As this illness progresses, there are times when it feels like Roch engages less and less with everyday life at home. He is, quite naturally, obsessed with his condition and he admits as much. Why wouldn't he be? His thoughts revolve around what he can no longer do, what he may not be able to do tomorrow. He seldom dwells on the powers that remain to him.
He tells me that he feels helpless, that he's useless, that he sees me doing everything and he can't do anything to help me. This is not how I see him. I tell him that he is not completely helpless yet, that he is a very powerful person. His mood and attitude deeply affect everyone else in the house. He underestimates the power of his presence and opinions. And besides, there are ways in which he can help. He can listen to me when I come to him with a problem, he can enter into a meaningful conversation with me and we can discuss how to manage things together. No, he can't go up to the attic or move boxes, put out the garbage, trim the hedge - but he can use the phone, he can talk, he can use his I-pad and laptop - if he wants to. I try to involve him in things, not just to make him feel useful but because I NEED him to be involved. I am not ready to take over everything just yet. We were always a partnership. Actually, I don't think he would want me to take over. So, do household matters seem trivial to him now? Or is he too depressed to take an interest?
I think maybe now that we have Personal Assistants to help, his dependency is harder for him to bear. It's one thing to have your wife carry out intimate tasks to assist you with daily living, quite another for someone from outside to do this. He is still adjusting. One of the contracted tasks is to assist with showering and dressing, but he's not ready for that yet. So he either has no shower on the days when I'm on an early shift or he showers in the evening when I come home and can help. He did suggest that he get up at 6am with me on those days so that I could help him shower before I left for work but I had to be honest with him, it felt like too much for me. That's why we need Personal Assistants, so that on my working days, I don't have to do it. It was hard for me to say no, but I felt that in making the suggestion, he showed very little understanding of my needs. So, I asked myself, is it unreasonable for me to expect this from him?
Before publishing this post, I took the rather unconventional approach of emailing a small questionnaire to Roch. Why? Well, it just felt easier than asking him directly. He is always open to responding to questionnaires from outsiders, seeking to understand his condition and how he is feeling. I was confident that he would respond to mine. The results were interesting and led to a heartfelt discussion, although time will tell whether we reached a mutual understanding of each others' needs. His response to my Question 1 was particularly fascinating as his answer showed me that his disengagement may be caused by feelings of powerlessness, but I also felt that to a certain extent he had missed my point! We talked about that, too.
He told me that he feels like a 'Waste of Space' and I don't think any amount of reassurance from me will change that feeling. At the end of our discussion we talked about the possibility of counselling for Roch. He is considering this. He admits to being depressed. I'm not sure how I feel after this exercise - I think it was useful for both of us and it felt like something I had to do. I hope it makes a difference.
With Roch's permission, I record the questions, together with his answers, below:
"I am writing a blog post and wondered if you would mind completing the following
1) We have talked about how you are obsessed with your illness. We have agreed
that this is understandable. So - Do household matters seem trivial to you now?
⭐ No, Even the smallest task seems monumental now...
2) How do you feel when I ask you about household things like insurance/personal
assistants matters? Please tick the most appropriate answer.
a Irritated - why can't she deal with it by herself?
b Annoyed - I've got more important problems to worry about.
c It makes me sad, because I don't feel I can help.
d I feel too depressed to take an interest.
e All of the above.
⭐ The answer to this question varies depending on mood, time-of-day, the task
I'm currently obsessed with (most particularly my current toilet obsession), my
startle response (which appears to me to be getting worse ), my prevailing
feeling of helplessness/pending disaster and/or a combination of all of the
More specifically, probably answer (c).
3) Do you think you might be depressed in general?
⭐ Yes, however, I'd like to point out that I have only come to this realisation
4) Do you think that you are angry with life/fate/the universe?
5) Do you think it is unreasonable for me as your wife/carer to expect you to
understand my needs?
⭐ No, I'd hate to think that this was possibly the case.
6) How odd do you find this exercise?
a Very Odd b Odd c Not odd at all d Normal
⭐ Fascinating, but if pushed for a specific choice of the given alternatives;
(b)... Albeit very tentatively...."