Dementia Carers Quotes

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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.
Rebecca Rijsdijk (Portraits of Girls I never Met)
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.
Michael Bond
Alzheimer’s, senile dementia, dementia. What’s the difference? Not much for the carer. Ma is just a confused old person.
Phyllida Law (Notes to my Mother-in-Law and How Many Camels Are There in Holland?: Two-book Bundle)
Contents Beginnings 1. Facing Up 2. Getting Older 3. The Brain, the Mind and the Self 4. Memory and Forgetting 5. The Diagnosis 6. Shame 7. The Carers 8. Connecting through the Arts 9. Home 10. The Later Stages 11. Hospitals 12. At the End 13. Saying Goodbye 14. Death
Nicci Gerrard (What Dementia Teaches Us About Love)
Grief, I’ve learned, is really just love. It’s all the love you want to give, but cannot. All that unspent love gathers up in the corners of your eyes, the lump in your throat, and in that hollow part of your chest. Grief is just love with no place to go.
Martin Dewhurst (Another Cup of Tea: Diary of a Dementia Carer)
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.
Jennifer Ghent-Fuller (Thoughtful Dementia Care: Understanding the Dementia Experience)
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 Megan 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 be seen as “an intention 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 support and 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 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.
Michael Shaw Bond (From Here to There: The Art and Science of Finding and Losing Our Way)
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.
Edward Bullmore (The Inflamed Mind: A radical new approach to depression)
He did not regret his life, but he often thought about what would have happened if his grandfather had not developed dementia and he carried on his medical studies he would have become a doctor like his grandfather and he would have surely married Isabella and had several children and even grandchildren given the time that has lapsed but it was not to be and his life was mapped out to be a carer, and he devoted the past forty years to caring for people first ten of those years looking after his grandfather
Kenan Hudaverdi (Nazar: “Self-Fulling Prophecy Realized”)