A coincidence or what? He hasn't fallen since March, this Thursday I go on a workshop for carers because of that fall, and yesterday he falls again. But I wasn't there! I had left early for work and it happened as he was getting into the car, to drive to work himself. He says that he put his left foot into the car and the right knee folded so that he crumpled to the ground. Of course he couldn't get up by himself. So there he was, sitting beside the car, roadside. Our street is very quiet, thank goodness. A fellow motorist stopped and with Roch holding onto the car door frame and the passing samaritan lifting him up, he managed to stand. Then a neighbour came out and with the rollator, helped him back into the house. He didn't go into work. Spent the morning processing what had happened. It shook him. His right knee is his weak knee. He really needs a knee replacement operation but we made a decision not to get that done, as the recovery time might have meant he literally wouldn't walk again so we took a chance. Maybe that knee is going now.
I didn't hear about it until I called at lunchtime, really to check with Tom as he had had a physics exam that morning. I was taken aback when Roch answered the phone as I wasn't expecting him to be home.
It's not as if it's a surprise. It's a risk he's taking, an informed choice. He is going to fall. If it's not the bad knee, it's the MND. He's been lucky so far, no injuries.
It was a bad day for him. I think it led to much reflection on what is ahead for him. Restricted freedom, obviously. More dependency. Trapped.
But here's the thing -today he and Tom went round to the corner shop together. First time Roch's made that trip in the wheelchair. We've worked out that it's about six months since he's been round to the corner shop. Such a simple thing - how many times a week do you go round to your corner shop? I came home from an early shift at 4.15 today and was so shattered I made straight for my bed! Didn't intend to sleep for long - just a nap. Slept solid for two hours. In the meantime a plan was made to procure some beer. He didn't want to disturb me, and Tom can't buy it himself. But a man will do anything to get his beer. Even get into a wheelchair. So out came the wheelchair and off they went! Tom is an excellent driver and had an added incentive as permission was given for him to go off to a party with two cans.
Of course it's not the same as strolling round the corner yourself for a few cans but for Roch it was a massive thing. Another challenge met and plenty of cold beer at the end of it.
Saturday 28 May 2011
Thursday 26 May 2011
It's official! I'm a Carer.
So today I attended a workshop run by the Richmond Carer's Association. It was about back care and moving and handling people. I've been wanting to attend something like this since Roch fell the last time - some months ago now. It was useful and informative and also interesting in unexpected ways. Since coming home I have practised one technique on my patient (not absolutely necessary yet) - a safe way of helping him to stand from a sitting position. A dismal failure. He's better off struggling up himself! I'll get back to you when I've worked out what's going wrong. Hope I do better with the rest of it - it isn't exactly inspiring the patient's confidence!
We were an interesting group, and one of the most useful things for me was meeting the other attendees (all women) who are also carers. I was the only person there looking after someone with motor neurone disease.
There was a woman who cares for an adult daughter with cerebral palsy. There was so much to cover that we didn't get a break but she remarked that it was all a break for her. Just being there.
Another participant had to leave early to go back to her husband in hospital. She was a very bright, chatty person who broke down when she was introducing herself at the beginning of the day as she told us she could no longer hug her husband because he was in so much pain. He has bone cancer and is on 'end of life' medication. I hope she felt the sympathy and support that was present for her. When she left our warmest wishes and cries of 'Good luck' followed her out of the room.
A third woman cares for her older partner, whose condition was one that was new to me and so I cannot record it here, but he, like Roch, is beginning to need assistance with standing and falls at least once a week. There have been ambulances and emergency rooms involved, she told us.
We were joined by a Staff Nurse who works at a local Daily Respite Centre for older people. Their youngest client is 64 and their eldest is 102. One volunteer is 92 and she helps clients to the bathroom and assists in other ways.
We were all very focused and anxious to learn and there was a real atmosphere of mutual support.
I just thought - aren't we all great? What a wonderful bunch of people. And many thanks to Richmond Carers. I'm looking forward to the next Workshop and I know I'll be going back for support. I hope I meet some of those women again.
