Thanks so much for the wonderful feedback on yesterday’s draft article. I think it would be really interesting to incorporate those comments into the final draft of the article. I’d also like to add some positive aspects to the notion of dementia replay but I want to do a bit of research first. The journal I want to submit to is called Alzheimer’s Care Today.
Here is another (very rough) draft article for those who are interested. Again, any feedback appreciated.
Dementia and Invisibility
Almost every day I visit my husband, Anthony, who is in a nursing home because he has advanced Parkinson’s disease, prostate cancer and now the beginnings of dementia. Over the 18 months since he was admitted, the PD has affected his ability to speak due to his throat muscles not working properly any more, a diminished ability to concentrate and, with the associated dementia (PDD), various degrees of confusion. He has been transformed from a larger-than-life, loud, laughing, boisterous person to a mostly silent person with a very soft voice and a blank, expressionless, seemingly sullen face. And, over the last few years, he has shrunk in size by nearly 10 kilos. Once upon a time he had the most wonderful presence.
Now, he is becoming invisible.
Not to me, but to others. Let me explain. When I visit I am greeted with great friendliness by all the staff, banter is exchanged and the quietness of Anthony’s situation is enlivened. Sometimes there is a rush of conversation which is difficult for Anthony to follow because with PD comes an inability to concentrate on more than one thing at a time. For example, if he is watching the news, he is too distracted to concentrate on my scintillating anecdotes (ha!) so I turn the volume down. If I visit at the same time as someone else, the conversation often bounces around him because he can’t keep up. If he begins to say something and has difficulty with the words (this is happening a lot more often now), there is a tendency to talk over him or else finish his sentences for him instead of waiting for him to finish what he has to say. I do this myself and have to make myself shut up sometimes.
Lately I have noticed that staff will often come into his room and start talking to me, but not to him, or rush past us on their way on or off duty and yell out ‘seeya Jules!’ or ‘hiya Jules!’ but not say this to Anthony. It’s as if my visibility makes him even more invisible. Even if he is included in these salutations, by the time he responds with his own ‘hi’ or ‘bye’ the person has long gone. And he is almost never able to answer ‘how are you, Anthony?’ quickly enough, so he seems to have stopped bothering.
Don’t get me wrong; the staff are wonderful and mostly rushed off their feet. This means that conversation with Anthony (whether I am there or not) is often limited to ‘lunch time, Anthony, up we get’, ‘do you need to go to the toilet?’ ‘bedtime, here’s the bell if you need us’, ‘here’s your 4 o’clock pill – have you swallowed it?’ and so on. When I am there I try to enable conversations between Anthony and the staff in all sorts of ways and this has been a lot of fun and very effective. I guess my intention here is to remind them that he is not just a person with a disease, but a person with a past, that he is a person.
Here are two of the things I have tried:
1. Pictures: I have decorated his room with pictures and photos, which I change from time to time. At the moment there is the enlarged photo of a young, robust, smiling Anthony, a photo of this farm from the late 1950s, an oil painting of cattle I commissioned for him as a Christmas present years ago, a series of photos of Ming as a baby (in the one frame), a personalized calendar my mother made with a different photo of us for each month, a photo of Anthony and me in the early days of our marriage, and a big, window-pane mirror that my brother made for him. My hope is that these visuals will not only trigger great memories for Anthony, but invite the curiosity of staff. The photo of him as a younger man has been a great success in both ways. ‘Wow, what a gorgeous hunk you are here, Anthony!’ ‘Is this your farm?’ ‘Who’s the funny-looking baby?’
2. Food: I take in home-made sticky date (now that I have become good at it), pistachios, exotic chocolates, fancy cheese and other treats and, even though these are primarily for Anthony, I share with the staff. I never realized before what a great conversation-starter food can be! ‘I’m just coming back for another chocolate! Is that okay, Anthony?’ Additionally, the chef at the nursing home makes the most divine pavlova so the other day she snuck me an extra piece for Anthony and voila, he is now recognized as the pavlova-loving patient, not just the patient.
