Living with Dementia

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Living with and talking about dementia. I agree that we need to talk about the problems associated with dementia and living with dementia for support persons and people with dementia. We need to discuss them in order to educate and inform. We also need to be sensitive to others circumstances. I have worked long and hard (and to continue to do so)to provide information and support for people living with dementia especially LBD. However, when my father died after a long battle with this disease,the last thing I would have wanted when I was out in a social situation was to hear someone discussing persons with dementia. The wound was too raw at that point. I also recognise that there have been times where in my desire to spread the word I have overstepped the mark. This occurred simply because I did not consider the feelings of others, I did not practice compassion. To override the sensibilities of others is not a good tactic – we cannot know how another person is feeling, what they have experienced.

Additionally, I saw a poster online, one used at an information session that talked about “phasing out all institutionalised care”. I have not seen the presentation and as such, I have not had the poster defined within the context of the speaker’s notes; I have seen it only as a stand-alone comment on Facebook. As have many others. What exactly does this statement mean?

Is this a discussion about community care v’s institutionalised care?
“Community care is about how the community looks after its members. What skills and resources does a community have?
Community care is …
Informal, where there are no rigid guidelines or principles that define the service. Is not bound by government policy or practice.
Spontaneous, where the service is temporary in fulfilling a specific need at a particular time and in a particular setting.
Relies on community members to provide the service.
About the members supporting each other.
A value in being a part of the community.
Having something to contribute to the community.
The amount of support provided is directly related to the existing skills and resources of the community.
Where a person has no existing communities (living, recreational, education or employment), that person will be disadvantaged in not being able to fulfill his/her needs.
Where is the line drawn between community care and institutional care?:
I feel that community care is about ordinary community members getting together as a group to provide for the needs of others in their community.

Institutional care is more organised around a specialised service that provides specalised skills and resources that are not available in the wider community, to a group, whose needs can not be fulfilled within the wider community.
When providing the most appropriate care for people with high support needs …
1) The community is not where the person is living, but where the person participates, shares experiences and has valued relationships with others.
2) People with high support needs will always need support structures as a part of their lives.
3) The amount of participation in a community (living, education, employment or recreation) is directly related to the skills and resources of the person, and, the skills and resources of the community that the person wishes to participate in.
4) Institutions are going to be around in one form or another whether we like it or not, It is the way that they are used that is the problem.
5) The institutions of a society towards a particular group determine the way the group participates in society.
6) The institutions of a particular government department, organisation, profession or service define the way the person is supported within that society.
7) Facilities that support people with high support needs do not need to be the nursing homes or prisons but can become warm inviting community places that offer a range of services to the community, as well as be a part of the wider community within that society.
8) People with high support needs are a minority group in our society, and will have the same problems as other minority groups in being a part of society.”

There will always be situations where PWD cannot be cared for at home. The care support person may be ill, old, cannot cope, or have no additional support, or be the person providing financial support. The person with dementia may be unable to undertake their day to day living tasks without assistance or supervision. They may require lifting, turning. They may be violent at times. It may be difficult to keep that person safe, even after turning your home into a fortress. They sometimes show paranoid behaviour and suffer from delusions.

PLEASE do not make people who make the decision to place their loved ones in supported accommodation, including lockdown units, feel shame or guilt over this action. Sometimes there is no other recourse.
While I applaud the actions those who continue to strive to make the world a better place for those living with dementia, do not forget the family and loved ones who are also impacted. We need more resources, more funding for research, early diagnosis, better medication regimes, better training and understanding by medical staff, none of this is in dispute.

We also need to recognise this is a disease with over 280 complex variants. A disease, which in its final stages sometimes cannot be managed without medical intervention and often placement in a facility.

There will always be those who walk away from one who has a terminal illness, because they are weak, or can not face their own mortality, or because they cannot forgive how that person has treated them throughout their lifetime. However, the majority of care support persons, put their lives on hold, suffer financial, personal, emotional and physical hardships in caring for a loved one.

There is a saying when dealing with this illness, “you meet one person with dementia, you have met one person with dementia, no two cases will follow the same path.”

There is no easy answer, no one size fits all in this equation.

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About lindandsam

Linda is a poet and writer. As a mature aged student, she completed a Bachelor of Creative Writing and is now a postgraduate student at the University of the Sunshine Coast (USC). Published in the USC Storyboard, 2015. Self-published ‘Where is Gedhum Choekyi Nyima?’ For the Tibetan Children’s Village, Dharamsala, 1997. She lives in the Sunshine Coast Hinterland and shares her life with her partner and their four-legged fur babies Hugo and Tashi-la..

One response »

  1. I tried to keep my mother in her own home and provide care through various Government agencies. However Mum conned them all into believing she had full faculties whereas it was all make believe and she could never recall what she had told them the minute they left. However her anger, obsessions and cruelty were only displayed to me along with phone calls every half hour demanding I obeyed her demands. Our GP realised her bruises and cuts were the result of her falls, many when inebriated or wandering the streets forgetful of where she lived. Putting her into aged care was the only option and although she conned them too into putting her in ‘low care’, within a couple of weeks she had to be placed in ‘high care’ when the full extent of her dementia and Alzheimer’s became very clear. Here she got 24 hour care, nursing, hygiene and dietary needs supervised. And me? I got a life free from guilt, abuse and almost suicidal anxiety over her.

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