wings and things

Taboo topics

I am always very careful not to write details of our story on this blog that might embarrass Anthony. The taboo topics are to do with matters of the groin area: sexuality, ablutions, incontinence, libido, that kind of thing. These topics are not taboo for Anthony and me of course and actually provide us with some rollicking conversations in a slapstick comedy sort of way and some of his male friends who visit love to tease him about his past exploits (not me, I can assure you ha!)

One of the things that most amazes me when I watch various television shows/series is that no matter how long a particular character is trapped, or imprisoned etc. he/she never seems to need to go to the toilet (I think Nicole Kidman was one of the first do so in her last movie with Tom Cruise – not sure).

Anthony is utterly unembarrassed by incontinence and made me laugh my head off the other day when he said, “I hate having a wet nappy!” when I tried and failed to get him to the toilet in time at the nursing home. Unabashed, he said, “Those kids will help me soon” (he calls all of the staff ‘kids’ for some reason.

But even writing the above paragraph makes me worry that (a) this would embarrass him; and (b) that relatives and friends who read this blog might think this is ‘too much information’. However, whenever I present my worries to Ants and/or read bits of the blog to him, about him, including the above, he reassures me with his half smile. He has a very healthy ego! Libido is of course another taboo topic but the hilarity with which Ants has approached this now diminished capacity (“This is a gold bar”) is, I think, an important part of a story of extraordinary resilience.

I remember thinking, years ago, that if this or that were to happen I would not be able to cope any longer. I was right; when this and that happened, the nursing home idea saved us – our marriage, friendship, love.

If I write the Anthony book, I want to be honest about these taboo topics; I want to demystify them, make them less scary, put it out there for those who are going through the same kind of thing.

Off to the toilet now!


Taboo topic: poo!

We all do it but, after the age of around 4 or 5, it becomes a bit taboo to talk about poo. It is an intrinsic part of everyday life but is clothed in secrecy. In nursing homes and hospitals, however, the activity of the bowels is all-important: “Have you used your bowels today, Mr Smith?”

Years ago, when I worked in a hostel for multihandicapped (I don’t know if that is the politically correct term any more; suffice it to say that all of the residents were people with both intellectual and physical disabilities), we had a chart in the shared bathroom in which we had to record daily poo production in cups. Don’t get me wrong – we didn’t use cups, but we had to look at what each person produced and imagine how many cups it might equal.

As a nurse and/or care-giver, you get so used to poo that cleaning it up becomes more of a tedious than a revolting job. At least now there are plastic gloves and pull-up adult nappies which makes things a lot easier on the carer and the sufferer.

I don’t want to personalize this into an Anthony-and-Julie situation here; I just want to speak generally in a way that kind of (hopefully) demystifies this particular type of incontinence and makes it easier to cope with.

The first time it happens it is, of course, humiliating and ghastly for the poo-victim and quite frightening for the carer. Above all, do NOT make the person feel worse than they already do. The next thing you need to do is to remain extremely calm and pragmatic. Just do what you have to do as quickly as possible and try to remember your 5-year-old poo jokes. The ability to hold your breath, and the invention of room deodorizer, are good additions to the situation.

My point: being able to use your bowels means you are still a living, breathing, eating, functioning person, so pooing is a very good thing. So rejoice in the poo! Don’t be afraid of it! It is normal!

It can also be a great conversation starter: “Remember the time when you ….?” Raucous laughter may sometimes accompany these conversations, which is a hell of a lot better than misery.

Just saying…. it might be you one day.



I thought it was time I owned up to the fact that I am definitely not the wonderful, caring wife all of the time. The reason I am admitting this is because hopefully other care-givers will forgive themselves for the things I have to forgive myself for.

Anthony’s visits home are becoming more difficult and, consequently, less frequent. For example much of today was spent in the world of ablutions. With Parkinson’s disease, everything slows down and continence is a problem. Luckily, Ants (who looked after his own mother when this happened) doesn’t get the least bit embarrassed any more by the ‘accidents’ and I try my best not to be impatient and/or revolted.

On our second slow trip to the bathroom, I growled at him, “This better be the last bloody time, Ants!” And, to my shame, I also said, very impatiently, “Just walk, Ants – it’s only two more steps to the loo – WALK!” But, as soon as I raised my voice, he whispered, “Sorry, Jules” and my heart broke and I became gentle again.

After the toilet adventures, we were all back in the kitchen while I prepared lunch – another ordeal because Anthony isn’t good with cutlery now and makes a terrible mess which distresses him. Also, he can’t swallow properly so drools a lot (we always have a ‘dribble rag’ nearby) – I escaped to my little office at the back of the house. I should have been in the kitchen with Ming and Ants but, even after just a couple of hours, I wanted to escape.

Ming wanted to escape too and it was almost as if he and I were doing shifts with Ants. While I dealt with the ablutions, Ming escaped to his shed and, while he and Ants ate lunch, I escaped.

I am not sure what I am escaping from but the diminished presence of Anthony seems to suck the energy out of me. We sit together and there is NO conversation most of the time. He is silent, blank-faced and so bent over that his face nearly touches the table.

One of his favourite shows was on TV (Doc Martin), but he can no longer focus or understand what is going on, so, at one point, I turned the volume down so we could talk but by 2.30pm he was beginning to visibly wilt. At that point, Ming came back from his shed again and I whispered, “Can you take him back now? I can’t stand another minute of this nothingness.”

So Ming has just taken a reluctant Ants back to the nursing home and I am wishing that I had hugged him more than three times. His Parkinson’s is beginning to win over the medications now so he is increasingly immobile – it will be a wheelchair soon. Then he will be bedridden. Then he will have to be tube-fed.

Yes, life is a good thing and today had its good moments as well, of course, but to die sooooo slowly from this ghastly disease is a form of torture – not just physical, but emotional.

I love Anthony so much but I couldn’t wait for him to be gone again and I will have to forgive myself for that. Again and again. Guilt.