Complications and resolutions (from an email to an old friend)

With editorial interpolations in square brackets for the blog readers, plus initials for names.

We saw Dr K, the geriatriac specialist, yesterday for a check-up. He has referred DH to a nerve specialist, as [after some tests of his own] he thinks the crook legs (sometimes DH can barely walk even with the wheely walker) are due to the peripheral neuropathy and not arthritis. Makes sense — oor chiropractor is doing his best for the arthritis. The specialist also changed the pain medication to something which is both stronger and not confusion-promoting. 

[Some weeks ago when the pain was extreme, we couldn't get to see our regular GP. The one we did see prescribed Tramadol. Our usual guy, when we went back to him, was concerned that this could cause increased mental confusion; but as I noted that it did seem to help with the pain, did not countermand its use. Then a nurse who interviewed us in regard to respite mentioned that Tramadol was inadvisable for the elderly, so I mentioned it to the specialist yesterday. He said it should be used only rarely, for extreme, unusual pain — but DH's pain is chronic. He has also been on Panadol Osteo three times a day, and occasionally Codeine at night if the pain is particularly severe. Dr K said to take him off the Panadol Osteo and Codeine — and certainly Tramadol too, except very rarely — and instead use Panadeine Extra twice or thrice a day. This morning, however, his legs are so sore that I have also applied a capsicum ointment which our regular GP recommended some time ago for pain relief. Later today I'll be using some techniques supplied by a friend who is a cranio-sacral therapist, in which I've been encouraged by chiropractor, GP and now geriatric specialist.]

I have good respite in place now: (a) 'emergency' respite when I have medical appointments that don't require DH's presence (b) a regular package that includes 4 hours of leisure for me on Monday mornings and 2 hours Thursday arvos to go shopping. [An alteration from the original Tuesday mornings.] I am just in my second week of that one. These are both in-home respite: a lovely young man comes and talks to DH, lends him books, and brings DVDs to watch. The package includes one and a half hours of housework (as part of the Monday morning stint) and podiatry appointments six-weekly, which he needs because of his diabetes. This is all free, and I have been able to dispense with the Home Care domestic help, which, though indeed helpful for that time, was fortnightly and low cost rather than no cost.

At first I didn't quite know what to do with my unaccustomed leisure! The local Art Galleries are not open at that time, and the local morning movies finish too late.  :(   But I have put the word out to friends that that's when we can meet for coffee, and have done so with one already. Other ideas include meditating in park, writing letters to neglected friends not on email, reading, reading, reading. Also could get up to Tweed if necessary for items I can't find in local shops such as new shoes I need. So far I resist taking laptop out with me! But I do take the Kobo reader, you bet.

And from now on will be able to take my new smart phone! Telstra is still the only one that gives us adequate internet coverage — because they have a wireless modem to which I can attach signal booster (unlike Optus, which I tried very briefly and cancelled quick within the cooling-off period). But anyway, Southern Phone have been offering great deals for rural dwellers, so they now have our landline — rent free and cheap calls — plus gave me a free LG phone with $200 of free calls. I think I've about got the hang of it now, after a few days of playing with it.  I have loved our little Samsung phones and the v cheap deal with Dodo, however they dont get coverage where we live. DH will keep his (can't hardly operate computer now, let alone the LG phone!) so if he ever goes to hospital again, there is something on which a nurse could get him my number. It only costs $9.90 a month. But it's cheaper for me at this point to cancel the contract on mine. The new LG does have coverage here. I made them promise it would before I signed up, and they were not lying. Handy when our landline stopped working temporarily the other day, to have another usable phone in the house.

We now need extra respite, as it has become very clear DH can no longer cope with WordsFlow writers' group. He just gets too tired, going to chiropractor first and then the group — and afternoons (group time) are his low point anyway. So I have switched the chiropractor to another day, and now I am hunting for extra respite for my Friday afternoons. There are some possibilities.

