Giving and Taking in Alzheimer’s Care
Although the role of caregiver is one we take on, in many cases willingly, we all find the demands of caregiving can overwhelm us. I coped because I had a supportive partner and by remembering that there is always someone worse off than yourself. I saw it time and time again when I worked as a hospital-based nurse and as a community nurse. People provided care to their relative in the most awful situations. They were living in terrible housing conditions, coping with abject poverty and often their own poor physical and mental health.
The difficulties faced by people caring for someone with dementia were highlighted in a text called the 36 hour Day by Mace and Rabins in 1985. They highlighed the job of caregiver as an all consuming and often unrecognised role. They found that because dementia often develops in an insidious and ‘almost imperceptable’ way the changing role of a partner who becomes caregiver often ‘slides’ gently from one phase to the next.
However, once the role becomes all consuming and very demanding the denial and a sort of spousal collusion that explains the symptoms and radical changes in behavior can no longer be denied and dementia can no longer be hidden. I found it was a sudden realization that your role was one of caregiver because the doctors and nurses you saw with your loved one called you that. The prognosis given to, in my case my father, became more bleak and incompatable with life. Home visits and the involvement of community hospice services made the reality more stark. Yet I still found myself shocked by his final admission for assessment to our local hospice and his death a couple of weeks later.
I do not think you understand emotionally and physically just how much the role of caregiver involves and how much your life has changed because of it. By definition the person with Alzheimer’s can do little more than take the care we are able to offer. At one level we recognise the exaustion, the worry and anxiety, but only when the role stops and after a period of reflection and recovery do you realise how much it changed you.
Caregiving has been described as a ‘living bereavement’ but having cared and grieved I don’t really see it that way. Alzheimer’s changes both the patient and the caregiver and in that sense we are tied together on a path that involves much giving and taking along the way. We may lose the person we once knew to Alzheimer’s but a part of them is still with us and the changes are often gradual and possible to adapt to.
Giving care for years on end, day and night, is a bitter-sweet thing. It stirs a complex array of emotions that hinge around sacrifice, honor, love, duty, humor, and yes sometimes irritation, resentment, and fatigue - fatigue at a level and depth that only someone who has followed such a path could possibly comprehend.
The New Year is a time for relection, renewed hope and a time to change things that you want to change. Changing your life and changing how you do your job of caregiver may be to increase time for yourself by getting relatives to share some of the work or it may include outside professional agencies. It may be involving day care centers and respite care. Support groups give you time to share worries, give you ideas on care, theraputic activities or just new friends. Your local Alzheimer’s Association can help change that improves your life and that of your loved one.
I wish you all a Happy New Year