members forgot to input appointments, I reviewed all my communications strategies and looked for ways to improve compliance. I realized that posting ‘need to know’ information on Tyze, such as staff shift rotas and holiday schedules would draw people to Tyze. Eventually, Tyze became the go-to site for all Nick-specific information. Now, if Nicholas has an emergency hospital admission, his network members know they have access on their phones to his medications list as well as his care plan.
Nicholas does not use Tyze himself, but it is only because he would rather use his laptop and iPad as sources of sports news and social media. Still, Nick reaps the benefits of being cared for by a well-coordinated team of people who love him and share his care. And for that, we are all grateful to Tyze.
Friday, 14 November 2014
Wednesday, 12 November 2014
The first is called The Greenhouse Project. It's an international movement in humanising eldercare, but it was a small project in Wyoming that caught my eye. Green House Living for Sheridan (Wyoming) is about as far from a traditional nursing home as you could imagine, and the residents of Sheridan like it that way.
From the Green House Living for Sheridan website:We envision homes in every community where elders and others enjoy excellent quality of life and quality of care; where they, their families, and the staff engage in meaningful relationships built on equality, empowerment, and mutual respect; where people want to live and work; and where all are protected, sustained, and nurtured without regard to the ability to pay.
(Typical day: based on elders – eg. When people wake up, they can wake up whenever they want. They can have breakfast at 10am and choose whatever they want. They sit at a long table like a family.)
The second model of care I want to tell you about today is from the UK. U-SHED is a cooperative, a bit like AARP - each member pays the small amount of 4 Great Britain pounds to join and that money forms a fund to help seniors top up old age pensions and pay for basics that they need. It's a model based on seniors helping seniors.
From the website:
Stan Stearman is the founder/creator of U-SHED and he told me that UK municipal governments have begun to take a real interest in the project and are supporting it. The fund is already helping seniors become more connected to their communities while staying in their homes longer.
As family caregivers, we want our loved ones to have a good life. We want to support them, but we cannot do it alone, especially when their needs increase over time. Knowing that some communities are creatively rising to the challenge of helping families keep their senior loved ones safe, secure and happy is 'chicken soup for our caregiver souls'.
My book, The Caregivers' Living Room: Lessons I've Learned From a Life of Caregiving is available in Canada and the USA from all major booksellers.