Personal Stories of LTC Challenges are an Important Resource

The future of long-term senior’s care in Alberta has to change, and COVID-19 has made this abundantly clear. What is less clear, for many, is how to go about these changes. Opinions are all over the map: some people feel that we opened the province too soon. Some feel that we didn’t need to lock down at all. One thing we can all agree on is that seniors have had particular challenges with the pandemic and, once again, many were left out of the conversation when it came to their own protection and care.

Elizabeth Hertz, a business owner and entrepreneur in Alberta, was kind enough to share her experience. Elizabeth’s mother is 102 and in a wheelchair, residing at a larger institutional style facilty. When COVID-19 hit, the facility locked down to the point where the residents could not leave their rooms. Visits were allowed – but only if the visitors stayed outside and visited on the front lawn. Winter weather and wet and chilly spring prevented visiting.

Elizabeth’s mother’s dementia worsened significantly and she strongly believes it was due to extreme isolation.

“It’s like being put in solitary confinement,” Elizabeth shares. “Because she is in a wheelchair, she doesn’t have the ability to go for walks on her own. She was not the only one affected. I’ve seen a lot of seniors suffer. We (those not in care) can make decisions on how to protect ourselves. We have the freedom to choose and to go out, but they didn’t. They were robbed of their choice.”

Elizabeth’s Mom was able to get out of her wheelchair and navigate her suite with a walker – and on one occasion, she used it to escape her room and go outside. With limited mobility this was a dangerous maneuver, but she was determined to escape and was in quite a state. The staff, with Elizabeth on the phone, had great difficulty coaxing her back to her room. While Elizabeth doesn’t condone this heroic escape attempt, she does completely understand why her mother took such drastic action.

“She had enough. She wanted to come home. Those seniors had lost their quality of life and their ability to make their own choices.”

At this time, many family members were calling the facility and AHS voicing their concerns. Elizabeth called Patient Relations and the AHS nurse to discuss patient mental health and eventually her Mom’s healthcare nurse was able to find some solutions. Yet, repeated attempts to communicate with the facility, patient health, and labour relations was an exercise in futility.

“At first everyone had a different opinion on what they would say,” she shares. “But then after some time they all had a similar response across the board, without any of them admitting that there was a problem. This caused an uprising of families with loved ones in care; and I’m upset about the way this was handled. The bottom line is, extreme isolation affected the seniors’ quality of life. The facility did its best, but they could have done better. They should never have done a one-size-fits-all solution. They should have looked at the scenarios in each care home and accommodated the specific situations. While they follow Alberta Health’s recommendations, they can also choose which recommendations to follow.”

Elizabeth’s story is vitally important as all long-term care providers make plans going forward. What stands out for me is what I’ve been saying all along – seniors should not be left out of the conversation, and not all long-term care homes are same. Is COVID-19 aggressive and dangerous to the elderly? Yes. As a society, did we need to take action? Yes. But did we need to continue with a full lockdown regardless of how each facility and business is operated? No. Residential-style private care, like the community residences at ExquisiCare, have not had issues with the pandemic – during the height of the transmission nor the fallout after. The mental and physical health issues some seniors in care have experienced could have been mitigated with better pre-and mid-pandemic planning, and better options for seniors to choose their style of care (public, private, homecare, etc.).

There has been progress. Change is coming and that gives me hope, but how do we justify opening casinos because people can choose to attend and gamble while telling our seniors that they have to stay in their rooms? Clearly, there is much more work to be done.

Balancing the needs and protection of seniors includes their right to human connection and interaction, and their right to accept risk. (Look for next month’s blog about risk!) It’s a challenge to achieve this in a pandemic, but it’s not impossible. As government and care workers discuss the path forward, we need to listen to the stories of people like Elizabeth. We need to include seniors in the conversation. We need to stop making decisions for seniors and ask what they need. Then we can structure our policies around actual need and wants, not opinions.

How is Elizabeth’s mother doing now?

At one point, Elizabeth’s mom had quit eating and taking her meds, so in accordance with the guidelines the facility deemed her daughter as an “essential service.” She has become a caretaker, allowed on site to visit her mother and bring her food.

“It has made quite a difference,” Elizabeth explains. “She is still suffering from the isolation she had to go through, however. She has lost weight. The staff have been wonderfully accommodating to us, and are dedicated to taking care of their residents, but I do not see extra staff there yet. They have started letting residents eat downstairs twice a week. They sit at a large table by themselves. This situation has been, and continues to be, heartbreaking.”

Heartbreaking indeed. It’s time to do better.