Power of Attorney - a burden or a help?

What did you do this summer? The weather was wonderful - but I spent most of the time visiting the hospital or a residential care home. During August my mother was admitted to hospital with a chronic lung condition and I had to get my father, who has altzheimer's into a residential care home. I would like to talk about using my power of attorney during this period and what that has felt like.  It is a costly process to get a power of attorney - so has it been helpful?

About two years ago when my father's dementia was still in the early stages and he had periods of being completely lucid my parents decided to ensure that decision making was kept within the family.  They took out both the financial and the health and welfare power of attorney.  My mother and I share power of attorney for my father (although we can act separately) and I have sole power of attorney for my mother. 

Up until my mother became ill - my mother mainly acted for my father, operating his bank account, going with him to medical appointments etc. She would discuss all major expenditure and health options with me, but I played a secondary and more supportive role.  We found the banks - with one exception - very helpful and very on the ball in terms of lodging the power of attorney and then exercising it. My mother had all my father's statements readdressed to her so that she could keep an eye on things as my father tended to hide letters and bills.

My mother went into hospital in an emergency early one Sunday morning at the beginning of August and I was suddenly thrown into the role of becoming the main decision maker for both my parents. I have no doubts that holding power of attorney has been helpful but feel the responsibility has weighed heavily on my shoulders. It has often felt very lonely being called on to make difficult decisions on my own.

I was asked to come into the hospital to talk to the doctors as my mother's condition was being described as 'critical' and there were times during the first 48 hours when the doctors did not think she would survive. I think the doctors were pleased that there was a family member with power of attorney - another person to make the decisions.  For me I was being asked to make some difficult decisions about resuscitation and when my mother started refusing to wear the oxygen mask - whether I supported her right to refuse treatment. For me, I could only make decisions based on what 'I thought' my mother would want.  I had never had a discussion with her about these issues and during those first few days she was not able to discuss them with me. Having this discussion is now on my 'to-do' list - but it is so difficult finding the right time to have that talk. 

Meanwhile back at home I had to make the decision to get my father into residential care as he was unable to look after himself - and as I already care for my disabled daughter at home I could not have him come and live with me.  Fortunately my mother had visited a number of care homes and she had discussed her views of those with me. It was my first experience of having a relatively live in a care home and my overwhelming feeling was 'having one's life reduced to one room is not what any of us would choose'. I had to force myself to visit him and went away in tears - feeling very responsible for making the decision, yet knowing there was no alternative.

Having power of attorney is a lonely role.  I can only compare it to the best interest decision process which we use for my daughter, Erica.  Because Erica has never had capacity she could never give us power of attorney so all major decisions are made in her 'best interest'.  These decisions are made by more than one person and we talk through the reasoning behind the decisions, we are clear about the benfits and risks and we try to remain person-centred about what we think Erica would want.  It feels very different.

My mother did survive her hospital admission and after nearly four weeks has gone to live with my dad in the same residential home.  She has chronic heart and lung failure and will never be able to look after herself again.  Although the hospital staff wanted her to go into a nursing home she was very clear that she wanted to be with my dad (they have been married for 62 years) and I supported her in this decision.

She is unable to manage her financial affairs as she does not have the energy to do those tasks.  So I have been left running their financial affairs, packing up their house and closing various accounts.  Having power of attorney and being able to act on my own has been effective and an efficient way of dealing with these issues. Whilst some of the companies and agencies I have dealt with have been very understanding, helpful and efficient, some - one energy company in particular - really do not understand 'power of attorney'  and have refused to speak to me without getting permission from one of my parents.

So looking back over the past few months - whilst being the mainly decision maker has been lonely and difficult at times - I think it would have been more difficult without the formal power of attorney. The main lesson I have learnt:

• holding a health and welfare power of attorney involves making some major ethical decisions and those 'hard discussions' need to take place before the crisis

My husband and I are now talking about spending the money and drawing up power of attorney papers - so I guess that answers the question as to whether it has been helpful.
 

Adapted holiday accommodation is more than just handrails.

