Family caregivers: Your role in long-term care

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By Lisa Levin

Most people want to remain in the comfort of their own homes as they age.  Unfortunately, that is not always possible.  As a result, over 100,000 of Ontario’s seniors reside in long term care.  Many people think that as soon as a person is admitted into long term care, things can “go back to normal” for their family caregivers.   However for most caregivers, that is simply not the case.  Seniors in long term care are older-and more frail then in the past.  In fact, 90 per cent of long term care residents have some form of cognitive impairment, and 1/3 of residents are completely dependent on staff for all their needs.  However, government funding, including resources for staffing, have not kept pace with these changes.  Family caregivers often  make up for this short fall when their loved one moves into long term care.  Added to this,  paid staff simply cannot know the needs and preferences of residents as well as their family, so family caregivers continue to play a critical role in care.

Ray’s wife Liz was diagnosed with Huntington’s disease  when she was 48 years old –although she began to exhibit symptoms of severe depression attributed to the Huntington’s when she was 42.  By the time she was 50 years old,  Liz could not be left at home alone.   Ray worked full time, however with help from the CCAC and a private nurse, Ray kept Liz at home for 7 years.  He assisted her with activities of daily living and became her rehab coach.  Ray purchased a Gazelle exercise machine and encouraged Liz to use it regularly to assist with her strength and balance.  Liz’s mental health took a sudden dive in 2007 after she was admitted to hospital where staff did not know how to handle her disease.  After a fall, her state of mind worsened, and Liz became violent.  She was drugged and restrained.  Liz was finally moved into long term care suffering from PTSD attributed to her harrowing hospital experience.  With medication and a more accepting environment,  Liz eventually regained her mental equilibrium.  She happily participated in activities such as pottery and woodworking . However Liz had lost her mobility while in hospital and became wheelchair-bound.

When Liz first moved into long-term care, Ray would visit her three times a week.  Once he retired, he was at her side every day.  “The staff at the home did not understand Huntington’s and did not know my wife as well as I did – so for her quality of life I felt that I needed to be with her as much as possible,” said Ray. Without Ray, Liz could not eat or have a peaceful bath towards the end of her time in long-term care. In the last year of her life, Liz was not able to feed herself and also had difficulty swallowing.  If Ray was there, he was able to get Liz to eat – however when he was not present, Liz often went without food.   Ray eventually also had to be with Liz during bath time.  When being bathed in the morning, Liz would become very agitated, and staff had to sedate her to complete this task.  Once Ray ensured he was present during all Liz’s baths, things went smoothly and there was no need for medication.  Liz passed away last year at the age of 65 – more than 20 years after the Huntington’s disease surfaced.

Doreen cared for her husband Blake at home for 13 years after his diagnosis of early Parkinson’s disease when he was only 50 years old.  Blake’s Parkinson’s gave him anxiety, chronic pain, and  a severe sleep disorder that made him very restless at night.  He physically acted out his dreams, and one night Doreen awoke to find Blake’s hands around her neck while he was having a nightmare.  Needless to say, Doreen became sleep deprived and had no reprieve  between a busy job, an ill husband and sleepless nights.   With only 5 hours a week of CCAC care, Doreen felt that she became an unofficial personal support worker for Blake as his mobility declined. He wanted her by his side all the time.  Doreen eventually became burnt out trying to balance working and caregiving, and had to go off on long term disability leave.   Blake was hospitalized after a bad fall at home and ended up in long term care.   Blake was angry and upset that he could not return home, and Doreen, like most caregivers in this situation, felt incredibly guilty.   Despite this Doreen realized that she could no longer care for Blake at home, and it was a relief to finally get the sleep she so desperately needed.   Blake’s mood improved somewhat after going into long term care.  He perked up while participating in activities, and particularly enjoyed music therapy.  Staff treated him very well.  According to Doreen, |”he was so handsome everyone fell in love with him.

Doreen would visit Blake 3-4 times a week, but said it broke her heart when she had to leave .  Blake would accompany her to the exit,  and she would watch him shuffle back to his room in despair.  Although Blake was now living in long term care, Doreen continued to do his laundry with her own personal touch because, “Blake liked his clothes to look nice and the home would throw all the clothes together with javex.”   She would fix his hair when she visited because the staff , “never combed it the way he liked.”  In the last few months of Blake’s life , he fell over 70 times when he developed dementia and forgot he needed a walker.  Each time Blake fell, Doreen would get a call.  How can one say that the caregiver’s role ends when they receive seventy calls about their loved one falling?

Caregivers cannot just walk away when their loved one enters a home. Ray and Doreen both feel it is critical that family visit their loved ones in long term care regularly and watch over things.  They say that if the residents don’t receive visitors than they don’t get the best possible care from the overburdened and often changing staff .  It is also important to let the staff know who they are caring for – so they see more than a hunched over old man or woman in a wheelchair.  So they see a devoted husband or wife, proud parent and grandparent, and someone who was once an active and contributing member of society.  Someone who deserves to be treated with dignity and respect.

Lisa Levin is Chair of the Ontario Caregiver Coalition and is also the Principal Consultant for Lisa Levin and Associates where she provides services including strategic planning, marketing and communications and accreditation project management.  She also provides Care Management services to help families navigate the home and community care system. She can be reached at info@lisalevinandassoc.com