Care at home or care home? A decision for all families

Could more be done to prepare people affected by dementia for decisions about care and a care home? Peter, whose wife had dementia, shares his thoughts.

Peter Riley cared for his wife Myra in their family home when she was diagnosed with Alzheimer’s disease. Here he shares his experiences and tells us why he thinks more should be done to prepare families for decisions around care.

Peter and Myra's story

Peter and Myra walking and smiling.
Myra and Peter hiking in the mountains, a couple of years after her diagnosis of Alzheimer’s disease.

Care at home or care home? Most people want to live and die at home, but circumstances often lead to hospitalisation or living in a care or nursing home.

These decisions rest on the conditions of home life dictated by the availability and ability of a carer, as well as the convenience of the building.

Families often have the decision taken out of their hands because, due to unpreparedness, they succumb to official or peer pressure. But it is your choice.

My experiences of caring at home

My wife Myra showed signs of Alzheimer’s disease two years before formal diagnosis, but she was treated for depression.

I was fortunate in that my daughter is a nephrologist and has considerable experience caring for frail older adults, and my daughter-in-law is a children’s nurse dealing with terminal illness.  So, I was prepared in advance for a caring future.

Myra lived for ten years after diagnosis and died peacefully in her own bed. In the early days we continued close to normal, even in our rambling, but slowly the disease took its toll; and I became Myra’s full-time carer.

Bob, my friend, is still caring for Sylvia at home, more than nine years since she was diagnosed with vascular dementia and seven years since she was diagnosed with Alzheimer’s. He says: ‘She thinks less clearly, but feels more intensely.’

 

Sylvia smiling.
Sylvia, who is living with dementia and being cared for in her own home.

 

How can carers be prepared?

Most potential carers do not have access to expertise within their own family and often find it difficult to understand the likely progress of the disease and how to negotiate the health and social care system.

A possible solution would be to invest more in equipping families with the knowledge and resources needed to care for their loved ones at home and to do this as early as possible.

The potential prime carer needs to be aware of the early signs and to have a frank explanation of the future progression. They should also be told what sources of information are available as a right and to have the facilities in the house surveyed and recommendations for timely modifications.

A change in primary care is needed to formally recognise the importance of the family. This will ensure that knowledge about the essential legal and practical help that will be required is made available at an early stage and that such help continues after diagnosis.

Many areas for improvement were identified by Jeremy Hunt in a speech delivered on 20 March 2018 entitled 'We need to do better on social care.'

Let’s act now to encourage, inform and prepare in advance to care at home.

Are you caring for someone living with dementia?

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6 comments

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Thank you Peter for sharing your story. There is a link to my website from this page which I drafted as a Memorial to my late Wife Pauline, & to help people get CHC from our NHS. Alzheimer's Disease is a "Primary Health Need" so a Personal Budget should be obtained to fund all the Care needs in your own Home, or a Nursing Home if required. This is not means tested unlike "Social Care".

I had some training via the Carers who called daily but a lot more could be done to help people as you say.

Best wishes.

Peter Garside

Thanks Peter, I found the allowance enabled me to buy Care so t.hat I could join a trek with Ramblers occasionally. That helped keep me active physically, my mental state was kept active by the work I could do at home for Alzheimer’s Society Research volunteer network reviewing grant applications and attending panels for which my expenses including Care at home for Myra in my absences was reimbursed.

If readers have a view on the blog come to the Conference on 22 May and participate in the discussion following the speakers at the Caring for Carers session.

than k you for that, Peter. IT helped me a lot.
MY husband of 88 is in early stages. I wish I could find out the speed of progression.
If I don't get irritable with his memory loss we can have a safe and peaceful time at home. reading walking the dog.
I am still writing.

Dot. Progression varies with the type of dementia. Sometimes medication can slow the progression. The GP should advise. My personal experience is that keeping people calm and loved as you are doing helps enormously. Both my parents had dementia in their early 80s.I found that short bursts of pleasure (a walk, tea and cake), music especially, seemed to help bring back warm memories and remove the fear. You sound as though you are doing all the right things. Everyone gets irritable at times. It's understandable and unintended.

Maureen, yes you are correct. Myra died peacefully in her own bed in 2016. My blog is an attempt to get a discussion going to prepare more people who want to care at home to have the information and services early enough to do it with confidence.

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