 

I have recently taken my severely disabled daughter, Erica to Center Parcs in Sherwood Forest for the 15^th time. What makes a holiday and its accommodation appropriate for someone with very complex needs? The main issue is that the needs of all disabled people are not the same, what works for Erica may not work for other people. So why has this worked for us?  Let me start at the beginning.

When my daughter was in her teens I decided that she should enjoy an annual holiday in the same way as anyone else. I decided to try Center Parcs which was just over an hour’s drive away, so I could get home easily if I needed to. I invited a friend and her 4 year old son to go with us for a weekend. Although Erica does not communicate verbally, it was clear from her smiles, laughter and happiness that she enjoyed swimming, the birds that visited the villa each day and long walks through the forests.

Over the years, we have continued to go to Center Parcs, our stay has now extended to 10 days. Erica’s health needs have become more complex so we now hire the same ‘adapted’ villa, one grade up from standard so we have the luxury of a ‘housekeeping’ /cleaning service each day. Erica is supported by a variety of family and friends – initially some of that support was paid through the Independent Living Fund and it is now factored in to her Personal Budget. The villa is on the edge of the lake so Erica can sit and watch the birds – and is visited daily by the swans, geese and ducks. And for Erica it is the hire of an adapted bike each year that makes her holiday.

Our villa is appropriately physically adapted and spacious to get the wheelchair around it. Erica has a profiling bed (one that is height adjustable) and a bathroom with a walk in or wheel in shower. We hire a mobile hoist which is delivered and collected by the company and we take with us a commode/shower chair that we know fits over the toilet (the toilet is higher than usual to suit the needs of disabled people who struggle to get on and off it).

The general facilities at Center Parcs have never been ideal, but I have taken the tack that if we are to visit each year we need to make Erica’s needs known to management. And Center Parcs do have an obligation under the Equality Act to meet the needs of disabled guests – recognising that they are not a homogeneous group.  So I write to the manager after our stay with feedback and whilst there talk to staff about the changes they need to make.

One of the main issues was the changing facilities at the swimming pool. The changing cubicles are small and during our first few years they let us use the First Aid room, but over the years they have made the changes needed (I am sure I have not been the only carer or disabled guest that has campaigned on this issue). They now have a larger changing room, with a mobile hoist, an adjustable changing bench and a bin for clinical waste. The pool has a slope with a chair that can be wheeled into the pool.

There are still many outdoor areas of the Parc we cannot access with a wheelchair – the path to the bird hide, some of the new picnic areas and of course, the miniature golf course! But they do maintain an excellent fleet of adapted cycles – this is Erica’s favourite activity – and to our delight, this year, have bought some new cycles.

 

Why do we continue to visit? For us, we know we will need to continue campaigning for changes for many years to come – but those are physically changes. What has made this place work for us is the attitude of the staff who work there – our housekeepers who have got to know us and nothing is too much trouble; the woman in the changing area of the swimming pool who recognises us each year and offers to help in whatever way she can; the maintenance staff who ‘fix things in the villa’ and the staff in the shops and restaurants who are always helpful. The management do seem to listen, although some changes have been slower than we would have liked.

I could not end this post without including the things at the top of my list for change:

• I would like a washing machine and tumble dryer in the villa – my daughter goes through a lot of clothes whilst on holiday and going to the laundrette every second day is a chore.
• More flexibility around the number of support people Erica can use whilst on holiday as most of Erica’s supporters cannot do the whole 10 days, so her supporters come for shorter periods, but we are limited to the same 6 people for the whole 10 days.
• I would like Center Parcs to collect the ‘clinical waste’ bag daily, rather than having to walk or cycle with it to the medical centre each day.

I have booked our holiday for 2014 – same place, same villa. Erica’s needs are complex so once we have found what works we are staying with it!

Thanks to Andy Lord for the photo's.

http://www.andylord.co.uk/

The Maze called Occupational Therapy

In my first blog I said one of the ways I cope with the stress of my caring responsibilities is to try and see the lighter side of situations. When it comes to getting equipment and adaptations via the occupational therapy (OT) service this is definitely my default setting. I am therefore writing this blog slightly tongue-in-cheek, it is not meant to insult any readers from the OT profession but it serves my need to wonder about how a service has become so complicated for those of us who need to use it.