Now, he is becoming visible again.
Of course there are many, many more ways of de-cloaking your invisible loved one if he or she is in a nursing home and these are just a couple of ideas. It is an exciting journey of discovery and beats the hell out of despair!
jmgoyder 
great respect for what you’re doing Jules 🙂
Thanks! A lot of redrafting necessary.
What a lovely photo of the two of you Jules. Thanks for sharing and I truly admire what you are doing. I don’t think I would have the strength. Thinking of you. 😀 *hugs*
I appreciate it Sonel.
This is great dear Julie, you are doing great. This is wonderful photograph. Thank you, love, nia
I wish I could meet you nia!
Loved this article, Julie.
The cloak of invisibility that ICI (invisible chronic illness) sufferers have, is a very important issue in the community in general. I would like to see more articles in the media on it.
I also suffer from some cognitive dysfunction when stressed or in a group situation and am unable to concentrate on several conversations, let alone hear the person talking directly to me and for this very reason do not socialise any more and avoid noisy crowds or restaurants entirely.
(I remember the father of the children I was caring for, introducing his children to a work colleague and totally ignoring me in the process of introduction as though I was invisible because I worked as the children’s live-in nanny. I was standing right next to the children too. I have never ever forgotten this rudeness on that day).
There is so much insensitivity and ignorance out there Victoria when it comes to illnesses that are not obvious – I feel for you so much because you probably look well and nobody sees the pain you suffer. Love Julie
The insensitivity of my boss & work colleagues was the worst, Julie. Every day of the 16 years I worked at that last workplace was a case of bullying, harassment, humiliation & embarrassment (when I broke down when the pain got too much).
I really feel for so many silent sufferers out there.
I really feel for people like Anthony too. People who are kind, loving people who probably never hurt anyone in their lives and they have the misfortune to get these horrible health conditions like PD & Dementia.
….and I also feel for the carers & people who love them unconditionally. You deserve a medal.
x Vicki.
The picture of you two is heartwarming (you have a beautiful smile that shines always despite what you are feeling). This phenomena is so real yet so unacceptable. One shouldn’t have to bring ‘visibility’ with you of course, yet I remember often bringing something for the aides, stopping to chat with them before going to see my dad – anything to remind them that we are all ‘present’ in this life – whether fully able or compromised. Hugs Jules, many many hugs.
One of the things I find hardest is when I go to help Anthony get up from his chair etc. and somebody says, ‘he can do it!’
Infuriating is an understatement!
I read an article years ago about people in wheelchairs being ‘invisible’. People not making eye contact, people with those in wheel chairs being addressed but not the person in the wheelchair. This article still resides in my head whenever I see someone in a wheelchair, I make sure to see them and address them as I would any other. I can see this article doing the same thing. After being read, living in people’s heads when they go to nursing facilities or visit family/friends with beginning or advanced dementia. Great article.
This is soooo true!
It is perfect! I remember visiting my husband’s aunt in a “home” and as a project some high school kids interviewed the people who lived there, and made a poster with a pic of the person when they were younger and a description of their life and accomplishments and family–I found this so absolutely amazing and it tore away the veil that so many of these people are under–they were and are real people and it was recognized. Your article underlines this and I love it!
Your love, caring and compassion is inspirational. I read this and wondered if anyone loves me enough to do for me what you do for Anthony? Bless you precious Julie.
Jules I do remember once you mentioning there were 4 or 5 stages of PD.. or am I thinking of someone else… I had never heard that before and did some research after being told about it… I found that extremely interesting and maybe you should think of including it… Just a thought as all I’ve talked to here never knew that… I’m sure it was you that told me…
Julie, great article! Every word is well-articulated and carries truth. Yes, this is exactly what happens to nursing home patients as played out in my dad’s situation. Like you, my mom made sure the staff “knew” my dad as a person by displaying the same types of items. Unfortunately for many other residents, families don’t care enough to offer the same care to their loved ones, and the majority are forgotten, depressed, and die lonely. You are a saint, and Anthony is very fortunate to have loved you. Your undying love for him is beautiful.
