And then what?

Well, here is another dilemma for me… I haven’t written much about caring as such lately because, well, the situation has rather changed.

So, a brief précis of where I’ve been… my wife started out with acute psychotic depression in the August of 2004 and spent 4 months on the acute ward. The treatment was, to be generous to them… extremely poor. On discharge the out patient support veered between non-existent and damaging until in early 2009 and became seriously ill again with the same symptoms. This time the support offered by the crisis team and then acute wards was very different… it was truly appalling, the standard of service was a total disgrace, the entire staff involved need to hang their heads in shame that they could have been so totally utterly contemptuous, incompetent, callous, uncaring and useless. No, I am not exaggerating… the whole lot, exemplified by the consultant supposed to be in charge of the case and the ward were a total disgrace. I do not believe any of them should have employment in any service dealing with human beings… bitter? Yes I am… but I have been able to get over it.

During this time my own health, both physical and mental deteriorated seriously, I had two breakdowns, totally lost my self confidence and self esteem and was permanently exhausted… oh yes, and at times like these you find out who your friends are…

My friends was certainly not the CEO of the trust who dealt with my complaint by telling me that if I followed up my complaint it would adversely affect my wife’s treatment. No, it couldn’t… couldn’t have been worse.

Eventually when elations between me and the so called consultant hit total rock bottom my wife was transferred to a different unit, a treatment and recovery unit, where the staff restored my faith, they were just magnificent.

The diagnosis was eventually changed to vascular dementia, triggering a further breakdown for me, and the realisation that we were now looking at a permanent nursing home.

To cut a long story short, after a further year, she is now in a superb care home where she is cared for superbly. Of course, once that happened, the weight of the years of worry and fear should have dropped off my shoulders, but a severe attack of survivor guilt left me sleeping only fitfully, dreaming of suicides and drowning, of maiming my wife and countless other cheery things.

My GP stuck me on some new meds, and they have done their job… three months on I am sleeping well, not having the nightmares, have regained my self esteem and self confidence and am now clear that nothing I could have done would have changed the situation we are now in, and that I have nothing to feel guilty about. I am comfortable with myself and am now starting to live my life fully, and enjoying myself again.

So, I don’t have the day to day care issues so many carers bravely face every hour of every day, I have no worries about my wife not having the best possible treatment… what could be wrong with me now?

Well, I’ll tell you. At present I visit twice a week, I never know if she knows who I am… she hasn’t uttered an intelligible word for 4 years now… she spends more time looking around the room and wandering off to other residents than sitting with me.

I have no idea if she gets anything from the visits… there is no spark or hint. She is never seems thrilled to see me, never seems disappointed when I leave, in fact never shows anything to give me a clue if there is anything behind the blank lifeless eyes.

As I have always said she is my wife, I still love her, I still want to be with her, and if I don’t visit her at least twice a week I feel I am letting her down… I won’t do that. But, when I do go, if I’m honest, I get no pleasure… I just feel upset and lonely, missing her more than when I am not with her. I hate to see her living this sort of life, she should be with me, at home, enjoying her gorgeous grandchildren, who she doesn’t really know.

Thing is, she may be happy... I don’t know. I think she is relatively happy, the staff members think she is relatively happy given the limitations of the condition… I can only hope that this is right.

But there is my dilemma… I won’t let her down… I know she wouldn’t let me down were the positions reversed… should I go more often? Less often? Stay longer? Stay shorter?

I know no-one can answer this for me, but I feel more at peace having now typed these thoughts out. I have to come to my own decisions, as does everyone in this sort of position…