On friendship and helpfulness

MARIE: Once upon a time, I was very bad at asking for help. I used to get all embarrassed - I guess I felt that I was somehow inadequate if I couldn't manage everything on my own, and I felt it was an unreasonable imposition on friends and family to ask them to step in where I failed. I had no problem with offering help or being asked for it, though. Not very logical.

As Jon has got worse, I have had to learn to ask for help. In a somewhat roundabout manner, I had been urging other carers to ask for help, but took a while to realise that I might do well to take my own advice. Lots of people want to help, but may not know how to. And if we (I) don't tell them what we need, how can they know how to help us? The first time I asked for serious help, I had to really pull myself together, but it's getting much easier - and it helps that I am still waiting for that first rejection.

We get some assistance from the local council, of course, like the night nurses and the transport service to Jon's day centre, but I don't really count that as help, more as necessary support that we've been saving up for through years of tax paying.

Personal help is different. I believe in "paying it forward" and have tried in my own small ways to practice that. Now that we're firmly on the receiving end, I'm realizing the true value of friendship and helpfulness.

We get lots of practical help. My parents garden for us, my nephews fetch and carry, a neighbour keeps an eye on things whenever I'm away, my cousin's coming round to chop wood, my sister has helped with medical advice and supplies, etc. etc. etc. I count us very lucky to have such generous people around us. But there are two forms of help that go way beyond normal generosity.

The first is Jon's best and oldest friend, who has quite simply moved in with us to help me care for Jon until we are offered a nursing home place. He has been with us for a month and a half now and is showing no signs of being fed up yet. His presence and his practical help (which extends beyond care to lawn mowing and home repairs) makes an enormous difference to our quality of life.

The other is Jon's first wife, who again last week vacated her flat to let us stay there while visiting Jon's daughter and her family. No. 1 wife then takes over the tiny guest room in Jon's daughter's house, which has just proven impossible for us to fit into. Yes, we could go to a hotel instead, but a visit is many times more enjoyable when we can stay in a flat with separate bedrooms and space for Jon to walk off his restlessness in the night.

Aren't people like that just amazing?

Dare I say...

…that I’m away having the most amazing time? Yes, I dare – because this blog is worthless if we’re not brave about the truth. So: I’m having a great time in Helsinki attending an international conference for carer organisations and researchers on caring. I’m meeting people, sharing ideas, building relationships, and learning loads about approaches to caring elsewhere.


It all came about because we formed an association for carers in Denmark (Carers Denmark) on Saturday. On Sunday, I dropped out of full-time caring – as you may have guessed, we applied and are now waiting for a nursing home place for Jon, but I had to admit that the waiting time was taking its toll. So now Jon’s oldest and closest friend has moved into our house and taken over as main carer until we get an offer of a nursing home place, and on Tuesday I was able fly off to join this brilliant conference.


I feel kind of guilty about feeling so good – but not guilty enough to put much of a dent in the good. It’s been almost 8 years of caring, and although there have been ups and downs, I think I can honestly say that there has not been a single day that was just easy-peasy. Don’t get me wrong, I don’t regret for one moment our decision a few years back that I should drop out of work and stay home to look after Jon. Although not great from a financial perspective, it felt absolutely right. It allowed me to spend time with Jon while he still enjoyed it, and it allowed me to get into the world of volunteering, which has brought me new friends and intense interests. But now Jon enjoys my company less, the care tasks have become more onerous, and I am just simply worn out by the length of time this has been going on.

It’s not that Jon is getting worse (well, he is, but slowly), it’s more that I have burned out. The best way I can explain the feeling is to compare it to leaving the house in the morning in a new pair of shoes that are just a tiny bit too tight. At first you walk along just fine, but after a bit the shoes start to bother you. You go on, perhaps limping a bit, then you develop some nasty blisters, and sooner or later you feel you just can’t take another step in those shoes. The shoes didn’t change, but your ability to wear them did. That’s how I feel about caring – and being burned out is not just bad for me, it also means that I’m not able to care with the calm kindness that I think Jon deserves.

So Jon’s wonderful, generous friend has stepped in and taken over. That is such a fantastic gift for both of us. Jon is enjoying some “man time” and loves talking about the old days – school, music, girlfriends, whatever – and I get to start rebuilding a life for myself in the certain knowledge that Jon is being cared for with competence and friendship. I hope our friend understands how much really this means to us!

