Erla skrifar frábæra grein

Erla Jónsdóttir hefur talað opinskátt um upplifun sína á að greinast með Alzheimer. Hún er meðlimur í vinnuhópi einstaklinga með heilabilun hjá Alzheimer Europe. Erla skrifaði frábæra grein í árbók Alzheimer Europe fyrir árið 2024. Greinin er á ensku og má nálgast hér á bls. 84

Hér að neðan er greinin:

My name is Sigríður Erla Jónsdóttir, I’m 68 years old, happily married, and a proud mother and grandmother. I have a diverse work background and consider myself a talkative extrovert who loves being with people and helping out. Togetherness with family, friends and partners is very important to me I was diagnosed with Alzheimer's a few years ago – my family and I navigate life with this disease together. When I became ill, I held a management position in a large public forum. Having a job is not just about earning money. It provided me with a rich purpose, a daily routine, satisfaction, and I benefited from the relationships and connections formed through work. All of these factors affected my daily life and well-being. But the day I was diagnosed, I was forced to quit the job I valued so much.

Eventually, I found a life-saving substitute for my previous work: Seiglan, a fantastic daycare centre run by Alzheimer Iceland Individuals with Alzheimer's disease, like everyone else, have important values Seiglan assists me in maintaining and upholding those values. Maintaining relationships with my loved ones is of utmost importance to me. But creating new relationships with people who meet me on my terms is highly valued It provides a sense of continuity and belonging I want to be treated with respect and dignity Involving me in decisions about my daily care helps preserve my sense of self-worth. Maintaining my independence is important and finding ways to support it empowers me. Activities that bring comfort, pleasure, and a sense of accomplishment can greatly add to my everyday quality of life.

Ultimately, preserving and enhancing the overall quality of life is a fundamental value. This includes physical comfort, emotional well-being and meaningful engagement with the world around me. By understanding and honouring these values, Seiglan provides compassionate and effective support Seiglan is a resource I currently have access to and cherish so much. But what about resources I do not currently have, but would like to have access to? The wish list is of course long, but I will focus on two issues I find very important. First and foremost, I would like to see more support for family members. Support for family members is crucial for several reasons It helps to manage feelings of sadness, frustration and anxiety, reducing the risk of burnout and depression. Continuous care without proper support is unsustainable. We need to develop better support systems for our family members.

My second wish is for improved living facilities that better accommodate our diverse needs. Current options and methods lack diversity, neglecting personal needs. Additionally, the most convenient solutions in care are often prioritised. I am not so concerned about my illness itself, I am more concerned about how we treat it. Or as Maslow concluded: “If the only tool you have is a hammer, it is tempting to treat everything as if it were a nail”. My husband and I often talk about how great it would be to move to an apartment in a supportive community that aligns with the values we discussed regarding Seiglan, fostering stronger relationships with family and friends. Today, people listen to what I want, feel and think I can decide what to do and I am free to go wherever I want to go. Will this still be the case when we have to move to a special care home? Will we be forced to move too early?

After a lifetime of freedom and independence, who would want to be locked up in a place where loneliness echoes through endless corridors and you only get to experience the outside world through a window? Who wants to spend their final years, in a system, where your voice is no longer relevant? We need a twofold solution. Firstly, we require living arrangements that enable us to live happy, meaningful lives, independently. Secondly, in care homes, we must focus on caring for each person as a unique individual with a rich emotional life It is vital to prioritise quality of life over merely counting years. Our feelings, needs, and desires are as important as anyone else's And please remember, we are human forever!