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!
jmgoyder 
I never noticed that about TV shows. I live that Ants still holds humor, he is amazing
He certainly is!
Understand this entirely.
Awkward!
Since ‘these topics’ are in your blog… do you keep a journal of them just in case you can’t remember and want to at some point.. when you do the book…. Diane
Imprinted in my psyche!
I remember having those feelings when I wrote about my mother. There is a lot that happens related to incontinence and it was awful when I took my mom into a restaurant where she had an “accidental bowel movement.” I prefer not to relive those times, but it is part of the harsh reality of dealing with a loved one in decline. I know you’re waiting for a pun, so here it is: Your writing is always so fresh and honest – don’t put a “lid” on it.
I think tomorrow I will get permission from the horse’s mouth to un-taboo some of our experiences (nothing too raunchy though!)
Different people view these things differently. At least Ant is not too worried about it.
Men (in general) seem to be less embarrassed about these things.
I was out delivering election leaflets for the Scottish National Party recently when I had to have a comfort break. (The General Election is in a few month’s time so I need to do my bit!)
Luckily there was a wooded area so I went there for my comfort break. I was on my bike and got spotted by a colleague at work who recognised my orange Brompton as I exited the bushes.
She was telling everyone in the office so I told them the truth and we had a laugh about it.
You never know when you will need a comfort break and must use the facilities you have available.
Oh this is so hilarious. I have never heard the expression ‘comfort break’!
i think that your honesty and humor will serve to help others who suffer a nd worry quietly about those very human and very real parts of life. all good, in my opinion )
It is a bit tricky because I would never want to embarrass Ants but the fact that he is so unembarrassed is one of his amazing qualities.
You have to write about what is important to you.
I think that some of our turning points were to do with taboo-topic situations so I will need to be careful about how I write these situations I guess.
I cannot picture you writing a book that did not include all the ins and outs of Parkies…. and boy I think that is what is needed… no bullsh…t no hiding facts, true to life problems is what one must write about… when my Dad had his stroke and lay in bed waiting for his death, nappies was the order of the day… would I ever try to hide that fact ? definitely not, it is a reality of life…
Thanks for that encouragement, Bulldog. The nappies are an absolute godsend!
I think janeslog is right.
Different people DO view things differently. I know my 88 yr Mother, (who passed away 3 years ago), was immensely embarrassed about her incontinence and for many of the last few years of her life refused to go out to the homes of family and friends (because of it).
I certainly do understand how the elderly might be uncomfortable about these things, so try to be respectful of their feelings.
I really do think that when the book’s synopsis is being laid out, you should seriously consider including these topics, as it would help others ‘come to grips’ with the harsh realities of PD and Dementia. Maybe it might also enable them to be more frank and open (when they really need to be) with family & friends.
That’s the whole trouble with illness and body parts, no body wants to ‘talk’ about it. Remember when breasts, vaginas, penises & Co were taboo.
I suppose ‘boobs’ & ‘willies’ do sound much funnier than the real names though……even now 😀
It’s strange that older women, many of whom have had babies, seem to be (in general) more ashamed of incontinence than men. LOVE your hilarious comment (the last bit)!
To demystification I raise my glass
Fantastic encouragement – thanks! Now where is my wine?
I’ve never seen you write anything disrespectful of Anthony. I doubt you are capable of it. No, I don’t doubt. I know you aren’t. You and Anthony aren’t responsible for what’s happening. And your attitudes and processes of dealing with it all will be such a wealth of information to others.
I can’t thank you enough for this encouragement. I nearly deleted the post then realised I needed to know what people felt about taboo topics like this.
I work in a field where I am amazed at what people do not know about their parents, or grand parents, or spouse, or older loved ones/friends/relatives health decline. People need to know. And I am still JUST as amazed and IMPRESSED by those who comfortably speak about the changes and the things people need to know. When just one person speaks boldly and comfortably and knowledgeably – someone will learn. And be very grateful for it.
In general it seems society is much more open about these topics and more accepting of disability overall– write the book and hold nothing back!
Okay – thank you!
The only time you ever see anyone need the toilet is when they re being held hostage on TV and then it is usually to give them chance to escape lol
I completely forgot about that scenario!
When it comes to writing, and in that writing others are helped, the reality (the authenticity) of a situation speaks volumes. Some may feel it’s TMI and certainly not everything goes over well in everyone’s sensibilities but for my penny the best writing is honest, and inclusive. It makes it easier for the rest of us out here to smile, laugh, and talk about the same. Everything you’ve written, everything I’ve read from you, is spot on. I admire your talent, sense of humor, expressions of emotions, and letting us in to a very sensitive unfolding with your beloved. Love, Paulette
Ah Paulette this makes me feel so much better about writing the bare bones of things. Thank you so much xx
Yes we all have to be careful about posting something that will embarrass someone we love but the older I get the less I care what others think and I don’t get embarrassed as much as I use to. Considering all the nursing home staff are a lot younger then Anthony it is not surprising that he calls them all kids
Wise words Jo-Anne – thanks so much for your support and humour!
I’d take my hat of (if I had one) for you, Julie. A book that tells an honest story about how things really work, and don’t, will be much more valuable than one in which important, natural issues are labelled tabu…just like in the TV or in much of life in general.
When I wrote my PhD thesis about Alzheimer’s disease, I devoted a whole chapter to this taboo topic (the abject status of bodily fluids) and how humans are disgusted by their own secretions. I better go back and see what I wrote!
Anthony’s great attitude is such an inspiration – I think it will be inspirational for people to hear about those taboo topics as well!
Anthony is the most resilient person I have ever known.
You write with love and gentle compassion! You are amazing!! Yours is the greatest love story ever.
I actually think this might be many people’s stories. The love expressed by some of the women in the dementia house is very intense.
Jules, you write with gente and loving compassion. You honour Ants’ life with your writing! Yours is the ultimate love story!
Your comment tripled for some reason so here I just want to say how much I appreciate your presence in my life, Tersia, and THANK YOU for your wonderfulness!
Jules, you write with gentle compassion and love. Yours is the ultimate lovestory.
Thanks so much Tersia xxx
How wonderful that you both laugh and enjoy each other through times that could spin others into frustration. What a gift.
Thanks so much, Barb. I am so lucky that Ants has retained a sense of humour because that beats the hell out of the tragedy of our situation and wake me up every single day!
Thank you for posting and for your honesty. It really got me thinking of someone very close to me that is going through the same situation. God Bless!
Thank YOU!
I say let Anthony continue being your guide. I know that by putting the “taboo” topics in your book you will be giving a lifeline to those who are entering the world of Parkinson’s, Dementia and Alzheimer’s for the first time with their loved one. I have watched Soap Opera’s for 40 years and I have never seen anyone go to the bathroom, have sex in the shower/bath tub yes but go to the bathroom, no. They don’t do housekeeping either. LOL
Thanks for the laugh!
😀
This will be a book not only about a disease but also about life, love humour and rising above the difficulties in life. And you know how crazy our humour can get in nursing homes-keeps us sane.Always needed.
You are so right about the humour!
Spectacular post! Beautiful attitude. I think including those personal details is what would make other people connect. Those daily things, approached with honesty and humor would be a must. I think it would be reassuring to others going through the same thing.
people who are actually going through this and are looking for answers will know that your book is not complete as it will not answer questions they have.
i am with you on the movie thing where people never have to go to the bathroom! i thought it was me and my mind went to places it had no business going to:) i love that we have our humor in common!