|
Although doctors thought her husband wouldn't be able to do much for himself any more, he gradually started recognising people and responding to conversation.
|
|
|
I slept at the hospital. I spent most of the time sitting with [my husband] in Intensive Care. And then by Wednesday evening I think we noticed, I suppose we were looking for any signs that there was an improvement. He had started to turn and look and typically [my husband], he was a technician, you know [laughs], he kept looking at the equipment. That was the first thing he looked at, the flashing lights and various sounds, he actually started to turn towards those and he started to move his left hand.
But we were told that this was just a, that this really wasn't responding, that it was just a reflex, muscular action. But we were just looking and looking and perhaps seeing things that weren't there but just, it was giving us a little bit of hope.
And by Thursday morning they were hopeful that an ICU bed would be available at our local hospital. And the nurse who had spent a lot of time with [my husband] that week, she asked him to put out his tongue and he did and she asked him a second time and he did it. So then they were sure that there was a response there.
So he was transferred to our local hospital and when we got there, the doctor from ICU said, “Oh he is doing so well. I didn't expect to see him again.” But of course, meanwhile we had been told that he would survive but that his brain function would probably, would be almost nil. That he would be doubly incontinent, that he probably would never feed himself. He'd have to be fed by a tube, that he wouldn't move, that it would be 24-hour nursing care.
And when he came back to our local hospital he actually had a tracheostomy that afternoon because at that stage, because I think he'd been, well he'd been rejecting some of the nutrition he'd had in the other hospital. And I think he was beginning to get problems in his throat from having so many tubes down there. But within a few days he really started to respond a lot more. He'd look and when we said names, you know I would say, “Oh [daughter's name] is here”, who's one of our daughters, or “Our son is here”, he'd actually, and when they'd say “hello Dad. Yes I'm here”, he would actually turn in recognition. |
|
|
|
She'd had cancer before and worried about who would look after her husband if she ever became ill again.
|
|
|
But [my husband's] got two brothers and a sister living locally. And one of my sisters-in-law, his brother's wife said, “You know” she said because I talked to her and I say, “One thing that really worries me is if I were hospitalised for any reason, you know”. I said “[My husband] will probably, might have to go into respite care because I couldn't ask [daughter's name] to look after him”. She said, [my sister-in-law said, “Oh well”, she said, “He wouldn't have to do that. You know”, she said, “We have plenty of room here. We would.” You know she said, “That wouldn't, you know, it wouldn't come into the equation” she said. She said, “[Your husband] could always come here.” And so it means there is that but it is a bit of worry for me because five years ago I had surgery for bowel cancer. I actually had to have a section of bowel removed but I mean luckily, you know, there's been no recurrence of the polyp that became cancerous. So luckily it was got in time. They were able to remove it and I have very regular check-ups for that, you know, for that but, you know luckily everything is fine at the moment. |
|
|
|
She felt her husband needed specialist support for his brain injury but wasn't getting this on the ward he was moved to.
|
|
|
After two weeks he was discharged from ICU and went on to, well what I thought was a holding ward while waiting to get to the rehab unit. But unfortunately he was there for a very long time. It was actually a chest ward and [my husband] really didn't have the type of care he needed. He had good nursing care. We've no complaint about that but he just seemed to stagnate there. He had very little physiotherapy. He had very little help in sort of neurological help, in fact in some ways he was neglected on that ward because they just did not have the facilities to cater for him. And he was being tested for swallowing and so on because that [my husband] would have to be helped to put in his dental plate. He and the speech and language therapist used to come in the morning. [My husband] was never able to actually chew food although when I used to go in, I started going in every day at 12 o'clock and staying with him until half past eight because I felt he wasn't really receiving the nutrition.
Things were not very good. And I was getting more and more depressed over the situation because in some ways [my husband] was improving but in other ways he wasn't. He wanted to be able to walk and he was getting out of bed but unfortunately because he hadn't had physiotherapy he hadn't actually taken any weight on his feet from the 19th of November until the 14th of December. But of course he really wanted to be able to sit up and walk but because he was having minimal physiotherapy, so much so actually that the senior physiotherapist advised me to write to the head of inpatient therapy to see if anything could be done.