Luckily I am pretty well myself, and the free Monday mornings do a lot to help my stress levels! We also attend a monthly social group for coffee and chat, arranged by the Community Nurse, for carers and carees. Research shows that the best thing to keep dementia at bay is not crosswords and such (though they help) but social interaction in groups. Also it is very good for the carers to meet with others who know just what it's like. We meet at a café overlooking the river, and we enjoy it very much. It's also an opportunity to learn the latest on dementia, as the CN is currently doing a Masters in the subject.


Post Script


Just got a call. The same mob that organised the Monday and Thursday respite has just found me the 5 hours I need on a Friday! This should allow me to squeeze in a chat to my lovely psych lady as well.

Finally, a respite and care package!

Joyous news!

At last we have a package in place that includes twice-weekly respite care. This means I am available to spend time with my friends or explore other leisure options for four hours on Tuesday mornings. There is also a shorter Thursday arvo slot, which is meant for shopping and errands. My Darling Husband is going to get some nice male company at home, and I can get out and about without worrying about him.

The package also includes the same amount of housework I was getting from Home Care, but at no cost as opposed to low cost. And we'll get his podiatry treatments (necessary due to his diabetes) for free too. We did anyway, through the 'primary care' program, but now we can switch that to the chiropractor and save a bit more money.

I am stunned to have leisure! I have gradually become unused to that. The woman who interviewed us and put all this in place asked, 'What will you do in your time off?' Apart from the obvious, meeting friends for coffee, I couldn't think! It seems I've been so busy keeping everything together that I have become desensitised to my own needs. But by now I am starting to realise I could get up to Tweed Heads to buy the new shoes I'm needing, or I could see what's on at the Art Gallery, could maybe even visit Crystal Castle occasionally, or get down to Byron Bay to browse in Abraxas Bookshop and eat a Norgen Vaaz rum'n'raisin icecream ... all the things that have gradually dropped off, largely due to DH's deteriorating mobility and the fact that he should not be left alone for long. I could get out to Mt Warning and do some energy work, as guided by the Universe, or visit friends at nearby Uki. Vistas open.

I also think I will spend some time quietly reading and writing over a cup of coffee at one of the cafés in town. I don't get nearly as much time as I'd like for either, especially the reading. I envisage taking my laptop and my e-reader. I did have fantasies of just sneaking out to my garage [library / temple / consulting room] for four hours, to read, write, meditate and do a spot of Tai Chi without interruption — but at such close quarters, I fear interruption might still happen!

Anyway, I have advised local friends and asked them to please get in touch if they are available for coffee, Art Gallery outings, etc. any Tuesday morning.

The respite has already begun. On Thursday a delightful young man turned up and spent a couple of hours chatting to DH about things of mutual interest, looking through old albums together, and so on. I was able to take the cat to the vet for his monthly arthritis injection, drop him back home and then go off and do a bit of shopping. I even had time afterwards for a quick coffee and a read of the Kobo. I have now discovered the only café in our little town which stays open after 4 — and a thriving trade it was doing, too. I got home 15 minutes earlier than expected. When I told the psychologist this, at my Friday session, she suggested I might use any extra time in future to sit in the park and meditate. An excellent idea.

Temporary problem

On Friday DH spat the dummy and declared he didn't want to go to the chiropractor and the writers' group. I tried to persuade him it was in his best interests to go, but he was adamant.

'I want to do what I want,' he said.

Fair enough, I thought, but then had to arrange care for him at short notice. I rang Commonnwealth Respite, which does emergency care when I need to go to medical appointments. Luckily they were able to find someone with very little time to spare.That covered my sessions with the chiropractor and psychologist in the morning. She even did my ironing for me, so as not to get bored while DH read and dozed in bed, and she gave him and the cats their lunch.

For the afternoon at the writers' group, which I do rather like to attend as I'm the facilitator, all I could think to do was call on our handyman. He's an old friend too, a very good bloke, and has been a carer for an elderly lady in the past. However, he works for himself and charges a flat rate of $20 an hour, so that ended up costing us $80. Luckily he never minds if I take a while to pay things off, and he did a couple of jobs we'd been needing while he was here, at no extra charge. Even so, they normally wouldn't have cost us that much. Add to that some problems associated with a relocation of our meeting room for the writers' group, and by the end of the afternoon I was so stressed that I cried all the way home. (Not the best way to drive, but I made it home safe.) I probably would have been better to just ask someone else to take the group that day but I was caught on the hop ... and it forced me to address a few things, e.g. I've figured out a solution to the relocation problems.

