On the fourth Tuesday of every month at 11:00 a.m. there’s a meeting on Colleen’s work calendar that she looks forward to. That’s when she hears stories of other people going through caregiving situations like she is, which helps her feel that she’s not alone. It’s the time when she learns what has worked for her colleagues in their caregiving experiences that she might learn from. And it’s a time when she can bring up an issue that she and her husband are facing and get ideas from her fellow employees on how to handle it. At this time each month, Colleen attends the Alzheimer’s and Other Dementias Caregiver Support Group tele-conference meeting that is supported by her employer, a Fortune 100 company. The meeting is a tele-conference because the company has employees across the U.S.
In 2016, the 15.9 million family and other unpaid caregivers of people with Alzheimer’s and other dementias provided an estimated 18.2 billion hours of unpaid care. [2017 Alzheimer’s Disease Facts and Figures.] The cost to caregivers includes loss of their income and their physical and mental health. These stressors also impact the workplaces of these caregivers, including loss of productivity, increased absenteeism and increases in health care costs. These ultimately affect a company’s bottom line, so investing in caregiving benefits, programs and services is beginning to get some traction, according to a survey of 129 mostly large employers throughout the U.S. conducted earlier this year by the Northeast Business Group on Health (NEBGH) in collaboration with AARP. Findings were reported in a July 2017 report, Caregiving and the Workplace: Employer Benchmarking Survey.
For Colleen, the time provided monthly at work by her company to be part of this support group has proven to be helpful. And for 2018, the company just announced that additional support to caregivers will be available through two weeks of paid Caregiver Leave.
Colleen has been a caregiver for her mother in-law for a few years. Her mother in-law, Chris, has a form of dementia that is similar to Alzheimer’s disease called frontal temporal dementia with aphasia. What this means is that she suffers from short-term memory loss and has significant language issues, including not being able to remember some words or understand their meaning. Both aspects of Chris’ illness are getting progressively worse over time. Colleen has been attending the one-hour support group each month for almost two years. She has gained emotional support from being in the group. In addition, she’s received advice from her co-workers on specific situations facing she and her husband.
In early 2016 Colleen and her husband Matt had to move Chris into assisted living because she was no longer able to live by herself. In order to make this transition financially, her mother in-law’s house needed to be sold. They decided to make the move first and sell the house second, because they knew that Chris would not be able to handle or understand why her house was being sold. Unfortunately, they needed to sell her house without her fully knowing what they were doing. Colleen was uncomfortable with this even though her husband has financial power of attorney. She felt like she was lying to her mother in-law, and her guilt was hard to cope with. She brought the issue to the support group. Her colleagues shared their experiences and provided input and helped her see that the relationship with Matt and his mother, and she as the daughter in-law, had changed. As part of this, it’s normal to shift how much she’s able to share or not share with her mother in-law. Colleen was able to see the issue from a broader perspective, and while her guilt didn’t totally vanish, she was able to cope and move forward.
When a broadcast email went out looking for a moderator for the Alzheimer’s and Other Dementias Caregiver Support Group that Colleen attends, Kelly responded immediately. One of the key qualifications is experience with memory loss. Kelly is an R.N. She ran a memory care unit at a nursing home and she has worked in home health. Kelly supports the company’s Medicare customers by visiting them in their homes to help them understand their benefits, to connect them with community resources, and to provide health education. Kelly volunteered because she “knows how hard it is on both sides.” Kelly’s mother was 60 when she passed away. She had lung cancer for seven years and as a result, she also had emphysema and COPD. Eventually Kelly’s mom had to have part of a lung removed. During the surgery, her mother went into cardiac arrest and her brain was without oxygen, which resulted in full-blown memory loss immediately. Kelly said that experiencing this dramatic change in her mother’s cognition didn’t allow her to work through all the stages.
Despite her background as an R.N., Kelly struggled with caregiving. While her mother was ill, there were just two family members able to help – just she and her brother. They didn’t have any additional support. Due to her profession, she saw things more from a clinical perspective and didn’t educate herself on other available resources. She feels like she had to feel her way through caregiving the entire time. She wants to help her colleagues based on her own experience because “It is only right, and I believe it is part of my purpose.”
Between 20 and 25 employees attend the monthly support group call and most are women. The format is open discussion- it is based on what someone in the group wants to talk about. Often Kelly will start the call by following up on something that was discussed in the previous meeting to see how things are going. Kelly is cognizant to make sure members feel like they’re given enough time to talk about their issues. If there is a lull in the conversation, she and a colleague that assists usually have a few topics ready to bring forward. Sometimes specific resources are shared that everyone can benefit from.
In the July support group meeting, one of the members asked this question. “My mom recently passed away and she was typically Dad’s primary care giver. (Her father has Alzheimer’s.) Has anyone experienced this type of loss with a dementia patient? Are there any suggestions on helping our Dad deal with this loss?”
The first response was, “Whatever emotion they are dealing with that day, then you go with it. Support the loved one in what they are feeling; don’t deny them what they are feeling.” Another related her own experience (her husband has Alzheimer’s): “My husband’s mom died quite a few years back and every time he asked about her, and she told her that she died, the pain came back and he went through it all over again. We decided not to tell him that she died. If he acted like she was still living, then we just went with it.”
Kelly asked if the responses were helpful and received confirmation. Then she added, “Don’t forget to take care of yourself. While you’re supporting your dad, don’t forget about your grief and yourself. Perhaps consider a grief support group if it works for you. Seek resources that may be of help.”
The members of the support group show caring and empathy for each other. They leave the meeting with a little less burden than when it started. They all appreciate support from their employer for what they are going through. The convenience of having the time allocated as part of their work day vs. having to drive to an off-site support group after work is seen a considerable time saver and reduces stress. While this support may seem relatively small in the bigger picture, coupled with other supports, there can be a significant impact. The good news is that according to the NEBGH/AARP survey, three-quarters of employers say caregiving benefits will grow in importance to their companies over the next five years, especially for employees caring for elderly or ailing family members.
–Therese Barry-Tanner, Producer