The impact of dementia on family and carers - Janis & Richard

17 August 2023

Janis and Richard

I’m Janis and I cared for my husband, Richard, who had Young Onset Alzheimer’s disease.

It was a long and arduous journey to get an official diagnosis. I knew I had to do my own research, seek help from other experts and continue to advocate for his health to be a priority. 

Although my husband sadly passed away in 2015, in his memory, I continue to advocate for the health and well-being of those living with Alzheimer’s and dementia. I also use my platform to help other carers that deal with mental and physical health problems due to lack of support which results in burnout. 

I have partnered with MedicAlert because they not only support people living with Alzheimer’s and other forms of dementia but also provide tools to provide additional peace of mind to carers.

I wanted to share my story to highlight the ups and downs of life as a carer when a loved one is living with dementia, before and after a diagnosis.

How it all started

Our story begins with my husband, at 57, confronting a series of traumatic events that would test our resilience in ways we could never have anticipated.

The initial blow struck in the form of a mugging at a cash machine. 

Then, news arrived of the 7th of July London bombings, an event that hit dangerously close to home, with my husband’s nephew being severely injured.

As we struggled to find our footing, my husband faced yet another challenge - an unjust dismissal from his job. This deepened the emotional and financial strain we were already navigating. It was during this time that I began to notice shifts in his behaviour, prompting us to seek medical guidance.

Our journey through the medical system commenced with a diagnosis of depression. 

Antidepressants were prescribed, yet despite gradual increases in dosage over the course of a year, it became increasingly evident that something more complex was at play. His confusion, difficulty with words, and diminishing self-assurance persisted, prompting me to delve deeper into his symptoms.

After extensive research, a question began to take shape in my mind: Could Young Onset Alzheimer's be the source of these challenges? I approached our doctor with my concerns, only to be met with scepticism due to my husband's relatively young age. Instead, the doctor offered a diagnosis of PTSD and corresponding medication. As time passed and dosages increased, it became clear that a more comprehensive understanding was needed.

The moment of diagnosis

I continued to seek medical guidance. It took seven months before securing a referral for Young Onset Alzheimer's testing.

During this time, I also found myself engaging in a battle for justice surrounding my husband's unfair dismissal. In a remarkable turn of events, we emerged triumphant.

Janis and RichardThe moment of diagnosis arrived, confirming my suspicions. Armed with this knowledge, I resolved not only to care for my husband but to raise awareness about the many facets of dementia. Our three-year journey to diagnosis had transformed into a mission to make a difference.

This mission led me to organisations such as Uniting Carers, Dementia U.K., and TIDE (Together In Dementia Everyday) Carer's. Joining their advisory group allowed me to channel my experiences into tangible support for others facing similar challenges.

We came across Admiral Nurses who were able to provide the support we so desperately needed. After months of anticipation, we finally gained access to their expertise and guidance. Their practical advice and support were invaluable.

Balancing caregiving, work, and a semblance of normalcy became my daily reality. Enlisting the help of a daytime carer while managing a full-time job meant clocking in over 90 hours a week between caregiving and professional responsibilities. It was physically and emotionally demanding.

As time pressed on, challenges evolved. Basic tasks became monumental, and his health deteriorated further. Despite my commitment, the strain began to take its toll, leading to me reaching carer burnout. 

With a heavy heart, I made the difficult choice to move my husband into a care home. It was a decision born out of love and an understanding that his needs were now more than what I could provide. I visited him daily and watched the progression of his condition. 

On July 28, 2015, his journey came to a close. 

The loss was immense, yet as I reflect on the path we took - a path marked by ups and -downs, and boundless love - I am reminded that our experiences possess the power to shape not only our lives but the lives of others.

In honour of his memory and the countless individuals and families impacted by dementia, I continue to champion awareness, support, and understanding for those living with dementia, and for their carers. 

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