Home is the place where...

The father of my 50-year-old stepson's 14-yr-old stepson (work that out if you can!) dropped dead this morning. I think the man was only in his 40s. My stepson got this news while helping his wife (my daughter-in-law) care for her father, 'J', whose cancer is expected to take his life in the next few weeks. Yesterday the members of our many-stepped family had gathered at the home of J's mother, my daughter-in-law's grandmother, where J's hospital bed has been set up in the living-room so he can spend his last weeks among family. We were all there to celebrate the 14th birthday of my stepson's own son. Both of the 14-year-old boys were also saying their goodbyes to J. But until now, only one of the 14-year-olds (my stepson's son) lived with my stepson and his wife - her son had been living with his father some 200 km further down the Coast. Now my stepson and his wife will have both boys living with them, and that means a new school for one boy and a big change for both boys to deal with - not to mention another death in the family, which is expected to follow soon.

My stepson and daughter-in-law with their boys in happier times.

The home in which 66-year old J is spending his final weeks is not really his 'home'. It's his mother's place, where his wife has been living with her mother-in-law for many years. But for most of his adult life, right up until he received the fateful diagnosis just months ago, J made his home on a boat – a yacht, I suppose you'd call it, though that implies oodles of money in the family, and that's not been the case. He just always lived on this boat. His wife and child (my daughter-in-law) lived there, too. But some years ago his wife made the decision to move back ashore and she has made her home with her mother-in-law ever since. J himself was just getting ready to set off on a three-month voyage when he found out he mightn't even have that long to live. Prior to that, he'd been perfectly healthy, or so he thought. So now the boat lies dry-docked – as does J. The former is waiting to be sold, and the latter is waiting...well, there's no easy way to say it: "waiting to die". And in the meantime, the father of his only grandson died quite unexpectedly at a young age, of a massive heart attack.

I suppose in one way or another we are all of us waiting to die. But most of us have neither the leisure nor the inclination to sit around thinking about it. So when you do have nothing else to do but that, I wonder: what is it you think about? I hadn't the courage to ask J that yesterday. After all, I've only ever seen him a few times before: at my stepson's wedding, at the odd Christmas lunch etc. I know him so little that at first I couldn't figure out who this person was when his name appeared as a subscriber to my blog a year or so ago. And I have never met my daughter-in-law's first husband – the just-deceased father of her 14-year-old son. But as my own daughter said this morning when telling me of this sudden death in the extended family, and the need to rally round and help, "family's family: you do what you have to do". She was speaking about her offer to take her step-brother's 14-year-old son to live with her for a while, so he could continue at his own school while his father and step-mother live away from home helping J on his life's last voyage. With her own full-time job, a one-hour commute and a baby in daycare, my daughter will be taking on a big burden. But...

“Home is the place where, when you have to go there,
They have to take you in.”

So said Robert Frost in Death of the Hired Man. Frost wasn't equating 'home' with 'family' though; in fact, he was saying exactly the opposite. The Hired Man did have family, but he didn't consider that family to be a 'home' he could go to in his final hour. Instead, he had come back to the place where he'd been happiest: the farm where he'd worked productively and been most appreciated. Still, I think my daughter meant the same as Frost did when she used 'family' to explain why she was prepared to put herself out for her step-brother.

So why is it, I wonder, that I am reluctant to get involved in this latest saga of extended family relations! There was a time I'd have raced in to offer help too. But it seems that being a full-time caregiver for more than three years has left me with too little reserves of strength for anyone else's problems. I have a little grand-daughter of my own. And at 11 months she certainly demands a great deal of energy whenever I'm around her. I have no problem 'giving' endlessly of myself to meet her needs. To me such 'work' is pure joy. But just about every other call on my caregiving services leaves me flat and exhausted. I haven't visited an old dear in a nearby nursing home since long before Christmas and she must be wondering what's happened to me. And in recent months, I haven't even been able to write in this blog. I just play endless games of computer solitaire or, after A goes to bed, break open a bottle of wine and watch mindless TV. I sleep as much as possible, too. Even the garden, formerly my salvation, is suffering now as I find it harder and harder to find the motivation to set to work.

I suppose I'm suffering a form of depression, and I'm no stranger to that. But this is unlike any other depression I've experienced. For one thing, I'm well able to do what I absolutely need to do. Anyway, I'm already on anti-depressants, so there's no further solace to be found in medication. Counselling holds no appeal either. I know too well all the things a counsellor will say, and I have already said them all to myself many times. Friends urge me to 'take a break'. But doing so would mean institutionalising A somewhere, since the family's all working, there's no one able to provide the full-time assistance he needs and I can't afford to hire anyone to come and live with him while I take a break.

Am I alone in not wanting to put my husband into residential respite, even for a short time? It's actually for selfish, not selfless, reasons that I shy away from that option. Any disruption to A's routines always has a detrimental effect of some kind. And the intimate assistance he needs with some aspects of toileting invariably causes problems for him, even when (as recently) he is hospitalised or in full-time rehab. We are still treating a bad groin infection that probably dates back to his recent hospitalisation for pneumonia. How could I relax somewhere while worrying about him, and then come back to face even a temporary decline in his condition or a period of delirium as a result of too-heavy administration of sleeping meds (as happened after his recent hospitalisation).

No, I'm convinced that just 'hanging on' through a difficult patch is better for us both than my trying for a 'break' of some sort. Luckily, I'm a person who relishes solitude. So at times like this, in spite of others' needs vying for my attention, I preserve my sanity by hunkering down and keeping myself to myself, but spending any chance I get to play with my grand-daughter. If I were at all inclined to such fancy, I'd say that she came along expressly to give me the strength and a reason to want to keep going.

I wish I were a better, more generous, more outgoing person. But for the moment, I'm in 'survivor' mode. Look for the quietest corner and that's where I'll be. I sometimes wonder if this isn't partly the result of years spent caring for someone for whom talking has become so difficult. I've learned, not only to bear silence, but actually to love it. Peace and solitude give me strength. I'm lucky to be living in an environment where those qualities are so much in evidence. At times like this, I almost feel I'm living a contemplative life. And in a bizarre way, that's a small consolation for what I've lost or given up. I would never say that A's degenerative brain condition is the best thing that's ever happened to me. But terrible as it sometimes is to cope with, our situation does give me licence to be as selfish as I need to be in order to take care of him – and of me.

Postscript: I usually try not to write negatively about my caring role, and I hope regular readers of my blog appreciate that. However, as much as I greatly enjoy seeing other caregivers' positivity as they face much more difficult situations than mine, I also sometimes feel that most of us probably censor ourselves at times when we aren't coping all that well. We tend mainly to write when our coping strategies are working for us, thus sharing our happier or more successful caregiving experiences. But I suspect we all have 'down' times, when we are just exhausted by the demands on our time and energy, or when we look at how healthy couples get to enjoy their retirement years and ask, "Why not me!" If we're lucky, such times don't last too long, and we soon realise how much we still have to be grateful for. We pick ourselves up, dust ourselves off and get on with living. But I wouldn't want anyone reading my blog to think I'm some kind of superwoman, always up and never down in the dumps. So I wrote this post at one of those times when I'm feeling emphatically: "Why me!"