27 May 2012

To socialise or not!


Yesterday we went to a neighbourhood party. The occasion was the 87th birthday of a lovely man who is something of a local icon. Like many around here, we are genuinely fond of Dudley, who is a friend to everyone and who spends his mornings eradicating weeds from surrounding bushland, as his contribution to maintaining an environment that he loves. In the afternoon he usually calls in to one or another of our houses for a bit modest socialising. He never stays long, but likes to keep in touch with us all. But the point of my post today is not how deserving Dudley is of being feted by neighbours, for he certainly is and I'm only too happy to acknowledge that. No, my point is that even though we have the highest regard for our friend, I don't think I will subject Allen, or me, to any more such parties with casual acquaintances.

Before we left home yesterday, Allen went through his various 'I have aphasia' cards and selected the one that he thought contained the best message for the occasion. He put this card in his pocket so it would be handy. And he promised me he would produce it when trying to talk to anyone, to help explain his difficulty in communicating and show that he wanted to keep trying.

We live in a friendly neighbourhood, but each house sits on one or more acres of land. This is a hinterland location and there are no footpaths. The meandering road goes up and down hills. People don't walk along our road very much, except to exercise their dog if they don't have a fenced area around their house. So we don't regularly see our neighbours, except when checking the mail or passing each other in cars. We know most of them by sight or from occasional short conversations near a mailbox. Dudley, who visits us all regularly, is something like our town crier, passing on news from house to house. But we've been here since 1996 so by now most of our neighbours know something about the fact that Allen isn't capable of independent living, that he has had a long hospitalisation and that I'm now his carer. I think a few assume he's got dementia or Alzheimer's. We aren't close enough for me to disabuse them of such ideas, but I do try to provide appropriate information whenever the opportunity arises. And for many years until her death, Dudley cared for his own spouse, who did have Alzheimer's. So he, at least, is no stranger to our situation.

Ours is probably the most modest house in the area. Houses across the street sit atop a kind of ridge which offers fabulous views up and down the coast, about 10km away. In the last 10 years most of those properties have been expanded or redeveloped and have sold for between one and three million dollars. So we aren't exactly in the same financial situation as many of our neighbours. We don't belong to local golf or tennis clubs, and we don't regularly travel interstate or internationally as many of them do. All of these things probably contribute to there being a bit of a gulf between 'us' and 'them'. But I doubt if anything contributes more to that gulf than Allen's inability to talk and socialise, and other people's inability, or unwillingness, to try and bridge that gulf.

Allen spent most of the afternoon party sitting by himself, or with me. Most guests said hello to him, and a few asked 'How are you?'. But that's as far as these conversations ever got before people moved away. Allen certainly never got the chance to show his aphasia card, explaining why he was having trouble communicating. I've never been much of a party-goer myself, but Allen was always a very sociable person and would once have been right in his element in any group of this sort. Now it's just too painful for me to watch as conversations pass him by. He can't even get pleasure from listening, because unless people take the trouble to speak slowly and clearly, he won't be able to follow the discussion. I'm not sure it's as difficult for him as it is for me to see that happen. He may be a bit more oblivious and happy to just observe the flow. I tried to question him about this afterwards, but of often happens I couldn't get a clear picture of how he felt.

We have another lunchtime party coming up in a few weeks. These midday affairs are the only kind of parties I would subject Allen to, as noisier night-time gatherings fuelled by alcohol are definitely beyond both us now. But lately even daytime gatherings can be awkward. Any talk in an environment in which several conversations are going on at once is impossible for Allen to comprehend. But this next party is a very dear old friend's family event, celebrating her daughter's impending motherhood. Our girls were born at about the same time, and we've known each other since before their births. Besides, we have a lot more in common with this family and their friends, so there's more chance of 'connecting' in incidental conversation. (I had to laugh yesterday when I heard one guest ask another: "So, you still own that shopping centre?") There may also be more willingness to be inclusive, and to try and help Allen contribute in some way.

I don't want us to end up as hermits up here on our lovely little hilltop. But sometimes one can feel lonelier in a group of people than by oneself.





16 comments:

caregiver said...

It is a beautiful hilltop. We spend much of our time alone or with the staff or drs. But at least they understand. It is awkward to go to the stores at time, as well, as I am sure you know. And frustrating for us both. I love you photos and your wisdom and love while caring for Allen. Good decision I think. My dr said I must avoid isolation as much as possible however. I know you know that one, too. Fondly, gin

Anonymous said...

Your life with Allen has changed so much in the past few years, I can't even imagine walking thru those changes with a life partner. Makes me wish I knew Allen when he was younger too.
- Dor

Chartreuse said...

Thank you, Gin. I know others say to get out there and do things. And maybe they're right. But I know that a quiet life and the comfort of routines are very soothing for Allen - and me! He is never as functional or secure elsewhere as he is at home, just getting on with his daily pursuits. I don't feel isolated myself. Do you? But I'm someone who has always treasured a certain amount of solitude, so that helps.
And Dor, I too wish all of you had known Allen better in our younger days together. But I'm glad we did get to spend time together in recent years.

caregiver said...

