Imagine this… You and your husband Gary have been married for over 50 years; just last month you celebrated your anniversary. These 50 years of marriage have been wonderful. You do everything together. Life has been so rich.
And here you are, just a month after your 50th anniversary, and they say you likely won’t get to see your 51st. Gary is devastated and so are you. At only 72 years of age, you still had a lot of living to do. This disease is moving quickly. But he struggles with back pain and his balance isn’t the best. How will he take care of you when you can no longer take care of yourself?
And hospitals – who wants to die in a hospital? So cold and sterile and noisy. You’ve heard the stories; haven’t we all? One family brought music to comfort their dad as he was dying and the people in the other beds complained; he died alone and in silence. You read somewhere that 84% of people living in Canada only have access to this kind of care…if you can call it that. Less than 2 dedicated palliative care beds for every 100,000 people in Ontario. That scares you. “What will dying look like for me?” And you know it scares Gary.
Gary is trying really hard to reassure you and promising he will take good care of you. But he can’t and you know it. And he looks worried even while making those promises.
You wonder why there isn’t better care available for people like you who are facing a life limiting illness. Apparently it costs 10 Million Dollars and a few years to build a 10 bed hospice. And that’s just to get it up and running!
That’s a lot of money. And its not coming from the government either. The communities have to raise that money through donations.
I guess that’s why there are so few of them. No wonder they aren’t getting built. Just a few lucky communities here and there. And you get more worried.
Then your friend Judith tells you about Home Hospice Association. Never heard of them before. A lady named Jen comes over to talk to you and Gary. She asks you “Would you prefer to spend this time between your diagnosis and your final hours here at home?”
Well, of course you would! Who wouldn’t? You think about the memories you have there. You can’t even count the number of Christmas dinners and thanksgiving meals you’ve had there.
You look at the bay window in your living room. Gary put that in 15 years ago to brighten up the front half of the house.
The beautiful flower gardens out back. They were so pretty for your daughter’s wedding pictures. The basement smells better now since your youngest son moved out and took his stinky hockey equipment with him. Now his wife has to deal with it.
Your home is your oasis. Its not big, but its comfortable. The pictures on the wall. The memories. And this is the only home your dog “Felix” has ever known. She follows you everywhere – what will she do if you have to go into hospital?
Of course you would like to die at home. Who wouldn’t? But how?
Jen from Home Hospice explains exactly how! It takes a while to really let it sink in. After all, it’s a pretty new concept, especially in Canada. You thought the only hospice was the building you see when you drive along the 401 – and that was for people who were very close to dying. Anyhow, it finally makes sense to you – except for the part about it being free. That didn’t make sense. But Jen explained that money is raised for this care so that you and your family wouldn’t have to be burdened with that cost. So, you decide to go for it.
And so your journey with Home Hospice begins. This is going to be interesting. For now, when you can still move and get around and have some energy there are lots of programs available to go to. Some day programs that Home Hospice provides.
You asked Home Hospice about Spiritual care. Feeling a little nervous about some “priest” coming over to lecture you about going to church and stuff. But it wasn’t at all like that. A really nice man came over and you just talked about life – and about death. He was very gentle and not pushy at all. As you talked, he just let you direct the conversation. In time things became more clear in your own mind and you could make up your mind where to go with it. Your idea of church and clergy sure was changed.
Gary is getting tired. You can see it in his eyes. Such a faithful husband. You’d marry him all over again. Home Hospice has been caring for him too. Emotional support. And now that he is getting tired (and almost admitting it) he will be getting some respite.
Volunteers begin to come more often to spell off Gary and your ever so faithful family members. They have been benefitting also from the grief and bereavement support they have been receiving.
You feel better that they are more prepared for your inevitable departure.
Felix your little four legged baby knows something is up. She is acting strange. Almost like she knows you are in trouble. Fortunately, Gary can take care of Felix, but if for some reason he wasn’t able to care for her, someone would even do that and then adopt him when the time comes.
Some days the place is buzzing with volunteers. They come and help with whatever you need. Cook or bring meals, houseclean (Gary never was very good at that), weed the garden, shovel the snow. Whatever you need! It’s amazing!
You didn’t know what to expect on this journey. You figured it would be a steady downward slide until the end. But that wasn’t the case.
In fact, there were days and sometimes weeks on end that you felt actually pretty good. You could go out and to fun things. You and Gary could go for walks in the forest. You love the woods. They speak to you. The trees, the colours, the sounds of little critters scurrying around. It sooths your soul.
