Continued visits help in late stages of dementia
My 83-year-old dad has dementia and had a stroke, and has been in a nursing home now for a few years. I have visited him every Sunday for many years.
It seems like now he is either sleepy or not so aware of who I am. I often wonder if it is even really necessary to go see him. Being a pragmatist, I sometimes don’t know why I bother. Considering
It sounds like you have had to deal with a lot of medical issues with your dad. Strokes and dementia are often a tough combination, causing both physical and cognitive deficits. I gather the dementia has progressed and he is in the later stages of the disease. It is always tough to see a person deteriorate and seemingly fade as part of the illness. Some caregivers find this a very traumatic part of the illness, while others, like you, seem to come to terms with it being the end of a long journey.
Research suggests that although a person may not seem to recognize you, it does not mean you are really forgotten. The “self” still exists in there, and there is a way to access the person through the senses. Touch and sound are particularly important in the latter phase of the illness. The sound of your voice, your movements, the structure of your face, may bring about recognition of some comforting familiarity.
Hopefully you have prepared for this stage and have dealt with the legal, financial and practical issues that may arise.
Now, it is time for provision of a different type of emotional support and comfort.
They may not be able to show their gratitude — but that does not mean that they are not responding to the visit
Sitting with your dad holding hands spending time watching television together, or the sound of your voice, likely offers a lot of comfort to him. Scientists and clinicians are not truly sure what and how a brain with dementia processes particular stimulation, but many believe the individual may comprehend and take in more than is apparent.
At this phase of illness, someone may not be able to express or respond verbally or even with nonverbal communication.
They may not be able to show their gratitude — but that does not mean that they are not responding to the visit.
A sense of connection and positive emotion can be conveyed. A calm, familiar voice and pictures can meet the need for social contact and companionship, and a furry pet to stroke can bring comfort and relaxation.
The other role that should not be undervalued is that of advocate for your dad. The staff of the home is more likely to respond to family members who note any changes in health, and you are likely to be aware of any signs of pain or discomfort displayed by your relative.
Some caregivers find this stage too hard to cope with. Get support and talk it out with a professional, since you have been there for the whole journey. It is important for you both to be with each other in some form, even in this difficult end-stage of the illness. Nira Rittenberg is an occupational therapist who specializes in geriatrics and dementia care at Baycrest Health Sciences Centre and in private practice. She is co-author of Dementia: A Caregiver’s Guide, available at baycrest.org/ dacg. Email questions to caregivingwithnira@baycrest.org