After some rather emotional discussion, DH and I have now come to an agreement that he will see the chiropractor and attend the writers' group fortnightly, and stay home on alternate weeks to do his own thing. I now have to find some form of funded care for him on alternate Friday afternoons. First port of call on Monday will be the new respite people. Theoretically we're entitled to more hours than they've given us; whether they have staff available at that time might be another question. But I have a Plan B and Plan C, too.

Not getting upset is the trick

I am getting used to the occasional bizarre remark, such as, ‘Usually, after a session like that, the agency gives us coffee and discusses it with us.’

A complete mystery to me, so I ask, ‘Discuss what?’

‘The situation,’ he says, with an air of some impatience at my obtuseness. A few more questions get us no further on that, so I change tack:

‘What agency do you mean?’

‘You know — the ad agency.’

So then I am able to tell him that I have never been to an ad agency with him, and that he must have been in the past for a minute. (He was briefly in advertising, long before I knew him.) He is able to grasp that and agree, ‘Yes, I must have been.’

I am getting used to him waking up after a nap and thinking it’s a new morning — or waking up on a new morning and thinking it’s dinner-time following a nap. No big deal, though it sometimes takes a few attempts to explain before he gets himself re-oriented.

I’m perfectly prepared, nowadays, for the fact that he will wake after a dream and think it was real and he’s still in it. Or for his conviction, after a phone call with any of his children, that they have been here in person (even though they all live interstate).

Other new behaviours are harder to come to terms with. I need strategies!

He will sometimes round on me in fury if I fail to understand something he has said, which to me is incomprehensible. Trying to use logic only makes matters worse. Obviously he has his own logic, in which it all makes perfect sense. We can also end up screaming at each other when he gets over-solicitous for me and wants to call an ambulance for a mild tummy upset, and I won’t go along with it. It comes from love and I appreciate that — but you wouldn't think so, listening to the rows. (It also shows me that I must think of who to call on if I did need to go to hospital. He can't be left to fend for himself, and neither can the cats.)

As well as learning not to bother reasoning with him but somehow to divert him instead, I also have to learn not to take his anger personally, not to feel wounded but stay calm. I am learning, but it’s taking a while.

I am the one who can lose it when I am in the middle of getting us ready to go out — which is a bit like doing so with a young child, these days — and he asks me the same question six times in a row. It would be all right if I didn’t have other things going on simultaneously, plus a wish to be on time for our appointments. Maybe the old ‘count to ten before speaking’ rule would come in handy here.

The worst, for me, is that he can be so changeable. It’s as if he is two different people. For instance, when the possibility of men’s groups came up in connection with respite, he said an emphatic no. (He had tried a men’s group years ago and didn’t like it. ‘All they do is sit around complaining about their wives,’ he said.) Then, two hours later, he declares, ‘I’d love to try a men’s group! You don’t think I want to be with a lot of women, do you?’ He is not only perfectly serious but quite angry at the very idea of not going to a men’s group. This complete about-face is just one example of the changeableness. It comes so out of the blue that I'm taken aback, and is always an extreme contrast like that — which makes it difficult to plan ahead very far, for one thing.

But it’s not the inconvenience that bothers me the most. It’s losing the person I love, having him slip away and/or turn into someone else. He’s still here a lot of the time, even if it’s often in a childlike version of himself. That’s OK; I can still converse with him, we still laugh at the same things, hold similar political views, and so on. It’s the angry stranger I can’t handle. That stranger is suddenly here, out of nowhere, unpredictably — then gone again, and he’s back to his usual self, not even knowing he was ever any different.

Not that he never got angry in the past; of course he did. But it was him getting angry. Now, sometimes it’s him but often it’s some bloke I don’t know. That feels scary, and lonely. I go away and cry by myself, where he can’t see. The man I know would be very upset at having distressed me, but he is unable to alter the distressing behaviour. I have to find a way to alter my response.