Claire Considers Residential Care for George - Step 10
By Ann Wyatt, Manager of Palliative & Residential Care
George had been able to live at home with his wife for many years after his original diagnosis, with increasing amounts of support not only from his wife, Claire, and their children, but also from various programs at CaringKind. Among these, help at home from an experienced and carefully trained aide that Claire found through CaringKind’s Together We CareTM website and from the social day program that George attended and enjoyed twice a week. This has provided George with variety and the opportunity for socialization, and has helped his wife find time to both maintain the household and also take care of some of her own needs. Claire has faced some increasing health challenges as well. Recently, she was diagnosed with glaucoma and also has considerable pain when she walks, due to a worsening problem with her hip.
At this point, however, Claire started to feel overwhelmed, and worried that she wouldn’t be able to keep up with George’s increasing care needs. In addition, staff at the day program had reported that George appeared restless, unable to engage with many of the activities they offered, and was in need of more assistance with eating and overall participation. While the home care aide was a huge help, the family’s budget did not allow for more hours of care to be added. Finally, their children were helping as much as they could, but lived in different boroughs and with children of their own, were limited in what they could do. After wrestling with the decision, Claire eventually accepted that more help was needed.
In conversations with CaringKind’s social work staff, Claire decided that moving her husband to a nursing home would be the right thing to do, to assure that his care needs could best be met. The social work staff member advised Claire to attend one of the many education seminars offered by the organization called, Placing Your Relative in a Nursing Home. In that seminar Claire was reminded that dementia is progressive and eventually terminal; the average time between diagnosis and death is eight to ten years, but there is extreme variability with some dementias lasting up to 20 years or more. Typically, about 40% of time spent living with dementia means living in the advanced stages. Someone who reaches the age of 80 and does not have dementia has an approximately 5% chance of spending time in a nursing home, whereas someone who reaches the age of 80 and has dementia has an approximately 80% chance of spending time in a nursing home.
Her CaringKind social worker then helped Claire think through the kind of residential setting that would work best for George. The social worker encouraged Claire to talk about her feelings of guilt and her worry about what others would think even though she knew this was the right plan. They assisted her in finding a place that was fairly easy for her and her family to get to. It was also one with a particular focus on comfort, including great flexibility in activities of daily living, such as when to get up, when to go to bed, etc. This type of care was particularly important for George, as he had a habit of rising early (and going to bed early too) from his career as a U.S. Postal Worker. Walking has always been important, and in this setting walking is encouraged (and assisted, when necessary); there is an enclosed garden where he is able to spend some time as well. George has a lifelong love of music, and this home also has an iPod with a personalized playlist (via the Music & Memory Project) for him. Both George and Claire found relief and comfort in their new situation.
When a move to a nursing home is being considered, it is important for family members to realize that this is not about them giving up; it is about finding a way to meet the changing, increasing and often challenging needs for care that they are experiencing. Transfer to a nursing home means family members can now work in partnership with staff at the home, helping staff to know and understand as much as possible about the personal comforts and preferences of the person with dementia, while at the same time being relieved from some of the pressures of physical care and supervision, and thus more available to provide emotional support and comfort.
George and Claire’s journey with CaringKind continued with the family using programs and services as they needed them. The family participated in the CaringKind Alzheimer’s Walk, honoring George and Claire’s journey.
Thank you for reading about George and Claire, a fictional family that represents how CaringKind helps people with dementia and their caregivers.