The nursing home we have applied for is a lovely place with big bedsitting rooms, good common facilities, near the woods and the sea. Jon stayed there for a few days of respite care this spring and quite liked it – his main complaint was that they didn’t provide WiFi, and that can easily be remedied if he moves in. I truly believe there is a chance of a pretty decent life with him there and me visiting as often as I can for a little strolls and cream cake excursions. I’m feeling pretty positive, and I don’t think it’s entirely down to my tablets or the joys of Helsinki.

I’ll tell you more about “my” new carer association next time. It’s “mine” because I took the first initiative and was rewarded (or possibly punished) by being elected the first chairperson. There’s a to-do list as long as your arm, but there’s also a great team behind the idea, with a huge amount of energy, enthusiasm and experience. I’m sure we’ll be going places.

Decisions

MARIE: I hate the person I have become. I realize that I am severely stressed now, perhaps mildly depressed too. It’s making me care for Jon in a way that I don’t approve of. I am too emotional, cry to often and get angry too easily. I am ashamed of myself, yet although I know exactly what it takes to mend the situation, I have had such resistance in me against taking the next step. And plenty of resistance from Jon, too.

It’s harder and harder for Jon to be alone now. He wouldn’t agree and calls me controlling and overprotective, while I say his lack of self awareness on this point is part of the dementia. But it’s true, he’s often fine on his own – the trouble is that we can’t rely on him being fine every time. Part of my reluctance to return home is that I don’t know what I’ll find when I open the door.

Things go wrong all the time, big things and small things, things that matter and things that don’t. It’s not each individual mishap that grinds me down, it’s the sum total of them. And a fairly new complication is that Jon has taken to claiming that mishaps were not mishaps at all, but intentional experiments or somebody else’s fault. (Apparently this is textbook avoidance behavior, but that doesn’t stop it being a total windup at the end of a demanding day.)

We cannot go on like this, so we have boldly taken the next step. After a long and very helpful chat with our local dementia consultant, we have decided to start looking for a nursing home for Jon. One central question the consultant asked Jon was, would he rather have a happy wife who visits him often, or an angry, worn-down wife who nags at him all the time? The advice from all sides, which few people seem to take, is to make the move while the person moving is still well enough to make decisions about the place and to get to know the other residents and the staff – rather than wait until both the sick person and the carer are so worn down that the smallest disaster can force them into a hurried, traumatic move from which neither of them ever truly recovers.

Jon and I will try to be sensible about this. We’ll look at various options over the next weeks and then decide where he will apply. It will most likely be quite a few months before a place is offered, but starting early means we can afford to wait for a really good unit.

Knowing that we have taken the first step down that road is a source of sadness and disappointment, because it was NOT supposed to be like this. But at the same time it is a relief and a weight lifting from, I think, both our shoulders. Maybe it also helps that I’ve just started on anti-depressants. I’ve always said that I wasn’t about to start taking drugs because my husband was ill, but I think I need a little relief to carry me through the next several months. Wish us well, we need it.

Old year, new year

MARIE: The 1st of January is a day for looking back at the past year and forwards to the new. Not sure that’s what one really wants to do with Parkinson’s and dementia in the mix, because what will you see in the past year but deterioration, and what can you look forward to but more of the same?

 

Nevertheless, the past year did include some high points, like Jon’s 60^th birthday in April when the whole family came over from the UK for an elaborate two-week celebration. He had a fantastic time and enjoyed seeing them all together, even if he did find all the activity rather challenging. My 50^th birthday in August was a shorter celebration but with far more people, so by common consent Jon opted out – which was the right decision, but sad nonetheless.

 

2013 was also The Year of the Pump, in that Jon got on the duodopa just over a year ago. It’s turned out to be more work to maintain the pump than we expected, and to be honest the symptom control is not as great as we had hoped, but all in all Jon finds the duodopa is still vastly preferable to his old oral drugs. With the latest adjustments to dosages and the latest addition of nighttime nursing services, we seem to be in reasonably calm waters Parky-wise – although rather sadly, travel has become harder now that we have come to rely on the night nurses.

