Dementia can be one of the most difficult aspects of caregiving. Watching a loved one succumb to confusion, forgetfulness, agitation, suspicion, and sleep disturbances is wearying and trying to mitigate its effects seems an impossible task. Here are four strategies to apply to your caregiving situation.
Going through the same routine for daily or weekly activities can help. For the caregiver, it gives a sense of control and order to the day. For the person receiving the care, it helps to keep them better oriented to time, fosters independence on some tasks, and helps to decrease frustration. Some tips for developing a routine include:
• Use past routines to help develop yours. If your parent or partner always showered in the morning, consider bathing in the morning.
• Simplify routines as much as possible, breaking them down into the same small steps each day. Giving one instruction at a time can help to keep things running smoothly.
• Use external cues to help emphasize the routine. Lay the toothbrush out on the counter each morning. Play the same music during meals, or before going to bed. Sit in the same chair before putting on shoes to go out. You can also use pictures to label things if reading is becoming difficult.
Let go of logic
Often we maintain expectations of our loved ones beyond their ability to meet them – the idea, for example, that if we explain something logically they will be able to understand why they must do a certain thing, or stop doing something else. The difficult reality is that someone who is suffering from dementia is losing or has lost his or her capacity to apply logic at all times. Instead of explaining, stick to simple sentences about what is going to happen or what must be done next.
Let go of the idea that it is your responsibility to educate your loved one if they are mistaken – for example, if he or she believes his or her mother is alive, it’s not necessarily important to correct the confusion. It may be worth letting some of these things go, even if it is emotionally trying to see such evidence of their own decline.
Modify your language
By making a few changes in how you communicate you may be able to lower confusion and argument. For example, making choices can be difficult for someone suffering from dementia. Rather than phrasing things in the form of a question – “Would you like to go to see your doctor today?” use declarative statements like “Today you’re seeing your doctor.” It may also be simpler to go ahead and prepare meals rather than to ask what the person would like to eat. Keep your sentences short and factual.
One controversial area when caring for loved ones suffering from dementia is the question of the “little white lie.” Our instincts often lead us towards complete honesty. But it may be worth considering whether it is really harmful to allow a loved one to think, for example, that he or she is accompanying you to lunch and to the doctor – and happens to get checked over at the same time – than to have an argument about whether there’s a need for him or her to see the doctor. Clearly this is a very personal decision, but remember that caregiving is a complicated and difficult role – occasionally greasing the wheels of daily life with a bit of fantasy may be well worth it.
Even the most experienced and caring caregiver will have days – even weeks and months – where things become overwhelming.
On the level of the mind, there are some kinds of thinking that contribute to frustration. One of these is to over-generalize (this always happens, this never works out). Discounting the positive is another way of thinking that can add to a sense of stress – for example, overlooking the good things that you do or allowing yourself to be a caring and loving, yet imperfect caregiver. A third negative pattern of thinking is to live in a world of “shoulds” – he should go to sleep now; she should enjoy this dessert – rather than accepting the days as they come.
Finally, don’t be afraid to reach out for a break. Contact your local health care agency to arrange for respite care or homemaking, or look into day programs. It is just fine – even essential – to take a breather, and will make you a better caregiver in the long run.