OPINION

Living with Alzheimer's: accessing support

21 January, 2012

My father doesn’t recognise me anymore.

He looks at me and asks who I am. When I mention my name his face lights up and he says ‘of course it is!’ It may be brief but it is so uplifting.

My dad has Alzheimer’s and I am a nurse. I wanted to write this blog as I am now on the ‘other side’ - a nurse who is also a carer and sees her once active, loving and adoring father confined to bed, unable to feed himself or know when he needs the toilet. I always used to joke with my father that he chose well when he married my mother - that he only married her to look after him in his old age for she is 19 years his junior. How right that turned out to be, for my mother is now his main carer at home.

This weekend I went to visit. When I got there my father was sat in his chair; he had not been downstairs since being home from hospital last week as his mobility is poor. For this reason we are usually confined to the bedroom; it has become the centre of the house and I guess, therefore, his world.

The carer had been that morning and washed him. My mother fed him his lunch and then I helped her put him back to bed. That evening, another carer arrived, butthis visit was fleeting - a change of his pad and she was gone. Ten minutes in total was all that was provided, even though my parents had paid for 30 minutes. I volunteered to stay with my father that night and allow my mother to get some rest as he is not sleeping. All night he was talking to imaginary people and singing “Singing In The Rain”. Needless to say I didn’t get much sleep.

Today is Monday - a week after discharge, and my mother has asked for a GP visit as she was up all night with my father again. I have phoned the company providing the care package to complain about the carer providing ten-minute visits when it should be half-an-hour and phoned the health centre to find out what services the district nurses can provide to help us. I am waiting for the community matron to ring me as I have requested a continuing care assessment which I found out about from a community nurse on Twitter. My mother is waiting for social services to ring her and tell her exactly how much my fathers care will be now that it has increased and she has just received a letter telling us that my father has a three-month wait for an occupational therapist assessment. This is all before I phone for the community mental health team who assess once a year. My battle continues to find out who does what, how to access it and how much it will cost; I owe my father that much. It’s confusing, frustrating and sometimes makes me cross.

So what is it like? On top of all the heartache and sadness it is confusing, involves lots of waiting and is extremely frustrating. Living in a bedroom when we want to take Dad downstairs to establish a more ‘normal’ routine is hard - how can he be expected to understand it is nightime when we don’t move from the one room? How on earth do we find out who can help us with what we need to provide the best care at home for my Dad? The system is so complex - even for me as someone who is supposed to know her way around.

My aim of writing the blog is to share our experiences so that other nurses and carers can see it and we can perhaps be some help in terms of looking at things from another perspective.

Sally

Readers' comments (27)

F W | 21-Jan-2012 11:40 am
Very moving , its saddens me that its so difficult to get appropriate care & support & thats for a Nurse who knows her way around the care system.
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Bernie Mayall | 21-Jan-2012 11:45 am
Thank you for writing this. A blog can make real some of the issues and feelings people don't understand or think about. Not easy to share this kind of stuff - I did a similar blog when my Mother had a stroke - so fair play to you, and please continue. you do us all a service.
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Anonymous | 21-Jan-2012 12:28 pm
Sally, an excellent article which really makes one pause to reflect on the difficulties encountered. I seems that it is difficult to relate unless one has been a carer oneself. Fortunately my experiences were nothing like yours but nevertheless very difficult as I was totally alone with my Mum, having had to give up a super nursing post abroad, and with no support whatsoever from the GP.

situations, with such unjoined up support such as yours should not be, and what is more shocking it does not need to be. Services need to be more centrally organised and streamlined so that there is equal access and quality and consistency for all.

For relatives who are not in the profession there must be even less hope of adequate support and help.

The availability of NHS and private services must vary considerably from area to area as my cousin has given me a more favourable report of the care for her mother-in-law and has even been in praise of what she has received so far following discharge from hospital. however, this is only the beginning and the care is still not ideal but my cousin does not wish to intervene too much and complain and antagonise the carers. her husband indulges his mother but my cousin is trying to maintain as much of her independence as possible and sometimes the old lady manages to get herself up and dressed before the carers arrive but would then just prefer to stay in a chair all day and be waited on although she can still do a little more. her main problems, apart from the onset of dementia, is fear of mobilising after a series of falls and more than one hip operation, although with my cousin she does quite well. one big problem is that if she does make her own hot drinks or heat her meal in the microwave, with her frame she is unable to carry them to the table.

with my cousin she has to heat her own meals and make her drinks which my cousin will carry to the table for her. with my cousin she will walk a few steps but with her son, he does everything for her!

the main criticism my cousin has is that the carers do not communicate with her in so far as letting her know what they are doing and what 'Mum' can do for herself so in all her hard work in this direction, she feels unsupported. she realises how time pressured they are and gratefully accepts the help available as she is afraid of being perceived as too demanding and the help could be withdrawn.

