Having assessed the abilities of the care recipient, one has to decide (as far as possible in conjunction with the patient) what help is needed. It is easier to evaluate physical needs – assisting with bathing, dressing, eating, taking medications, or keeping medical appointments for example – but harder when it comes to emotional and mental needs. One of the most important things that one forgets easily is the fact that everyone needs some mental stimulation and needs to be engaged, whether through reading, writing, painting or interesting conversation. This is true no matter what the patient’s physical condition is; very often we forget the need to constantly challenge their mind and that they are also a person with varying emotional needs, though they may not be able to express their desires or feelings.
Preserving the patient’s dignity means that they should not feel that they are being treated like someone who is meant to be seen but not heard. This can lead to depression and the feeling of being useless and becoming a burden, a sentiment that my husband often expressed.
One of the ways to help the patient develop self-worth and not to feel useless is to be engaged in an activity that will boost one’s morale. One of the ways to do this is to encourage the person to write or dictate a memoir. Several studies have shown that reminiscing has therapeutic effects – it helps the patient to recall old accomplishments, thereby reaffirming her/his existence, giving them a sense of contribution and legacy and at the same giving the family a wonderful memorial. This could be something that can be handed over to a family member or friend and this person can trigger memories by asking key questions about the past – about school, growing up, activities during vacations, family, grandparents etc.
Another aspect of caregiving that is often overlooked is boredom. In the last few months I have been volunteering with a hospice and one of my duties is to deliver flowers to hospice patients, some of whom are in their own homes and some in Nursing homes or similar facilities. During these visits I have noticed that most of the patients, irrespective of where they are, are lying in their beds alone and seem very bored and lonely; there is no one or nothing to either amuse them or stimulate them, and even the walls are blank and empty. I have been constantly reminded about how much my husband reacted to music – there was constantly music playing in the house and he always loved listening to it, sometimes passively, but very often actively. It always calmed him and often his response was quite obvious.
The therapeutic effects of music have long been recognized, but recently there have been several studies (e.g. this one) that document the effect of music on elderly people’s wellbeing, especially amongst those that suffer from dementia and memory loss. With recent advances in technology, it is easy to have music either on speakers or on ipods. There is also a documentary available at this link which explores the effect on music on the elderly.
Many find it very difficult to communicate with people who are ill, especially if it seems as if they do not really understand or respond. However, it is arguably healthy people who have a problem, because we feel awkward when there is a lack of response. A couple of recent experiences have served to reinforce this. I recently attended a meeting of hospice volunteers who wanted to share experiences and learn from each other.
It was interesting to see that all the newcomers expressed the same concern: that they were getting nowhere with the person they were visiting because it seemed that there was no response, and in some cases even hostility. The discussion that followed led to the conclusion that very often we are so concerned about “performing well” that we do not look at it from the other person’s point of view. Often times we do not think to find out what they would like. After all, even though they are elderly or ill, they still have certain interests; we have to remember to respect them as people with individual desires and tastes!
Baycrest, an academic health sciences center affiliated with the University of Toronto, Canada, has published a handbook called Visiting with elders – strategies to help you have a meaningful and rich visit with an elderly loved one. It contains some very useful and helpful information, not only for the family members, but also for friends and volunteers.
One of the things that the authors point out is how the method of communication changes as the person grows older. Here is an excerpt:
Conversations, dialogue, and even arguments are at the core of our relationships with others. When conversing with a person who is experiencing cognitive changes, we need to be particularly sensitive to how we respond when they have word-finding difficulties. Generally, the older person continues to understand far more than they can express in words, so it’s important to try and understand their thoughts, and to listen for the deeper meaning of what they are trying to express – by words or by body language. We can try reframing a statement, asking if that is what they are thinking of and wanting to tell us.
The entire handbook can be accessed here.
Before this meeting, when I visited an elderly gentleman living in a nursing home, I did not quite know what to say to him since he had tremendous hearing problems and I assumed that he was also suffering from severe memory loss and did not quite comprehend what was going on. However, now that I had attended this meeting, I decided to find out a little more about him and when I did I discovered that his hobby had been photography. I took him some magazines that had some beautiful photos. I also took a pad and pencil. As a result we had a very good written “conversation” and he wrote for me that he used to work at the Art Center and was a professional photographer. I also found out that he would be happy if we played board games and that he would rather not listen to music because of his hearing problems. I left feeling that I had achieved some connection with him and that since I took the time to find out what his interests were, I was more comfortable conversing with him.
When one is faced with looking after someone who is frail, it is easy to forget how important exercise is. In fact, it is just as important as many other areas of a patient’s life. Exercise in any form has many benefits—it helps to strengthen balance and prevent falls, helps with circulation, prevents bedsores and it can also help in improving the mood of the person. The activity does not need to be strenuous: walking around the house or garden (with help if necessary) or even just encouragement to stretch and move their legs or arms, perhaps whilst holding a small weight, can only help. If the person is in bed most of the time someone can help them lift one leg at a time and hold it up, let go and repeat the movement several times. The same exercise can be done with the arms.
We might say to ourselves that it is safer to leave the person on a chair or in bed, but the benefits often outweigh the risks. I saw the difference it made for my husband, who, even though he always resisted going with his cardiac therapist, often admitted later that he felt better afterwards.