For me the first hurdle I face is to work out if I need an Occupational Therapist employed by health or one employed by social care.  Recently I discovered that my parents were both sleeping in their recliner chairs as they can no longer easily get on and off their bed.  So when my mother went to see her GP about the x-rays of her back I suggested she ask for a referral to a health OT for an assessment of their sleeping arrangements. (I have somehow assumed beds are the domain of health.) Coupled with this they need to be assessed to get on and off the toilet. In the past it is the social care OT who has provided grab rails and bathroom equipment. I now lie awake at night wondering if beds are health are toilets and bathrooms social care or do we really need two different OT’s involved. I wonder if there is a rule book somewhere that delineates which equipment / rooms in the house/ bodily functions belong to health and which belong to social care. Or I should ask the question does it matter?

In the cold light of day, of course it matters. Health is free at the point of delivery and social care is not. But then there is the joint equipment service, which I thought had been introduced to deal with the confusion as to who provides what.  As I understand it, and I may be wrong, this provides pieces of equipment which cost less than £100 and can be accessed by either health or social care. The difficulty is how do I know before the assessment whether the equipment needed will cost less than £100 so I am left with my original question do we need a health or social care OT. This morning matters became further complicated when my mother informed me that the CPN was referring my father to an OT who specialises in dementia.  I now have visions of 3 OT’s all assessing different rooms or perhaps the same rooms of my parent’s home. How did the situation become so complicated or is it just complicated to those of us on the outside?

During the 30 years of my daughter’s life I have become used to OT’s, their technicians, equipment reps and surveyors traipsing in and out of my house. My daughter attended a special school which was just outside the boundary of the city we live in.  This meant that she had 3 OT’s – a local authority OT for equipment at home, a different local authority OT for equipment at school and a health OT.  This lead to some bizarre situations, particularly if we needed a piece of equipment which had been made for her at school made for her in the home.  It involved 2 OT’s and 2 technicians – a simple ladder back-chair took so long to co-ordinate and make that by the time it arrived (9months later) she had grown out of it. Whenever, people used to say that there was a national shortage of OT’s, I used to smile and think, well that is not surprising my daughter has three.

We are in the midst of having our home assessed for a more suitable bathroom arrangement for my daughter.  This process has become akin to the game of ‘Chinese whispers’ that I played as a child (the final message whispered along a row of children bears no relationship to the original message). This process started with a visit from the health OT as my daughter’s scoliosis had progressed so she needed all her seating reassessed. It was agreed that instead of the tilting commode / shower chair she needed a moulded commode / shower chair to support her spine.  A number of reps then followed bringing equipment to try out and the outcome of that was we would need a new bathroom as the turning circle for a moulded chair was larger. The health OT then submitted a report to the social care OT, who visited and agreed that is what was needed. She then went off and spoke to the surveyors in the city council and came back for a visit with a surveyor.

By this stage the surveyor was convinced that what was needed was a tilting moulded commode and that we would be wheeling her around the house in a tilted position. No amount of talking could convince him that the messages had become muddled so he walked around the house measuring access and turning circles that would require that we live in a sports stadium! He proposed knocking down walls that we had no desire to see knocked down and in the end agreed that he would draw up some plans but he would come back for another visit with the health OT who had started the process and the rep from the equipment company. Perhaps when we have all the appropriate people in the same room at the same time we may get some sense – but what a lot of wasted time and left us asking the question – who’s house is this, anyway?

It has taken us over 6 months to get the lounge chair that was needed during this reassessment process. The hold up was the fact that the new clinical commissioning group could not agree a process for approving the funding and then commissioning a private company to purchase the chair. Strangely enough, it was all sorted out the same week that I made a complaint! The light on the horizon is that I have now been told that as my daughter is 100% continuing care funded and has a personal health budget I can get her equipment approved and paid for via her budget.  A new route to try with the purchase of her commode?

I could go on forever sharing the stories I have about equipment and adaptations, but wanted to give my readers a flavour of the dilemma of so many carers and disabled people when trying to work out whether one needs a health or social care OT.  Government talks about the integration of health and social care and I share this dream in relation to the OT services; but I would like to ask when is this going to happen as I would like to stop lying awake at night wondering whether it is health or social care.

