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