Alzheimer's Carers Quotes

And sometimes when she does remember, she calls me her little angel and she knows where she is and everything is all right for a second or a minute and then we cry; she for the life that she lost I for the woman I only know about through the stories of her children.

Wandering has long been seen as part of the pathology of dementia. Doctors, carers, and relatives often try to stop patients from venturing out alone, out of concern they will injure themselves, or won’t remember the way back. When a person without dementia goes for a walk, it is called going for a stroll, getting some fresh air, or exercising, anthropologist Maggie Graham observes in her recent paper. When a person with dementia goes for a walk beyond prescribed parameters, it is typically called wandering, exit-seeking, or elopement. Yet wandering may not be so much a part of the disease as a therapeutic response to it. Even though dementia and Alzheimer’s in particular can cause severe disorientation, Graham says the desire to walk should be desire to be alive and to grow, as opposed to as a product of disease and deterioration. Many in the care profession share her view. The Alzheimer’s Society, the UK’s biggest dementia supportive research charity, considers wandering an unhelpful description, because it suggests aimlessness, whereas the walking often has a purpose. The charity lists several possible reasons why a person might feel compelled to move. They may be continuing the habit of a lifetime; they may be bored, restless, or agitated; they may be searching for a place or a person from their past that they believe to be close by; or maybe they started with a goal in mind, forgot about it, and just kept going. It is also possible that they are walking to stay alive. Sat in a chair in a room they don’t recognise, with a past they can’t access, it can be a struggle to know who they are. But when they move they are once again wayfinders, engaging in one of the oldest human endeavours, and anything is possible.

Nevertheless, the large number of experiences of this type reported by carers suggest that it is an area that deserves far more attention. If it can be shown that patients with significant degradation of their brain tissue (for example, in advanced cases of Alzheimer’s Disease) become lucid, with memories intact, in their final days, what implications does this have for the relationship between mind and brain?

Alzheimer’s, senile dementia, dementia. What’s the difference? Not much for the carer. Ma is just a confused old person.

Over the years, I have cared for loved ones with advanced Alzheimer, late stage cardiovascular and renal disease and Stage 4 cancer. But none of those experiences prepared me for being a carer for a Severe or Very Severe ME patient. The breadth, severity and unprediciability of the symptoms and dysfunction from one person ro the next and from one day to the next can be hard to comprehend and mainstream medical education doesn't help.

Four things about learning how to care for someone with dementia are important to realize. Firstly, most family carers are unfamiliar with the effects of dementia on people’s abilities, and people with dementia due to Alzheimer’s disease, or another disease, function in ways that most of us have never experienced.  Common sense does not help here. The carers have to learn how to understand new information about memory processes and how to cope with situations that are new to them. Secondly, don’t be too hard on yourself. If you realize you have made a mistake in the way you have been interacting with a person with dementia, learn from it, change what you are doing, but don’t hang onto the guilt. Forgive yourself. Know that every family goes through these painful experiences and feelings of being inadequate. Apologize to the person with dementia and then distract them with something fun. Thirdly, understand that each person with dementia is unique in the way they behave and how they understand what is happening. What has helped one family carer to cope may not help the next. Be patient with yourself and the person with dementia and never stop trying to find ways to help yourselves. Coping often means trying one thing after the other, and then using the approach that works for as long as it continues to work. Fourthly, scolding and arguing will not help them learn because they have lost most of their capacity to learn with their short-term memory. Scolding will, however, establish a procedural memory in their mind that interacting with you is always unpleasant.

Biomarkers of inflammation, like cytokines and CRP, are increased in many stressful situations, including poverty, debt and social isolation. Carers of patients with Alzheimer’s disease, people with day-to-day responsibility for a spouse or relative with dementia, have increased inflammatory biomarkers.74 So do adults who suffered poverty, neglect or maltreatment as children.