seniors | From The Heart

How the Personal Care Home Tried to Steal Christmas and What We Can Learn From It

Photo by Karolina Grabowska on Pexels.com

Happy belated holidays to all my readers. I have several blogs that I’ve started over the last two weeks but haven’t had time to finish. As the holidays fast approached, life got busier. I’m sure many of you can relate to that. I will post some of my partially written blogs next week after tweaking them a little to reflect the post-date publishing.

Christmas is my favourite holiday but it’s also a hectic time. Shopping, baking, cleaning, celebrating, wrapping, planning, preparing, you get the gist. Add freezing winter temperatures, snowstorms, shovelling and spending an extra ten minutes getting dressed to head out and suddenly, the minutes, hours and days just fly by in a frigid and frenzied seasonal blur.

This month has been a complete gong show around here, especially as we got closer to the holidays. In between normal life obligations and responsibilities, I was tasked with planning our family Christmas gathering. Having two loved ones in a care home added to the challenge. We’re lucky they reside in the same facility. It would be even more difficult if they were in two different places.

Last Christmas

The past few years have been difficult. Between the pandemic and my mom and sister’s health issues, getting together as a family was not possible. Last year, my mom and sister were in two different hospitals during the holidays. Our Christmas celebration was done over a group Facetime session.

I brought Mom Christmas dinner and sat with her at the hospital while my sister’s husband sat with her at a different hospital where she was admitted. My brother and his family were nestled safely in their own home enjoying their own turkey dinner. We collectively set a time to do a group Facetime chat and for about 15 minutes, we celebrated the holiday virtually through the smallish screens on our phones. It was a unique holiday celebration, but we managed to make the most of it.

There’s no way we could have known just how different life would be a year later.

Because the last few years have been so challenging and my sister has missed out on every holiday and special event the last nearly three years, getting together this year was especially important for all of us. To have our family dinner, we/I had to work around special circumstances to make it happen. A wheelchair accessible location, transportation, medical care, and extra bundling to protect against the cold temperatures were the biggest concerns.

After weeks of discussions and planning, and Christmas only days away, all the arrangements were finally done. All that was left was waiting for the big day to arrive The whole family, especially my mom and sister, were excited about the upcoming festivities.

The Care Home Tried to Steal Christmas

As the last few days before Christmas were quickly winding down, the personal care home dropped the hammer. It started with a whispered rumour three days before Christmas that was confirmed later that day when I spoke with the director.

On December 22, my brother-in-law was told by one of the nurses at the care home that all resident leaves were suspended until further notice so no one could go out for Christmas. He told my sister who told my mom who quickly called me. I called the poor nurse who had the unlucky task of informing all families that called what little information she knew about the suspension.

No official notice or email was sent to inform families, many of whom who had already made plans to celebrate the festive season with their loved ones outside of the nursing home. Nor was it mentioned to me on December 19 when I called the care home and spoke to one of the nursing coordinators about our upcoming Christmas Day plans.

The director confirmed the rumour when I spoke with her later that day. After a lengthy discussion, she stated she couldn’t stop my mom and from going out with family but if they did leave the care home, there would be consequences. My mom and sister would have to quarantine in their rooms for 14 days after.

My mom and sister were devastated. My mom cried. They were looking forward to being with family for Christmas and now everything was in jeopardy. The thought that they would be missing another holiday was emotionally crushing. But the two had a difficult decision to make, miss Christmas or face staying in their room away from everyone for 14 days because they left the facility for a few hours.

I can’t and will never make decision for either relative, especially one like this. They were put in a difficult position that, to them felt like a lose-lose. Collectively, we reassured both Mom and Sister that we as a family fully supported whatever decision the two of them made. We were more than ready and willing to rearrange our family plans to meet their needs so they would still be with family on Christmas day.

After much thought and conversations, both Mom and sister decided they wanted to go for dinner. They want to be with their family so both are willing to quarantine for the 14 days afterwards. I promised to spend more time with them, as have other family members. We have all reassured them, they will not be alone during their quarantine period.

An official notice about the suspension was finally sent to all family members via email on December 23, leaving many families frustrated and frantically rearranging their holiday plans at the last minute.

So, after all the challenges, the home’s last minute, not communicated plan to restrict all leaves, our family Christmas dinner was a go. We took every precaution to keep my mom and sister safe and minimize every possible risk of getting sick.

Christmas Day

We had our Christmas dinner and it was, as holiday dinners go, organized chaos, busy, fun, merry, and most of all, wonderful. We laughed a lot, ate delicious food, and enjoyed a joyful and memorable evening together as a family. It was a very Merry Christmas for all and for all of us, a good night.

