Dying at home: a dream for many, a reality for few

By Sandi Digras

In 2014, my husband accepted nothing more could be done for his failing heart and he was designated a Palliative Patient. We were assured this was a not an immediate death sentence, but his months of life were quickly ebbing. All he wanted to know from the Doctor was, “Can I die at home?” What a loaded question that was!

On the eve of the third Anniversary of his death I now realize what a great gift I gave him by helping do just that: die at home in his own bed with dignity. Thankfully we had some assisted home care, but it was not a perfect solution by any means. That personal experience taught me much about our healthcare system.

We are a very long way from the inclusive model of homecare that we should be striving for in this aging population. Dying at home surrounded by family and people who care for us is an ideal we hope will be the future of a new model of home-based palliative care.

Watching my husband’s heart fail and helping him to achieve some dignity during this debilitating process was heartbreaking for me—and more so for a proud man. But having caring neighbours and friends come to our home made him feel he was still involved in his own life. He ate when he was hungry, and slept when he wished. He could care for his personal needs to the end.

The sadness of going into care, as the model exists today, is that many aspects of a person’s free will are surrendered, and changes are required at a time when things are happening so quickly they can scarcely keep up. Sometimes, body or mind fail, which can create an atmosphere of fear. This is why so many families encourage their aging parents to accept a change to assisted living, or residing in a care facility, before it is necessary for their health.

My younger sister faced this reality in her early 50s, when she was diagnosed with early onset Parkinson’s. A more dynamic beautiful person you could not find. She had been a successful model, and a ‘glamour girl’; as she was forced to see herself changing so quickly, she lost all perspective of who she was. At the same time her husband was diagnosed with non-Hodgkin’s lymphoma, and died two years later. The glamourous life she had known was gone. In its place was a body that betrayed her: no longer familiar, but shaking with tremors and other symptoms that, over the following 20 years, confined her to a wheelchair most of the time. The only thing that remains now is her faith and fighting spirit. She is in assisted living facility, but has her own caregivers and assistance that provide company and support. She is blessed with loving children and family nearby, and she is able to spend time with them. 

I recently spoke to her, on my 75thbirthday, and she asked me a poignant question: Do you like to live alone?

At first, I said Yes, it was a nice change from the caregiving role. It allowed me free time to pursue my own interests and goals. The quiet was nice. 

But—and this is a big but—I have a chronic degenerative disease called COPD (Chronic Obstructive Pulmonary Disease) that is incurable and, over time, promises to leave me quite literally breathless and unable to do much more than exist. Walks, trips and just getting around daily will eventually be a thing of the past. Yes, there are medications for the management of my condition, but quite frankly they don’t make much difference. 

The irony of this form of COPD (chronic bronchitis) is that it is normally a smoker’s disease—and I never smoked. Meanwhile my neighbour, who did smoke for 40 years, is full of life and pep, and she walks the golf course four times each week. I don’t resent her; I applaud the fact God has given her a pass so far and she is using it the best way she can. 

However, with our health care system in dire straits and the future of homecare in the balance I do not relish my own uncertain future. So, after some sober second thought about my sister’s question:

Do I like living alone?

I can honestly answer that I am not sure. I have days when I am bedridden with exhaustion and just walking into the kitchen for a lovely warm cup of tea is an effort. I think then of the times in the past when my husband would bring me my breakfast in bed, and it was such a treat. It would be nice to see someone, and hear a caring voice asking if I need anything, rather than receiving a text asking Are you OK? It’s too easy to forget my response: I’ll live. That is the downside of the digital world. I am guilty of that as well; I do it too. Those one-liners that we hope are a nice response are sometimes a dismissal of any real concern, and are all too common in today’s emotionally detached world. We avoid telephones because they are messy and require more emotional attachment to the caller: a real response to their needs. 

So, what do we do?

We seniors on Vancouver Island have come to the realization that if we want our independence—and we do—we must get used to living alone, taking the good with the bad. We also should learn when to ask for help—and ask!—then be grateful and loving when it is provided.

We need to tell our families our preferred wishes and share with them how we want to see those wishes taken care of. We need to have those difficult conversations before it is no longer possible. We need to share those thoughts and ideas, and we need to write them down. The Diocese of Victoria has an excellent Estate Planning Resource available; you can obtain one by contacting the office at (250) 479-1331 or by emailing lobrien@rcdvictoria.org.

What is the hopeful future?

The ideal is a new level of assisted care in a more home-like environment. The ideal is small homes completely equipped with everything necessary to sustain our failing lives, but without the large institutional approach we presently have as a model. 

Entrepreneurs are looking seriously at this model, including my younger brother who lives in the southern United States. He assured me the statistics show this is the perfect solution for those of us who someday will want care and love without the living in a large, institutionalized facility. We want a real home with bedrooms, a living roomm and outdoor space for family to visit, and for us to sit and enjoy nature.

I hope Canada’s healthcare system sees the value in this model and for assisting seniors within their own homes rather than waiting until it is too late. The existing healthcare system will continue to be overburdened; we all know we are going to die, but the question is How, where and with what help will we die?

Those are the questions we must ask ourselves and our politicians so we can provide loving alternatives to Medical Assistance in Dying (MAID), which a recent article states “will save the healthcare system and families millions of dollars.” The Bible tells us “All life has value.”

We need to speak up and be heard.