We were an interesting group, and one of the most useful things for me was meeting the other attendees (all women) who are also carers. I was the only person there looking after someone with motor neurone disease.
There was a woman who cares for an adult daughter with cerebral palsy. There was so much to cover that we didn't get a break but she remarked that it was all a break for her. Just being there.
Another participant had to leave early to go back to her husband in hospital. She was a very bright, chatty person who broke down when she was introducing herself at the beginning of the day as she told us she could no longer hug her husband because he was in so much pain. He has bone cancer and is on 'end of life' medication. I hope she felt the sympathy and support that was present for her. When she left our warmest wishes and cries of 'Good luck' followed her out of the room.
A third woman cares for her older partner, whose condition was one that was new to me and so I cannot record it here, but he, like Roch, is beginning to need assistance with standing and falls at least once a week. There have been ambulances and emergency rooms involved, she told us.
We were joined by a Staff Nurse who works at a local Daily Respite Centre for older people. Their youngest client is 64 and their eldest is 102. One volunteer is 92 and she helps clients to the bathroom and assists in other ways.
We were all very focused and anxious to learn and there was a real atmosphere of mutual support.
I just thought - aren't we all great? What a wonderful bunch of people. And many thanks to Richmond Carers. I'm looking forward to the next Workshop and I know I'll be going back for support. I hope I meet some of those women again.
Sunday 22 May 2011
"Do not let your hearts be troubled."
At last, my laptop is up and running again after problems over the last few weeks so I'm back again and ready to talk about where I think we are now.
Roch has been quiet and introspective a lot lately. There's a reluctance to go out and we have talked about it. He says he's going through another transition. He is afraid to be out on his own, afraid of the unexpected, of unwanted attention. We had planned to go to our local Aids-Mobility shop to look at portable ramps and toilet seat raisers (for our trip home in July). Not, I'll be the first to admit, a particularly pleasing prospect, but necessary. Twice we have postponed, because he just hasn't been up to it. Well, I don't blame him and I know when he's ready, we'll go. It's another step along the way to dependency. On the other hand, if we don't get the appropriate equipment, it would considerably lessen his freedom to visit family and friends this summer. So...
We haven't been out together much lately, although we did go out for a meal with two of our neighbours a week or so ago. Michelle has featured in my blog before - she was the first neighbour I told about Roch's MND. You can rely on Michelle. She is a woman of action and I know I can ask for her help, any time. Lots of people say that to you, but with Michelle, I know it's true. A friend of her husband Brendan's had MND and so they know some of what's in store. They are quietly (well, sometimes not so quietly!) supportive and we can have a laugh with them, too.
Other things are changing. He is still walking, just, but the strength in his hands and arms continues to decrease. Last week we took the wheelchair and ventured to Kew Retail, where we shopped in Boots for an electric toothbrush. He has been concerned of late that he is no longer able to floss and we were pleased with our purchases. I found a long-handled flosser - floss on a stick basically, so for the moment, that problem is solved - and also a brush head for the electric toothbrush which says it's designed to deep clean between the teeth. We shall see.
That day I left him in the cafe in Marks & Spencers (gettting used to being specific about my order - "Medium latte, but can you put it in one of those cups with the large handle, and please don't fill it to the top?")
Then I ventured to the food hall, which was really busy. I met Gerry McDonagh's widow Pat and her daughter Clodagh there. It was lovely to see them again. Clodagh's first baby is due in a week. They have good days and bad days. The hospital investigation is ongoing. We all know that Gerry did not receive the right care when he was admitted the weeekend before he died. Even the Consultant has admitted as much. One staff member is under disciplinary. Pat told me that although they were married for over 3o years and she first met Gerry when she was 14 years old, the memory that stays with her now is of his suffering before he died and how he was in the final days of his illness. These are heartbreaking, sobering thoughts. Roch's story has been different up to now, the path his illness is following is different to Gerry's path. We can only hope that the end will be different too. Pat and Clodagh are doing their best to make sure it will be different. So thank you to both of you.
