Stories about Dementia

Read below about the people who have dementia and their personal stories.

Martha's Story

Flowers
Martha was 78 when her husband, Bob, died.
She had been a housewife all her life, living for her children and grandchildren. She took pride in her cooking and sewing, always keeping a clean and tidy house.

When Bob sold their house to buy a motor home ‘so we can be free to come and go as we please’, Martha was disappointed.

Living in the motor home with his wife in such close quarters, Bob began to notice things. Martha seemed to have trouble remembering what he had told her just a few minutes before. She would forget appointments, and decided that she no longer wanted to drive, especially the motor home.

‘It’s just too much,’ Martha told him. He became concerned when he came back from the store and found that she had left the kettle on the stove and all the water had boiled out of it – again. This was the third time in the last month. Though he was concerned, he kept it to himself. He did not want to worry the children. She was his wife, and he would deal with it.

When Martha began repeating the same stories over and over again, Bob just listened as long as he could, and then would go outside. Sometimes he would invent reasons to drive to the store, just to get away, but then he worried about whether Martha would be safe or not when she was alone, so his trips were always short.

When she kept asking the same questions over and over again, he just kept giving the same answer and said to himself, ‘Lord, give me patience.’

When Bob died suddenly, Martha seemed different to her children. She was not grieving the way they had expected. On the way home from the funeral, she asked ‘Where is Bob?’ This upset her children greatly. When they told her that their father and her husband was dead, she said ‘Who is going to take care of me?’

The children decided that Martha would live with the oldest son and his family for the time being. Soon after she moved in, problems began to
emerge. Martha would try to clean up or put things away and then her daughter-in-law could not find them. When told to please not help anymore, Martha got moody and would go to her room and
stay there.

When her children were little, Martha used to punish them with slaps or spankings. When Martha now got angry, she would try to hit her son. When she got angry at a grandchild and slapped her, the family decided that something had to be done.

First, they began to give Martha tasks that she could accomplish successfully, that would let her ‘help’, and give her a feeling of accomplishment.
The daughter-in-law asked if Martha would help her in the kitchen, and gave her different fruits to sort.
Martha also shredded lettuce for salads, and squeezed oranges on an old-fashioned juice squeezer to make orange juice. The family noticed
that Martha had more ‘good days’ and was less disturbed when she had things to do.

Over time, Martha began to have more difficulty walking and taking care of herself. She no longer could go to the bathroom on her own, and did not know what to do once she was there. She began to have ‘accidents’ all the time, and got very angry and physically abusive if anyone tried to help her clean up. Then she fell, and though nothing was broken ‘this time’, the family decided to move her into a residential aged care facility. This was a hard decision, but after lots of discussion among the family members and with social workers and staff of different facilities, the family made the decision.

Martha was very upset when she was ‘left’ at the residential aged care facility.

On the first day there, Martha ‘bolted’ out the front door when a delivery man opened it. Staff tried to talk her into coming back in, and she slapped and hit them when they tried to bring her back. When family came to visit, they did not know what to say or do. A diversional therapist on the staff told the family that Martha really liked to help fold clothes, and so family members began to bring in baskets of clothes for folding when they came to visit. Martha and her visitors would fold clothes and talk while doing so.

Family members would bring oranges or other fruit snacks, and Martha would peel the oranges or bananas and they would share them together. The family members began to bring photographs of family vacations they had taken together in the past, and pictures of holiday gatherings from the ‘good old days’. They would put glue from a glue stick on the back of a photo, and show a piece of paper with a thick outline of a square that was the size of the photo, and have Martha put the photo on the square. They made ‘memory books’ of these pages, with a few words about the photo under each one. Family members and staff continued to work together to find out what activities Martha was capable of doing.

Everyone agreed that days when Martha had visits with activities were ‘good’ days.

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Marjorie's Story - Montessori and Rehabilitation

MarjorieIn recent years Marjorie had withdrawn from friendships and activities that had once been a great source of enjoyment. Marjorie’s personal hygiene was neglected and her two sons found they had to increasingly undertake household chores to support Marjorie to remain in her own home. Marjorie’s sons were bewildered by her complete loss of interest in her home as her home and garden had always been a great source of pride and pleasure.

Marjorie had been depressed for some time following her husband’s death, but that was many years ago. The changes in Marjorie that the family observed in recent times were out of character and they were not surprised when her doctor confirmed a diagnosis of Alzheimer’s disease.

Following several falls and a near-disaster with a fire in the kitchen, it seemed logical to move Marjorie to a residential aged care facility although the decision caused considerable distress for the family.

