Like sun shining when the rain is falling were the two nurses on duty at Huron Residential Hospice in October as they described how Huron and Perth’s new palliative care home is a place to live life until death comes.
Lindsay Nuhn, a full-time registered nurse at Huron Hospice and Morgan Ovecka, full-time registered practical nurse had tears in their eyes even as they say this is the best job they have ever had.
“The little moments here are big moments and that’s what makes them so special,” says Morgan, 23 of Teeswater. Her past experience was in nursing homes where she felt residents did not get the attention they desire. “Here, that is possible.”
The average stay of the 22 families which have made use of Huron Residential Hospice on Highway 8 east of Clinton is 11 days. In that time, this former palatial home turned hospice, becomes a place where families can spend time together, remembering the good times, sharing meals, going on walks and enjoying the peacefulness of a large sitting room with its magnificent wall-sized window.
“Residential hospice is a place to celebrate life and embrace quality-of-life in your final days, with 24/7 expert care, at no cost, in an environment that feels like home,” is how the website describes it.
The former Kootstra home was bought by Huron Hospice in 2017 because it was built in a way that suited the needs of the living and dying very well. It’s quiet. Peaceful. Beautiful and spacious. There is room to die without the institutional sounds, smells and looks of traditional hospitals. Yet there is comfort for families knowing trained nurses are there 24 hours a day.
“Everyone would like for their loved one to be able to die at home,” says Tracy Hartley of Goderich, who has been at Huron Hospice daily with her sister Shelley Riendeau of Kincardine. They are taking care of their mother, who was living in a nursing home, fell, and then developed end-stage renal failure.
The sisters arrive around 10 in the morning and stay until eight or nine at night.
“I’m a nurse and Shelley is a Personal Support Worker (PSW) and it was really important to us that we give personal care to our mother. They let us do that here, no questions asked,” says Tracy. “The nurses listen to us and trust us with how our mother is feeling and that is so nice ... to not have to fight for what our mother needs.”
The morning of the interview, Tracy said their mother had just days left. They spend the day by her bedside, taking coffee breaks in the living room, enjoying the muffins and treats brought in daily by volunteers. They leave at night to rest and spend time with their spouses and children, knowing their mom is well cared for.
This particular morning, they were washing their mother and though largely unable to speak, their mother looked up at them, smiled, and called them “her little helpers.”
Both sisters tear up at this big/little moment and are so thankful they have these last days with their mom.
“We are here because of the kind of mom she has been to us our entire lives. If the tables were turned, she would be here day after day too,” says Shelley.
It’s for these reasons Huron Hospice Volunteer Service began looking for a home to offer palliative care in a residential setting says Kathy O’Reilly, the residential manager. The Service had been active for over 25 years and looking for a home when Richard and Rachel Kootstra contacted them to consider their home. Aging and ready to move to town, the couple was feeling emotional but excited about the role of their new home.
“On the one hand it feels like we are giving something back, but at the same time it feels a little bittersweet because we are walking out of this place that I built for Rachel and I. I will get over that and we are going to build another place and life goes on,” Kootstra told The Goderich Signal Star in July 2017. “There are stages in life – you think of one thing [that your life will be like and where you will be] and then another stage you have another purpose or mission. I am very happy that this Hospice group is coming into this place. I’m really happy about that.”
The home is all on one floor for excellent accessibility. Bedrooms are large with decorative ceilings, something O’Reilly was very excited about.
“One of the worst things is spending your last days looking up at a dull, white ceiling,” she said.
While touring the facility, Kathy points out the fold-out couches in most of the rooms, allowing family members to sleep overnight. The bathroom is big and bright, featuring medical equipment that makes bathing and showering residents possible. The nurses’ station is tiny but adequate. Very few renovations were required to the house beyond wider doorways and door ramps. However, a costly fire suppression system (costing over $300,000) was required by the Ministry of Health before the facility could open.
For families, staff and management of Huron Hospice there have been no complaints about the facility and the care. Where there is discussion, it is about funding. While in the grand scheme, a residential hospice can save the health care system money, it still requires significant operational funds.
Kathy explained that every hospice in Ontario (Huron Residential Hospice is now the 48th hospice facility in the province and the 16th in a rural community) receives $105,000 per bed. Huron Hospice has four beds so the government provides just under half of the facilities’ operating costs. The remainder – over $400,000 – comes from community support and needs to be raised annually.
With future plans to build an addition to create a seven-bed facility, ministry shares would cover salaries.
Fundraising is a constant endeavour and Huron Hospice is just about to launch its “One thousand a day” campaign with the goal to find 450 people are willing to write a $1,000 cheque annually for a tax receipt and a belief that when a loved one’s medical condition is terminal, and needs specialized care, they can live life fully until the very end.
This is very near to Kathy’s heart. The oldest of eight siblings, Kathy has lost two brothers in the last two years. Both died in hospital.
“We were all in a crowded room and there is no place to sit,” recalls Kathy. “This place brings a different option. It is home-like, a comfortable environment, where you can watch television, make soup and go for a walk on the trails. My brothers would have loved to be here.”
The need for home and the ability to maintain relationship is what nurses Lindsay and Morgan want for all the residents who come to Huron Hospice.