I think that you are bringing up issues that have long been invincible as well. Both of your ideas are inspired towards decloaking the patient and reminding the world that the patient is a person with a past, present and a future. Moreover within the patient resides a rich and varied emotional history and should not be forgotten. You know who I feel about food and that it is the gateway to conversation, sharing and harmony. I think that you have written another fine article and it will join the other one to be published. 🙂
Julie, what a wonderful post. I so much love hearing you talk of your love for Ants. How you cherish him, and what this all means to you. Please take care, Bill
Good advice, Julie, eye contact and getting close is good too, and a gentle touch not associated with changing or toileting.(if they are not violent). I like the idea of the pictures so they can spark conversation with other visitors, staff and family..also not talking about the person as if they aren’t there. i am always amazed when a baby is brought in and a person who normally doesn’t respond reaches out to touch-the same with pets that are brought in for therapy visits.Makes a difference to the people and the mood of the home.
Love how this is written and that you’ve suggested things to decrease invisibility. I love the photo.
I had an idea that I’ll throw out for what it’s worth and if you want to try it then add it, up to you but really what you wrote needs nothing else. How about a little note from something Anthony told you about a staff member to that staff member mentioning an act of kindness or some simple thing he appreciated. You could both sign it. And, if Anthony isn’t able to sign it perhaps just from you relaying what he said, with his permission of course (even if not remembered). This could possibly open up personal communication channels between the staff and Anthony. All this providing it wouldn’t embarrass Anthony with returned appreciation from the staff.
Sure hope I’m not overstepping with this suggestion.
Love,
Paulette
I think the line about reminding others that he was and is a person not just a disease is powerful. This can be applied in so many ways–employee, employer; fat people; even kids. When we fixate on tasks and forget people we demean the person and also ourselves. Lord, help us.
I knew your blog was going to be important, Julie, and now look! You are focused and writing again! This sharing and clearing the air is helping you to cope, and your articles will no doubt give others a viable means of coping with their own issues along these lines.
xo
😀
You are wonderful and this article is fantastic.
Keep up the great work.
I know what you mean, we have lots of photos around nan’s room along with drawings that Temika have done for great nan. We want the room to show nan as a person not just a lump in the bed. The staff do talk to her even though she rarely answers, we have turned up when they are bathing her and can hear them talking to her.
at last a beautiful voice to an ugly problem:)
Sorry–no constructive criticism, because I like it, as it is. One of my friends has started doing hair for people in a nursing home, and one of the things that really bothers her is that young caregivers often forget that the people they’re caring for were once active, vibrant people, and they’re still individuals, not just patients. Your article is right on!
This is an important issue you raise here – that of the invisibility of these sufferers.
I think the article will raise its awareness.
Great article! You have a lot of valuable wisdom to share. Alzheimer’s Care Today would be wise to snap it up. The points you are making and the approach you are taking is spot on. But not just to Alzheimer/dementia patients. We would all do better to slow down, listen and treat each other as complex individuals and not just the one dimensional role or most identifiable or relevant characteristic we see at any given moment.
You’ve got some wonderful advice and good ideas here, Jules! I think this is a great article as it stands today.
Beautiful story — have you submitted it already?
I love your blog and your attitude (just found you by linking to you from “almost spring.” Australia is new territory for me, and I’m just beginning to connect with people in your corner of the world.)
I like to do a profile once a month or so, on inspiring people who live wisely and well and follow their dreams, despite adversity. Would you be open to my writing about you? (I would run the article past you for your approval before I publish it, to make sure you’re comfortable. And if you’re interested, I can send you links to other articles I’ve done so you can see my style).