Love hurts

It's Care-giver month again....think I'll have a nap. Don't get me wrong - for other carers, I care. I'm sure they do a stellar job and remain blissful, serene and contented. Well done!

Alas, I'm the other type: bemused, confused and cranky with it! Every now and then I just have to throw all my toys outta the pram, and have a good ol’ fashioned hissy fit. Chucking myself on supermarket floors, bawling and screaming; it has its appeal. I like gravity, and sometimes it’s quite comforting to be as close to it as possible. Trouble is my full head of white hair. At my age (58…and there’s nothing graceful about it), I’m liable to be picked up by a set of perky 80-year olds or an ambulance, dammit.

I might like writing, but that doesn’t extend to myself as subject; too much squabbling with the Id and other factions of my person. I have strong opinions, but clearly more lily-livered about my own set of values, because the lines keep changing or blurring. They didn’t always. If it appears I’m describing a stranger; we’re getting closer!

What I am is a carer. For those who have more space (the US); a care-giver. Some of you may know my hubby is fast approaching his 18th year with Parkinson. So what is like to look after another adult for LONG periods of your life? Tritely, can’t tell yet…..we’ve a-ways to go. But I’ve read other carers blogs, posts and books. Some are clinical, some exquisitely beautiful and painful, some woefully inadequate – defying explanation.

My own family have little idea about the cost of caring. Who can blame them when I’m towered over by an enormous festinating bloke that clearly needs every moment of focus? But I’ll try for an explanation.

I have to say first that my husband requires relatively little in the way of manual help (all things considered as NPR would say); some dressing, steering, stopping. I do the laundry, cook for him (although he can make eggs under supervision), I shop while he sits waiting, I drive. As I’m not a natural haus-frau – to hell with the cleaning, bar essentials. He could be a lot worse considering his duration of disease, but for his DBS.

But I’ll tell you what’s exhausting: anticipation. To have to be on full-alert for when he’s going to ‘go’ (potential fall), to know when he’s going to crash into something or other requires a fair amount of following like a guard-dog. And I lift – constantly. The getting-off-the-chair isn’t too bad because I make sure we’re both ready for it, but the second he makes it to his feet, I have to stop him with barking commands, ‘steady, STEADY….’ as his wont is to take off in a crashing hurry (the festination again). If we walk (rarely – his back has been skewed completely out of true by his PD), it requires side control with the anticipation of falling back, forward or other, so I grip his jacket or get in front of him to slow him. He has to sit frequently to relieve the pain in his back. Any sense of proximate space is now lost to him, so he could easily mow down a gaggle of ladies if I don’t see it coming. I have to do his feet (too stingy to get him to a Podiatrist) and check his skin as his extremities cool without him knowing. I cut his hair and help him shave, apply creams, heat or cold where needed. More than anything, my mantra is WATCH, WATCH, WATCH!

A recent problem that is finally resolving after TWO YEARS has been his sleep. Here’s an excerpt to his Neurologist:

‘‘Our lives are so entrenched in Pete’s sleep cycle (if there’s any sleep to qualify), that living is fairly abysmal now, despite his DBS. I will try and explain it, in order:

1. Pete tends to have a ‘cycle’ that lasts maybe 3 or 4 weeks. He never starts from a clean slate, as it’s been years since he’s slept in more than a 4-hour normal chunk. He starts by falling asleep as soon as dusk approaches. I cannot keep him awake. He will wake for dinner and fall back asleep. He’ll go to bed and be up fairly quick or immediately for the night or long portions of it.

2. ADD: He falls rapidly asleep and awake again. This can happen anywhere; mostly at desk, chair & in car. I drive. This is when he’s very tired. As his weariness increases, he starts speaking loudly, shouting, arguing in his sleep. He has blepharospasm (or oromandibular dystonia - not sure) - squeezing his eyes shut tightly, so it's difficult for me to know when he's sleeping or not (he pulls very extreme expressions pre-REM). This is very similar to his pre-DBS morning, with no meds or stim. This will be a major feature until the cycle breaks. RBD includes punching and scratching (usually the wall or air), flailing, falling out of bed. He has found where I live, and I am caught out to find him in his rictus smile looming over my bed; he’s not ‘conscious’.

3. ADD: When he dozes in the day (upright), he air-eats and chatters, pulls faces. When he falls asleep at night (rarely during his nodding-off times in the day) he has a good strong voice, lots of shouting and gesticulating, and you can tell he's talking to several people in his dreams. His RBD means nightly eating followed by antacids. For the most part he craves sugar. His aluminium levels must be horrid? His nightly wanderings includes him buttering a ball of string to eat, leaving the gas on, overflowing baths, and standing by my bed (I live in a bed opposite – out of shot of his arms & feet) and telling me about all the people at the end of my bed. He is ‘not there’ for all this, including baths, eating etc., although I wouldn’t exactly call it sleep by now, as he is not open to suggestion by then. He may try to leave the apartment. I will be chasing him or guide him as calmly as I can during these periods. He’s like a sugared-up 4-years old, and his festinating means he’ll crash.

4. ADD: to the mix PLMD. Near the end, his laying down to try and sleep will cause massive roiling muscle dystonic jerks, ending in his feet. These are very violent and clearly even more painful. They will start happening every 6 or so seconds. He can’t stand it, so all I can do to relieve it is get him to his feet. His sleep-debt is by now so great he falls asleep immediately, and down he goes. We can spend a good part of a few nights doing this. It’s now, with everything happening at once, that he most needs relief. On his desire, I’ll take him to the putting green at dawn – if he falls there, at least it’s fairly soft! He’s about 90lb. heavier than me, so steering him or preventing him from falling is beating me up! He has little control of his bladder. Finally he’ll be so exhausted, he’ll sleep a chunk of maybe 3 hours at once. Then the cycle usually starts again.’’

One pill, Mirtazapine. That’s all it took to stop the rages of the nights. Of course, it’s not over; he may need apomorphrine for his blepharospasm, and we’re still awaiting the outcome of his sleep-apnea test. But because all this has put us in crisis-mode for a very long time, it’ll probably take half the time again to restore good sleeping habits. I don’t want to leave him alone, partly because I’m sort of shell-shocked and partly because of his very frequent choking – be it on anything including saliva.

But all this has turned me into a fire-breathing dragon – he knows it! Nothing wrong with his mind (when he’s ‘awake’), so he’ll bark back now – ‘don’t shout’, he shouts because I’ve had to repeat myself – I knew he didn’t hear me that the person who’s trying to enter card-details in the store is nervous because Pete’s unknowingly got too close for security.

In the evening, Pete falls asleep instantly in his chair. I try and keep him awake to re-establish old habits, but it doesn’t work. I watch him as he eats to make sure he doesn’t choke. I finally get to bed, with or without him. I’m shattered and so is he. I don’t have PD; I have a ‘rare disease’ which brings lots of pain and exhaustion. But I don’t have PD and not much of a life. Still, my beloved – the one I choose to love daily; he does.

So, that’s my job. I have to say, I’m fairly crap at it; there’s no manual or set of rules to follow. Because of both our diseases, we had to leave behind our friends and church in the States to return to the UK – which means there’s very little to fall back on. The loneliness of it has driven me to become more withdrawn - not less, oddly. Losing my beloved BFF and sister last year really ended so much for me. Mercifully my hubby’s primary disease is unabashed optimism, and he doesn’t need other people – that’s a blessing! He keeps his mind fully engaged during his waking hours, at his desk. I do the same, in the next room.