“What we provide to residents and families is for them to continue their relationship as mother and daughter, or husband and wife, rather than just being a caregiver,” explained Lindsay. “At home, it’s necessary for family members to provide most of the care which can lead to caregiver burnout. Here, we give them the opportunity to go back to their original relationship.”
She thinks of a wife who at the end, was able to lay her head beside her husband, hold his hand, and enjoy the time they had left together rather than be consumed by her husband’s care.
Death is sad. Definitely it is sad. However, there are more happy moments than sad ones, say the nurses.
When families bring photographs and share stories, the nurses get to know the person behind the patient. “They had a whole life before they got here. It’s good to remember that,” says Lindsay.
Also, they get a chance to love and pamper the residents in their final days.
“We had one woman who was getting agitated so we brought her a cup of tea and moved her bed to the window so she could see outside. She calmed down and exclaimed how green the grass was. It had been so long since she’d seen grass.”
Another patient was treated to a good foot rub and had her hair washed in bed.
“She told us that she didn’t know how she got here, and wasn’t used to this way of living, but she sure did like it!” remembers Morgan.
Nearing the very end, it can get hard. Some residents hang on. They just aren’t ready to let go and sometimes they fight to live for reasons their families do not understand. “It can be hard to watch,” admits Morgan. “But when they do go, they are at peace and we are at peace for their release.”
Trained for these end moments, and having taken courses on grief and bereavement, the nurses are prepared to support the family.
Calm under pressure, Lindsay knows she has found her calling here. While tears come freely as she thinks of the residents she has had to say goodbye to, she feels it such a privilege to be part of their lives.
“We cry a lot because it is meaningful,” adds Lindsay.
When it gets especially hard, she says she’ll walk out to the car with Morgan, share a hug and they will reassure each other that “we did a good job today.”
Morgan says she wants people to know that Huron Hospice is not a place to die, it is a place to live. “Our aim is to fill residents’ last wishes and make them happier. Not just for the patient but for the families.”
She thinks of one couple who always went out to eat Chinese for the wife’s birthday. The husband, who by this time could not eat, was encouraged to take a bite, chew to enjoy the flavour and then spit it out.
“They were able to celebrate this last tradition together. He passed the next day,” remembers Morgan.
There is a pause, as the nurses recall these big/little moments. More tears. Yet, sitting at the table, with cups of coffee in their hands, knowing their patients are comfortable, the sisters mentioned earlier making a snack in the kitchen, Morgan looks around and concludes, “I don’t know how it could be better than this.” ◊
the home who can provide the care needed if something happens.
Once he gets to know the person he is visiting – so far all men – they usually open up and the conversation flows. “One wife said to me how much better her husband was after he talks to you,” said West.
The husband may tell a story the wife has already heard 10 times. West can listen with interest hearing it for the first time.
People close to death may be avoided by those feeling uncomfortable around someone dying. Keeping those in palliative care part of the life going on around them is critical in making the dying process easier for them, said West.
“They (clients) don’t want to be forced into isolation.”
Anger is commonly described as one of five natural reactions people go through when told they have only a short time to live.
“We (volunteers) are introduced to clients after that stage,” said West who also visits people with Alzheimer’s and dementia. He is an active member with the Alzheimer’s Society of Perth County.
Volunteers are first introduced to a client by the coordinator of the hospice services. There is an awareness that some people may not want a stranger in their home.
On the volunteer’s part, they are sometimes introduced into homes which are not “a glorious situation,” said West.
He has chosen to visit with one patient at a time but marvels at how the women in his group of palliative care givers have the energy and emotional capacity to visit several people at a time.
He said getting to know the other family members of those dying – even the dog – and being with them at the funeral is for him the most difficult part of palliative care.
Speech momentarily fails him and his voice falters as he silently recalls those situations. “I am an emotional guy,” he finally continues.
During visits the conversations don’t usually centre around the disease the person is dying from unless the client brings it up, said West. Those conversations are best left to the person’s doctor.
Instead the conversation is steered more toward events of the day.
Five years ago, West, 66, encouraged fellow Stratford Agriculture Society member Murray Schlotzhauer, 75, to become a palliative care volunteer.
They have much in common – both farmers, both outgoing personalities, both former Citizens of the Year award winners in Stratford. But while West’s emotions are never far below the surface, Schlotzhauer believes it is important to not show emotion while providing support for a dying person.
“I don’t shed a tear,” said Schlotzhauer.
However, he continues to keep close contact with families he has helped deal with a death. This has included taking three widowed women with him and his wife on an ocean cruise.
Constantly involved with community events, Schlotzhauer often picks up family members he has helped and takes them to dances or community dinners. His wife, Heather, has become involved with visits and keeping grieving women connected to life’s activities around them.
“You have to be the type of person who likes to visit,” said Schlotzhauer.
His visits tend to go beyond the two hours with the talk lively. One client, who was a match for Schlotzhauer’s gift for gab, was so tired after their weekly visits that the family asked him to stop coming because the husband was so tired out after each visit.
Schlotzhauer also chose to visit only one client at a time. He has been visiting the same person in Mitchell for the past two years, during which time that person had to also deal with the unexpected death of a daughter.
“I have found out a whole lot more about Parkinson’s disease,” said Schlotzhauer, reflecting on how volunteering has broadened his horizons.
“Palliative care is not really a medicine,” said West in describing its role in the dying process.
“But it is everything else that goes along with it.” ◊