OPINION

Living with Alzheimer's: fulfilling a wish

28 January, 2012

My father may have Alzheimer’s but he hasn’t lost his sense of humour!

The other day, while helping my mum to change my dad, I said to him “Do you come here often?” “Only in the mating season” was his quick reply. It never ceases to amaze me the complexity of the mind; he doesn’t know me or where he is but ask him his birthday and he can recite it perfectly.

Another week has passed. The GP has been and my father has another chest infection. This explains the wakeful nights and increased confusion. He has only been out of hospital for two weeks and my mother and I feel quite low at times. I think it has something to do with the fact that we both know it’s not going to get any easier - if anything it will get worse; how long that will take, we do not know.

If you think of a patient who has an operation or a treatable illness you latch-on to the fact that it may be weeks or months for recovery, but hopefully they will get better. With my father we do not have that to look forward to. Alzheimer’s is a disease that will continue to progress and his health will decline. Further, my mum tells me that it is like she has lost her best friend - they went everywhere together and have never been apart. He is her life. She misses their conversations and not being able to go out and enjoy life together. Her life has completely changed; it is now dedicated to caring for him and she is adamant that my father will not go in a home. I support her, however, my concern is whether the resources in the community can allow her to fulfil this wish.

My job now is to ensure that mum gets the help and support that she needs so that my father doesn’t end up in hospital unnecessarily. I have self-referred my dad to the community nursing team and a community sister has been out to do an urgent assessment. Her priority is to try and get him mobile again and she has admitted him to the virtual ward. I have managed to get hold of the memory nurse and mum has finally been told how much my dad’s care is going to cost, although it doesn’t look like he will qualify to have his continuing health care costs met.

Being a carer is like being on an emotional rollercoaster; however, they do say “knowledge is power”, so I am turning this frustration into reading everything and anything to do with dementia - and there is a lot of information out there. Did you know there is a Dementia Care Strategy or end of life care pathway for Dementia? No, neither did I - but I am taking this information and using it to make sure my father gets the care he should. I am also tweeting so much that my thumbs hurt and am in contact with many carers and health care professionals in a real “virtual community” for dementia . However the best bit of this week has been finding the community sister - a friendly voice at the end of the phone whom we can call if we need help or advice. Although, my questions now are: why did I have to go out and find all this information and help on my own? Surely if you have been diagnosed with Alzheimer’s, the support and care should be in place to take you along that journey?

Sally

Readers' comments (5)

Anonymous | 2-Feb-2012 3:53 pm
sorry to bang on about the same old thing, but again: where is the care co-ordinator in all this? can someone explain why this person's needs are not "complex" enough for the cmht to allocate someone?

this is from direct gov

http://www.direct.gov.uk/en/DisabledPeople/HealthAndSupport/MentalHealth/DG_10023435

"Care Programme Approach (CPA) assessment
CPA is a way of co-ordinating community health services for people with mental health problems. It means that once you have an assessment detailing your needs, one person will be able to co-ordinate all aspects of your care. For example, this could be your medical and social care and community services available to you. This assessment will be carried out by a care co-ordinator. Care co-ordinators are also sometimes called keyworkers or case managers.
Your assessment may include:

your personal history, including any previous treatments that have worked for you
your social history, including family details, your income, whether you are employed
the symptoms of your illness
how long the doctor thinks you will need treatment, particularly if it is likely to be long-term
what your needs may be - both health and social
The care plan
The care co-ordinator doing the assessment will write up a care plan that you then sign if you agree with it. You can discuss any changes you would like to make.

The written plan will include:

the name of a care co-ordinator; this person will co-ordinate the different elements of your care
details of where you can get help 24 hours a day, 365 days a year
what you, your carer or care co-ordinator should do if your mental health deteriorates rapidly
arrangements that have been made if your care co-ordinator is unavailable or part of the care plan cannot be carried out at short notice
arrangements for regular reviews with your care co-ordinator
Your care plan will tell you:

the name of someone you can contact if you need anything
which of the services offered by the community mental health team you can use
who you should see"
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Anonymous | 2-Feb-2012 5:58 pm
but what about those who do not have nurses or doctors in their families and are not able to do all this searching on their own? I think elderly couples where one is a carer need all their energy to care and not spend hours on the internet or anywhere else searching for the relevant information. besides many elderly people do not use the internet. what sort of community do these people live in who fail to provide them with the support they need?

we all know how time consuming and frustrating searching for answers to queries can be, and as professionals or those who have someone with dementia in their family, we know how desperately hard and lonely this can be and especially for an elderly partner/spouse of many long years.
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Anonymous | 3-Feb-2012 3:07 pm
@ Anonymous | 2-Feb-2012 5:58 pm

Q.) but what about those who do not have nurses or doctors in their families and are not able to do all this searching on their own?

A.) care co-ordinator

Q.) I think elderly couples where one is a carer need all their energy to care and not spend hours on the internet or anywhere else searching for the relevant information.

A.) care co-ordinator

Q.) besides many elderly people do not use the internet.

A.) care co-ordinator does.

Q.) what sort of community do these people live in who fail to provide them with the support they need?

A.) a community with a mental health team that SHOULD allocate a... well, i'll let you fill in the blank.

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Anonymous | 3-Feb-2012 3:38 pm
Anonymous | 3-Feb-2012 3:07 pm

@ Anonymous | 2-Feb-2012 5:58 pm

all well and good but you need to know about the existence of such care co-ordinators in the first place and how and where to contact them. don't rely on a GP to volunteer such information!
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DH Agent - as if ! | 6-Feb-2012 3:11 pm
My mum had periods of 'being elsewhere' but only significantly so during her final few weeks of life. Even so, it made me wonder about the mental changes involved.

I had thought that the patient 'somehow stays in the now, but forgets things' but it didn't seem to be like that for my mum. It seemed, when I later though about it, more as if she had forgotten everything which had happened since a particular date - as if to her, it was 1975 (or wherever she was) and nothing since that time had happened. And it seemed as if the time might be variable - so is it that your brain makes sense of what it can internally remember, by going back to a tiem when it can put together a coherent set of memories ? It might be terrifying to wake up 'in 1965 but with a 2012 world around me' which might explain some things !

Sorry if that was a bit off-topic.
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