If you would like to comment, share your experience or answer some of my dilemma’s please comment or tweet.

My illumination

If you have a number of light-bulb moments in quick succession does that make an illumination?  If so, then I had an illumination at 3am whilst trying to sleep in a hotel room, which I was sharing with my mum, on our way to London.  So, what was that illumination? I realised everything I had learnt and knew about being ‘person-centred’ I had just not applied when helping my parents plan for the future. 

My daughter, Erica left school 11 years ago and since then we have developed a comprehensive assessment and a good person-centred support plan, which offers her a diverse and interesting range of opportunities and activities with the high level of support which she needs. Since I started blogging and tweeting (about 3 weeks ago) I have read some wonderful person-centred blogs about older people (thanks to Beth Britton, Ming Ho and Martin Routledge) – yet the penny did not drop! With hind-sight I realise we have been carried away by social services who have applied a very traditional model of support visits to meet personal care and when you need more then it is residential care. Spending time driving with my mum to London and supporting her in a hotel made me realise that this is not what she and my dad want. 

So let me share those thoughts with you.

Last Friday I wrote a piece for Community Care outlining my journey to look for a long term solution to my parent’s living situation. (http://www.communitycare.co.uk/blogs/adult-care-blog/2013/05/do-we-need-care-homes-for-older-people-in-2013-regrettably-yes/)

My main goal was to try and find somewhere that my parents could continue to live together in their local area. As that option was not available at a price they could afford I felt the only answer was for my dad to go into residential care and my mum to remain in their home. 

On Friday my father also went into residential ‘respite’ for the first time. I took my mum to London for a family get-together. When we left Yorkshire at mid-day on Saturday my dad was not happy although beginning to accept his situation.  The main positive for him was that he was given puddings after his meals, otherwise he spent most of his time finding the doors out of the home or sitting in the entrance hall waiting to be collected.

My mum and I had some really good conversations on the way down. I asked her if she could have whatever support she wanted, what would it be. I learnt a number of lessons:

•  She was not ready for my dad to go and live somewhere else (the quest for residential was about my anxiety) 
•  She would like a weekend break about 4 times a year (I expected her to say every 2 months)
• She felt she was wasting money by being forced to have separate calls for her and my dad, as there were some days when a shared half and hour was sufficient
• She would rather spend her money on sitters so she could have more breaks during the day. She would need help to find sitters who would get on with my dad.
• She would like help with meals, but she wanted to make the meals (cooking has always been her thing and she is an excellent cook). This one was interesting. She wants to buy more ready-meals from M&S. (I did wonder of I could suggest that M&S do a meals on wheels service for the discerning older person!)
• Sharing a hotel room made me realise just how difficult she finds getting on and off a bed, going to the toilet during the night and how great the risks are of her falling.

It was only after I had helped her to the toilet at 2am and then could not get back to sleep did the light bulbs start going off in my head and I realised that everything I knew about being ‘person-centred’ I had just not applied to my parents situation. I had been co-opted in to a rather traditional model of care which as a social worker and a parent I no longer believed in.  It suddenly all came together for me and I thought:

‘Put on your campaigner’s hat and turn things around.  Develop a person-centred plan with mum and dad that they want, not what the local authority and health think they should have.  Challenge social care and health to think person centred in relation to dementia and older people.’

OK – so what is my plan of action?

1.  Read their separate ‘service user’ assessments and support plans 
2.  Use my contacts to find a sympathetic manager in social care who I can talk to and lay down the challenge: how do we turn this around and make it person-centred, as that is the government agenda – is it not?
3.  Ask for a joint assessment of my parents as both service users, and my mum as a carer.  This is in the spirit of the new Care Bill – is it not? (See previous blog)
4.  Develop a single support plan which treats them as a couple who have been married for 62 years and yet respects and meets their individual support needs
5.   Then ask for help to find services that will meet their needs outlined in that support plan
6.  As a post-script – arrange a reassessment of their sleep arrangement to ensure that my mother can get into and out of bed safely during the night (at the moment they are both sleeping recliner chairs in the living room – not a good idea!)

   

How difficult can all this be?  I am not asking for ‘the moon’ just what is laid down in law and regarded as current policy and good practice.

