Wednesday, 13 December 2017

TREVOR'S STORY: FROM ADDICTION TO CAREGIVER


If you told me a decade ago that I’d be responsible for someone else’s life, I’d probably have laughed. Back then, I was barely able to take care of myself. I was a drug addict.
Today, I've been sober for nearly a decade, and I have a new lease on life. I am so thankful that I got myself together because now I'm charged with caring for my elderly father. Aside from putting him in a facility, I'm the only one who can do it. I don’t even want to think about what his life would be like if I hadn’t recovered.
But being in recovery has given me a different perspective on my role as a caregiver. You see, my father was recently prescribed an opioid painkiller. When some people think about addiction, they don’t think it can happen to the elderly. I know better.
I've been in various rehabs in my lifetime, and I know that addiction can affect anyone. The elderly are even more susceptible because they have a slower metabolism. Their bodies aren’t as efficient at processing the drugs as ours.
Prescription drug addiction is a growing problem for the elderly. The following are some of the steps I take to help my father avoid addiction:
1.              I control the pills – Being a recovering addict myself, this isn't easy for me. But I feel it's necessary. I don't think my father would intentionally abuse his painkillers, but his memory isn't what it once was. I'm afraid he may take too many pills simply because he doesn't remember. For this reason, I keep all of his pills in a drawer in my room.
2.              I keep a record of how often he takes them – Unlike his heart medicine, painkillers aren’t pills you should take on a regular basis. They are only supposed to be taken as needed, and I want to know if he gradually needs more to dull his pain. Currently, he's only taking about two or three a week. Every time I give him a pill, I make a note. This way, I can look back and see whether his needs are increasing. If they do, which is common, this is something I will discuss with his doctor.
3.              We have in-depth conversations about addiction – My father knows what drugs have done to my life. He understands that I wasn’t some type of derelict before drugs. Anyone can fall victim to addiction. Thankfully, he really understands the inner workings of addiction. He doesn’t want that life any more than I want it for him, so he understands why I am so focused on his prescription medications.
It’s funny how life changes. I never thought I’d be in this place, but I am so grateful to be here. My father was one of my biggest supporters through one of the most challenging times of my life, and I’m glad to be here caring for him when he needs me. This is a job I take very seriously. In fact, I think it may be one of the most important things I can do.
Trevor McDonald is a writer and recovering addict who’s been clean for over 10 years. Since his recovery began, he has enjoyed using his talent for words to help spread treatment resources, raise addiction awareness, and general health knowledge. In his free time, you can find him working with recovering addicts or outside enjoying any type of fitness activity. Trevor is a caregiver for his father.

Tuesday, 12 December 2017

WHAT I WANT FOR CHRISTMAS IS...PERMISSION

Recently, I came across a great quote prompting caregivers to consider taking a break: An Iphone doesn't ask permission to be charged.


This got me thinking about our personal values and how they sometimes make caring harder than it needs to be. Do we give ourselves and our loved ones permission to be imperfect? 

Last week, I blogged about re-thinking self-care. I posted that blog on The Caregivers' Living facebook page and lots of people wrote to express their thoughts and feelings about self-care. Shannon wrote this: Self care during crises - for me, this means stripping out all the unnecessaries. It means giving myself permission to serve microwaved dinners instead of cooking meals, online grocery shopping and Walmart parking lot pick up, even deciding that bills can be paid 2 weeks late and for now I will just give myself permission to do only what absolutely must be done.

Ann wrote: As an eldest and a solo mama, i can really relate to other families (mostly solo mamas) who get 'it', and the meditation outside of a kitchen window that overlooks a rather unkempt yard that nourishes many birdies and other critters who fly in for various seeds and snacks, to the joy i feel when i can actually wander/walk around without 5000 things on the to-do list invading my head space, or the once-in-a-blue moon chance to dance with other 'hip-types'... and a really good psychological thriller and even better murder mysteries/novels... how delicious!

So, for Christmas this year, let's all wish for permission to have a messy house, a shared memory instead of a dust-free window sill, a chocolate bar for dessert, a few minutes to watch the birds instead of paying bills and time to hold hands before the dishes get done. 