 

For me, 2013 was The Year of the Book, because I spent much of the spring giving talks about the anthology of carer stories I edited for the Danish Parkinson’s association, and because I got stuck into the writing of my next book, which aims to be a collection of practical advice for carers. At the same time, I have become increasingly frustrated with the fragmented nature of my voluntary work, so have decided to ditch a number of small engagements in the new year and gather my energy into a big push in one major engagement – more of which later.

 

I expect 2014 will also be the year when we have to look seriously at our living arrangements. There are still opportunities for adjustments at home, but sooner or later we'll reach the point where it's better for both of us if Jon moves to a care center. I must admit I sometimes dream of being free from the million small and large care tasks and being free again to simply enjoy spending time with Jon, maybe going for a little walk, maybe just holding hands on the sofa while we listen to the radio. Simple things that are surprisingly hard when you feel snowed under with the practical demands of the day.

 

But I dread the decision. I know carers who waited too long, who wore themselves down to the point where they were unable to care properly at the end. I don’t want that for us, but nor do I want to end our life together too soon. I know it'll have to be my decision in the end, because the dementia stops Jon from reflecting rationally on the situation. Bloody hell, but it’s a hard one!

 

So all in all, the new year sees me in rather subdued mood (Jon not so much, he's got his happy pills working wonders). There are challenges ahead, but we are fortunate to have good support and – very importantly – understanding from our family on both sides of the water, so whatever comes I’m sure we’ll manage somehow.

Evenings from Hell

MARIE:  Almost two years ago, I gave up ‘proper’ work and was instead employed by our local authority as Jon’s carer. Back then, they assessed his needs at something like 11 ½ hours per week. There have been a few reassessments since, first to about 20 hours, then to 31 ½. Such a change in less than two years speaks unpleasant volumes about Jon’s decline and the strains his diseases now put on our daily lives.

 

The result is that I’m developing carer stress, and it’s making me less able to care in a good way. Stress (from caring or any other kind of work) makes you irritable, tired, unfocused, irritable, clumsy, forgetful, irritable … you get the picture. Recently, I was at an excellent talk by a woman who has worked with dementia sufferers for many years. One of the issues raised was how you can know when it’s time to take a step back from caring and leave it to the professionals. “When the carer is so burned out that he or she can no longer care with kindness” was one part of the answer. That’s so uncannily, precisely what I fear may be happening with us.

 

So I am taking a step back by leaving the nighttime tasks involving drugs and pump etc. to our local nurses. It happens too often for comfort that at the end of a long day of putting Jon’s needs before my own, I just haven’t the energy, physically or mentally, to deal with the madness that has become a regular feature of our evenings. What happens – not every night, but most nights – is that Jon gets one or two ideas in his head that he just can’t shake loose.

 

One is that he needs the toilet. Nothing happens when he goes, but the moment he’s back on the sofa or in bed, he feels the urge to go again. Since he moves very unsteadily at night and has epic battles to do up his trousers, this does not make for relaxing nights in. The other idea is that he wants his duodopa pump off, and he will keep nagging with increasing urgency and insistence, until he drives me to distraction or forces me from the room. The duodopa should be stopped as late as possible so that the effect of the slow release tablets he takes instead can last him until morning. At great cost to us both, we negotiated a truce to the effect that I stop the duodopa at 10:15 pm, but in the grips of his fixed idea Jon forgets the deal and forgets the logic, and I can’t reach him with reason. And seeing that I’m already irritable…

 

I’m sure there are better ways of dealing with this, but it’s clear that I can’t find them or carry them through at the end of a demanding day. So nurses to the rescue. Starting last week, Jon gets professionally nursed at bedtime, with an extra visit around 3 am for another tablet and a general check on his condition.

 

I hope that will be enough to bring us to calmer waters, at least for a time. As I write this, we are on a four-day trip away, which should have been a relaxing anniversary celebration in a wonderful German spa hotel, but is turning into yet another nightmare for entirely predictable reasons. We’ll have to accept that we simply can’t get by without nursing help anymore, and that means we can’t go away together anymore. One more loss.

 

I hope you won’t judge me harshly when I say that I want my life back. It's too much to cope with now. I’m very much afraid that this marks the beginning of the end of my time as a home carer.