For my mom and sister, who are now in their quarantine period, going for Christmas dinner with their family was worth the consequence.

Closing Thoughts

There’s no question, the decision to suspend resident leaves was a very poorly planned and even more poorly communicated by the PCH. The suspension of resident leaves had nothing to do with the health authority’s policies. It was the volunteer boards own decision, and it was made without input from most residents or their families. Staff, residents and families were not informed in a clear or open manner. When the news was finally broadcast, only a few people were aware. The nursing staff were left to deal with the phone calls and complaints by surprised and frustrated family.

The care home’s decision to stop resident’s from going out during the holidays, a time that can already be difficult for some, was, while made with good intentions, mentally and emotionally harmful to the many residents who were eagerly anticipating spending the holidays with their families. It was also an added stress for the many families who were forced to readjust their plans at the last minute to accommodate the care home’s rule.

Living in a personal care home is not easy, especially during the holidays. Seniors who reside in PCHs lose their independence and freedom to participate in the familiar routines and traditions that have been part of their holiday celebrations for many years.

I am not opposed to protecting seniors. Having two loved ones in a care home, I am very well aware of how vulnerable and fragile their health is. Illnesses that inconvenience us can be life threatening for my mom, sister, and other adults residing in PCHs. I appreciate the hard work and efforts made to keep those residing in care homes healthy and safe.

But there must be balance between protecting the residents in a care home and allowing seniors to live their lives as best they can. A one-size-fits-all, all or nothing approach in decision making has and will never work. Creating policies and rules that only focus on the physical wellbeing while ignoring the emotional and mental wellbeing of residents can be more damaging to their health, especially during special occasions and holidays.

In the situation we faced as a family and community with this care home, the lack of communication was more than just an oversight or inconvenience. It was inconsiderate and disrespectful to all the residents and their families. My hope is for the staff and board to learn from the mistake so we can all help our senior loved ones have a high quality and enjoyable life in the nursing h

9 Key Issues Discussed in a Focus Group on Seniors’ Community and Personal Care Home Care

Posted on October 1 by Admin

Last week I had the pleasure of participating in a focus group organized on behalf of the provincial government to discuss seniors’ care. The provincial government has created a new Seniors and Long-Term Care department to address the current care system of our aging population and develop new strategies to enable seniors to remain in their own home and community for as long as possible.

I received the invitation through my mom’s PCH and was delighted to attend. As an advocate for seniors’ care, I was looking forward to offering my feedback, but I was also interested in hearing what others had to say.

Our current system forces seniors who can no longer live an independently into institutionalized facilities where they are likely to share a room with another resident. While I appreciate the value and need for personal care home facilities, I believe panelling and placing people into a care home should be based on their health care needs, not age based.

There were 11 of us in total, including the two facilitators. Those who attended ranged from directors of senior’s organizations, managers of an assisted living centre, former healthcare professionals and family members of residents who resided in PCHs. We discussed many issues with the current long-term community and facility care system as well as ideas we believed would help in the future planning for seniors’ care in my province.

Currently, our province has an all or nothing approach to aging. If you can live independently, you can stay in your own home, but if you can’t, you are institutionalized into a personal care home. Seniors, with the help of their family members can choose one place to call their permanent place. However, due to long waiting lists, seniors are placed in what is referred to as an interim home while waiting for a room in their permanent place. The individual does not have a choice where they go. They are admitted into the first place that has a bed available. This approach doesn’t work for numerous reasons.

Concerns Addressed

As a group, we shared many similar concerns and what we saw as problems with the current system. They can be broken into 2 categories and include:

Personal Care Homes:
- For-profit homecare facilities that prioritize profit over quality care
- Improperly trained staff
- Lack of beds to meet the needs, room sharing
- Government standards that are not enforced in for profit care homes
Community:
- Inadequate homecare servicesLack of community based transportation servicesNegative societal approach to agingLack of resources in rural areas, for example, medical services, home care, housing
- Lack our resources and support systems to help seniors maintain their social, physical and personal needs

For-Profit Care Homes

Private, for-profit care homes were a serious concern for all of us. Because provincial and territorial governments regulate how much seniors are charged to live in personal care homes, for-profit places cannot set their own fees. This means, they have to find other ways to make a profit at the expense of the staff and residents.

According to one participant, profit earning care homes are also not regulated or monitored by the same standards as government run homes are so many problems that occur in profitable facilities, happen because the standards are lower.

