The Art of Caring- how does it feel?

People say that having been a patient makes you a better nurse. They say you can tell the difference between a midwife who has had a baby and those that haven't  ....the one who's had one doesn't say "this might hurt a bit".

As I get more older and more experienced witnessing and experiencing the other side of caring and being cared for, I try harder than ever to listen and hear my patients voices and for those that have no voice their carers.

Having experienced my mother going into Hospital for three weeks this month, I was saddened as well as relieved by the care she received. A mixture of emotions, but one things for sure since my days in an acute setting, things have certainly changed. Over the years I've done my best to avoid my mother having to undergo admissions , speaking to the ambulance service , making sure my mums advanced directive is prominent and striving to keep her at home with the man who loves her, cares for her and ultimately has sacrificed his own self for her.

Home just over a week, she's a changed woman and not for the better! My Dad was so pleased when they said she was coming home, I could hear the happiness in his voice and sitting here now holding her hand whilst I type and listening to her rumblings and gasps of confusion---- despite the negative changes ,this is where she belongs. As clinicians we can fall into the trap of thinking we know best and not seeing the whole person. I like to think and hope that being a guest in someone else's house negates this and that with the right care, home is  where people should be.

Mum now has carers 4 times a day, a DN for the grade 3 pressure ulcer acquired in Hospital and a Hospital bed. My back is aching getting her up and down and assisting her to walk with a simmer frame to the  Buxton Chair where she stays all day. She is I’m afraid nearly lost to us, being confused and anxious most of the time now. My father is now absolutely housebound too ....dependent on others to release him but at least he has accepted some help and recognises that he simply can't manage on his own.

Perhaps the nest way of describing the impact we have on others is to listen to those others and so here are snippets of my fathers words

- I use the time the sitters are here once a week to have a bath. I can spend a whole hour by myself, it's a great source of pleasure.

- See, you can tell the difference between the older ones and the young ones (carers). They all do the same, but the older more experienced ladies talk to her, they spend a while and they treat us with kindness. They know that there’s a real person hidden in the woman they see.

-the older ladies walk her to the bathroom when she's good and not wash her on the commode or on the bed. They know she can do it and she's so pleased.

- I know people think I'm obsessed about getting my paper everyday. It has become a lifeline to me to be able to do the crossword. It keeps my brain active and gives me something to look forward to everyday.

 So once again the importance of keeping the right people at home for as long as possible is the way forward. It's tough , it's tiring and at  times downright depressing, but it's also their right, their wishes and in a lot of cases their purpose. It should be easier to do this....... It's certainly cheaper for the system! As an election looms, as a family carer I'm fascinated to see how my Fathers payment for my mother has doubled overnight with absolutely no changes to their circumstances, making him reluctant to accept the help. It's a disgrace and a travesty when people who have had only one admission throughout their journey of co morbidities and ill health  struggle so much to receive care.

I am in a position to help this and use my scholarship to consider different and new ways to bridge the gap. My experience of my mothers care is that the amount of time you give doesn’t really matter- its what you do in that time that matters. Its how much of yourself you’re willing to give others that makes the difference between being visited and being cared for.

I,VE LOST HER

I.VE LOST HER

The last two weeks have been a personal journey of heartache and challenge. After 54 years of marriage my parents are spending their second ever occasion apart. My mother was admitted to hospital a week ago and I visited to support my father in the MDT meeting.
One day last week he said "I,ve lost her" and he didn't mean she was dying, but that the last element of recognition and "finding herself through the fog " had gone. This is the hardest of all. Is this the time to look at a nursing home?
Well no, we are looking at a package of care of home , day centre and him continuing to love and care for her. A few days without her was a relief, he could sleep at night, eat what and when he wanted and find himself too. But a week on, he is a lost soul and almost pacing without her here. He has become a full time carer and the man he was is ,I hope only temporarily ,gone- lost within this role which could go on for years. We try to encourage him to take the help and to find things of interest for himself, but this is easier said than done, when someone else has been your life for 63 years. What we can do is be here, listen and hear and relieve the pressure.

Looking at my parents existence as a FN Scholar reiterates for me the fact that behind every person with dementia is a real person- someone who has achieved things in their life , full of interest and dynamism . We may not see that very often or at all, but that is who they are and they deserve the dignity and respect of lifelong heroes. Because each and every one of them is a hero to someone.

I had a teleconference this week with one patch of my work around possible investments in dementia which I could embrace and lead as a FN Scholar. I hope that my drive and belief in self management and preventing unnecessary  admissions to Hospital will yield results. We discussed how to support people and their carers to remain at home, how to prepare yourself for three to six months ahead and what to do if the "what if" happens. People with learning disabilities have fantastic shared care plans ......we could adapt and enhance these for example.

It's interesting that whilst most people know about my mum, I lead and manage this project as I do every project and lead area I have. I'm as enthusiastic and committed to every element of my role as Director and vehemently believe that all of our services should strive to walk in the shoes of others and lead by example. And this is what  I see every day.

We will have two new projects or pieces of investment in dementia care soon and I am excited to see what they are, but we could do so much more to meet those unmet needs. This requires a partnership approach and I think we,re on the way to achieving this so I am excited. My scholarship has focussed on raising the profile of dementia, looking at new services and me taking on areas outside if my comfort zone. So far so good - I'm well on my way to achieving this.  And the contacts I've made via twitter have yielded exciting results. The first chapter of my personal journey has laid the foundations, now I need to start to design the building!

Get well mum - you,ll be home again soon