And let's give ourselves permission to love our loved ones as they are - in all their imperfections. And love ourselves with the same loving, generous heart. 

Sunday, 10 December 2017

Helping Your Loved One to Give During the Holidays

I posted this two years ago, but the message is still just as vital, I think. How can we help our loved ones to give during the Holidays? Giving is a powerful sign of personhood, of contribution and our loved ones want to give those they love, too! How can we help do that? Here are my thoughts and a bit about what we do in my family.  Merry Christmas, everyone! And Happy Hanukkah too!

The last few days, I have been thinking about the privilege of giving.  This is a story that came to mind:

I was just 22 years old when my husband Jim and I were posted to Moscow in 1978.  It was the Brezhnev era and we were nervous about living in a faraway foreign land. But, Jim and I had slogged over Russian language lessons for a year before we left, so we felt somewhat prepared.  Of course, that was a long time ago and way before our children arrived on the scene.

Our time in the USSR was a great adventure and we made good friends both in the diplomatic corps and within the 'refuznik' community of Muscovites (those who had applied to leave Russia, but had been refused an exit visa). 

Jim and I assumed that Eastern Europe would be our future work focus, but when Nicholas was born with disabilities, those plans were de-railed.  In fact, our colleague and friend from our 1970's Moscow days, Rod Irwin, was later named Canadian Ambassador to the Russian Federation. 

It was Rod's wife Penny who introduced me to the remarkable Moscow charity, Maria's Children.  Maria Yeliseyeva is a Moscow artist who has taught painting and textile arts to, over the years, thousands of orphans, including those with disabilities.  A few years ago, when Penny and Rod returned to Canada from their time in the Ambassador's official residence in Moscow, Penny dropped over to give me a gift.  It was a quilt.  Not a large bedspread type of quilt, but an artwork depicting a Russian countryside winter scene.  It was beautiful.  It was clearly made with joy, imagination and love, not to mention great skill. 



Penny told me her story of visiting Maria's Children and noticing the children with cerebral palsy.  She told Maria about our family and about Nicholas.  Maria pressed the quilted picture into Penny's hand, saying "Please take this and give it to your friend in Canada.  It will be a great thrill to the children who made it.  You see, they have grown up in an orphanage and they have never before given a gift to anyone.  This is a great opportunity for them."

I've never forgotten those children and their gift to us. 

At this time of year, that story reminds me of the importance of helping our loved ones continue their traditions of giving, even if they are infirm, ill or disabled.  This year, my Mum has not been well, so I made cheese balls which I wrapped with cards for her special friends and helpers.  She is so happy to know that her friends will receive a Christmas gift from her that says not only, "You are one of my favourite people", but also, "I may need a lot of help these days, but I can still give too!"

One of my favourite things to make and give with Nicholas is white chocolate bark candy.  It's become a real tradition in our house and we all love it.  It's so easy, but it looks gorgeous and when it's presented in clear plastic bags and tied with ribbon, it's a great gift that everyone is thrilled to receive.



So, here's our recipe for White Chocolate Bark:

Ingredients

  • 1 lb (454 g) white chocolate, chopped (We use Baker's brand)
  • 1 cup (250 mL) dried cranberries
  • 1 cup (250 mL) pistachio nuts, shelled

Preparation

In bowl (plastic or glass), melt chocolate in microwave according to package directions. Stir in cranberries and pistachios. Pour onto foil-lined baking sheet; using palette knife or rubber spatula spread into 12- x 9- inch (30 x 23 cm) rectangle.
Refrigerate for at least 1 hour or until hardened. Break into pieces.

The hardest part of making this recipe is shelling the pistachios.  My daughter Natalie loves this job though, and so do I.  (We eat quite a few as we're 'working'!)  It's just lovely to sit around the table and chat as we're shelling.  Nicholas helps to stir in the cranberries and nuts.  Of course, he's the official taster as well! Note: this year I didn't have time to shell the nuts, so I bought the more expensive shelled version. 
I hope the loved ones in your family have the opportunity to give at this time of year.  I would love to hear your stories of enabled giving and please do share your recipes if your gifts are edible!