Is joint assessment a reality?

For carers the new Care Bill has been called ‘a once in a lifetime opportunity to be truly acknowledged and valued as expert partners in care’ by Dame Philippa Russell, the Chair of the Standing Commission on Carers.  On a ‘good day’ I probably believe she is right; but on an ordinary day I have doubts. These are mainly around, it’s fine to have an assessment but where will the money come from to support carers. And secondly I haven’t had many positive experiences of statutory agencies being creative and flexible enough to see us as a whole family whose needs are unlikely to fit into their tick box assessment methods.

As carers we will no longer have to provide ‘a substantial amount of care on a regular basis’ to qualify for an assessment, so more of us should qualify. The assessment will look at the impact that caring has on our lives and what we want to achieve in our own right. This means looking at whether we want to work, study or even do more socially. Finally, a joint assessment can be undertaken. It is this last point that I want to write about in more detail.

I care for both my adult daughter, Erica who has profound and multiple impairments as well as my parents, my father has dementia and my mother is physically disabled. As a professional I have worked in children’s disability services for many years and have always felt that separate assessments made very little sense. The lives of children and their parents were so interrelated that a true picture of the situation could only be described by looking at the family as a whole.

In relation to my daughter I hold a similar view. Erica lives with us and her care needs and her right to live a life with dignity and independence has a direct impact on our lives and our rights to work, retire, socialise and do things that all other adults enjoy. It is like the ‘yin’ and ‘yang’ symbol, you cannot have the yin without the yang nor the other way round. Our lives are part of a symbiotic whole (a relationship of mutual benefit). I realise that this type of interdependence is not the case for all care situations and for some carers having a separate assessment may be more appropriate.

My experience of being assessed by adult social care has not been a positive one. Our local authority has invented a tick-box assessment and support planning process. I know this is a common ‘invention’ in many authorities, as it is quick and easy to administer. My misgivings about the assessment forms are that they cannot possibly capture and describe the complexity and diversity of my daughter’s needs. So I therefore wonder how they could possible capture a more complex and interwoven picture of relationships and needs if a joint assessment was required.  I fear that unless local authorities throw out their tick-box forms what we will have are parallel assessments of the cared for person and their carer, in other words two separate assessments stapled together and labelled ‘a joint assessment’ .

The situation with my parents is even more complex. They both have care needs in their own rights and receive support as individuals.  My mother, due to her arthritis cannot dress herself and up until a few months ago my father would assist her to dress and undress each morning and night. They were seen as carers for each other as well as service users. As my father’s dementia progressed he became unwilling and unable to help my mother. So he is no longer seen as her carer.

My mother has received assistance with showering for a number of years and has a ‘named social worker’. When my father was assessed the local authority insisted that they have different social workers so that there would not be a ‘conflict of interests’. My mother was seen as my father’s carer by this second social worker and a service user by the first social worker. The outcome was completely muddled and disjointed assessments of their needs and support plans which did not address the issues of interdependence, risk and the need for my mother to have a break from caring.

Fortunately the care agency that go in every morning raised the alarm in terms of risk and the same social worker has now assessed them both, although separately, as service users. They currently receive separate allocations of support by the same worker, paid for by them as two separate calls, which are required to be a minimum of half an hour each. (They never need a whole hour.) I do wonder how we move to the next stage. A joint assessment recognising them both as service users as well as my mother as a carer (and me as a part-time carer and decision maker). Then a support plan which takes into account the issues of interdependence, risk, need for breaks and for us all to live with dignity.

A side issue, but one worth raising: - the new bill states that for a joint assessment to take place both the carer and the person cared for must agree. I do wonder how this will work in relation to my daughter who does not have the capacity to understand the question nor the ability to make the decision. Will we need a best interest meeting to determine my daughter’s view? If so, would my husband and I as her carers be excluded from that decision?

I do hope that the guidance to local authorities addresses some of the issues that I have touched on.  I would really like to believe that joint assessments could be undertaken and that they will not just be separate assessments stapled together.  For me the assessment is so important in establishing eligibility and rights to services and support. The family members I care for need good dynamic assessments in order to be supported to live meaningful lives.

I would be interested in reading and responding to comments.