Lack of Beds and Space

There are more seniors panelled for care homes than there are beds available. This means there are long wait periods to get into a facility and, when a senior is finally moved into to PCH, it’s usually not the place of choice and they are often forced to share a room. Those living in the community, whether urban or rural, face longer wait times because hospital patients have first priority. For those living in the community who do need 24-hour medical care, the extended wait times can create unsafe situations for the senior and increase stress for the families.

Trained and Qualified Staff

Another concern raised was improperly trained and paid staff. Again, profit-making companies were targeted for not hiring enough properly trained staff and paying their employees lower wages. During my years working for personal care homes and home care agencies, I also noticed salaries for profit care home staff were considerably lower than salaries for the same position in government run homes. I saw firsthand how properly trained and paid staff made a significant difference in the type of care seniors received.

Ageism

One of the first issues I brought up was how society views of aging and seniors. Historically, getting older has always been viewed negatively and older people have less value in society than younger people. This ageist opinion has been the foundation for many services, opportunities, healthcare, and resources developed for older adults. There is a clear difference in the type of services and care offered to seniors when they are treated as valued members of the community as opposed to when they are not. There are many organizations and housing projects opening that recognize, value, and cater to seniors but we need more.

Rural Concerns

Two participants live in rural communities. They voiced many concerns about lack of housing, transportation, and health care services available to seniors. This creates many challenges and problems for aging adults who left in dire situations or have to leave their community to access the services and housing they need. It also affects family who must travel further distances to see their loved ones. The two focus group members want to see more services in rural areas, so health care and housing are more accessible.

Community-Based Transportation Services

Before the pandemic, many housing and community-based agencies offered transportation services to seniors to they could shop, run errands and attend social functions. When Mom lived in her apartment, she enjoyed taking the weekly van to the nearby grocery store. Not only was it convenient and affordable, but it also allowed her to maintain her independence. The transportation services also created a regular social event for its riders. Mom and the other residents in her building enjoyed the weekly chats and developed friendships during their travels.

When the pandemic started, transportation operations stopped. Many have never resumed, creating challenges for many seniors who must find alternative ways to go from place to place. In rural areas, this becomes even more challenging because there are less public transportation options available.

Lack of Community Based Resources and Supports for Seniors

As a group, it was collectively agreed that communities still lack supports and organizations to help seniors live independently while ensuring their daily needs are met. This continues to create many barriers for older adults to stay in their own homes and communities. In this province community-based supports are available for many vulnerable populations, so they are not institutionalized, but it is still lacking significantly for seniors.

Inadequate Community Based Home Care Services

While there is home care available, services are limited to a maximum four visits per day. Staff shortages, lack of resources, high community needs, weather and absenteeism creates a very unreliable system that doesn’t adequately meet seniors’ needs and puts a lot of pressure on families to fill in when home care doesn’t arrive or provide the needed services.

There are many non-profit organizations to provide 24-hour care and health services for other vulnerable populations in their home and community, there are no similar services for seniors in this province. Having similar services to cater to senior’s needs would reduce the strain on the government run system and allow more seniors to live in their own home and community.

Positive Qualities of the Current System

It was easy as a group to find multiple problems with the community-based and personal care home-based care services that are currently in place for seniors. The issues we all raised were similar, abundant, and affected all areas of seniors healthy living in their own homes and community. When asked, it was difficult for any of us to find positive factors to the current system. When asked, no one could find an answer.

Final Thoughts

I was happy to be invited to participate in this group. Not only did I had a chance to voice my concerns and views of the current system, I enjoyed listening to what others had to say. All the points discussed were valued concerns that will hopefully be used to create a better community-based health and home care system so our aging relatives can continue to live productive and valued lives in their own homes and communities for as long as possible.

I’ll cover each issue in its own blog post in the coming days and weeks. I would also like to hear from you, my readers. What concerns do you have regarding your area’s current services for seniors? Are there any positive features to the services offered? What changes, if any, would you like to see?

Age vs Need in Personal Care Home Admissions, A Personal Experience

Posted on September 19 by Admin

I got a phone call Friday from my mom’s personal care home to inform me that my sister has now been accepted and would be moving into the facility on Monday. In a couple of days, and within the span of less than six months, we will have two family members living in the same care home.

The difference between the two situations is very notable. Mom had a stroke last December. It affected her right side as well as her short term and work memory. Last March, the medical staff at the rehab hospital she was admitted to deemed it mandatory that Mom spend the rest of her life in a personal care home. Their rationale was that her short and working memory impairments made it too unsafe for her to live in her apartment without 24-hour supervision.