Roch is still washing and dressing by himself. Slower and slower but determined not to accept help. I admire him for this, but it's hard to see him struggle sometimes. After his shower, he sits on the bed awhile, gathering strength before donning the first garment. He rests between tasks.
The other night he woke himself by biting his tongue. There was some anxiety that this might be a precursor to some lack of muscle control, some spasm in his mouth, but perhaps not. It hasn't happened since.
It's hard for him to be still - Roch the fidgeter, the mover and shaker! But he is learning to be still, he says. I hope it helps that the house downstairs is such a lovely place to be and the garden is so lovely at this time of year. He sits outside with a drink or coffee and the customary cigar, i-phone in hand. Or you might find him in his comfy leather chair in font of the HD tv, with 'Judge Judy' for company.
So after all that, how am I? Well, I can tell you how I am today. Today I managed to go to Mass. (All you atheists out there - look away now!)
I try to go every week, but I don't always get there. Afterwards I felt lighter, still sad, but not hopelessly sad. At the beginning of the Mass, our Parish Priest, Fr. Willie spotted me and as he walked by, on his way to the Altar, he smiled and nodded. He knows us. He knows about Roch. The first prayer out of his mouth was for families in the Parish who have to cope with the illness of a family member. I'm sure he was thinking not only of us, but I know we were in his mind, when he asked for prayers from the community. That was a good start for me, but it got better. The response to the Psalm today was 'May your love be upon us Oh Lord, as we place all our hope in you.' The choir sang the response and something about it made my eyes fill with tears. I let my sadness surface - I didn't try to push it down as I would usually - so when the words of the Gospel were read, I felt their comfort too. "Do not let your hearts be troubled. Trust in God still and trust in Me."
Roch has been quiet and introspective a lot lately. There's a reluctance to go out and we have talked about it. He says he's going through another transition. He is afraid to be out on his own, afraid of the unexpected, of unwanted attention. We had planned to go to our local Aids-Mobility shop to look at portable ramps and toilet seat raisers (for our trip home in July). Not, I'll be the first to admit, a particularly pleasing prospect, but necessary. Twice we have postponed, because he just hasn't been up to it. Well, I don't blame him and I know when he's ready, we'll go. It's another step along the way to dependency. On the other hand, if we don't get the appropriate equipment, it would considerably lessen his freedom to visit family and friends this summer. So...
We haven't been out together much lately, although we did go out for a meal with two of our neighbours a week or so ago. Michelle has featured in my blog before - she was the first neighbour I told about Roch's MND. You can rely on Michelle. She is a woman of action and I know I can ask for her help, any time. Lots of people say that to you, but with Michelle, I know it's true. A friend of her husband Brendan's had MND and so they know some of what's in store. They are quietly (well, sometimes not so quietly!) supportive and we can have a laugh with them, too.
Other things are changing. He is still walking, just, but the strength in his hands and arms continues to decrease. Last week we took the wheelchair and ventured to Kew Retail, where we shopped in Boots for an electric toothbrush. He has been concerned of late that he is no longer able to floss and we were pleased with our purchases. I found a long-handled flosser - floss on a stick basically, so for the moment, that problem is solved - and also a brush head for the electric toothbrush which says it's designed to deep clean between the teeth. We shall see.
That day I left him in the cafe in Marks & Spencers (gettting used to being specific about my order - "Medium latte, but can you put it in one of those cups with the large handle, and please don't fill it to the top?")
Then I ventured to the food hall, which was really busy. I met Gerry McDonagh's widow Pat and her daughter Clodagh there. It was lovely to see them again. Clodagh's first baby is due in a week. They have good days and bad days. The hospital investigation is ongoing. We all know that Gerry did not receive the right care when he was admitted the weeekend before he died. Even the Consultant has admitted as much. One staff member is under disciplinary. Pat told me that although they were married for over 3o years and she first met Gerry when she was 14 years old, the memory that stays with her now is of his suffering before he died and how he was in the final days of his illness. These are heartbreaking, sobering thoughts. Roch's story has been different up to now, the path his illness is following is different to Gerry's path. We can only hope that the end will be different too. Pat and Clodagh are doing their best to make sure it will be different. So thank you to both of you.