Thursday, 7 December 2017

SELF CARE? YOU HAVE TO BE KIDDING.

Last evening I presented a workshop on self-care for caregivers in my city of Ottawa, Canada.



Going in, I knew that this group had huge challenges at home and that they were pretty cynical about the standard 'just have a bubble bath' approach to self-care. These were parents who need to be hyper-vigilant in order to keep their children with disabilities safe every single day. That was all OK with me, because I agree with them - 'Five Top Tips on Caring For Yourself' doesn't cut it for caregivers looking after high needs loved ones.

So I decided that it was time to re-imagine what self-care might look like for people who are in the thick of caring - folks who know taking a bubble bath is never going to be possible or helpful.



I began by asking, "What is self-care anyway? Is it just one more thing that we're supposed be good at?" We talked about how caregiving guides often blame us for feeling tired or overwhelmed because we didn't practice a version of self-care that is impossible in our households.


Next, I asked everyone this question. "What does self-care look like for you when you're alone with your loved one?"  The answers were interesting - "I paint or draw with my daughter. That is relaxing for us both."  Another said, "I get up very early while every else is sleeping. That's my quiet time when I can really relax."

Another question: "What does self-care look like when you are together with your whole family?" One caregiver answered, "I feel cared for when our family visits people who 'get us' - who don't judge us and who feel comfortable with us." Everyone nodded in thoughtful understanding.

Then, I asked, "What does self-care look like when you are home alone?"  One caregiver responded, "I'm never home alone!" and we all laughed. Then someone reflected, "I meditate. My kitchen window overlooks a field and I look out at the open space. That makes me feel relaxed and soothed." When someone suggested that reading fiction and watching movies on television was a way to climb into 'someone else's life and story', we all agreed that fiction is a powerful form of self-care. Except when it's too much. "I find though, that if I watch too much TV, I feel worse. Like I've given more of my time than I've received in return. I feel empty after watching too much."

Finally, I asked, "What about self-care in the community? How do you care for yourself outside of home in your neighbourhood?" "Walk my dog!" said one. "Go to work and have an intelligent, adult conversations!" said another. "Go outside into the woods. Being in nature feels so good", said a tanned and fit older caregiver.

We finished our evening chat by reflecting on how self-care can realistically be embedded into our busy, caring lives. Is it possible to be more aware of our own needs as we care for others?

I pondered this question as I spent time with our son today and planned a visit to my Mom tomorrow. And in the meantime, tonight I'm going to have a bubble bath. Maybe they're not so bad after all.




Monday, 4 December 2017

DIANE'S STORY



I am so pleased to share a personal caregiver story from Diane today. Diane's husband Bob had a devastating stroke and sadly passed away in 2015. Diane shares her wisdom with us today. I'm grateful for stories of stroke caregiving because my Dad had three strokes and after living for two years with paralysis and loss of speech, he passed away in 1975. 



Each year, over three-quarters of a million people have a stroke in America. The impact of a stroke affects the life not only of the individual concerned, but those of friends, family, and loved ones, who often take on the role of caregiver. The responsibilities this sudden change entails are emotionally and physically demanding, and support can be difficult to find. Diane from The Pink House on the Corner shares with us her story of caregiving for her husband, Bob, whom she chose to bring home following his stroke.