To give some history, six weeks after her stroke, Mom spent ten weeks at stroke rehab hospital where she participated in regular physical, occupational and speech therapy sessions. She learned to walk again using a walker, was working on improving her memory impairments and was strengthening the right side of her body while learning to write with and use her left hand more.

Yet, despite surpassing staff expectations with her improvements and accomplishments, the medical team informed us during the family planning meeting that Mom needed to be panelled into a personal care home. The professionals stated that her working and short-term memory loss made it impossible for Mom to live safely on her own.

As a family, we were devastated. We had fully expected Mom to go back to her own apartment and were planning the post-hospital supports that she would need. After we were told that she would need to move into a care home, we still tried to come up with alternative options so Mom could remain in her apartment. However, we were always met with resistance and refusal by the medical team. During one conversation with the social worker, I was told that I was not facing reality. She informed me that I needed to accept their decision that Mom needed to be in a care home because there was no other alternative.

I cried often. Having worked in personal care homes during my late teens and early 20s, I had vowed that Mom would never live in a care home. And now, several years later, I was helpless to stop it.

It’s also extremely hard on her grandsons. To know that they could never visit Grandma in her home again was difficult to accept. As grateful as we are that Mom is still with us, we mourn the life she has lost. As a family, we used to spend every Friday night at Mom’s. It was a ritual that we have been doing for years. But that’s another blog for another day.

My sister’s situation is different. Decades of poor lifestyle and dietary choices have caught up with her. In March 2020, my sister had her first stroke. Since then, she has had nine strokes. She also has Congestive Heart Failure and is in the early stages of renal failure and will eventually need dialysis.

There has been an ongoing pattern since her first stroke in March 2020. She’ll spend several months in a hospital. Once her health is stabilized, hospital staff discharge her home with homecare. She’s home for less than two months before ending up in a hospital again because she’s had another stroke or other life-threatening incident. Every time she is admitted, it is to a different hospital with different staff looking at different medical conditions and medications who then prescribe different treatments and medication changes. Once her immediate health needs are stable, she is discharged home once again. While these measures have resulted in short term stabilization, her health has steadily declined with each stroke and hospital admission.

This past spring, two years after this ordeal started, my sister had her eighth stroke while at home. She spent four months in the hospital. During her stay, she had her nineth stroke. The damage is very notable and permanent. She has limited mobility and requires full assistance for all her personal care including dressing, washing, hair and teeth-brushing and eating. She has difficulty speaking, memory and critical thinking impairments and is partially blind. She cannot change positions in bed, sit up, get out of bed, stand, or take a step without assistance. She requires a wheelchair to get around.

With all her ongoing health issues, my sister needs to be in a facility where she has 24-hour medical care. So during her family planning meeting during her last hospital stay prior, I spoke openly about her needs and requirements. Don’t get me wrong, I don’t want my sister in a personal care home and if there was another option, I would have been in full support of her living in the community instead of a care home. After all, she is only in her mid 50’s, she’s young. But we have been living through this for well over two years. The current plan does not work. It has failed her every time. My sister, myself and the family realize that for my sister to live as long as possible and have the highest quality of life, it can only happen if she is in a place where she has round-the-clock care.

Despite my input and knowledge, the healthcare team at the hospital was determined my sister was going home to the same care plan. They had no interest in listening to our concerns and fully expected her family and husband to attend to all her needs. The social worker even asked why I couldn’t go to my sister’s place every day to help her. The fact that I have a full time job and my own home and family to look after meant little.

After my sister was discharged from the hospital, she lasted four days at home before being rushed to the hospital again. So, after two and half years of this roller coaster, my sister has been panelled for a personal care home. The social worker who was part of the health care team that was adamant that my sister go home received an unpleasant voicemail message from me.

There are very clear differences between my mom’s situation vs my sister’s. Mom was panelled immediately but it took well over two years and near death for the healthcare professionals to panel my sister. My sister’s physical and medical needs have always been greater than my moms. The other significant difference is age. Mom is 20 years older than her daughter.

Our family has experienced firsthand the system’s ageism. Despite my sister’s more serious medical needs, the healthcare professionals would not admit that she needed more care than what was offered in the community. This is a very stark contrast to the care and planning Mom received. In her case, the healthcare team saw a personal care home admission as her only option and refused to discuss other community-based alternatives. According to the Canadian Institute for Health Information, one in nine seniors living in personal care homes could have remained in their own home with the right supports system. As a family, we fully believe Mom was the one in nine.