Experiences & insight

1. The Dreaded Phone call
2. Paranoia
3. A Taste of Empathy
4. Secondary Impacts
5. Sound Advice

The Dreaded Phone call

I was a sandwich generation carer – a single parent, working full-time whilst caring for a young teenager and my mother, who had dementia.

The telephone call to my work at about 3pm from the warden at my mother’s flats a few miles away was a very scary experience.

Apparently my mother had told the hairdresser that she could not have her hair done ‘because of all the Irish people who were coming!’ The warden felt this odd behaviour warranted an urgent check-up by her GP.

There were no appointments left that day, but they told me to go and see her urgently and if necessary call an ambulance! My heart was racing now. I managed to get messages to my boss, my car share colleagues and my team, then left work.

When I arrived, my mother was dressed in her winter coat and hat, her handbag open with knickers hanging out of it. A case was on her bed, half open, with random things in it. I asked her where she was going.
“The boys are coming to get me” she said.
“Who?” I asked, confused.
She mentioned her brothers, two of whom were deceased.
“Who?” I asked again, totally flummoxed.
At this point she realised that something was not quite right, but she was not sure how to correct it. Taking my late father’s photo off the wall and holding it to her chest, she lay on her bed and said: “None of your business!”

Then I noticed that her plate was sitting empty on the dining table with a full glass of water.

Realising that she had not had her Meals on Wheels lunch, I phoned the provider. As she had not ordered anything for that day, they had assumed she was away. My mother, insisting on filling in the meals on Wheels order form herself, had missed a day. It seemed she waited, laying on her bed for her lunch to arrive. She did not make herself anything to eat. She did not drink her water. She just waited.

I did not realise until then how quickly dehydration can seriously affect the elderly. I took her for a meal and drink and she gradually improved.

By the time I arrived back at my home it was quite late in the evening. My daughter had been alone for longer than I would have liked, I was shattered and emotionally drained.

Dementia carers may occasionally have to leave work suddenly to deal with an emergency which they could not have predicted or prevented. This is a very traumatic and emotional experience. They don’t know what they will find or how long it will take. Your understanding and support will be a huge help.

Paranoia

My mother was on the telephone to one of my sisters, complaining bitterly that I had been in her flat drinking her ‘special wine’ (sherry) and moving things or taking them, while she was out. My sister tried to reason with her: “Mary works full-time and is always very busy – she hasn’t got time to be doing that.” My mother’s quick response was: “You wouldn’t think so, would you!”(knowingly)

I wanted my mother to socialize, as I knew she was very lonely. I could not be with her during weekdays because I worked full-time in a responsible job. As a people person, being with other people would have been good for her mental wellbeing. I wanted her to be independent for as long as possible. But as I had a key to her flat, she thought I was coming in whenever she went out – so she stayed in her flat. I could not give up the key as I might need it in an emergency.

Dementia carers often have to cope with paranoia. It is really upsetting to the carer when this is preventing the person from having positive experiences. It is also very emotional when you are being accused of things you haven’t done. Dementia carers need a Carer Buddy to chat to when the going gets tough. Someone else who has been touched by dementia works best.

A Taste of Empathy

Earlier this year, a work colleague of mine was talking to me about his recent cycling accident, which resulted in his being knocked unconscious, and how he felt that it had given him a temporary sense of how someone with dementia might feel:

“I had the accident in July but suffered (and still suffering in October) with post concussion syndrome. The symptoms of this were are mainly dizziness, short term memory loss, (especially for names of people I know well) – and an inability to recall specific words, which I found immensely frustrating, as it felt as though they were just within reach yet denied to me. People I was speaking to (who were aware of my condition) would politely wait a few seconds, then help me out, but it was still uncomfortable.”

“The incident I wanted to speak about was the day I went shopping in Exeter, just a few weeks after my accident. I was with my wife, but as is common on these trips, I wandered off to look at ‘man shops’.”

“As I was approaching a busy junction, I became aware of the sheer amount of ‘things’ that were going on around me; cars, buses and people, all coming and going in different directions. I just couldn’t deal with it. I felt an overwhelming sense of what I would call ‘bewilderment’ made worse by the memory of just a few weeks ago when a situation like this would not have bothered me at all – and the worry that I might not recover from my injury and that this would be how it was going to be for the rest of my life.”

“I wanted to go home.”

“My experience may, or may not be similar to that of a person with dementia, though some of my experiences appear to match descriptions of the symptoms. Hopefully I will never know the truth of that. However I know that I didn’t like it very much at all and the emotions I felt would have driven me home and I would have stayed there. I certainly feel that my first hand experience has given me a certain empathy for those that endure this disease without hope of recovery”.

Secondary Impacts

One important aspect of the Dementia Carer Friendly Met Office project was raising awareness and understanding of dementia by becoming Dementia Friends. Colleagues had a better understanding of what dementia carers are dealing with and the sessions produced some interesting feedback. Here are a few examples:

  • A director came to tell me that as a result of the Leadership Team becoming Dementia Friends, they were now taking all carers into account when making decisions at Board level.
  • A colleague reflected on a family decision to keep her, as a four year old, apart from her grandmother who had been diagnosed with dementia. At the time they thought this was the right decision. She told me: “My grandmother went on to live many years with her dementia. I now realise that whilst she may not have known who I was, I could have made her life better for being in it. You have made me a better person.”
  • Another colleague had elderly neighbours who he had not known before the wife’s dementia. This made communication with her very awkward. He decided that if he heard in the future that someone had been diagnosed with dementia, he would try to visit them as soon as possible. Finding out about their history before it is too late would make it easier to communicate with them in the later stages.

Sound Advice

During a Dementia Carer Network Group meeting, a common issue of difficulties between siblings was discussed. An email had been received saying that the sister did not want any involvement in caring for their mother whom they suspected of having dementia. When their father had dementia, the sister, who lived nearby, had helped. The brother was hundreds of miles away and the worry of it all was hugely upsetting to him.

I pointed out that emails are not always read as the sender intended, however sure we might be that our interpretation is correct.

Then another carer gave some excellent advice:
“You must do what you feel is right and not worry about what others are doing, or not doing. If you can look yourself in the mirror and know you have done your best that is what counts.” His wife’s family had distanced themselves when his wife became ill, saying it was his responsibility. He had arranged her complex care at home single-handedly over many years as she deteriorated. As he told us how he displayed active photos of her horse riding, so carers knew who she had been, we could feel the love he felt for her. He told us: “Comparing involvement of others will only make you bitter and twisted and your health will also suffer.”

If you are a carer and you are experiencing difficulties with your siblings, I hope his advice helps you too.