Giving care to people who are dying and who also have early or mid stage Alzheimer’s is easier if you are aware of a number of difficulties that cognitive impairment has on their experience and behavior. Alzheimer’s does not make death any easier or more difficult for caregivers. As your loved one enters the last weeks and days of their life there is a lot to contend with. Sorrow, anticipatory bereavement and sometimes pleasure when an interaction/time spent remind you of the loss to come. I have put together some information that has been helpful to me that may be useful to you.
As well as being a symptom of Alzheimer’s and other forms of dementia, confusion is also a symptom of physical conditions such as poor oxygen levels, common for example in heart and lung disease. High levels of chemicals poisonous to the body, for example, high urea and creatinine common in kidney disease and in diseases of the brain such as tumors, may can also cause confusion. Medications used to control pain, anxiety and agitation may also contribute to confusion.
The body clock can, and does, desynchronize for a number of reasons. Apart from exposure to light, other environmental factors such as physical activity and food intake act as daily cues to help maintain the body clock. As people get older the part of the brain that helps to regulate the body clock starts to deteriorate. This, for example, can lead to increases in body temperature during the night and disturbed sleep.
Older people tend to rely less on their internal bodily mechanisms and much more on external cues to monitor their sleep-wake cycle. So dimmed lights, low noise and activity levels can help them realise it is night time and this can help to promote sleep.
Eating and Drinking
Loss of interest and the ability to eat and drink diminishes. Nausea and difficulties with swallowing may contribute to this. Medications previously given by mouth may need to be administered by a syringe driver especially drugs that control pain and anxiety. People with mild cognitive impairment can still make their wishes for food and drink known, but may need help to take what little nourishment they need.
Withdrawing from the World
As death approaches the person gradually withdraws from those around them and from their surroundings. As the body becomes weaker bed rest becomes more and more important and the most comfortable place to be. Extra help with toileting, help preventing bedsores becomes an issue for caregivers and to the dying.
Friends and relatives often try to visit when they know the dying person tends to be more alert. The apparent lack of interest in the visitors does not mean they are rejecting them or finding their presence unrewarding. It also does not mean they cannot hear what they say, or that they cannot understand what is being spoken about. It also does not mean that they do not take pleasure and comfort from their presence.
One of the interesting things about the dying process is that breathlessness becomes less of anissue. Even if they suffered from breathlessness before the body, when death is near, requires less oxygen and it is reduced to a minimum.
When someone has mild cognitive impairment they do realise what is happening to them. Having someone with you when you are finding it hard to breath is very reassuring and often reduces anxiety. Tell them to take slower breaths, showing them the speed of breaths can be calming if they feel you are not panicking.
In the last few hours of life breathing can be shallow and irregular. Sometimes there are long pauses between breaths and abdominal muscles take over the work. Gradually the pauses become longer. Then the last breath is taken and they are dead.