The following article was written by the family of Tony Alvarez and is published with their permission. It is a moving tribute that we feel will resonate deeply with families, sharing important perspectives for everyone in the community living sector to consider.
Our brother, Tony Alvarez, passed away surrounded by family and friends on Friday, August 2, 2019 at the age of fifty-seven. While born with the many challenges of Down syndrome, Tony lived a largely happy and full life, bringing smiles to those he met and leaving behind many wonderful memories. He personified the words of L’Arche founder Jean Vanier, who wrote: “The great thing about people with intellectual disabilities is that they are not people who discuss philosophy. What they want is fun and laughter, to do things together and fool around.” So read Tony’s obituary in August of this year.
Over his life, he moved from his family’s care to a private facility to a large provincial facility and finally to a wonderful group home established and run by the Trail Association for Community Living (TACL). Over the decades, our long-widowed mother worried constantly, and often times agonizingly, about what was best for him. Where would he be happiest? What services would he need at each stage of his life? What did the endless stream of new provincial government rules and programs mean? And, most recently, who would care for him when she passed away, as she did three years ago?
Raising important questions
As we assumed more of the custodial role, Tony’s siblings and his incredibly loyal caregivers spent increasing amounts of time thinking about his life and how it had affected, and at times challenged, so many people around him. As he started to age quickly over the past few months, with the onset of progressive dementia and a deterioration of his health in general, the level of care grew significantly. Tony required the services of nurses, public health workers and palliative volunteers. While everyone rallied beautifully and no needs were left unmet, we were all left with many questions beyond those of the final days and then passing of a loved one.
The most obvious revolved around his personal care. How much did he understand what was happening as the combination of Down syndrome and progressive dementia made assessments difficult? Had we done enough to make him comfortable? Did we make the right decisions about keeping him at the group home until the end? I am confident that the answers are positive thanks to the unwavering involvement of his caregivers, his house mates and medical personnel. But not every person with intellectual disabilities has that kind of support network. Many now live well past their parents and have no extended family to pitch in. Not every community has the kind of community support as is the case in Trail.
My questioning has now turned to broader questions. As a society, are we ready to take on the growing number of elderly people that happen to have Down syndrome or other challenges? Have we put in place the kind of policies and programs to support, and more importantly encourage, keeping such adults whose health is failing in comfortable and loving environments rather than intensive and palliative care wards in hospitals?
This line of questioning brought me back full circle to the group homes themselves. Have we prepared group home residents for the passing of someone they may have shared a home with for years? Many can’t communicate in ways that are easily understood. But, as I watched Tony’s house mates in the days following his death, there was no doubt that they understood and felt deeply that something dramatic had happened.
And what about the staff and caregivers? Are they prepared to support people in palliative situations and ultimately passing in their own homes? Again, we were fortunate that the staff around Tony had made it clear that they wanted to see it through until the end. Many reorganized personal times to be with him, and us, because of a deep and heartfelt love and concern for not only my brother, but all the residents. It was hard, but the best in people shone through every day. Tony and our family were lucky in so many ways, but not every situation is the same.
Finding opportunity in challenges
So how can we be sure that every person with intellectual disabilities can progress to the later stages of their lives with dignity and comfort? Based on my experience, three ways come to mind:
The first is that community living organisations and their boards of directors be given the support – financial, policy and programmatic – to understand, plan for and implement the requirements of elderly and palliative persons with intellectual disabilities. I believe this need will only grow in importance as people with intellectual disabilities are living longer and, in many cases, outliving their parents. In effect community living associations are becoming the families, not just trustees, of their residents.
A second way is that sister organisations, such as palliative and hospice not-for-profits and their staff, be encouraged and resourced to work directly with the group home community. These people are already taking on very difficult, some would say heroic, work. But the situations of people with disabilities are different as they can often not articulate what is happening or what they are feeling to those around them.
Finally, staff working in group homes should receive the necessary training and recognition to deal with end-of-life situations. Every day at work they strive to make the lives of their charges comfortable, so having to adjust to a sudden change as dramatic as a death is not really “in the job description.”
The passing of a loved one is never easy, and one is always left with many doubts and unanswered questions. The same is true for the passing of a loved one who faced many challenges in his life, but also many joys. Our recent experience was full of tears, doubts, hugs, sleepless nights and even a few smiles, but above all it was dignified, just as Tony’s life had been.
A note from CLBC:
The CLBC Strategy on Aging was developed in 2013 in response to the challenges and opportunities associated with supporting adults with developmental disabilities who are growing older in our communities. The work began with leadership of the Surrey Delta White Rock Community Council. The Strategy was developed with significant input from Community Councils and other stakeholders across the province.
Through the strategy, CLBC, in collaboration with partners in community, is working to create awareness and understanding of what people need to age with safety and dignity.
Work has included the development of numerous resources that are listed below, events to explore successful practices and promotion of the resources. CLBC also implemented a change in practice to ensure that staff are checking in with older adults at a minimum at 55 years and then again at 63 years, just prior to the transition to Old Age Security from BC Disability Assistance. Most recently, CLBC has refined and improved its ability to forecast future demographics to enable it to better predict future service requirements.
CLBC knows that the work to ensure that all individuals have an opportunity to age with dignity and quality of life is not complete and will be considering work in the next year. If you have any questions or comments please send them to CLBCInfo@gov.bc.ca with “aging work” in the subject line.
You can read the CLBC Strategy on Aging here, and find links to resources below that support people to help support people as they age:
- Aware Share Care Website – This site provides helpful healthcare tips and resources to assist in better planning for healthy aging.
- Looking Forward to the Future – This storybook shows the different ways people have created positive outcomes for individuals with developmental disabilities as they age.
- Aging with a Developmental Disability – This planning guide provides information for families and others who support adults with developmental disabilities who are getting older.
- Aging Parents / Caregivers Pamphlet – This pamphlet informs aging parents and caregivers of the need to, and benefits of, making a plan with their family member.