A guest post by Diane
In 2010, my husband, Bob, suffered a massive stroke post-surgery. After a two-month hospitalization, he was transferred to an Acute Rehab Center where he was pronounced, as the doctor put it, “nursing home material”. Bob was 52 years old -- not “nursing home material.” It was true that Bob could not walk, talk, swallow, could not stand, and had to be transferred from hospital bed to wheelchair with a Hoyer Lift. Still, I was adamant to take him home. In my mind, nursing homes were for the old, sick, dying, and Bob was none of these.
The doctor, against my wishes, proceeded with the admission process to a nursing home. Imagine my surprise when a representative from a nursing home showed up at the hospital, armed with a glossy brochure and a sales pitch about the facility that was so great, they even tried to provide 3 “units” of therapy a day. Though, of course, that depended on staffing.
A “unit” of therapy turned out to be 15 minutes. That would mean Bob would get 15 minutes of physio therapy (PT), 15 minutes of occupational therapy (OT), and 15 minutes of speech therapy (ST) each day (maybe). When I refused, I was told they didn’t need my permission -- it was out of my control.
Of course, I argued. With the doctor, the case manager, all the way up to the director of the hospital, without luck. My fear was that Bob would not last long in a nursing home with a patient/nurse ratio of 8 to 1. He would not recover with 3 “units” of therapy (maybe) per day. I could give him better care at home.
Then a “miracle” happened. The nursing home wanted $3,000.00 before Bob could be admitted. I told them I didn’t have the money. Sometimes it pays to be poor. Bob was discharged, in my care, on New Year’s Eve 2010.

The realities of caregiving

I had no idea what I was getting myself into.
Me: who never changed a baby’s diaper.
Me: now the sole caregiver of a 6'3" man who was incontinent, could not walk or stand, had a feeding tube inserted in his stomach, had aphasia and could say only three words: “no,” “radio,” and “window.”
Me: with expectations that there was “help” out there for at-home caregivers.
I did contact every agency that I could find, only to be told that Bob did not qualify for programs. He was too young, because he was under 65. He was too old, because he was over 21. We were “too rich,” as Bob’s social security disability (SSD) check was $200.00 over the income limit. I did manage to get a wheelchair ramp for the house, provided by one charity. I did get him wheelchair transport through the county bus system. I did find a financial aid program through a not-for-profit hospital that paid his co-pays for outpatient rehab. I did get help for the first month through Bob’s insurance.
We had a nursing assistant (CNA), for changing and bathing, and a nurse to teach me how to manage his meds, his feeding tube, and how to work the nightly feeding pump. But after four weeks, insurance ran out and I was on my own. I was not prepared that much of caregiving involves bodily fluids: adult diapers, urinary incontinence, daily laundry – all of which was overwhelming. I remember, that first week sitting on the back porch late one night behind a heap of urine soaked bedsheets, crying and wondering if I was really able to pull this off.
No one told me about condom catheters – I found this out a year or more later. These helped both Bob’s comfort and my cleaning up after him. No one explained that the feeding tube was not “permanent” and should be changed out every 8 weeks – this I discovered on my own, much later, and if I had known this it would have saved us countless trips to the ER for a clogged tube, and countless hours on my own unclogging the tube.
God bless the nurse who told me it was not necessary to have a daily bowel movement. The hospital had discharged Bob on a daily laxative, which meant constant diarrhoea. This nurse taught me “bowel movement management,” giving laxatives only when necessary.

The emotional strain

One of the hardest and most heart-breaking tasks was trying to keep his therapy going – I would take him to PT, ST, OT three times a week, pushing him there in his wheelchair, and though he showed improvement (being able to walk holding onto the parallel bar), the therapy was ended for “no functional improvement.” So, I had a railing installed in our hallway where Bob could practice walking, with me pushing the wheelchair behind him, and holding him up with a gait belt. I developed our own speech therapy and we practiced daily. I did this after the speech therapist insisted on using pictures for him to point at and teaching him gestures. Bob was good at repeating things and I used his ability; I would say a sentence, and he repeat it. I did his range of motion to keep his paralyzed arm and leg from freezing up. I bugged his primary care doctor every six months for a new script for outpatient therapy where they have special equipment, things we didn’t have at home. Each and every time, it was like starting from “square one,” and the insurance would stop after 8 weeks for “no functional improvement,” which never failed to shock me.
Another shock was the way people treated Bob post-stroke. “Baby talking” to him as if he were a child or an idiot. Talking over his head, to me, as if he wasn’t in the room. Shouting at him – as if he couldn’t hear. The friends and family who fled – as if stroke is contagious. Bob was still the same person just trapped in a disabled body. I wanted people to treat him with respect. Speak to him normally. Include him in conversations. Have patience as it sometimes took him time to respond. To listen. Visit. Make a phone call. Only a few did. I am grateful for those few.
There were other battles too, fighting for adequate pain medication, fighting for medical equipment and supplies, including a power wheelchair – the doctor insisting that Bob couldn’t manage it, and me arguing to at least let him try. That doctor, finally, ordered a powerchair, on the condition that it had an attendant control so that I could “drive” it. The first time I attempted to “drive” it, I plowed Bob straight into a wall. When Bob took control, he zoomed around the room.
I learned over the years to stick to my guns, follow my gut, and fight for my man.

