if you want a laugh, read someone else's blog

Long ago, I renounced any illusion of going through the pearly gates when my time was up. I convinced myself that hell had different levels and, following assessment, would be allocated the Hadean equivalent of 'open prison' i.e. deserving of punishment but not considered a danger to others.

I am reminded of my many imperfections as I struggle to support an elderly relative, suppressing any surfacing resentment at all the rushing around, and constant tiredness.

Last week M. came home after a 10 week stay in hospital having suffered a stroke. I agreed to co-ordinate her care, something my brother did while my family and I had three years living it up in France. Taking over this role seemed fair. I expected a learning curve, but perhaps not so sharp.

It'd be very difficult at home, M. was warned, the implication being that admitting herself to a nursing home would solve many problems. M. is normally big on joie de vivre. but that depressed her and we rallied round, telling her it was her decision. So, unable to walk, hardly able to weight bear, but desperate to be amongst her own things, and have some semblance of independence (has that definition changed?), she returned to her flat, supported by a heavy package of care: four visits per day, each by two carers.

In her bedroom the twin beds had been replaced by a 'medical' bed with Nimbus air mattress to reduce risk of pressure sores. Her favourite chair in the sitting room had been moved, usurped by a reclining chair which, as the name suggests, she can either sit or recline on. The position is changed by the click of a button, one of the few things M can do for herself.

Going to the loo involves a marathon procedure of being strapped up in a canvas sheet, lifted by a machine, placed on a wheelchair, wheeled to the bedroom, strapped up in the hoist again and transferred onto the bed where her clothes (anyone still reading this?) are lowered, then finally she is lifted onto the loo. Then each of these steps is repeated, in reverse.

The job description of a bladder is dire and I can understand why many of them pack up, leaving their owners stripped of dignity. But I wonder if any bladders are fully aware of the consequences of their actions.

Here's what the health/social workers told us:
1. M. would have four visits per day, each toileting her, the first three making her meals (simple ones, obviously), the first one getting her washed, dressed and out of bed, the last one getting her undressed, washed and into bed. These would be paid for out of the social work department budget.

2. The hospital would give her enough continence pads (what a sexy subject) for a week, thereafter the district nurse would supply them. The maximum capacity ones would last M. through the night.

3. M. would almost certainly never walk again. She would therefore be given a hoist for use as above, described in more detail than you probably wished to read. As she had made so little improvement at physio during her hospital stay, she wouldn't be referred on for community physio at home.

4. As M. would probably have some private care, agencies would be quick to criticise each other.


Here's what they didn't tell us:
1. The carers would constantly be under pressure, time-wise, and tempted to use short cuts e.g. suggest toilet visits were omitted and M. could wait for the next visit - only three hours away... well, that's okay, then, specially for someone with a continence problem. In fact they've now requested a catheter which would definitely make their life easier but render M. more prone to urinary tract infections and remove another layer of dignity.

Blunt statement approaching - Furthermore, if M. wishes to do a poo (open her bowels, to use hospital speak) at 7 pm, that's tough luck. She must wait until 8.30 or 9 pm when the last batch of carers arrive. Perhaps she should try visualisation: "bowels stay calm, calm, that's it, relax." FRONT DOOR OPENS, SOUND OF FOOTSTEPS APPROACHING SITTING ROOM. CARERS APPEAR. "Bowels remain calm." Another five minutes at least until all the lifting and moving and removing procedures have been undertaken. "Now you can let rip." Hardly surprising that by the time her bladder or bowels are allowed to 'do their thing', the notion may have passed.

2. They'd get her into her nightie at the 5 pm visit.

3. We'd be confused by the different stories we heard from each carer and not know which to believe


Here's what we didn't realise:
1. An overwhelmingly large list of tasks wouldn't fall into the carers' remit. I'll only list the first fifty: putting on a wash, putting away any food shopping delivered to the flat, doing anything, in fact, that wasn't listed in their remit. Understandable.

2. M. would be stuck in her vinyl reclining chair between carers' visits. She therefore would never be in her kitchen, wouldn't know what food she had, couldn't make herself a cup of tea, switch on lamps when it became dark.

3. We'd receive conflicting information about what potential she had for weight-bearing and not know who to believe, unsure whether decisions were driven by financial constraints or bona fide knowledge.

4. No-one would be looking after her home or any of her affairs such as post, bank accounts. Her eyesight, already affected by macular degeneration - has deteriorated further since her stroke. Now she can hardly read. She recognises me by my voice and my shape (wince) rather than actually seeing me.

5. Some staff would treat us - the relatives - with respect, accepting we had views on treatment. Others would be patronising and paternalistic.

6. We'd be exhausted from hours spent on the phone trying to do things to improve M's quality of life. I blogged recently about the difficulty of ticking things off lists. This situation is the ultimate experience of what my partner describes as 'stickiness'. Most attempts at solving some problem end up with even more tasks to do. At least 80% of phone calls made are to staff out on visits, at meetings, off sick, on annual leave, all valid reasons for not being able to take my calls, but frustrating.

Yesterday afternoon was a classic example. People were coming and going in M's flat and I was there, in my 'overseeing' capacity. Everything was problematic. An electrician had attached a cable to the entryphone system so that a handset could sit on the table by M's reclining chair, thereby allowing her to let visitors into her flat. The table turned out to be too high, making it difficult for M. to lift the handset, even with her unaffected (by the stroke) arm. So we replaced it with a lower table, making it possible - just - for her to use the handset. Then it emerged that the table was too low for her to easily lift up her cup of tea. Then a carer (fortunately) pointed out that M. had run out of medication and the pharmacist confirmed that while M. could last until the next morning, she couldn't safely last until lunch time ( their delivery time) without certain drugs. M. loves TV. At the moment, it's probably her only escape from an unenviable situation. But she can hardly work the controls. Having run out of Foyle's War videos, she asked me to put on a John Deed DVD. I located the DVDs only to find that the DVD player door wouldn't open. At that point I was struggling to conceal my impatience.

The coping technique, of course, is to understand and accept that getting M's quality of life to the best it can be will take time and patience and much learning. Unfortunately I wasn't around when the genes for patience were dispensed. I don't just want things tomorrow, I want them last week. And there's an emotional element in all this as I observe M., me undoubtedly absorbing much of her justifiably negative feeling: her defiant declarations of not being helpless, a tragic comment in the midst of her all too apparent helplessness; her frustration and anger about her hospital experience along with her resignation/passivity about care at home.

Things could be worse for M. She doesn't have financial problems. She can afford to buy in care and equipment. That's about all she can do, however.

I only want the best for her. But I'm becoming aware of yet another set of limitations in me as I struggle to manage the varied strands of my own life while doing what I can for her.

Screamingly yours


Jane