10 years ago when Mark was diagnosed with cirrhosis of the liver in North Carolina, Mary never imagined she’d wind up in Kansas caring for her husband with frontotemporal dementia. At only 54 years old, liver damage made far more sense to explain the confusion at work than dementia, and although it was a fatal diagnosis, Mark & Mary were determined to enjoy the time they had left together.
Mark retired and they moved to fulfill their dreams of living in Florida. Mary soon began to see Mark’s condition worsening, and realized she needed to transition from wife to caregiver. For the first few months things went pretty smoothly, but as Mark’s illness progressed so did his confusion. Mary attempted to seek support for the stress she was feeling as Mark’s sole caregiver, but it became evident that Mark could not be left alone while she sought help. Knowing they both needed assistance, Mary moved them to Kansas to be with her family for support.
In Kansas Mark continued to deteriorate, even struggling to communicate pain from urinary tract infections (UTI). One infection progressed far enough that Mary had to take him to the hospital, and it was that day Mark and Mary’s lives changed forever. During his hospital stay Mark was seen by a geriatric psychiatrist for the delirium caused by infection, and he finally received the correct diagnosis for his confusion; frontotemporal dementia. The nerve cell damage caused by frontotemporal dementia can cause deterioration in behavior, personality and/or difficulty with producing or comprehending language – problems Mark had been suffering from for years.
Given the progression of the dementia and his deteriorating physical ability, the doctors advised Mary to find a long-term care facility for Mark rather than continuing to care for him at home. Because Mark is not yet 65 he did not qualify for the financial coverage of long-term care offered to older adults through Medicaid, so Mary struggled to find facilities they could afford and that would accept him. When she finally found a facility that would take Mark in, Mary soon discovered the poor quality of care offered there and the lack of dementia training for staff.
Unfortunately many of the staff members were not familiar with Mark’s rare form of dementia and its early onset, so they often did not know how to properly address his behaviors. His considerably younger age than the other residents led staff to act as if he didn’t need much supervision regardless of his status as a known wanderer, which often resulted in him getting out of the facility. On one occasion an employee actually picked Mark up on the side of the road on their way to work, on another occasion a housekeeping staff member unlocked the doors for Mark so he could leave. When the facility required he wear an ankle monitor to prevent wandering, another resident helped him cut it off after receiving scissors from the nursing station attendant.
At one point, Mary even found Mark with alcohol and other substances in his room that were banned by the facility. He said staff brought them in for him, but he refused to provide a name. Because he wouldn’t name the staff member, the facility punished him by banning him from the fishing trip the next day, which he could not comprehend because of the dementia. Mary knew Mark needed more attention and trained staff than he was receiving at the facility, and decided to take matters into her own hands. Mary called KanCare to come do a care assessment of Mark and determine what services he needed and if he could get them at home. She advocated with state programs to finally get Mark covered through Medicaid/HCBS the same way adults 65+ are, which allowed in-home care services for Mark to return home.
Mary was able to successfully care for Mark at home for quite some time, until he got another UTI that landed him in the hospital. She was devastated when the doctor declared that Mark would not be able to return home and instead needed a care facility. She spoke with the hospital social worker and shared the horror stories they’d experienced at the last facility, so they went with a different facility this time around. Unfortunately Mark and Mary were met with the same problems as before, lack of dementia training for staff and poor quality of care. One of the other residents with dementia was known to be aggressive, and the facility frequently had to lock down shared areas and other residents’ doors for staff to calm the resident down. Each time Mary visited Mark she would notice he appeared dirty, often wore the same clothes as the day before, and once even changed soiled bedsheets that he had been left to sit in for hours. Mary knew her right to video monitor in Mark’s nursing home room, and set up a camera to ensure staff was caring for him properly. To her dismay Mary caught a verbal altercation between Mark and a staff member that became so heated she called the facility to step in immediately and remove the staff member from his room. She took Mark home after the incident.
Today Mark is happily at home with Mary and their family who work together to help care for him. He’s re-enrolling in his Medicaid in-home care services, and Mary plans to keep him at home from now on. Mary encourages family caregivers to those with dementia to exhaust every community and government resource out there to help not only the person they are caring for, but also take off some of the load on themselves. She also suggests every family caregiver find some kind of help or support group, because caregiving is one of the most difficult jobs in the world and there is no clocking out. With all of the facility staff Mark encountered that were unfamiliar with frontotemporal dementia and under-trained in caring for someone with dementia, Mary encourages all long-term care facility staff to seek more dementia specific training than the minimum 2 hours required by the state of Kansas each year. Mary also suggests family caregivers seek out dementia caregiver training as well as learn hands-on care skills for safety of themselves and their loved one. Finally, Mary encourages caregivers to plan for emergencies such as keeping all important medical documents in a clear and easy spot for emergency personnel to see in case of a 911 call.