The ups and downs of caregiving

Caregiving is hard. Frustration, anxiety, stress all build up. You find yourself crying, screaming, angry (Why us? Why me?). There is no time to take care of yourself, to sort out all these emotions. So you take a deep breath. Tough it out. Ignore that cold that doesn’t go away. Or that suspicious looking mole. Cut your own hair. Hope for the best and concentrate on caring for the one you love.
Then there’s grief. Grief over the loss of the man he once was and would never be again. Grief over a relationship that has changed from equal partners to caregiver/patient.
Blogging was one way I was able to vent/rant about the frustrations and anxieties of caregiving. I started my blog shortly after Bob came home. It was the one thing I could do for myself, steal 15 minutes a couple of times a week. I began blogging to keep my “hand” in writing (my profession) and to keep our family and friends informed, but strangely it turned into something else. I didn’t realize there is a whole “stroke community” out there, where I “met” stroke survivors and caregivers around the world and appreciated their support, their stories, and just knowing that we were not alone on this journey.
Caregiver burnout is real. There were many days when I felt I just could not “take it” any longer. Nights crying on that back porch then wiping away the tears and returning to my duties, putting on a smile for Bob’s sake.
All that said, I wouldn’t change a thing (well, except for the stroke part). I am glad I was able to care for Bob at home.
I cherish memories of quiet nights, watching a movie, holding Bob’s hand. Memories of “hand dancing” to a song on the radio. The nightly I love yous called to each other across the room. The way he would sing while doing his therapy exercises. The triumphs, like the first (and only) time he was able to stand up with a hemi-walker. Every new muscle movement he regained.
I deeply admire his courage and strength and motivation to never give up, never stop trying. To accept the things he could not change with a shrug and an “oh well.” Near the end of his life, though he was still not able walk or swallow, he could “tool around” (his words) in his powerchair and speak entire sentences. I’m sure he would’ve never accomplished those things in a nursing home.
Bob was able to spend his last five years in the comfort of his own home, with his two beloved cats, our dog, and with me by his side. For that, I will always be grateful.

Bob passed away on May 28th, 2015. We would like to thank Diane for contributing this guest post.

Wednesday, 29 November 2017

I Never Identify a Problem Without Suggesting a Solution!



In my last post, I talked about how we can easily move from being caregiver to being perceived by medical professionals as 'a family from hell'. This breakdown of relationships with doctors, nurses and therapists can happen especially when your loved one's needs are very high, interventions have turned out badly, desperation enters the picture and professionals are up against the wall with few options to ease suffering. 

That's the problem. But luckily, Dr. Yona Lunsky, a very clever and compassionate doctor-researcher (who is also a sibling of an adult sister with disabilities) has taken it upon herself to educate colleagues on how to re-frame their thinking about 'difficult families'. Dr. Lunsky is Director of the Health Care Access Research and Developmental Disabilities (H-CARDD) Program at the Centre for Addiction and Mental Health. She skilfully employs her prestigious academic credentials to advocate for proactive and compassionate care of adults with developmental disabilities and their families. 

Dr. Lunsky's dual family and clinical lens combined with her solution-based advocacy approach led her to write this guide for medical professionals treating 'difficult families'. 

Dr. Lunsky advocates with great compassion for her colleagues. Here's how she describes a scenario of a fictional clinician called Janet: Janet got another call from Sonya’s parents, complaining about everything. These days, it feels like there is something upsetting them almost weekly. Why does it have to be her job to be the one having to deal with this?