they have had to get in some private help as the NHS help now winds down but which they can ill afford both having been retired for sometime, but they are totally stressed out and exhausted as they are on call 24 hours a day, but are perhaps fortunate that 'Mum' lives next door.
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Mark Cannon | 21-Jan-2012 6:46 pm
Sally thanks for sharing this which I picked up via Twitter. I may have misunderstood the request for help but we have a method for looking at how systems work that I would be happy to talk to you about if it would help in your plans for mapping. Take a look at this http://goo.gl/SSiWU and this http://goo.gl/26lL2 and see what you think. If a chat would be useful try contacting me via #vangardinhealth. If not apols and thanks again for an all too depressing story. Very well written. Wonder if the Bill will go anyway to sorting this.
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cheryl wilson | 22-Jan-2012 12:01 pm
Hello Sally thankyou for sharing this. I can empathise through both personal and professional experience. I had to leave my beloved profession through major health issues and indeed needed carers myself in the early part of my recovery and I truly understand your frustration.
Luckily for me I am now well and successfuly have returned to nursing after seven years at home. This was indeed a learning curve for me and I hope I have incorporated the most valuable parts of " being on the receiving end " to increase my knowledge and awareness whilst delivering my care once again as a nurse.
You are doing a wonderful thing for both of your parents and I know that is also no easy task as I have been there also ! I hope you find the right answers and support soon . Cheryl
http://www.jobs.nhs.uk/faceNHS/story_cp.html
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Anonymous | 22-Jan-2012 12:10 pm
the question is, whether this situation will every improve? if so, when and how? or will there just be more and more people needing care and support and others having to give up their jobs or already out of work to provide care to their relatives?

whilst there are no easy solutions, at lease in the UK, nobody with the power to make the changes seems very interested.
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sallyannm39 | 22-Jan-2012 4:14 pm
HI All,
Many thanks for all your kind comments, I intend to continue to write my experiences. I have found a report prepared by the Kings Fund and Nuffield Trust which you may all find of interest.http://dementia.dh.gov.uk/integrated-care-for-patients-and-populations-improving-outcomes-by-working-together/mproving outcomes by working together"
This report has been prepared for the NHS Future Forum
You can also follow me on twitter @nursemaiden

Once again many thanks and I hope by raising the profile of Alzheimer's and the problems that can be had with obtaining intensive support at home we can all work towards improving the care our elderly so dearly deserve to allow them to remain in their own home.
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cheryl wilson | 22-Jan-2012 4:20 pm
Hello Sally thankyou for sharing this. I can empathise through both personal and professional experience. I had to leave my beloved profession through major health issues and indeed needed carers myself in the early part of my recovery and I truly understand your frustration.
Luckily for me I am now well and successfuly have returned to nursing after seven years at home. This was indeed a learning curve for me and I hope I have incorporated the most valuable parts of " being on the receiving end " to increase my knowledge and awareness whilst delivering my care once again as a nurse.
You are doing a wonderful thing for both of your parents and I know that is also no easy task as I have been there also ! I hope you find the right answers and support soon . Cheryl
http://www.jobs.nhs.uk/faceNHS/story_cp.html
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µ | 22-Jan-2012 4:58 pm
Sally, Cheryl

inspiring stories. thank you so much for sharing them.

let us hope your experiences and projects will help to improve future care for the elderly at home and everywhere.
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John Le brun | 22-Jan-2012 7:34 pm
Thank you for writing Sally. An excellent idea to share the experiences of both a nurse and carer and lets hope that they benefit people in the future.

I can certainly relate to you, I remember the time when my grandmother with Alzheimer's was staying with us. Every lunch time I made the trip home from school to make her lunch and check she was well.

Over time though, deterioration lead to no more visits to us and mobility issues meant she didn't leave her house. Bless my grandad for the long hours he put in to ensure she was comfortable.

Now we are at the late stages where over the last two years my grandma has been in a home. However, the fight to get an EMI bed was anything but easy! I regularly visit and I fully understand the moment when you say your name followed by the brief smile in the face. The only thing that keeps the family going is to know that the home is providing excellent care and the moments when she tells a funny story and the whole family laugh will always be cherished.

I'm also trying to raise awareness and funds for Alzheimer's. Im climbing kilimanjaro to raise much needed funds for the charity. Check out http://goo.gl/JLcp4 for more details and sponsorship options.

Looking forward to reading more blogs! Keep it up and stay strong
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Anonymous | 23-Jan-2012 1:09 pm
Working as an RMN i know how hard it is to access support.

All to do with funding.
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Little One | 23-Jan-2012 9:36 pm
Thank you for writing this article Sally.

