New difficulties

This morning was bad.

Everything with my Darling Husband is exacerbated because of the physical pain he endures almost constantly. He is astonishingly brave and patient, but sometimes it gets to him. This morning he woke up cranky, and who can blame him? His right shoulder has been painful for weeks. It is now suspected to be bursitis, and he’s to get an x-ray. If it is bursitis, he will have a cortisone injection.

The peripheral neuropathy in his legs has got worse lately, too, and the things that used to relieve it are no longer working. He has just started new medication; if it has no obvious effects after a week, it can be increased. Apparently the doctor must first see if it reacts badly with everything else he is taking. So, for the present, his pain is not lessened.

On top of all that, he is obsessing more and more about finishing his autobiography. When I think of the years in which I begged him to get on with it ... ! But he felt no urgency then. Now he is confronting the idea that he won’t be around forever. When the pain is extreme, he sometimes thinks he must be going to die very soon. (Or maybe it’s a wish.) Recently he became convinced his kids hadn’t phoned him in months. This is not so; they love their Dad and are very good about keeping in touch. I told him they had spoken to him recently. He believed me, but kept forgetting quite quickly.

‘Tell them, if they want to talk to me they’d better hurry up,’ he growled. I don’t think I’ve got long.’ I’m no medical expert, but I don’t myself see any signs that he’ll be keeling over very soon.

Sometimes I can turn these conversations into jokes and laughter. Sometimes reasoning with him works. This morning was pretty hopeless. It is often hard to understand what he is getting at; he has notions in his mind which don’t match reality, and now lacks some of the words to explain. When I ask questions to try and understand, he gets impatient with me because he is sure I already know. Sometimes he accuses me of ‘double speak’.

Finally, this morning, I understood what he has been on about for a few days. He used to do typesetting and layout. He wants to set up some autobiographical chapters that way and is complaining that our unit doesn’t have the room, the equipment or the trained personnel. As he does more and more now, he announced that we should go home. Then he collected himself and said, ‘Oh, we are home, aren’t we?’ (Perhaps the many times I have had to tell him so are starting to sink in.)

I told him — several times in between his forgetting again — that typsetting and layout are done on computer now. This occasioned various responses:

‘I don’t care. It should be done properly.’

‘Well why did those clowns ask me to do it then?’ (I was unable to ascertain what clowns; he told me he didn’t know.)

‘Well I don’t know how to do it on the computer, so I’ll have to quit.’ (I encouraged this decision, you can bet —but it was soon forgotten.)

‘I’ll have to point and you’ll have to do the pasting.’

The experts advise, ‘Don’t argue; agree.’ When I agreed to that last but said I couldn’t do it right now, that pacified him.

He was very angry with me during much of this conversation. I was in tears a few times, for all sorts of reasons.

‘Stop that,’ he shouted. ‘Crying won’t get you anywhere.’

This is the same bloke who only yesterday said, ‘How was I lucky enough to marry a treasure like you?’ When he’s more-or-less lucid, he’s very appreciative of everything I do for him — which is more and more as time goes on. This last week I have added shaving him, and helping him shower, dry himself and dress, to my regular duties.

Now I am out on my respite morning. I am sitting in a cafe with my laptop. Before I left home, DH said to Jay, the nice young man who is his carer, ‘I don’t think you can be much help to me today.’ Jay told him he was there to help me for the first one and a half hours (he does domestic duties for that time) and after that would see what he could do for DH. As I left, I heard Jay sing out to DH from where he was cleaning the bathroom, ‘If you need anything, just holler out!’ He seems to do an excellent job; I left feeling that DH was in good hands. It’s nice to have a break.

Writing this may not seem like much of a break, but at least I can get a clear go at it. This morning I was only just dressed when Jay arrived, because DH kept calling me back to the bedroom to confer on his typesetting project.

What I would really like to do is relieve his anxiety, but I can’t see how. I just have to hope that he forgets this obsession eventually, as he has some others.

Sequel

Tonight I discovered that it wasn’t his autobiography he wanted to lay out. He selected some pages from a magazine of historical photos and asked my opinion on which ones looked good together. As he talked I realised he was back in his past when he used to produced newsletters for businesses. He wanted to do a presentation, ‘to show them what we can do’ and told me we should hand copies out to about twenty people.

I went along with it and helped him decide on the placement of some photos, then persuaded him to leave the rest until tomorrow. He was happy to have made a start, but I dread the possibility that he will want to take the project all the way to the conclusion he has in mind!

P.S. He had his ultrasound this afternoon. It is bursitis and he will get the injection on Friday.

Can we prevent or delay Alzheimer's?

Hobnobbing, as I now do, with people who are in touch with the latest findings (geriatric specialist, researchers, community nurses) I can say a cautious yes. I think it rather depends on when you start — although I would also quote those well-known adages: ‘better late than never’, and ‘every little helps’.

What I’ve learned is that, like so many other conditions, it’s at least in part — large part! — a matter of lifestyle.