And during those times when you felt pretty good, the people from Home Hospice weren’t under your feet – wanting to do everything for you when you were perfectly capable of doing them yourself. At times, life was pretty normal and you and Gary were quite independent. When you could garden and cut grass, you did it. When you couldn’t – the volunteers did it. And they did it with such joy. Almost like it was feeding their souls too.
But at those other times when you needed extra medications or equipment, it was always provided. Extra doctor and nurse visits. It was like your hospice care was tailor made for you and totally flexible as you needed it.
You’ve never been a very religious person but you’ve always had questions. Now, closer to the reality of death those questions have suddenly become much more important.
As your illness progresses, you’ve needed more care. And it is just as if they know what you need before you need it! They understand it takes all kinds of support because when you are dying everything needs attending do your body, heart and mind! And that includes specialized care and respite for Gary as his is part of the circle of care as well.
With Home Hospice you’ve got a team behind you that knows what do to and how to do it. Available 24 hours a day 7 days a week.
Things seem to be really progressing now. You know your time is short. But as you look back over the past several months, the journey has not been nearly as bad as you imagined or as bad as the stories of others that you have heard. You and Gary decide you want to financially support the Home Hospice Association in your community so that others can have the kind of dignified and compassionate help you have enjoyed on this journey.
Jen had told you that this program will help at least 336,000 people in Canada per year! That’s incredible!! You feel good about supporting something like that.
When the final days and hours arrive Home Hospice provided a “death doula”. You had never heard of that before either. Just like a birth doula helps bring a new life into the world, a death doula helps you in your last stages. It brings so much comfort to your family so they can focus on you and their own pain.
She was great. Francesca was highly trained. She knew exactly what to do and what to say. She recognized the stages and kept Gary informed. There were no surprises. She knew just how to make you – and him - as comfortable as possible.
You love instrumental music. Especially the cello. Soothing. Francesca brought in a stereo and played beautiful songs, most of them you recognized and brought back memories even as you lapsed between clarity and confusion.
As you lay in the very bedroom where you and Gary slept and made love all those years, you feel a deep sense of peace. Yes the room looks a little different with the medical equipment and stuff. But the pictures of your life are on the wall to your left along with the picture of you and your handsome Gary on your wedding day. When you have the strength to open your eyes, they move between the familiar surroundings of your bedroom and the faces of your family and Francesca as these last moments go by.
As you breath your last few breaths, your mind and heart are at peace because you know that your family will receive the emotional help they need, that Gary’s memory of your passing will not be frightening and stark like it might be in a hospital, but rather peaceful. He will treasure that memory.
You squeeze his hand to tell him that you love him in the only way you can and then you quietly slip away.
The Need and Solution
Need: More Palliative Beds
<1.4 Palliative Beds / 100,000 residents vs. the minimum of 7 estimated
<60 beds in all of Canada for Children.
<70% are dying in the hospital; For each child or adult who dies in the hospital, one is waiting for a bed that could save his/her life.
For Any One, Of Any Age
<Reduces hospital (bed) wait times for those who need curative care.
<No waiting for a palliative bed.
<No limit on who is supported.
Need: To ease the anxiety of a diagnosis
<Mental Health Agencies are not providing specialized attention to the mental health issues associated with a life threatening diagnosis.
<Primary caregivers have limited access to support to ease their anxiety.
<The risk, of caregiver burnout, to the Ontario Health Care System is alarming.
At Any Time
<Respite programs “de-stress” primary care givers.
<Pet programs to keep pet and owner together.
<Grief programs to work through fear.
<Pediatric Support holds a family in the arms of compassion; strength to face “the impossible.”
Need: Most communities cannot afford to build and run a Residential Hospice
<A 10 bed residential hospice will cost approximately $10,000,000.00 to build.
<Typically takes five years to “Ribbon Cutting.”
<Donor exhaustion makes ongoing fundraising (typically $1.2 million annually) challenging.
Free 24 Hour Support Under Any Roof
<70% wish to die at home, not a “home like” place.
<Support begins with the first dollar raised.
<The same $10 million invested in bricks and mortar provides a minimum of 14,286 days of care.
<Per person per day support costs are variable and can be reduced as Home Hospice Association grows.
To learn more about Home Hospice Association's unique approach to Palliative and End of Life care please visit www.homehospiceassociation.com