Lunsky understands that clinicians want to help their patients. But, she goes on to say - "No one told Janet that she had to work with families. She came to the field because she wanted to help people with developmental disabilities. This other business was not part of what she signed on for." Advocating with empathy opens the door to the possibility of attitude change. 

Here are Dr. Lunsky's lessons for her colleagues: 

Lesson Number 1: There is no such thing as difficult families. There are just families with difficulties. 

Lesson Number 2: Family perspectives may be different but that doesn’t make them wrong.

If you are experiencing a fractious relationship with the clinical support staff in your life, read Dr. Lunsky's guide and consider sharing it with your doctor or case manager. Use Dr. Lunsky's example and advocate with empathy for the good of shared understanding and most of all, compassionate care for your loved one. 



Thursday, 23 November 2017

How We Go From Competent Caregiver to 'Family From Hell'



Last week an article circulated among my caregiver friends called Ask the Expert: Managing the Relative From Hell.  This shocking 'advice' column for care home professionals who struggle with worried visiting relatives includes snippets such as, "You’ve all had one!  Turns up at antisocial hours, interferes in care, upsets the staff, makes constant complaints without basis, instructs care changes against professional advice" followed by the righteous, "It is your home.  You have the right to control who comes, who goes and how they behave." And the penultimate zinger: "THE VISITOR…has effectively no rights, particularly if their conduct is unacceptable. The expression “next of kin” has no meaning and carries no rights."

The article was so egregious, it provoked a flurry of excoriating responses from families and care providers alike. Like this from a reader called Jools, "Utterly shocking. You don’t seem to grasp that it is the resident’s home, not the provider’s. Neither do you grasp that you need to be working WITH relatives, no matter if they present as ‘difficult’. Difficult usually means ‘worried to death’ that the person they love – and know much better than you ever can – is totally dependent on the care of strangers."

Fuming after reading this 'advice' column, I did a google search for more of the same (I'm like that when I get mad). I found a blog post by two disability Moms from the UK titled Difficult Families?  They got angry and wrote about it when they saw an employment advertisement for children's services workers who had experience working with 'difficult families'. So, here's their definition of difficult families - all caregivers insert your loved one's descriptor in place of 'child' or 'children' because this description fits every one of us. 


“Difficult families” is a lazy and disrespectful way of describing families who are:
  • Desperate for their child and family to have a decent life
  • scared of what the future may hold
  • frustrated by a lack of support for their child’s education, health or care
  • angered by abuse
  • intimidated by ‘professionals’
  • bewildered by the system
  • infuriated by not being believed and taken seriously
  • exhausted by lack of sleep
  • living with uncertainty about their child’s health
  • struggling to understand how to meet their child’s need
  • worried about how they will pay the bills
  • physically broken by the 24/7 care and lifting they give
  • lonely and isolated because there is nothing left for friends and relationships
  • low on patience because things have gone wrong so many times
  • experiencing daily hate crime from neighbours
  • racked with guilt about whether they are doing enough for their children, whether they have failed them
All this talk of difficult families got me thinking just how, when the going gets the toughest, we are demonized by those working for systems that cannot meet our escalating needs.  The worst case scenario is being on a waiting list for another level of care, or for more help at home. The situation escalates, but the system is maxed out, the waiting list bottled-necked. At home, the situation becomes dangerously unstable and sometimes even life threatening. We become...'difficult'. And that's when we are called 'families from hell' at the worst. At the least, we are labeled as 'not coping', 'aggressive to agency staff', or in the case of children's care, 'incompetent parents' (because our children's needs are too high). I have been on the receiving end of all these descriptors and most other caregivers I know whose loved ones have very high needs have too. 

I have also known the gifts, talents and the kindness of care professionals who have dried my tears, held my hand and then got to work WITH me to make my loved one's suffering less. These are the heroes of our care systems. 

If you hear talk about US vs THEM in care circles, call it out. Shut it down. Use the language of teamwork and of compassion. Use a rights-based argument if those don't work. But don't allow the demonization of family caregivers to be the normal response of an over-taxed system.