For a healthy old age, follow these steps:

1. Know and control your blood pressure.
2. Know and control your blood sugar.
3. Know and control your cholesterol.
4. Control obesity.
5. Exercise for physical fitness.
6. Healthy eating.
7. Mind your mind (exercise the brain). At least 2 hours a day is recommended, e.g. crosswords, card games, chess.
8. Don’t smoke.
9. Don’t drink alcohol — or drink very little. The geriatric specialist told me that every drop of alcohol kills a brain cell! ‘Take a cell and add one drop of alcohol, the cell dies.’ He added, ‘Fortunately the good Lord gave us lots of neurones.‘ Nevertheless he advised extreme moderation.
10. Social interaction.
11. Avoidance of stress / stress release techniques.
12. Positive thinking. (When you catch yourself in negative thoughts, switch.)

I've heard this summed up as attention to spiritual, physical, mental-emotional and social wellbeing. I would want to take spiritual a bit further, but I guess we all have to work out those details for ourselves.

One study says, ‘Mental and physical exercise are most important because they influence the others, by keeping weight and blood pressure down, reducing the risk of diabetes and depression.’

The latest findings are that social interaction is even better for the brain than doing crosswords and Sudoko.

‘The older you get after 50,’ I was told, ‘The more it’s about prevention’. The chances of getting Alzheimer’s doubles each decade. In your sixties it’s 5 in 100, in your seventies 10 in 100, in your eighties 20 in 100.

‘However,’ this researcher pointed out, ’That’s still a small percentage of the population. The majority of people won’t get it. Ninety people in a hundred who are in their seventies won’t get it.’

There can be a genetic predispositon but it’s not necessarily cause for alarm. Some people who have that gene don’t get it, and some who don’t have the gene do. Of those who do have the gene, the percentage who will get the condition increases only slightly: in their sixties, it goes up from 5 to 7.5 in 100, in their seventies, it’s 15 in 100. It’s still a relatively small risk.

The healthy lifestyle practices listed above don't guarantee you'll never get it, but they increase your chances. They are probabilities.

Early assessment

The medical people agree that the earlier it's diagnosed, the better your chance of effective treatment. And there are treatment options available. I was recently surprised when a friend expressed the opinion that, ‘There’s nothing you can do about it‘ — temporarily forgetting it wasn’t so long ago that I myself discovered otherwise. There is not yet any known cure, but my Dear Husband is on medication which can slow down the deterioration. It takes about six months to know how well it’s working; if it appears not to be, there are other medications which can be tried.

All the same, I’m sorry we didn’t get him diagnosed sooner. One reason for that was that he wouldn’t entertain the idea, even though his Mum got Alzheimer’s fairly early. He held to the New Agey notion that if you don’t acknowledge the possibility, you don’t manifest it ... or something like that. Even when his forgetfulness and confusion became more apparent, it was very hard to tell whether they were symptoms of dementia or of high blood sugar. There’s no doubt even now that when his blood sugar was out of control, that seriously exacerbated his mental disorientation. Switching him from diabetic meds to insulin helped enormously in regulating his blood sugar; then it became clear that wasn’t the only thing affecting his brain.

Alzheimer’s is in my family too, on my fathers side. With hindsight I realise my Dad had the early stages in his fifties, only was adept at disguising it. In old age it became so pronouned that he had to go into care. His uncle had it, and tales of Uncle Alf’s behaviour were legendary in the family. Also my father’s great-aunt had it, and one of his brothers got it very late in life. Now one of my paternal cousins has just been diagnosed. Observing at close quarters the effect on DH, I thought it best to act early and requested assessment for myself.

I passed the initial tests with flying colours, which indeed I expected to do, and if it wasn’t for the family history the specialist would not have taken things further. As far as he could tell, my cognitive function is fine. (He did add, though, that with intelligent, educated people, it is much harder even for professionals to discern ‘subtle memory loss’ because they are good at compensating.) Because of the family history, he ordered blood tests which I have now had, and scans which I am getting soon. I had the option to test for the gene, which costs $70 and yields no useful information — given that some people with the gene don’t get Alzheimer’s and some without it do, and in any case it makes no difference to treatment. But I am beset with the sin (?) of curiosity, so I had it. I won’t get any of the results until the end of May.

A couple of heavy drinking periods I had decades ago are a bit of a worry, but I wasn’t addicted and was able to stop at what the specialist considers the right time. I told him that since then I have sometimes drunk a little, and he recommended it be as little as possible. That’s no great problem, except on days when life with DH is particularly stressful. Then one or two small glasses (half the standard size) can take the edge off, so I haven’t stopped altogether — though over the years I have had long periods of not drinking at all. The other concern is that I smoked fairly heavily for 32 years (a packet and a half a day for most of that time) but there’s nothing I can do about that now, except be glad I stopped in 1987.

Meanwhile I remind myself that in my mother’s family people tend to remain mentally sharp right up until their deaths, and are typically long-lived.

Note: There is also a condition called Vascular Dementia, but as it leads to Alzheimer’s, I’m not discussing it separately.