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?    
Yes/No
⭐ 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.

Finally,

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...."

Oddfellows

The MND Carers Support Group meets on the third Monday of every month, in Richmond Oddfellows Hall. I've talked about it before in the blog, but I think it's worth mentioning again.  Last Monday I was late and was the last to arrive. No sooner had I taken a seat, than Mick had risen from his own to make me a cup of tea. It's like that, very welcoming and distinctly non-threatening. It's still in its infancy - there is no fully formed group, there are new faces there every time, and some familiar ones too, for me. One participant told me she felt like she knew me and my family well - because she had been reading the blog!
Each meeting is facilitated by two volunteers (one of whom is usually Mick Stone, who set up the group). Janis Parks was there on Monday. She is the Chair of the West London & Middlesex Branch of the MNDA. Having them there makes it feel safe.  I was nervous at the beginning because at my very first Open Branch meeting I had felt overwhelmed by the emotional needs of other carers. This was something I fed back at the time and spoke to Mick about, too when he asked me whether I thought a Carer's Group was a good idea.  He assured me that the meetings would be managed and that they would be facilitated by two people. It works for me.
Monday's meeting was held to the background noise of a tap dancing class being held upstairs. It was a little distracting at first, but kind of cheering at the same time. I think we managed to block out the noise eventually. The ballet class afterwards felt less intrusive - a kind of dusty, muffled shuffling. There was something life affirming about holding our support meeting to the sound of people learning to dance. Life's rich tapestry...
Certainly life's rich tapestry was reflected in the experiences of the Carers present. We all had an opportunity to talk about our own situations and how we were feeling. As always, it feels much easier to talk about the people we care for and to ask for suggestions/advice on practical matters from our fellow carers - rather than examine our own feelings and how things are for us as individuals. Maybe it's because we're not used to each other yet? Maybe it feels like that might open up a bit of a Pandora's box and we're not ready for it? I don't know the answer. Time may tell. There was a general acknowledgement of a shared feeling of frustration -of  the difficulties faced when dealing with professionals who don't understand, who dismiss the Carer's input - hospital staff and occupational health therapists alike. An affirmation from people who do know what it's like - fellow carers - that we are all doing the best that we can. Encouragement to continue.

I found it helpful to hear that other Carers sometimes feel irritated by the unceasing demands made on their time - irritated and resentful, even. I share those feelings sometimes. We all agree that breaks are important and that when respite is offered, we should take it. It's hard to be patient all the time.

When Roch was first diagnosed, a close friend confided that what she would find difficult would be not feeling able to shout at her husband when they had a row! I told the group on Monday that we still do shout at each other - like any healthy married couple. I told them the tale of a recent row - during which Roch said to me "Try to think of me sometimes." Or words to that effect. This remark elicited a most satisfying response from my fellow carers, who howled with appreciative laughter, knowing that it would have been impossible for any of us not to respond to such a remark. As I said to them, "Every waking moment..." I didn't even have to finish the sentence. After the row, I went for a walk - Tom was at home with Roch, so I knew he wasn't alone. I was also acutely aware that I was doing something he was unable to do, and I couldn't help feeling bad about that.  I could just up and leave - walk briskly down the road to get some space. Well, as Janis remarked, one of us had to do it.

It's good to know you can sit with people who understand, chat over tea and biscuits and have a break for an hour or two. I left feeling that I had spent an evening with friends. That's a good feeling.

Home sweet home

Well, we have been home for a full week now and whatever holiday glow attended our return has definitely dissipated at this point. Just one day home and he had a fall. It was Sunday and I had gone out to Tesco. He slipped in the wet room. He banged his head, arm and behind - but nothing broken, no major damage. By all accounts, Tom was brilliant but it must have been a shock for everyone (especially Roch).   Roch can just about get himself up from the shower seat (which Tony raised for us before we went to Ireland) but last Sunday his feet just slid out from under him on the wet floor and once down, he cannot get up.  As I left for Tesco, I had a momentary doubt about leaving him. He was just finishing his shower and Tom was on hand to assist. It probably would have happened if I'd been there, but should I have listened to that inner voice of doubt? - After all, he hadn't used our wet room for three weeks. Was I in too much of a hurry to get out and back with the food for dinner? On the other hand, what kind of faith would it have shown in Tom, to insist on staying? Neither of us could have prevented it from happening. Tom and Kate did all the right things and with the help of Kate's boyfriend, they managed to help Roch up, so they didn't need to call an ambulance. We have since tried a non-slip bathmat but it doesn't work really, not on that floor. We've been using a towel/mat which is better and Roch ordered some crocs to wear in there in future.

He can 'just about' do a number of things and I think we're both wondering how long this stage will continue, which may be a gloomy thought, but natural I think. It's great that he can still do things for himself, but it's hard to feel grateful sometimes for these feeble abilities, although no doubt when they disappear I will look back with nostalgia and longing to the days when he could 'just about' do something.

He has to adjust to retirement now, too. We both do. He is officially retired from work, although very unhappy about how this was managed by his employers. I don't think they've heard the last of it. Dr. Cable has written to the Chief Executive of Hammersmith & Fulham Council once more, on Roch's behalf.

We are entering another phase - a real milestone - where we will employ other people as personal assistants, to be at home with Roch and help him out whilst I am at work. Two of our friends will take on this role, which we hope will begin on 10th September. This is when my new shift pattern will start. We have been advised in this by Paula, of RUILS http://www.ruils.co.uk/ which provides an invaluable advice and support service, making the whole employment process much easier for us to embark upon. There's a lot to think about.

Over the next week we will draft a job description to reflect the support plan already agreed, a contract for each, organise insurance and activate the direct payments scheme. It feels a bit daunting, but once we get down to business, it will feel good to have everything organised. I hope it will set my mind at rest when I'm at work.  I hope having friends as personal assistants will make the adjustment easier for Roch.