Roch is still washing and dressing by himself. Slower and slower but determined not to accept help. I admire him for this, but it's hard to see him struggle sometimes. After his shower, he sits on the bed awhile, gathering strength before donning the first garment. He rests between tasks.
The other night he woke himself by biting his tongue. There was some anxiety that this might be a precursor to some lack of muscle control, some spasm in his mouth, but perhaps not. It hasn't happened since.
It's hard for him to be still - Roch the fidgeter, the mover and shaker! But he is learning to be still, he says. I hope it helps that the house downstairs is such a lovely place to be and the garden is so lovely at this time of year. He sits outside with a drink or coffee and the customary cigar, i-phone in hand. Or you might find him in his comfy leather chair in font of the HD tv, with 'Judge Judy' for company.
So after all that, how am I? Well, I can tell you how I am today. Today I managed to go to Mass. (All you atheists out there - look away now!)
I try to go every week, but I don't always get there. Afterwards I felt lighter, still sad, but not hopelessly sad. At the beginning of the Mass, our Parish Priest, Fr. Willie spotted me and as he walked by, on his way to the Altar, he smiled and nodded. He knows us. He knows about Roch. The first prayer out of his mouth was for families in the Parish who have to cope with the illness of a family member. I'm sure he was thinking not only of us, but I know we were in his mind, when he asked for prayers from the community. That was a good start for me, but it got better. The response to the Psalm today was 'May your love be upon us Oh Lord, as we place all our hope in you.' The choir sang the response and something about it made my eyes fill with tears. I let my sadness surface - I didn't try to push it down as I would usually - so when the words of the Gospel were read, I felt their comfort too. "Do not let your hearts be troubled. Trust in God still and trust in Me."
Thursday 5 May 2011
A visit from Donna
Voting today for UK Parliamentary elections. It's the first time Roch won't be taking on the role of Presiding Officer. It's a loss for Hammersmith & Fulham and it's another loss for Roch. He is sad about that.
This morning our Hospice Nurse, Donna, came to see us. We both look forward to her visits. She's such a positive, cheerful person and very down to earth. We have a good laugh together. We can talk to Donna about just about anything.
Donna's visits are a great way for me to check in with Roch, without having to make my own enquiries! It may surprise you to know that Roch and I don't talk about MND all the time, we're not constantly asking each other the 'How do you feel?' Question. We're pretty good at communicating, but I don't expect to know or understand how he is all the time. So Donna asks the questions and I listen with interest to his answers. Today much of what he said was expected. On the plus side, he's still eating and drinking with no problems, still working full time (two days at home) and still driving. On the down side, the strength in his arms is diminishing and his walking is a lot worse. He uses a stick in the house and he can just about make it to the car but he uses the dreaded rollator more now and for longer outings the wheelchair. I learned today that he is expecting the next fall at any time and he's afraid of this happening.
We told her about our exit from Exeter on Monday, which was a bit hairy because we couldn't find parking anywhere and Roch needed to pee. In the end we parked outside a railway station and a very obliging station guard let us use the lift down to Platform 2 to use the toilet situated there. What a palaver. Donna expressed some surprise that it had been a problem and advised the purchase of a Lenor bottle, which she told us, she had been reliably informed was just the right size! Problem solved.
Today was a surprise when Roch talked about his worries for me. I've talked before about how we used to share a lot of the household chores - you never would have caught him with a hoover but his ironing was way ahead of mine. He often prepared the evening meal if I was working and he was home first. It doesn't happen much any more, it's so tiring for him and it's getting more difficult for him to prepare food. Although having said that, he did manage to cook his signature dish 'Carbomahera' the other day. Sooo nice!