Following Marjorie’s move to the facility, apathy continued to be a major problem for her interaction with her family. Family members described Marjorie as previously being a vivacious, attractive lady with a wide range of interests. In the facility, Marjorie was assessed as having a moderate level of dementia; however, her son described his mother as ‘giving up’ although she was in no obvious distress. The family commented that they were keen to find a way to spend meaningful time with Marjorie, as visiting has become a depressing experience.

Staff were also concerned about Marjorie’s apathy.

She lost interest in participating in group activities arranged by the Lifestyle department and the nursing staff commented that she just sat in her room or in the lounge area for extended periods of time. Her reduced appetite and loss of mobility were also causing concern. Despite Marjorie’s ability to speak and comprehend simple instructions, Marjorie’s sons felt they were no longer able to communicate with her. A recent assessment confirmed further cognitive decline. Other assessments confirmed a mild level of depression although the doctor diagnosed her apathy to be more a consequence of her dementia than depression.

Communication

Before establishing the rehabilitation plan, it was important to support Marjorie’s sons to develop more effective approaches to their communication with their mother, as their current approach would have undermined her rehabilitation. Various attempts by one son to engage Marjorie using scolding, reassurance, humour and pleading had proved unsuccessful. The other son tended to talk at her from the doorway, talk over her and about her to staff, and quiz her to improve her memory.

This approach appeared to overwhelm her and exacerbate her detachment.

The modelling of more effective approaches to communication assisted the sons to enhance their communicating with Marjorie. The approaches included gently gaining Marjorie’s attention on each visit, focusing on tone and pitch of voice, using gestures, and communicating at the same physical level. Unnecessary distractions in the environment were reduced, including turning off the television.

Other strategies included greater patience, simple sentence construction, and limiting choices.

Which approach to use for rehabilitation
In general, family and staff had expressed a keen desire to alleviate Marjorie’s apathy by supporting her to engage in activities that previously had been enjoyable for her. Ideally, these activities were to be shared with the family during visits.

It was explained to the family that the level of engagement in activities for people with dementia increases when activities are tailored to the person’s interests and skills. Ultimately their decision was to proceed with the Montessori approach as a non-drug intervention. This decision was based on interest by the family and staff in the progression of an activity that reflected Marjorie’s current abilities and skills and in the longer term,the possible development of roles and routines for Marjorie within the facility.

Identification of the goals using the Montessori approach
After assessing Marjorie’s current skills and interests, three goals were identified. The principal goal, which was to be the focus of Marjorie’s rehabilitation plan, was that Marjorie actively engage in an activity of interest to her for a minimum of fifteen minutes each day for ten consecutive days.

The activity selected involved flowers and would be supported by her sons each time they visited and by staff on the days they were absent.

The two other long-term goals were that Marjorie develop a role within the facility that required her to fulfil specific tasks on a daily basis, and that she participate in musical activities with other residents as arranged by facility staff.

Development of rehabilitation plan
Application of Montessori principles to Marjorie’s plan meant that the activity would initially be presented at the simplest level. It also required
that modifications be planned to accommodate her progression with the activity. In terms of arranging the flowers, it was planned that Marjorie would initially observe the arrangement of the flowers and then progress to do it herself. Similar activities would include arranging silk flowers in the vases in the dining room. Related and more complex activities could include propagating and potting plants and developing roles and routines within the facility.

Implementation
A roster was established for the ten-day period that required each son to visit on two occasions during the week and on one occasion each during the weekend. On the day the sons were absent, the staff undertook to engage Marjorie in the activity.

This very structured approach was designed to clarify and confirm the specific commitment to the plan by staff and family and to optimise the plan’s chances of success.

On each occasion, the Montessori principles were applied. These included preparing the environment to ensure unnecessary distractions were removed.

A small area was set up in Marjorie’s room for her to arrange the flowers. This included a table and a tray that defined the area where the flower and vases could be clearly seen. In the dining room, a work station was set up where the flowers and vase were clearly visible and labelled.

Interruptions and distractions in the environment were meant to be reduced as much as possible.

Unfortunately this wasn’t easy to manage as routines related to morning tea and medications disrupted the activity on five of the ten days despite requests to staff for this not to occur. Distractions in the dining room were also difficult to manage because many of the other residents were interested in what was going on.

On each occasion, Marjorie was invited to participate and offered a choice of related activities.

When it was not appropriate to alter the fresh flower arrangement, Marjorie was invited to arrange the silk flowers in the dining room or reminisce using a display folder prepared by her sons, which contained photos of her garden and favourite plants.

Marjorie was shown what to do with minimal conversation and minimal steps. Marjorie was never corrected, the focus of the activity remained on the process rather than the outcome. On each occasion Marjorie was thanked for her participation.

Evaluation
Marjorie’s sons both commented that over the ten-day period, their mother’s verbal communication increased, her facial expressions became more positive and her general level of engagement increased.

These were also observed by the staff.

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