Your Story is a series of interviews with carers. We want to hear your stories and promote the amazing job that carers do – if you would like to share your story then get in touch with Tara at [email protected]

 

My story is one which to a greater or lesser degree is probably repeated by the majority of people like me who care for dementia partners or loved ones. But there was another issue…

This is the story of Susan and her husband.

…he started to be “different” in December 2012 we think there were changes earlier but that moment when he became depressed and couldn’t get back was right then.

It was slow at first; if I wanted to go out I made sure his medication was in an obvious place and his lunch ready but I ultimately, I could leave him on his own. As the months progressed, I noticed that on my return from these rare excursions he would be agitated and would have lost things which he would list for me to find.

My parents lived in Australia and in 2016 two things happened. My mother who had Alzheimer’s and lived with my father, fell and broke her hip and the same month my husband collapsed.

I was torn with what to do, but with my daughters I made the decision to go to Australia after my mother had been discharged from hospital and into the care of the nursing home near my parents’ home.  I remember taking my husband to the doctor and telling the GP that I was going away and that he needed medication for that period. The doctor looked at me and said the magic words:

“He shouldn’t be left alone.”

For four years I had been visiting this doctor with my concerns and worries for my husband. The GP would test him and would talk to him; however, his own communication skills were limited. Therefore as confused as my husband seemed to me, he would gather his energy and hold relatively normal conversations with the doctor.

I was told:

• He’s getting on (he was then 70)
• His hearing doesn’t help
• When he stopped using his left side, he was treated for Bursitis When I voiced concern over his driving, I was told it was my responsibility to talk with the police.
• Because he passed the memory tests given by the GP we were not referred to the Memory Clinic.
• His voice disappeared and he was treated for gastric reflux
• And his reactions slowed which was ageing.

So to hear I should not be leaving him after I had been told he was fine for four years made me very stressed.

My issue is that I was not believed.

No one knows a person better than the person who lives in the same house and I knew that he was slowly turning into someone I did not recognise.

We moved from East Yorkshire in 2017 to Malvern where, shock of shocks suddenly I was not only believed but he was diagnosed with Dementia with Lewy bodies (Parkinson’s Disease was diagnosed in A & E after he collapsed). The Primary Care Trust here are wonderful and I cannot tell you how often we have seen a medical professional who has turned to me and said  “And how are you?” It was the first time after five years anyone had asked me how I was.

But this has weighed heavily on me. The level of disregard for my opinion and observances regarding my husband’s health has made me doubt my own abilities to care for him, whether I was making it all up.

My mother passed away with me at her bedside in 2016 and on my return I was suddenly caught up in the carers role again so I was unable to grieve for her. But I knew that in order to care for my husband I needed to care for me. So I have had two blocks of excellent counselling.

The first series to come to terms with losing my mother and leaving my father so far away with a brother whose wife was dying. And I am so glad I went to counselling every week.

And the second series after moving here to work out where the awful anger was coming from. It was because deep down no one believed me and I was left to deal with one of the saddest bereavements of all; living with someone whose personality was slowly disappearing.

When I attend Carers Groups I know I am not alone. We are this little army of tired men and women doing our best and I am proud to be one of them. I leave feeling empowered and emotional at the same time, but I know I am not alone.