Thank you very much for your kind words. I feel it is really important to release any emotion or need to cry without reservation. In so doing one often discovers something about oneself which might have remained hidden. And your words are very important too, because your story is unique because it is yours and yours alone. Sharing that story, however difficult, nourishes this Forum in such a positive way. My warmest wishes.
Sometimes it is very difficult to accept that hospital is probably the most appropriate place in which to care efficiently in a clinical way, a loved one who is compromised by dementia. At home you have the whole ambience of familiarity and "comfort" and that sense of belonging which is borne out of having lived a life there to such an extent one even feels the very bricks and mortar know you and who you are. Hospitals vary alas in the way in which they address dementia patients. I have witnessed this directly. There is often an obvious lack of true awareness as to the nature of dementia. Hospitals are under pressure nowadays and what might have been many years ago in respect of Care, is diluted by all manner of demands on time and the way that nursing has seemingly changed solely due to these pressures. Sixty odd years ago my sister was nursing in a famous Children's hospital. I recall her saying how she once sat in a chair observing a sickly child for many hours on end, the Matron had earlier in her training informed the class of student nurses " that child laying in that bed is far more important than you are!" That credo was a kind of ongoing default line in the manner of Care in that institution in as much as the nursing itself was paramount and a zero tolerance prevailed. Nurses then were dedicated in that role and notions of marriage etc meant the end of that vocation for many. Today with tremendous advances in medicine we can live on even with serious illness and with both that and applicable Care expect a more or less normal life. Dementia requires a deep understanding of its nature by those who are in the nursing role. Because the one who is living with that disease is subject to anxiety, confusion, fear, elusive physical pain (often not expressed) that nursing/caring role becomes both imperative and beyond just appropriate treatment. It requires as a must, empathy and a real sensitivity as to the state of mind which that dementia patient is living with day and night. This is precisely what we, as Carer/ spouse/ daughter or son apply instinctively at home. Day and night we attend and we observe and we provide comfort in any way we can. At the same time we have to cope mentally and physically with the reality of this cruel disease.
Me again @canary I've just read this and it's made me realise mum is probably worse than I thought. Last night I noticed a funny colouring to her skin and her hands were colder than normal. She's been kept in bed now since last Tuesday, and I got a sense from the carers last night that they think it won't be long now. However this is the 3rd time end of life has started so who knows!
That was so beautiful to read @Hazara8 I have definitely be shedding tears in random places this week and your piece made me realise it doesn't matter. It also helped me understand that it doesn't matter what I say to mum at the moment really just that I'm there and she knows that someone is being kind and holding her hand.
It seems unbelievable how long the body clings to life. I felt the same about mum, a sort of "dear god, how much longer can she go on for?"
