12 March 2012

Reading and writing hurdles

Allen is working on one of the A4 sheets that the speech therapist gave him last week. This is a particularly tricky exercise for him. Sample item:

Something you can cut that is not grass:_______________________

He holds up a pair of scissors and asks me "What's this called again?" I point out that the question is not asking for something you can cut 'with', but rather, somethat that can be cut. (And how grateful I am that we don't have to get through the spelling of 'scissors'!) We settle on 'paper' as a suitable answer.

This type of question is very difficult for Allen. His aphasia is now at the point where it's not only speaking and writing that he's having trouble with. Grammar and syntax are also harder and harder for him to process. The negative twist (e.g. 'not') in this series of questions requires him to make a grammatical leap that is especially challenging. In both oral or written language, Allen now does best with simple sentences in which the parts appear in a standard order (subject – verb – object). Complex and compound sentences, or sentences like the ones in this exercise which take a strange turn, are problematic for him.

Spelling, too, is proving more and more difficult – as well as writing, which has been a problem for a long time. Combine those two difficulties, and writing out a word like 'laundry' can take a long time, and several mistakes. By the time he is forming the 'd', he has forgotten what word he started out to spell – or that's how it seems. Once an excellent speller, Allen now regularly leaves out letters and makes other spelling mistakes – things he would never have done a few years ago.

Name something you drink that isn't milk:_______________________

I have no idea why Allen answered 'yogurt' to this question! Perhaps he was thinking of the smoothies I occasionally make with yoghurt. He managed to write answers to 16 of the 20 questions of this sort, but a few stumped him (e.g. "What is something hot that is not fire?" "Tell me something wood that isn't a table.") I don't know why. And the whole exercise took him well over an hour.

I'm not convinced that Allen enjoys these language exercises any more, even though he spends hours on things like this every day. And this has been going on, now, for almost three years. If there were other things he could do – such as woodwork or gardening - I think I'd suggest we throw away the pens and papers and books and just do other things that give him pleasure. But the fact is there is very little left that Allen can do to keep himself occupied. Once a first-class putterer and amateur carpenter, now he can't even bang in a nail or use a screwdriver even to just unscrew something. And he never really cared for gardening - though he was an able and willing gardener's assistant. But anything requiring strength, coordination or a steady hand is now beyond him. So working with pen and paper is about all that's left from his former life. It also happens to be that by which, I think, he has always defined himself – along with reading, and that, too, is proving a major challenge.

Large-print books reduce the amount of text Allen has to process in each line. But as with spelling, short-term memory loss is proving a real hindrance to his getting much pleasure from reading. Quite simply, he has to read so slowly that he forgets the main elements of a story by the time he goes on to the next page. Those texts that he can process are mainly the kinds of things given to primary school children. And even though he is willing to read such texts when working in the comprehension workbooks I buy from the educational supply warehouse, he doesn't really want to read about clowns, circuses and other childish topics when reading for pleasure.
Battles and Quests
Recently I stumbled upon a series of nonfiction texts by Anthony Horowitz, intended for upper primary students. Each of four books in this Legends series (Heroes and Villains, Battles and Quests, Beasts and Monsters, Death and the Underworld) features seven stories taken from mythology or fiction that are interesting enough to appeal to an adult reader. But the little books have just the right mix of type size, grammatical construction and amount of text per story to make them manageable for someone with A's problems. I found the first book in the local children's library, and promptly ordered the next three titles from Booktopia. Until now, we've relied on library books but Allen now wants to annotate his texts and underline various things. It seems to help him digest the content, so we're trying out his new method with these little books. So far they are holding his interest.

Allen's obviously determined to continue reading and writing, even as everything gets harder and harder for him, and more and more frustrating for us both. Can anyone suggest any titles that might appeal to a serious, mature adult whose technical reading age is probably no higher than 10 years?

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!"

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.