Hospice at Home

My mom wanted to die at home. It was important for her to be in her own environment, surrounded by her children and grandchildren. We obliged because we wanted the end of her life to be meaningful and to end on her terms. From the time she was diagnosed with terminal lung cancer to her death was three weeks. This was a very demanding and intense time for our family. Although we are open-minded and strong individuals, our family was subject to the same drama and emotional outbursts that other families encounter.

Our mom had faith in us that we could do what she asked of us. For us though, the saving grace was that one of her best friends was a hospice nurse.  As well, our local hospice was phenomenal in supporting us in whatever way they could. Mom’s friend, and my daughter Dale, who is also a nurse, provided plenty of support for the medical details, answered numerous questions, and assured us that we were doing all we could – and we were handling things just fine.

Although there was myself and three sisters staying with Mom in her home and our brother who lived only a few blocks away came over daily, the process of providing her end-of-life care was exhausting. She was in pain. She had a plethora of emotions to work through herself. She needed medical care. She had a host of fears to process. And each one of us had a heart that broke a little more every day. Goodbye, like a runaway train, was approaching fast and there was nothing we could do to slow it down. It left us feeling hopeless, overwhelmed, and desperate to make as many precious memories as possible.

We did many things to facilitate Mom being able to say goodbye to us and us to her. I have written about the Farewell Journal in a previous blog, and I will share other things in future blogs, but this blog is intended to shed light on the importance of a family being equipped to do the work of providing end-of-life care.

Not everyone can do it. And it is a very difficult situation when your loved one pleads with you to stay at home. My best advice is to seek support from your local hospice; they will comfort you and work with you to let your loved know that this is not something that you feel you can do. There is no shame in that. It’s best to know your limitations and to honour yourself first.

If the family does feel they can provide end-of-life care, it is important to seek the support of the local hospice, a minister or pastor for spiritual counsel, a social worker or counsellor to work individually with the family members so they can express their sorrow and to enlist the help of extended family and friends so the caregivers can take a break.

Remember the “family pressure cooker.” It does not matter how close a family is, tension and emotions build and even the calmest of calm can explode.

Sometimes, one or more family members will try to “take control” of the situation and attempt to orchestrate everyone’s move. They tell you what you can say. They tell you what you can do. They tell you how much time you can spend with the dying person.  All of this can lead to tension, hurt feelings and ultimately a blow-up. First of all, they don’t have the right to control this. Everyone in the family has a right to be with and to say goodbye to their loved one. Again, a local hospice will be of tremendous benefit to help families work through these dynamics and to keep the focus on what is important… the dying person and their wishes.

Finally when death arrives, don’t force yourself to “rush” back into the normal routine of daily living. It’s impossible. I remember after I returned home from Mom’s funeral and calling one of my sister and saying, “This must be how it feels to return home from war. We saw horrible things. We never want to repeat this. We lost a precious life and watched her take her last breath. And yet, there was something so beautiful about the process…something that we can never replicate. We bonded in a deeper way than one could ever imagine possible. And all of it is mixed with the joy of returning home to our spouses and children.”

Providing end-of-life care for a loved one is truly a unique experience. No one person in the family should be responsible for it. There are many factors to be considered. The best part is there is help through hospice and it’s available to everyone. You can locate a hospice and palliative care organization in Canada, the United States or worldwide by visiting www.hospiceinternational.com.