Loving someone with dementia

My own story.

It’s hard. Damn hard to keep loving someone with dementia. My mum was placed into a residential care home suffering from early-stage dementia.

The antecendents were plain to see. A long gradual spiritless decline. A protracted surrender into dependency and regression into infancy. She became a child but a child who had forgotten how to speak English. She would communicate in Italian dialect but it made no sense. I would sit there and try to converse with her. I knew ~I could change the way she felt when she saw me. I’d hug and kiss her and she would chuckle sweetly. Physically, she presented well. Some of the staff would comment on how young she looked. Her skin was white milk chocolate with few lines but her grey hair which soon turned white betrayed her.

I had been told the bad news in advance. Few residents last more than two years in such an institution before they pass away. She managed seven. They were seven long sad years of unfailing visits, cups of tea and biscuits and brought in chocolate. My mum always managed a smile. I remember one-day she fell ill and was taken to hospital. I drove up to see her to see if she was alright. And then whilst she was supine on a hospital trolley she said in an Italian-English accent: “You been busy?” and with those words I felt she was momentarily cured and that God existed.

Over time my mum lost the power of speech. She would sit there bemused in front of me and I would be exasperated at the futility of trying to make conversation but I carried on telling her what I had been up to – to pass the time and really make myself feel better but I knew I had lost her in a new, profound way. The saving grace was that she seemed to still recognise me momentarily. There was a glimmer in her eyes as if something silent was communicated.

I’d always introduce myself to her in Italian as her son; as if this might jog a long term memory in the hope she could reach that far. Eventually the dementia worsened and she lost the ability to swallow. She had to be fed food specially prepared by one of the staff. That was another blow.

In the end she succumbed after what was a painful admittance to hospital. I witnessed her with laboured breathing and beads of sweat across her brow. The medical team said: “It’s in the lap of the Gods”. She was discharged to a palliative care unit back at the residential home.

I remember a phonecall being made at 4.15am. I had to come quickly. My mother was not well. I knew. I arrived 2 minutes too late. The staff said she was gasping, waiting for me. There was nothing I could do. A doctor was called and I observed her perform checks around her heart with a stethoscope. I knew. There were no signs of a beat. And that was it.

My mum was told she had challenging behaviour. In reality she didn’t want to go into a residential care home. If you’re in the position of placing a loved one into care think long and hard. It may actually be good thing – you can’t cope, it’s causing arguements with your partner, you’re worn out juggling looking after a loved one, a partner and your children.

Do your due diligence on the said home or homes, chat to the staff, look at their care record and rating. Sadly, somebody stole my mum’s wedding ring off her finger and the answer I got did not satisfy. You want to be sure that the manager, the staff and the care home are doing all they can for your loved one.

At the home my mum was at; there was an alleged case of abuse which made the local papers. That’s not meant to scare you – it’s pretty rare but the home has a responsibility and is monitored by an inspectorate. There is no place for abuse in the system. Period.

Italians have a reputation for family first, and I personally know of friends and relatives who do their utmost to accommodate their elderly loved ones at home or in a specific abode for them to keep them under a watchful eye as well as keep a strong family bond. It’s not for everyone, and doesn’t work for everyone nor does it mean you have the finances to do so but my advice is do your due diligence and ask questions of the proposed options. Do not slavishly follow the advice of the State.

Looking back, I can see my mum was well looked after 99% of the time.

The care system needs a radical overhaul as it is – and will be big big business for private operators but the safeguards need to be in place and the care profession needs a image makeover as well as proper continued professional development in place to make it an attractive career choice.

My mum was well liked. She had a lot of fight in her and was fiercely independent – an attitude that should be supported in the community until she was no longer able to.

In Italian hospitals – there is a concept of ‘#assistenza‘ which means a family member or next of kin should be present. There may be only so much you can humanly do but do what you can for your loved one. You’ll be glad you did for your own sense of peace and theirs.