Dementia Awareness week….walking in my shoes…

Have you ever wondered what it is like to walk in the shoes of someone with dementia? Or to be their husband or wife, struggling to understand how the person they have shared their whole life with is drifting into a different world – one where ultimately they may well not even recognise each other?

What is it like to be the son or daughter – frequently someone with their own family still dependent on them? Or more rarely, someone with a parent with dementia who is still a child themselves?

This week is Dementia Awareness week and it is a cause very close to my heart. I am therefore embarking upon a little Whose Shoes? style project designed to promote better understanding  of dementia care and share best practice. I am delighted with the response I have received!

I will be hosting a series of daily ‘guest blogposts’ from an individual or organisation from a whole range of perspectives … people who have something interesting to share about dementia care .

My own experience has been around several elderly family members. My Grandma, whom I adored, developed what I now know was dementia after her 100th birthday. I remember taking my new baby – her first great grandchild – to see her. She loved him, asked what his name was (Andrew), then told me it was a family name and that her brother was called that. We went round that loop repeatedly. There was much joy as each time she admired the baby afresh and delighted in the fact that he shared her brother’s name!

Fast forward to my mother-in-law about fifteen years ago. She had a terrible time looking after her husband with what,  in very non-medical language, I would call the ‘darkest form of Alzheimer’s’ . This kind and gentle man had become aggressive, paranoid, confused and unpredictable. He paced the floor at night; he hid things. Money, passports, bank books – they could be anywhere.  How she coped, I honestly don’t know.  It was in the days before there was any support or recognition of ‘carers’ – she was just a wife struggling to cope. There was the added “stigma” (as she clearly saw it) of him wandering off at the slightest opportunity.

We were 150 miles away with a young family. No such thing as ‘telecare’. They were very private people. They received no external support, yet my father-in-law thought his wife of 50 years was a ‘carer’ and would tell her it was time to go home. Hard to get into bed together on those terms. Yet, even in the late stages, there were moving, very occasional, glimpses of ‘the person’ – I particularly remember him tousling my young son’s hair.

My Mum-in-law subsequently moved up to live near us and enjoyed some very good years. The eldest two of my by then teenage children would frequently crash round to Grandma’s to watch unsuitable films and eat Pringles while she fell asleep. She would always wake as the credits went up and agree that yes, it was definitely one of her favourite films. Good times.

Dementia is bizarre. Especially when combined with OCD. It is hard for even close family members to know what is happening. My Mum in law lost weight yet she would eat huge portions when she came, regularly, for meals with us. She would make out lists in wonderful, unchanging copper-plate handwriting and one of us would get the shopping, joking that the list was always the same. Much of it was habit, deception, a very clever ‘cover-up’. She could go through the motions, say the things she was expected to say, tell me what (she thought) she had had for dinner…

This time we had first-hand, day-to-day involvement with the decline. The experience was completely different. In the early stages we had a lot of laughs – Betty could enjoy a laugh. The challenge for us was often to go with the flow. My husband found this harder than me – I’m sure it’s harder when it is your own parents. He and the children would persevere with logic – writing down instructions for appliances that had previously been familiar. Betty’s neighbour, we later learned, would come round and help with the washing machine, so that she didn’t have to ‘bother’ us.

Everything takes longer. With OCD thrown in, getting out of the house could be a long process. The happiest memories are when I succeeded in just entering Betty’s time-frame and having all the time in the world – not easy when you are really busy. I remember sitting writing Christmas cards with her, matching the people I didn’t know from an old list with cards on the mantle-piece. It was like playing snap and we turned it into a game (yes, I like making up games!). The fun came with deciding how many kisses to put on each one – I think ‘Bill and Hazel’ might have been surprised at the level of affection!

Fast forward again to the final few weeks. A lot of experiences along the way – falls, hospitals, rehab teams, care homes. No rhyme or reason as to what was good or bad in terms of service – most of it came down to individuals rather than roles. There were really compassionate people and box-tickers – we saw the best and the worst along the way.

The biggest nightmare, and I have written about this before, was being caught in the middle between health and social care fighting over funding for Betty’s care through a Continuing Care Assessment (ie trying to pass the buck, NOT fighting to pick up the tab!). I remember long meetings with piles of paperwork and five people sitting round the table discussing humiliating “domains”. We had to establish exactly HOW bad this woman, who was clearly dying, was under each category. I remember the anger and frustration, thinking the system had lost the plot somewhere as we were asked if we wanted to see photographic evidence of pressure sores and if we were ‘happy’ with the scores allocated. How much better it would be if these resources were directed at providing actual care.

So, in a nutshell,  that is why I am interested in dementia care. I had planned to write about some great good practice examples but have ended up sharing this rather personal story. But perhaps this is what is needed to raise awareness.

I was very moved by Karen’s story which has attracted so much interest and I know others are planning to ‘tell it like it is’. I hope you will read and contribute to this dementia series and I hope it makes a small but valuable contribution to the “Dementia Awareness” initiative.

About Gill Phillips - Whose Shoes?

Passionate about personalisation in health & social care. Creator of Whose Shoes? - an imaginative approach to helping people work together to improve lives.
This entry was posted in Blogs, dementia, health, in my shoes, personalisation, social care, TLAP - Making It Real, well-being and tagged , , , , , , , , , , , , , , . Bookmark the permalink.

19 Responses to Dementia Awareness week….walking in my shoes…

  1. Chris Isaacs says:

    Very well written and moving article – you have covered so many different aspects of dementia which is what is required if people are going to understand how diverse the effect of it can be and the variety of ways it affects different people.


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  4. Derek Kirkham says:

    I agree the article is well written and it really should be splashed across the front pages of all national newspapers.

    Unfortunately that will not happen though. Dementia is still regarded as a disease of the old and the fact that it affects the immediate family and not society as a whole renders it unnewsworthy.

    Forgotten are the times when the carer does not want to get out of bed because they know what awaits them. A daily grind of washing, teeth cleaning, toiletting, dressing, handfeeding, prompted drinking, cooking and domestic chores.

    Forgotten too are the times the carer sits on the stairs weeping wiht sheer frustration when it takes just under three hours to get the patient out of the bath or 25 minutes to get them into the car in the pouring rain and freezing cold.

    Not to mention the complete lack of spatial awareness which means spillages of food and drink, an inability to negotiate steps or walk from sunlight into shadow or regarding the dark lines on Zebra crossings as black holes to fall down.

    Nobody wants to know how to deal with complete silence in the house when the patient no longer knows how to speak, use language or communicate in anyway or why they have to be escorted around the house because they cannot differentiate between one room and another.

    Finally, add the instransigence of Social Services, the inabilty of Professionals to identify the likely progression of the disease, the incompetence, uncaring and idleness of outside carers and the picture is almost complete.

    D.Kirkham (11 years carer for wife with Early Onset Alzheimers disease)


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