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Living with Dementia

January is Alzheimer's Awareness month, and the theme presented by the Alzheimer's Society of Canada this year is "Yes, I live with Dementia. Let me help you understand." The goal of this campaign is to share stories of those affected by dementia to reduce stigma and increase understanding about life with the disease.

To participate in the campaign, Grace Village has asked Terry Skeats, whose wife lives at Grace Village, to share more on his journey and what he has learnt from caring for his wife through her years with Alzheimer's Disease. 

"Those who have experienced the effects of dementia, either through a close and beloved family member, or through experience with friends and their families, know that the effects on the individual suffering from the condition differ in each case, and need to be dealt with accordingly, both by professionals and by others. What is often forgotten, however, are the effects of the disease on those near to the patient, and how their lives are altered, often permanently, by the situation.

The realization that someone may be suffering from changes in their mental state often comes when changes in behaviour are noticed. Things like wanting the same food for every meal (toast and coffee for example), instead of a healthy variety of foods providing proper nutrition, or changes in physical capabilities (walking, performing daily tasks which formerly required little effort, increasing incontinence or difficulty communicating), are often signs of a change in mental capacities.

The recognition of these changes requires that family members seek professional aid for a proper evaluation of the individual’s condition, and appropriate action taken on the part of the family to ensure that the individual concerned receives the necessary care. Fortunately, the facilities for proper diagnosis are more readily available and more advanced now than in the past, and treatment methods have improved considerably.

In 2012, my wife’s children and I noticed changes in her behaviour similar to those mentioned above, and after seeking professional help, she was diagnosed with Alzheimer’s disease. We were able to look after her at home thanks to caregivers who came twice a week and assisted in ensuring that she took her medications, carried out the necessary hygiene functions, ate properly and remained in communication with us.

However, by the spring of 2017 it was evident that she needed fulltime long-term care, and was placed in Grace Village where she now lives. I visit her several times a week, and other family members see her when they are in the area. She remains healthy, though her mental state has continued to slowly deteriorate due to the progression of the disease. She still recognizes me by sight, but no longer realizes we are married, or what my name is. Nevertheless, in spite of what she is dealing with, she retains much of her old personality.

In speaking to others who have dealt with family members with dementia, I have learned that there is no single way to cope with the problems which may arise. Some have dealt with the situation alone, keeping the affected family member at home and carrying out all the caregiving themselves until such was no longer possible, a situation which has, more often than not, led to extreme physical and psychological exhaustion.

This exhaustion is often not fully recognized by others, but can be devastating for the caregiver. Try to imagine returning to the house you shared after a visit with your loved one: you are there alone surrounded by the memories you created together and can no longer create. It is quiet, there are no other voices and you must rely on your own skills to restructure your life and activities – for yourself.

Most people, I would think, can manage this restructuring, much as we do after the death of a loved one. There are caregivers’ aid groups, and if there are such organizations in your area, they should be checked out. My own experience with one such group was not very positive, however: the meetings tended to be complaint sessions about the actions of the people who were being cared for, or criticisms of the caregiving actions of other members of the group. So, check out all possible options for assistance in coping.

Remember too, that in spite of the type and severity of a person’s dementia, each is still a unique individual. During my visits to my wife at Grace Village over the past three years, I have always noted this uniqueness. The sensory elements of the brain seem to be able to withstand the onslaught of dementia more than other parts (motor functions, for example), so those sensory faculties (sight, sound, taste, touch and smell) need to be stimulated as often as possible in order to keep them functioning. All of these people have had, and are still having, lives. It behooves us to do everything possible to maintain them." 
- Terry Skeats

A big thank you to Terry for participating in this campaign with Grace Village, and providing such insight into the unique life of loving someone with Alzheimer's Disease.

To read more stories from the "Yes, I live with dementia" campaign, please visit: 
https://ilivewithdementia.ca/

T
o learn more about dementia, please visit one of our previous blog posts:

Having a Senior Moment: Memory Loss vs. Dementia
7 Misconceptions about Dementia
What is Memory Care?