And at that stage I just felt [my husband] has been through so much, he has cost the NHS so much just keeping him alive and still he just cannot get this, the extra little push which might, you know, get him home from hospital. And we were just getting more and more frustrated waiting day after day, saying well when is he going on to the, you know, the rehab ward. And they kept saying, “Well there isn't a bed available yet”. But from, [my husband] sat in a wheelchair for the first time, he was hoisted out of bed for the first time on the 14th of December and by the 16th of December he was actually walking with the Zimmer frame. He was just more than ready for it. And from then, things just improved so dramatically from then on. |
|
|
|
Her husband was improving but became dehydrated and developed a kidney infection, which set him back again.
|
|
|
During a lot of this time [my husband] was very agitated and not deliberately but he seemed to pull out his canulas because he kept, he'd thrashed his arms around a little bit and his favourite way of lying in bed was actually lying sideways with his legs over the side of the cot. And, you know, the canulas kept coming out with the result that then they left the canula out and [my husband] was receiving very, very little fluid. He actually contracted kidney problems, although my daughter who is actually now, she's one of community matrons locally, she pointed out that he really was showing the clinical signs of dehydration but they kept saying, “Oh we'll wait for the blood test”. With the result that when the blood test came through, the results came through, [my husband] had you know quite a bad kidney infection. And he went on antibiotics for that and had a very bad reaction to that. He came up in a rash, got the most horrendous diarrhoea and he was just tearing himself because of the itch. And this happened like coming up to a weekend when there was really very few doctors available and in the end just one of the nurses took very kindly, she actually sent down to the children's ward to get some calamine lotion for him. |
|
|
|
She visited her husband on the ward every day so she could feed him and make sure he was eating and gaining weight.
|
|
|
Until the speech and language therapist could check him for chewing and swallowing, he couldn't, he well he just couldn't be given a meal where he needed to chew although he'd eaten, he used to eat, he used to eat quite chunky stuff that I took in when he had his dentures in but, you know. He just , well he couldn't you know.
Were you told when the speech therapist would come and have a look or were you just kept waiting?
No she came, she did see him quite frequently and actually she was very concerned about [my husband] because over and over again on his chart it was saying, you know, he had sort of one spoonful full of porridge in the morning and simply because they did not have time to feed him, the time. It took a long time. It used to take me half an hour to get his main course in and I used to keep his lunchtime dessert and feed him that an hour later and likewise for his evening meal. It was time-consuming. But we happened to be, my daughter happened to be with [my husband] when the gastroenterologist came because the speech and language therapist had voiced her concern about [my husband's] nutrition. And he came really to assess him to have his tube, I can't remember what they call it, [laughs] straight into his stomach. And [my husband] was, I was feeding [my husband]. I think he was having yogurt with lots of chunky bits of fruit bits in it and he said, “He doesn't need help”. Well I said, “I know he doesn't but he, you know, I come in to feed him lunch but he's not having any breakfast or anything else. So then he decided that [my husband] did not need this treatment and I think he did voice concern.
Then he said, because I said, “I'll come in at 8 o'clock in the morning to get [my husband] breakfast if that's what it takes”. And he said, “No”, he said, “That shouldn't be necessary in a hospital, for family to have to come in”. So I think he said that a chart had to be kept of everything that [my husband] had, including sips of water and all the rest of it. And the nurses had me to fill in this chart as well, everything that he had to eat. And of course, there was no question of [my husband], he just started to perk up after that. It was really.
And put on weight?
Yes and put on weight, you see [my husband] was not receiving enough fluid because it took a long time to get, I mean I used to get those squeegy bottles of Ribena and literally squeeze it into his mouth because I think he had he had almost lost the ability to…. Well I think sucking is a very difficult function for an adult [laughs] and he just was not coping with it. And I mean urine output was very, very low and of course he just, he was having sips of water really and that was it. |
|
|
|
Her husband improved physically over time but, because his memory is still very poor, she doesn't like to leave him on his own for very long.
|
|
|
After he came home things weren't easy because, I mean [my husband], I just couldn't leave him at all. You know even to get in the bath and I used to have to sit up there with him really to literally, I just could not leave his side. But gradually things improved. By the end of January he was, he didn't always know where he was. He'd begin to realise that this was our home but when he left hospital he said, “Well”, he said, “The first thing that I've got to do,” he said, “Is to try to find a job”. And I was saying, “[Husband's name] you've been retired for a number of years”. And, “ No, no I need to get a job”. And then he seemed quite content. “Oh,” he said, “That's good,” he said. And then he started saying “But have we got enough money?” I said, “We've plenty of money. We've got the same money that we've had before you became ill.” And those things started to concern him a little bit although he just… He still can't really cope with the financial things at all but that bit doesn't matter. But he gradually, gradually improved and then we went on a bit.