I do most things now and today I learned that Roch worries about this and told Donna that he thought I felt 'trapped'. I was surprised because he hadn't said this to me, but sometimes it's easier to say these things to someone else, even when the person you're talking about is there too. I thought about it - do I feel trapped? No. I don't feel trapped in my life at the moment, because although it has changed and it is constantly changing, I still feel we are partners, living through this together ('in sickness and in health' to coin a phrase). It's like we're ranged together against a common enemy. But I can still make time for myself and pursue my own interests. I still get to go to work, so although yes I do feel more tired a lot of the time and there are certain limitations on my time, I'm not feeling trapped or burdened - not yet. On reflection, this surprises me. Surely I should be feeling burdened? Yes I wish it hadn't happened to us, yes I could have imagined a much better future for myself and yes, sometimes I do feel overwhelmed when there are so many things to do. It can be a problem for me when my priorities and Roch's priorities are different and I know he's relying on me to do stuff for him he can no longer do himself. A clash of agendas! But trapped? Where else would I be? Where else would I want to be? This is my family.
In the past there may have been times when I have felt trapped but not now. Maybe it's also because my counsellor and I work hard together to devise coping strategies, to assist with survival and strengthen inner resources.
I am aware of the fact that this may change. I don't know how I'll be as Roch becomes more dependent. But there's no point in imagining how trapped I may feel sometime in the future. I'm just happy not to feel trapped yet.
This morning our Hospice Nurse, Donna, came to see us. We both look forward to her visits. She's such a positive, cheerful person and very down to earth. We have a good laugh together. We can talk to Donna about just about anything.
Donna's visits are a great way for me to check in with Roch, without having to make my own enquiries! It may surprise you to know that Roch and I don't talk about MND all the time, we're not constantly asking each other the 'How do you feel?' Question. We're pretty good at communicating, but I don't expect to know or understand how he is all the time. So Donna asks the questions and I listen with interest to his answers. Today much of what he said was expected. On the plus side, he's still eating and drinking with no problems, still working full time (two days at home) and still driving. On the down side, the strength in his arms is diminishing and his walking is a lot worse. He uses a stick in the house and he can just about make it to the car but he uses the dreaded rollator more now and for longer outings the wheelchair. I learned today that he is expecting the next fall at any time and he's afraid of this happening.
We told her about our exit from Exeter on Monday, which was a bit hairy because we couldn't find parking anywhere and Roch needed to pee. In the end we parked outside a railway station and a very obliging station guard let us use the lift down to Platform 2 to use the toilet situated there. What a palaver. Donna expressed some surprise that it had been a problem and advised the purchase of a Lenor bottle, which she told us, she had been reliably informed was just the right size! Problem solved.
Today was a surprise when Roch talked about his worries for me. I've talked before about how we used to share a lot of the household chores - you never would have caught him with a hoover but his ironing was way ahead of mine. He often prepared the evening meal if I was working and he was home first. It doesn't happen much any more, it's so tiring for him and it's getting more difficult for him to prepare food. Although having said that, he did manage to cook his signature dish 'Carbomahera' the other day. Sooo nice!
I do most things now and today I learned that Roch worries about this and told Donna that he thought I felt 'trapped'. I was surprised because he hadn't said this to me, but sometimes it's easier to say these things to someone else, even when the person you're talking about is there too. I thought about it - do I feel trapped? No. I don't feel trapped in my life at the moment, because although it has changed and it is constantly changing, I still feel we are partners, living through this together ('in sickness and in health' to coin a phrase). It's like we're ranged together against a common enemy. But I can still make time for myself and pursue my own interests. I still get to go to work, so although yes I do feel more tired a lot of the time and there are certain limitations on my time, I'm not feeling trapped or burdened - not yet. On reflection, this surprises me. Surely I should be feeling burdened? Yes I wish it hadn't happened to us, yes I could have imagined a much better future for myself and yes, sometimes I do feel overwhelmed when there are so many things to do. It can be a problem for me when my priorities and Roch's priorities are different and I know he's relying on me to do stuff for him he can no longer do himself. A clash of agendas! But trapped? Where else would I be? Where else would I want to be? This is my family.
In the past there may have been times when I have felt trapped but not now. Maybe it's also because my counsellor and I work hard together to devise coping strategies, to assist with survival and strengthen inner resources.
I am aware of the fact that this may change. I don't know how I'll be as Roch becomes more dependent. But there's no point in imagining how trapped I may feel sometime in the future. I'm just happy not to feel trapped yet.
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