I think it is so sad that services are so disjointed. I provide home care services for a lovely lady who suffers from dementia and went to see her on her 80th birthday last week to find her crying in pain, shouting that her leg hurt.

Because she was in so much pain we couldn't get her out of bed, and because she was at home and usually continent, she had no continence aides and no moving or handling aides.

It took me three hours and 15 phone calls to just get some continence pads, and even then it was because I gave up with the system and asked her daughter to go and buy some from the local pharmacy.

I rang NHS direct about her pain and whether or not to go to hospital, they said as there was no external trauma she did not need to be seen at an A&E because she probably hadn't broken anything, and so also rang her GP who said he would come to see her and prescribe something for the pain.

It took two days for her GP to come out and see her and a week for an 'urgent' OT and Physio home visit. She had to lie in bed, uncomfortable and in pain for a week, and I rang everyone I could think of, including friends and mentors from my previous community placement hoping they could help.

No one knew who to ring or talk to, and still she has not been provided with any continence pads as the community nursing team say it is the community continence team, the community continence team say it is social services and her social worker says it is the community nursing team. It's awful.
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Natalie Jewell | 24-Jan-2012 2:04 am
Thanks for sharing.

It is a funny position to be a carer who is also a nurse. Inevitably you will meet professionals who think you should know all about the person you are caring for, despite the fact your own clinical area may be far removed and despite the fact the person you care for may not want you to know every last thing about them. To the person you care for you are first and foremost a friend or relative, not a nurse.

If you are still working you will come across people who do not recognise the amount of emotional strain that caring can cause you, despite they themselves being in some sort of caring profession.

If you join carers groups the majority of people in the groups are not professionals themselves and you find can find yourself isolated despite being surrounded by people "in the same boat".

At the end of the day, nurse or not, we are only human and we struggle just as much as other carers because it is impossible to switch off and distance ourselves in the same way we can with our patients.

So hats off to you - it is very challenging to be a nurse and a carer.
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Anonymous | 24-Jan-2012 8:09 am
Natalie Jewell | 24-Jan-2012 2:04 am

excellent comment like all the others here and very well expressed. it is good that some colleagues have so much understanding. at least your have hit MY nail fairly and squarely on its head by expressing things I have experienced and felt but been unable to express myself which have lead to total disaster as far as my caring and my job were concerned neither of which I was able to do as well as I would have liked and is still just as bad looking back!
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Anonymous | 25-Jan-2012 1:57 pm
Carers are entitled to a carer's assessment of their own needs. Ask a social worker for one. My mother gets 4 hours respite a week free as my dad has Alzheimer's. A carer sits with my dad so mum has 4 hours of well deserved time away from the home. Dad was also offered time at a day centre but has now refused to go. Mum can request more hours respite but will have to pay for anything over 4 hours.
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Anonymous | 25-Jan-2012 2:15 pm
Anonymous | 25-Jan-2012 1:57 pm

easier said than done and may depend on where you live. I was informed of no such service.
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Anonymous | 25-Jan-2012 3:20 pm
so where is the "care co-ordinator" in all this?

when you 'phone the cmht find out who has been allocated and if no one is demand a care co-ordinator. your father's just returned from hospital, the package of care has been increased, he is awaiting ot. assessment and the community matron is getting involved, surely you and your mother should have a one stop contact co-ordinating, and telephoning as necessary, on your father's behalf? here's the department of health leaflet about the care programme approach and the role of the care-cordinator:

http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/documents/digitalasset/dh_083651.pdf

good luck!
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Anonymous | 27-Jan-2012 1:23 pm
To Anonymous 25 Jan, 2.15pm:

I believe that it is a UK wide entitlement. Contact your social services dept, ask for the elderly care dept (or whichever is relevant to you) and ask how to get a carers assessment.

"Most carers have a legal right to an assessment of their own needs. It is your chance to discuss with the social services department of your local authority what help you need with caring assessment" (Taken from NHS Choices website) AND

"What does the law say?
The law says that anyone who provides or intends to provide a substantial amount of care on a regular basis can have a carer’s assessment. No definition of ‘substantial’ is given. Most people contemplating seeking support are likely to eligible for an assessment."
Taken from Carers UK website: www.carersuk.org

I hope this helps.

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Anonymous | 27-Jan-2012 1:49 pm
Anonymous | 27-Jan-2012 1:23 pm

To Anonymous | 27-Jan-2012 1:23 pm:

thank you for your helpful advice. unfortunately for me it is far too late. I lost my Mum some years and my career lay in ruins and I was forced into early retirement and had to live with my Mum, (on call 24 hours a day with no other support), at the time, off her meagre pension. I believe it is up to GPs and social services, when requested by me to offer information on the types of support and different options available.
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Anonymous | 29-Jan-2012 10:10 am
Dear Anonymous 27 Jan 1.49 pm

I am very sorry.
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