May was 92 when we were hired to help her return to her own home from the nursing home where she had been living unhappily for six months. At that time, she was confused, suspicious, and angry. She had been hostile and uncooperative with the staff in the home providing care, and was known as a difficult person by her neighbours. She had a diagnosis of dementia and was unable to walk or transfer herself independently which made it risky to try to provide care in her home, but she wanted to be in her home, and had the means to have the care to do so.
Before bringing her home, we prepared for a smooth transition. We worked with a home accessibility contractor to do renovations to make her bathroom accessible. We hired a physiotherapist for rehabilitation, an occupational therapist to bring in the equipment she would need and to get the right wheelchair, and a home care company to provide 24 hour care. We engaged the supermarket for food delivery and the pharmacy to organize her medications. We connected with her former physician whom we convinced to take her back as a patient.
After three months at home, May was a changed person in many ways. Her memory was better. She recognized people more easily. She was much more alert and her mood had lifted. Most important, she was happy to be home. She allowed the caregivers to give her all the care she needed. But there were also many times when she was angry and insulting with those caregivers, and nothing that they did seemed to be right. At times she accused them of stealing. She was like a volcano that could erupt at any time.
We saw May one or two times a week over the course of many months, and took several actions to help stabilize her:
- We worked with her doctor to lower medications that might have been contributing to confusion and to review her pain control medications, so that she was free from pain more often.
- We involved her more and more in the daily routine of her house–the approach we taught the caregivers was “doing with, not doing for,” as much as possible. This meant for example, that she went shopping with them, instead of them doing it for her or she would make her own sandwiches with the caregivers just laying out the ingredients, rather than making them for her.
- We worked with the caregivers to bring back her lifestyle and the pleasures she had. For instance we brought animals and plants back into her life; we made sure that she could go to the bank weekly to take out money, and brought her to her favourite restaurant.
We also talked with her, and came to know what was fueling the volcano.
From an early age, May had had to fend for herself–she came to Canada as a refugee, lived in poverty, and was abused by the family that brought her here. She worked incredibly hard to get her education and work her way up in the bank where she worked. After two marriages in which she was abused, she found a wonderful husband. He had passed on a few years ago. At age 92, her friends were mostly dead, and distant relatives who might have provided security, were far away.
Gradually as May came to trust us,she let us know how overwhelmingly frightening it was for her to have to depend on caregivers, when her early life experience taught her she could not and should not depend on anyone. In her earlier years she’d had a housekeeper to whom she had been very generous, and it turned out the person was stealing for her. One of the symptoms of her dementia was that she was mixing up time–so that past seemed part of her present, and she confused her current caregivers with the woman from long ago.
Because of her dementia, May had trouble understanding what was happening with her money, and how it was being managed. That, along with her banking background and difficulties growing up made trusting that “your finances are fine and you have more than enough money” too much for her- and under the anger was anxiety that she could not trust her money was safe or that she would be able to stay in her home.
And there was grief. First was the grief of knowing that she was no longer the independent and capable person she had been. She knew she had memory loss. She also knew that her life was not going to get easier. Beyond the grief of what was in some ways loss of herself was the enormous loss of her husband. He was not only her companion–he was her rock. She missed him terribly and she was frightened without him. So not only was she dependent on people she did not know, she was alone and had no one to talk to about it.
During our weekly meetings, May’s grief gradually abated. Over the period of months we discovered the opposite of a difficult person. We found a woman who wanted to be charitable and kind and who cared deeply about other people. We found a woman who was often still sharp and with a delightful sense of humour. And we found someone who could begin to trust that she would be taken care of, that she–and her finances– were safe.
When caring for people of any age, with dementia or not, and we experience hostility, anger, or just distance, it is important that we listen to understand the meaning of the behaviour. By understanding it, we are in a better position to help heal the internal as well as the external pain that might be at play. Often, professional counselling is useful to help in this healing, and to help caregivers understand and help as well.
Diamond Geriatrics provides professional counselling and consultation to seniors directly and to caregivers and family members on dementia, behaviour, grief and loss to help put out the fire that is under the volcano. Call us today for a free 15 minute phone consultation to see if we can help.
