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An Unforgettable caregiver shares her experiences of caring for her husband who is in the later stages of dementia

When was your husband diagnosed and how did it happen?

He was diagnosed by a GP seven years ago. He was a doctor himself, and it was a former colleague who spotted the symptoms. He didn’t carry out any tests, but we made an informed diagnosis as I am a nurse. We didn’t formally tell my husband about the diagnosis as his GP was against it, and my husband would have refused to acknowledge the diagnosis. Interestingly, despite my husband being a doctor, he had no ability to self-diagnose.

Looking back, were there any earlier signs that you recognise as the early stages of dementia?

‘My husband used to complain that when reading, the sentences sometimes blurred together. He thought it was due to a cataract, but I am sure it was the first sign.’

How did you feel at the time of his diagnosis?

‘Being a nurse has its advantages when it comes to dementia, but it also has disadvantages. I was aware of what was ahead of us, and felt very saddened by it.’

How did you tell people and what was their reaction?

‘I was always very open with people, and on the whole, their reactions were favourable. Some friends have drifted away – I think they feel helpless. I have one friend whose husband had the same diagnosis, but he has since died. She has been my real rock and recommended the care home that we eventually moved my husband into. Other friends have been very supportive where they can, but it is the people who are going through this journey who are the most helpful.’

What challenges have you faced so far?

‘Dementia led to my husband struggling to read, write or count, and doing simple tasks has proved very difficult. He struggled to read letters, and would blame his eyesight, but fortunately, I have always dealt with the finance in our family, so he didn’t have to struggle with that. When symptoms began, he was still working, so he constantly mislaid things.

He also suffered a mini-stroke (known as a Transient ischaemic attack or TIA), but thankfully he recovered from that very quickly. However, he did have to stop driving, which he was happy enough to do, and I was very happy about as I had sat behind him in the car on occasions and did not like what I was seeing!’

Have any particular products helped during the dementia journey?

‘We bought him a simple mobile phone although he didn’t always remember to turn it on. He also had a Kindle which he could listen to audio books on because he was struggling to read words – his favourites were Charles Dickens novels.’

Have any services made a difference?

‘For a time, social services did provide carers who took him out, but finding suitable carers was a nightmare. When he went into full time care, they continued to take him out, but unfortunately, he had a bad fall and deteriorated too much to benefit from this service.

Has your experience of living with dementia been better or worse than expected? Has it changed your perceptions of it?

‘Having lost a daughter to cancer, this has been a far worse experience. My husband and I have been married for 56 years and to have to watch the person that is your best friend, lover and father of your children slowly disintegrate is just awful. He is now in the last stages of his journey of which he is fortunately unaware, but for those of us who love him, it is heart-breaking.’

What has been the main lesson learnt from your experience?

Seek help as soon as possible, it’s a long journey.