My younger daughter who'd actually gone to Goa for a little bit of the beach bum for [laughs] three or four or five or six months [laughs]. She came back to see him at the end of January and of course she took him for little walks around the streets. She just couldn't believe when she walked down the back lane he said, “I've never been here before. Where is this? Where are you taking me?” That was about the 26th of January, just about three weeks after he came out of hospital. And then she came back again for a week in March and she just could not believe the improvement he had made in two months. |
|
|
|
Although her husband has made lots of progress, he still can't be left on his own for very long and, sometimes, other relatives help out.
|
|
|
Although I do leave [my husband] now, I mean I go to church and things like that. I will go out. I won't leave him for longer than say an hour and a half, two hours at the very most. But I have no worries about leaving him in the short term. I couldn't leave him for a day because I think he might go out and let the door slam after him or, you know, he's just not as with it. Also he does not cope with phone calls. He just, although he will write sometimes, he sometimes will remember to write down if somebody rings but even, you know, even family members if they ring. And he'll say, “Oh yes somebody rang”. And I'd say, “Well who was it?” “Oh I don't, I can't remember.” And then maybe the next day you'll say something and you might say it's one of our daughters or you'll say something like, “Oh [our daughter's] coming. “Oh yes she told me that when I spoke to her yesterday”. But I will come in and he will have completely forgotten.
I could never leave [my husband] overnight but, luckily, we have a daughter that lives locally and I've got three teenage grandchildren who, you know, are available really should he need help. He's always got on very well with his grandchildren. He loves it when they come and they've spent a lot of time here with him. |
|
|
|
Although she's never been interested in financial matters, she is now having to take care of everything because her husband wouldn't be able to remember any of the details.
|
|
|
Another thing which I found, well I suppose it has saddened me so much because although [my husband] had a number of private pension plans and there was one that he had not taken and he intended to take that this year. And of course he has done absolutely nothing about it and I have sort of been arranging that. I mean luckily I've sort of gone through somebody who is handling it for him. But you know there are forms coming in and so on and it saddens me, [my husband] who was so on the ball over things like that, but suddenly you know, here am I, who know nothing about it. I am arranging it but I've reached the stage… Well I mean luckily really they have handled it very well and they've got sort of an impaired life pension from it. But you know he's just. I am sort of thinking well you know he has saved all along for this and so on and I thought yes I want to have the best out of it. And sometimes I think you know this is something I never really, I didn't have any interest in it because mine was a final salary pension and I mean I took what I was given and that was it. Whereas [my husband] has always been very, very, you know, very interested in those things. And suddenly here am I the person who always said, “Oh I don't really want to know”.
I find that things like that, having to handle things like that it's quite difficult. And seeing him not having any interest in it, something that you know he would have been getting cross about and [laughs] arguing with advisors about it because, in many ways, he knew as much about, because he read an awful lot about, you know investments and all the rest of it that he would of. He knew as much as most advisors for it but I mean the fact is I sorted of handed that over to somebody else because I would not know where to start, you know, transferring pension funds and all the rest of it. But luckily it's all nearly completed now. So that's good. |
|
|
|
Her husband is now very forgetful and she has to explain things to him and sometimes feels sad because their relationship has changed.
|
|
|
There's the sadness for what we have lost. [My husband] doesn't feel that sadness. I do, you see. He's aware that there's very much missing. If he could drive now that's all he's thinking of [laughs]. That is. That's, to him, that is the only thing he's lost, his ability to drive. But he thinks, you know, that he'll be going off and doing things that he did before but we…
How about for you?
You mean…
Things that you feel you've lost, time together that?
Yes, yes, we have lost the sort of times, that I need to, I have to explain an awful lot of things. You can't just make a statement. Now like the other day we were looking around. I was just buying some milk actually and I went and said something about organic milk. Well I mean I don't know how you feel about organic goods but I don't buy organic [laughs]. And you know and I said, “Oh that's organic. I don't want that. I don't want to pay extra for that”. Anyhow “Well now,” he said, “Organic”, he said, “They've just added something to it”. And I was trying to explain to him what this… “Everything is organic”, he said. “After all if it grows, it's got to be organic”. And I was trying to explain to him that to use the term organic it's got to comply with quite strict regulations. You know I said it's got to be no artificial, no pesticides, nothing like that. And he just, his idea of it, well organic he just said they add something. Actually you know, they don't and I was explaining to him whereas before he would have known exactly what it all. He said everything is organic these days and they go on and on about organic things. But he didn't really realise what organic is and why it really is more expensive because obviously you don't produce as much [laughs]. If you're not getting rid of the weeds and that and the pests it does cost more to produce. And you know, just little things like that and you'd have to sit and explain so much. |