Not normally. I have been a bit of a hermit most of my life. I like people but am sometimes shy. I feel fortunate to be able to be home with Bill at this time. It is so much easier on both of us! I love my own space and feel at peace here. So much better than stares, confusion and explanations.

Chartreuse said...

Oh I agree completely, Gin. Allen looks perfectly 'normal' so we don't get stares until he tries to talk. I can just imagine how difficult that must be for you both. I am frequently amazed how poorly many people cope with trying to relate to someone with a disability. I guess one thing we can be grateful for is that we may have learned how to treat otherness as normal.

caregiver said...

Oh Bill looks normal as well. It is just that because he cannot read and I have to help him and he looks at me confused at time people notice. And he can't see so that adds to the confusion! Oh what a deal we both have to contend with. Life!

Chartreuse said...

I imagine sometimes we carers must sound like agony aunts to anyone who thinks carers should have halos. Reminds me of when I was a teacher and we would let off steam in the staffroom. Then parent helpers started to join us there for morning tea, and we had to remember to reel in the jokes and rude comments about some kids, as it made us look like a bunch of old crones. But hey, you have to let off steam sometimes, right?

caregiver said...

I agree.

Red said...

It's a difficult situation for you. Far be it for me to advise you or say meaningless things As I have not been in your situation. You do deserve some "me" time.

Gabrielle Bryden said...

It does sound difficult. I had a neighbour friend who had a hearing aid and he had stopped going to parties as all the noise created a situation where he couldn't follow conversations. He was happier with meeting people one on one or two at the most. Maybe you could catch up with neighbours that way. Parties/social gatherings can be a lot of effort sometimes - if I had my son with me, I was always preempting his discomfort which maked me anxious - he didn't enjoy birthday parties much until older.

Chartreuse said...

Red, it's a curious thing about wanting or not wanting 'me' time. I do have a carer who comes and sits with Allen for half a day once a fortnight. (I could have her weekly, but I found in the past that I was often having difficulty coming up with things to do away from home every week. Allen and I do get out quite a bit - to shop, run errands, go to Film Society movies etc. But short of finding a way to take two weeks off by myself, I don't know that I really want more time on my own. Somehow when I've had that it has felt like an unreal situation. It seems to me that since this reality is my life, the secret to dealing with it is just that: learning to deal with it. Puritanical of me, perhaps? The cognitive-therapy approach to caregiving? Just think it better and it will be?

And Gabrielle, thanks for dropping by. Yes, I agree re one-on-one or just couples for socialising (apart from our aphasia support group, of course - and maybe the comfort of that group of like-minded souls has rather spoiled us for any other type of gathering). I know what you mean about always having one ear cocked for what the other person is experiencing. In many ways it's like trying to socialise while minding a small baby or toddler, except in that case most people are only too happy to hold and entertain the child!

caregiver said...

I believe that Bill not being able to hear well is becoming a concern to him along with the other things. We are looking into a hearing aide. I keep forgetting to call! No wonder I wrote about Mushrooms today and ended up talking about short term memory. As a gardener, C, I hope you like it.
Another gnarly tree with a surprise!
Get out today and hugs that little girl if you can. gin

Stafford Ray said...

Losing contact with people is serious business, so although I am sure you have considered it, my sister and husband moved into Buderim gardens a few years ago, and live independently. But my (very) isolationist BIL, now plays the flute in the orchestra and Sis is in the thick of everything.
At a place like that, Allen could just be with you and enjoy the company without the pressure of trying to communicate at special outings when that might be the only chance he gets in a while.
Some of those places do have gardens too. But, I would find it hard to leave where you are too!

Chartreuse said...

Thanks for stopping by, Stafford. And yes, I know we should be considering a place such as you mentioned. We did go around and look at some a couple of years ago but I'm afraid I felt a slight revulsion at the idea of living in such a monoculture. Still, things have changed with us. But one problem I have is that what I might choose as a lifestyle for Allen and me could be quite different from what I would choose for myself alone. And with Allen so much older than I am, it's hard to know which is the best choice. Hence, I opt to procrastinate. But in a short while events may force me to reconsider. We shall see.

caregiver said...

After another serious bout of diverticulitis and 6 weeks on antiviotics again, I am beginning to realize that I may not be able to be the sole caregiver anymore. And the sad thing is there is no one to help. Even the paid agencies are understaffed and funding cut. I am pondering taking a look at some type of assisted living arrangement where we have some help when needed. I opted not to stay in the hospital Sunday in ER after second CT scan because I cannot leave Bill alone and he would have been alone. Sadly, Chartreuse, we have made our choice to stay with our husbands and that has made our personal choices limited. He ate all the angel food cake this morning that I was saving to eat something soft that I could tolerate. All deals were off after that! lol

Chartreuse said...

So sorry to hear about your current dilemma, Gin. Really, sometimes I question which are the 'civilised' nations and which the 'developing' ones. The old and infirm almost always have lots of family around to help in countries where 'civilisation' has not buggered up the extended family's proper place in the scheme of things. I do hope you find a solution soon, even if it's only temporary.

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.