11 March 2012

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!"


Anonymous said...

I so know exactly where you are, emotionally. Hang in there and yes, sometimes the respite as they choose to call it make our life living hell.

We have entered our 7th year and it is wearing. My spouse is not sure he wants to stay married he said this morning. Such a tempting offer!

But I will persevere as best I can for now. Sorry about all the complications to your already over-full life. Thinking of you daily, gin

Anonymous said...

This afternoon my spouse is happily married...ah well, Chartreuse, I am sure you are all to familiar with the mood swings as the wind blows. Take care and good luck with your family and the step-grandson. Hug gin

Chartreuse said...

Gin, that's funny about your husband not wanting to stay married this morning. I suppose we may seem more like jailers than wives sometime. My husband actually calls me 'Mum' now and then - it just slips out, and then he's sorry.

Red said...

My sympathy to you and your loss and impending loss. It's a very stressful time for you.
I don't think you have to apologize for the negative tone of your post. Writing is an excellent therapy and writing about stressful situations can help to put them into perspective.
I wish you strength to carry on in the net while.

Chartreuse said...

Thanks for your comment, Red. But I'm the one who should be showing sympathy, not receiving it. I do agree, though, that writing is the very best therapy - at least for me. Already I feel a bit better for having 'got it out there'. Who knows: maybe I'll go out next and hoe into my overgrown pumpkin patch. I need to do that to be able to get at a few bunches of ripe bananas on the hill behind the pumpkins. Gardening is my 2nd best therapy, after all.

Stafford Ray said...

I want you to listen to this. You just described what should be called "Carers' Depression".
I suffered it after the first year of caring for my poor helpless mum, crippled by a stroke that she wished had killed her.
She suffered the indignities of having gone from a capable and intelligent woman to one whose mind was the only fully functioning part of her previous self.
She died eventually of pneumonia, having created instructions that in the event of any life threatening condition arising, she was not to be revived, so that is how she went.
But this comment is about the carer and I do not have any simple to do advice for you.
What is needed to protect the sanity of carers is paid visitors, like district nurses that visit the homes of people like you and Allen, spend the first few visits with you there so the 'patient' gets to know the visitor, after which you have 'days off' to simply go and visit 'normal' people to keep your own sense of self.
Maybe with your communication skills and your intelligence, along with ongoing hands on experience yo u are the person to start a 'carers helpers' petition.
Whether you do that or not, you still need to keep up some normal time away from Allen, so from one who has 'been there done that', please do value your own need for a life!!
BTW, it is not the degree of difficulty you mention that is the cause of the depression, but the constancy, the lack of relief and most of all that there ire the constant reminders there is no hope of recovery. There is just the burden of watching someone you love dearly, gradually slipping away while you try ever more desperately try to make it better.
You are a hero, but we must remember what defines a hero.
A hero is a person who perseveres, knowing there is no hope because it the 'right thing to do'. But being a hero often kills the hero.

Chartreuse said...

Dear Stafford, you are so thoughtful to take the time to write all that. And I know this is hardly an easy time for you either. (I feel inclined to write you a warning...about taking on too much guilt!) But I do appreciate very much your thoughts. And in fact we have just recently resumed using the services of an Ozcare carer to come and sit with Allen for four hours once a fortnight. (I could make it weekly, but when I formerly had a weekly carer I found myself running off each week when I didn't really want to. Anyway, I'm starting with fortnightly and will take it from there.) I wrote the above post at a low period, but it didn't last. Believe me, I do know and understand the need for relief and help. But as I'm sure you know from experience, sometimes things just have to be endured. And this week was Allen's 83rd birthday. We celebrated with a new set of tyres and plan to take a few excursions. There was a combined party yesterday for him and our grand-daughter. The kids gave Allen an E-reader, and this week we are seeing if he can learn at least to 'turn' the pages. If so, then I'll be able to find appropriate reading matter for him at a suitable text size. If he can't learn to use it, then I'll have a new toy! One way or another, Stafford, we are battling on. Thank you for worrying. But I'm sure you know that sometimes 'coping' has to be enough, even for heroes.

About me

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I started this blog in 2009 when I became a full-time caregiver. My husband had been diagnosed a few years earlier with primary progressive aphasia. Over the next four years until his death in 2013, we went on a journey of discovery about this rare condition. My blog is about what I learned, how we both coped and how the journey deepened our love and appreciation of each other. Allen’s journey is over, but mine goes on.