Dementia caregivers need care, too

by Carolyn C. Ravello for Guardian Media:I know a few caregivers and at times we’d share moments about their Alzheimer’s patients’ predicament that are extremely funny incidences. But, at times, when a patient exhibits violent behaviour, I become concern for my friends’ wellbeing. I remember my girlfriend’s amusement when at first her patient thought that she was his wife. He’d be sitting with his older male friends and when she would bring them some refreshments he’d say, quite delightfully, “You do remember my Brenda?”And, of course, she was neither Brenda, nor his! She’d smile graciously and then he’d say to her, “Come sit with me for a while dear” gesturing to the space next to him wherever he sat. We all, including his family, found sufficient basis for laughter in this. That was on a good day.Some months later, he began expressing his desire to go to his house and that routine has continued now for a while. Each time he insists that he’s not at his home, his family and caregiver would have to take time out to remind him of his surroundings using familiar references. That would also include opening the front door to show him neighbours’ homes, since he has lived at his current address for a considerable amount of time.It takes varying amounts of time and effort to convince him each time that in fact he is at his home. Another friend tells of her time as a caregiver to a patient who after a life of impeccable hygiene decided he did not have to bathe and “no one could come in (his) house and tell (him) differently, nor force (him) to bathe.” It made no difference to him that he had spilled urine out his adult pull-ups and onto his bed and that having stayed in bed until well past sun-up he smelled odourous.There was no care about his offensive body odour and the fact that everywhere he sat had to be cleaned and cleansed to become habitable once again. As far as he was concerned, he was not going to bathe and no one would dare make him. This confrontation got increasingly difficult for his caregiver because she felt at one point, while she was coaxing and sternly admonishing him that he was in fact going to hit her. She took precaution and called in an adult male relative to get him into the bathroom where he showered still putting up a struggle. Then he changed into his day clothes and spent a very sedate morning remaining visibly offended by the goings-on as he said “in (his) own house.”Communicating with an Alzheimer or dementia patient is one of the most frustrating parts of caring for them. (And, as a matter of clarification, dementia is a symptom, and Alzheimer’s disease is the cause of the symptom. Dementia is not a disease; it is the clinical presentation or symptoms of the disease). If your caregiver is not a family member nor has been involved sufficiently in or with the family history then they must be given appropriate ammunition to bring the AD/dementia patient to a calm acceptance of the current circumstances when the patient is clearly out of depth.One individual who had two parents in their 80s, both with AD and dementia, suggested making albums or memory books to point each parent back to their beginnings and the evolution of their life. This should be done in such a way as to point the family member to all the important moments in their lives: Images of them with their parents, their children, grandchildren and great grandchildren; photos of wedding days, births and christenings; announcements of the death of loved ones; pictures of the schools they attended, the university campuses at which they studied, indeed, all milestones that may jolt some familiarity.At ageingcare.com I came upon some advice for caregivers from which I’ve extracted two points. Don’t judge your caregiving skills by the response of your care receiver. People with dementia are going to have bad days. If you are educating yourself on how to cope with negative behaviour, and asking for help when you need it, you are likely doing fine. Try to remember a good day when your care receiver seemed to find some enjoyment and see if you can replicate that to some degree.Detachment is vital for our mental health. We need to detach from our care receiver enough to keep our own sense of self and not allow their needs to define our whole lives. If we have a controlling, cranky elder we cannot please, we can’t let their behaviour saturate our sense of self to the point that we feel we are failures. Dementia has to be overwhelming for caregivers and it is reasonable to expect that caregivers too, should have access to mental health counselling or support from professionals in order to cope while giving appropriate care.Source: http://bit.ly/1itLAP1