In New York

In New York

Thursday, 27 September 2012

An unconventional approach.

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 short questionnaire?

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 above. 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 today.

4) Do you think that you are angry with life/fate/the universe?

⭐ Absolutely.

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...."


  1. Deirdre
    A lot of this is SO what I have been/am going through! Being a situational control freak I find my physical incapacity extremely difficult to deal with.
    Re the care (which I've been having for over a year) initially I was extremely stressed and negative about the loss of independence but have had to suck it up. However I have managed to maintain a degree of control by manipulating which carers visit. My current dilemma is about evening care which I accepted 3x a week to give my husband respite; I HATE it. Not least because they come at 8.30pm! This again stresses me and I often ask them not to come though I know it's unfair for Leonard.
    I can perfectly understand Roch's obsession with the toilet. The more difficult I found it to get on and off a toilet the less I drank and.........vicious circle ...the more obsessed I became. Eventually, a year ago (men are better off due to sheath catheters) I succumbed to a supra pubic catheter -definitely a double edged sword - it constantly blocks. I struggle still trying to get on and off the toilet for the 'required daily visit', with the aid of hubby even though it's probably verging on dangerous without a hoist. So, I'm still obsessed with the toilet.
    Yes I'm constantly depressed though I don't admit it to my children. I have counselling though I'm not sure what it achieves as I cry and moan, get offered CBT or antidepressants (I refuse both)and another visit.
    I am often too depressed to deal with everyday issues and would gladly fritter away my time. I am forced partly from necessity, partly duty and partly a desire to maintain SOME control, to confront and action.
    This disease is unlike anything any of us will EVER experience and as someone who finds it equally as difficult as Roch to deal with, can only commiserate with you both but have no constructive advice as to how to deal with it except to ask Roch to try not to be too resistant to the inevitable but to do as I do and try to manipulate for some control.
    If you need a chat via internet (not being presumptious or arrogant) get Roch to message me on Facebook. After all, I'm 7 years in and further disabled than Roch. xx

  2. A very powerful posting Deirdre. I'm sure there will be feedback and discussion at the next Carer Support meeting. Thanks to you and Roch for sharing this.

  3. Hi Deirdre

    Really interesting, not least because it's something very similar to what we are experiencing at the moment.

    Having just spent a lovely week down in the Forest of Dean (can thoroughly recommend the cottage we stayed in) we have now returned with very low spirits. It's what I call his 'woe is me' head - very down about everything and everyone (including me and the dogs) getting on his nerves! I sometimes want to scream at him that it's no barrel of laughs for me either!!

    We are having some building work done at home and I know it frustrates him greatly that he can't ask them the questions and has to relay the messages through me. He was in the building trade for over 30 years and gets annoyed that I don't understand what I need to ask the builder. He says he's not cross with me, just cross with the situation - but it doesn't feel like it!!

    We have a CHC assessment next week which we're not really looking forward to and will no doubt open up more raw emotions. We've been told by our lovely MND Co-ordinator not to put on the 'cheerful chappy' routine that we apparently have! If only they knew...

    Take care

    Helen x

  4. Hi Deirdre,
    I know Roch through PLM.
    Gosh, talking about hitting a nerve! It's like looking in a mirror. I can totally empathize with both sides, but being the one with ALS/MND I freely admit to being self-pitying at times. I've been asked if I feel acceptance of what's happening, but I find it impossible to feel that when everyday brings a new challenge and changes the status quo.
    It certainly requires developing a new level of patience and understanding on both sides, but I'm no angel. I am consumed with what this disease is doing to me and my family and friends, and with my ever dwindling capability it becomes a double edged sword as it gives me more time to be consumed by it.
    My best to all of you.
    Tishbet (Elizabeth)