My mother was diagnosed with Alzheimer Disease just before Christmas last year. She has been showing short-term memory loss, losing track of what she is doing and acting erratically for the last two to four years. My father has been trying to manage on his own and has been resisting involving the provincial Home Care program. He says Mom made him promise not to “lock her” up in a nursing home, and he has been respecting her wishes. In the last few months she has started to wander, and has become increasingly paranoid and agitated. He has also mentioned a couple of episodes when she became angry and hit him. He has been keeping information to himself, and has only recently started to share his concerns.
My sister Teresa asked me to help to convince him to attend a care planning workshop with the Alzheimer Society (AS), and I went with him. This was, obviously, an intervention. The work and the worry have been wearing him down, and her symptoms have been getting worse. He can’t manage the disease. He can’t reason with Mom – he never could. He doesn’t like the message that she is ill to the point of being crazy. She is losing control. He needs someone independent to help him see that it isn’t personal. He is going to live through some bad days, but may be able to minimize them and still have some good days.
My perspective on the situation is cold, and perhaps vengeful. My mother was loving and proud, supportive of achievement and ambition. She also has tended to be needy, manipulative and occasionally dramatic. She has got angry when frustrated, and abusive when angry. She had a difficult childhood. Her mother died when she was 10 and her stepmother convinced her father to send her to a boarding school. The conditions in boarding schools for students from rural towns and villages in Holland may be compared to the conditions in Canadian Indian Residential schools – harsh physical discipline, emotional isolation, isolation from sibling and peers, and abuse. She came into adulthood with limited social skills and high needs. She was isolated and lonely, our family as immigrants had low social status, the family finances were always strained. The children were needy and hard to manage. She had some significant medical and emotional issues. There were many medical problems and she was probably overwhelmed with housework and generalized anxiety. She was often bed-ridden. Her medical limitations led to the children being assigned chores, and that led to rivalry, evasion, and resentments. She focused on getting the chores done by commands, threats and physical discipline, and that easily got out of control. She expected the children to know what needed to be done – what she needed to be done – and to become explosively angry when her needs were not perceived and met. She tended to throw herself into manic projects, and then injure herself. She could be flagrantly emotional about her needs, to the point of waving one of Dad’s guns around and threatening suicide. If she acted out and hurt someone – it was sometimes herself – through uncontrolled, angry behavior – it was somebody’s fault. She was worried if Dad would find out or be upset. She tended to blame the children and Dad for making her feel bad. The anger part, the self harm, the unrealistic expectations of others – could be part of a personality disorder or a bipolar disorder that was never properly assessed.
Dad did his best to take care of his family, but he was never able to respond to her emotional aggression. He accepted her view of the way things worked and tended to blame the children and himself for making her upset. His personal creed became avoiding upsetting mother.
It has been apparent to all the children that she has been suffering from increasing memory loss and confusion, and he has had to take on many responsibilities to help manage her life. He has been monitoring her medication. He counts and administers all her pills. He doesn’t leave her alone for more than an hour. He has mentioned that she has started to cook things and left them on the stove, burned herself by not remembering that pans are hot. He does a lot of cooking and food preparation now. He has been increasingly reluctant to bring her to family dinners or parties because she gets confused and agitated. Last Christmas she had problems with operating the CD player and playing music – Dad removed it.
He has mentioned episodes of paranoia and delusion. She thinks my sister Joyce is persecuting her and she has delusional views about her family in Holland, especially her late stepmother. Dad has tried to avoid looking at this or to cover it up with a story that Mom has had bad dreams as a side-effect of a new medication. She hides things, then can’t find them. She goes looking for things in closets, endlessly. She has become restless – she wants to walk. If she can’t go out, she accuses him of confining her. He has seen this as simply unreasonable, given his own health and his own wishes. Recently she has started go walks impulsively, lose track of where she is and wander. She seems to have unloaded a lot of her anger on him.
Through this process he has tried to respect Mom. He defends her competence, talks about how smart she was, how she always managed the household. He has some good insights. He says, sometimes, that she is denying the disease. He has less insight into his own skills and limitations. He values his privacy, doesn’t want to accept help, wants to keep whatever promises he thinks he made to Mom to not “lock her up”.
He has maintained that he is managing, and that he has to respect her wishes and keep his promise. He knows that we are going to have a hard time introducing Home Care services. She is against it, even on her more lucid days. We are getting in touch with her angry, controlling and needy side when this issue comes up. There is an undercurrent of fear that he will not be able to manage her reaction to Home Care and that if she acts out, he may lose her to some kind of involuntary institutional placement. She has always been able to manipulate Dad with the force of her emotions.
Dad still tends rationalizes her behaviour in terms of people and events that have upset her. He has shifted his thinking a little. These days when she is upset with someone, he generally accepts that no one has done anything and that she is reacting to a false belief. However he still finds it hard to take the abuse, and he sometimes tries to deal with her by trying to convince her she is wrong.
He is plainly worn out. Her restlessness and agitation are interfering with his sleep. He keeps busy with household maintenance and repair projects. He tells me he has to do these projects to feel busy and valued. He said he has to read and re-read his books to distract himself from worrying all the time. It helps him feel better and relax.
He is worrying all the time, trying to visualize a way out of this mess. He is depressed. His depression is affecting his judgment about the situation and his own health. An intervention was required.