26 April 2011

The trouble with food...

This weekend my parents came over from Holland for Easter. On Saturday, we put JD in her chair again and rolled her outside onto the patio to enjoy some nice time outside. i had hung up some blankets to create shade and it was a lovely little space for her. The bbq was fun and JD did eat a bit of food.

Lately, eating and drinking have become more of a problem. It seems that JD is slowly losing the ability to voluntarily control her muscles. This means she has trouble swallowing but also trouble REMEMBERING to chew (or something like that). Food will remain in her mouth for a long time and she needs constant reminding to keep chewing and to swallow. Other times, she simply won't open her mouth, no matter how much I try. Since she will only drink when she has food in her mouth, this also means she drinks nowhere near enough in a day.

Often, when people are dying, they lose their apetite. JD seems to be different. It seems that she does want to eat but that she is simply sleeping too much to be able to concentrate on the chewing and swallowing.

She is very sleepy and has been for the past 3 days. This may be a sign of progression of the disease. Or it may just be because we have exhausted her over the past 3 days, having her in the chair for too long every day.

I have spoken to the district nurse and we agreed to see how things are in a few days. It might just be a temporary blip.

UPDATE: Today, JD has eaten her way through an entire bag of Kitkat bites and a pint of orange juice... Yay! She is also much more awake today. So it is clear the two things are very much linked. Maybe it is something as simple as that when JD sleeps, her entire body goes in to a much deeper kind of sleep as before and unless she is fully awake, she is unable to eat or drink.

So maybe I need to work harder at keeping her awake....

20 April 2011


Jane is having a sleep in her chair today. Yes, it means we got the hoist to work. Opened the door to the patio to let the sunshine in.

18 April 2011

Difficult weekend

Learning to say no is an important skill but it is so difficult. As most people have a job, a lot of people want to visit at the weekend. I am not good at saying no as I do not want to deny anyone their time with JD. And, I like visitors as well.

However, this weekend I got it all completely wrong and nearly had a nervous breakdown.

First of all, on Saturday morning, my sister and her husband came to stay. They had only just arrived when the carers showed up. So then there were 4 extra people in my house. I was keen to get JD in to the chair in the living room so I suggested we tried to use the hoist to put JD in her chair so she could sit and hold court for the day.

The sling

Now this hoist is quite a beast and the carers were not sure how to put JD into the sling properly. They started to put JD in the very complicated looking thing. In the pictures, this always looks easy, with the patients smiling happily. In reality it was a nightmare! We could not get it right and when we hovered JD off the bed, it looked all wrong. JD looked in serious distress and I was panicking a bit. We decided to abort the attempt and try again another time. So all the man-handling was for no reason.

As we were doing this, a friend arrived for JD on a planned visit. So then there were 5 extra people in the house. Due to the whole hoist-disaster, I was stressed and very upset so very much flapping about.

The carers left and another friend arrived. So still 4 people in the flat.

Around 4, another 2 friends arrived, just after the previous 2 left. By now I had calmed down a bit so things were fine again.

On Sunday, we did manage to get JD in her chair in the living room but with friends arriving just as we were doing all the hoisting, it was a stressful start of the day again. It got worse, much worse.

After all friends and my sister had left, the carers and I had to put JD back in to bed. When we were lifting JD from the chair onto the bed, she started to slip out of the sling. She is quite heavy these days and having her fall out of the sling onto the floor would be a disaster. As she helplessly slipped further down, I panicked. Luckily the carer just said: I have her legs, you grab her shoulder and we'll just lift her onto the bed. So we manhandled JD onto the bed. I swear I saw tears in her eyes. I too cried again. I promised JD she would never have to get into the hoist again.

I told the care agency I wanted a different sling. JD really likes to sit in the chair in the living room so I really want to make it work. It will make her feel more part of life, insteadmof spending the day in bed. But not when it confuses and scares JD, hanging in some uncomfortable contraption.

So combining all that stress and agony for JD, this was easily the most stressful weekend in months. And that includes the weekend when JD had her seizures!

The new sling was delivered this afternoon and looks a lot easier than the previous one. stay tuned for a picture of JD in her chair.

15 April 2011

In it for the long haul?

JD is getting a steady stream of visitors. There are people here almost every day. It is nice, I think, for JD but it also breaks my day a bit.

JD is now really speaking only a handful of words every day. If we are lucky, she might just respond a with a Yes to a few questions but that is it. I am however working on the assumption that she can hear and understand everything. So I read to her, watched the DVD of Green Wing and have visitors sit and chat around the bed as normal.

My big worry is that she is able to understand everything but unable to communicate. A bit like locked-in syndrome. That would be terrible for her. I just guess how she is feeling and hope I do the right thing.

Even if her cognitive functions are deteriorating, physically, she seems fine. Her appetite is good, she sleeps well, her breathing is strong. I guess that as long as the tumour does not interfere with the brainstem and vital body functions, she could be like this for a long time. This cruel disease does not always progress in neat stages. With JD it seems to be more short, steep decline and then a period of calm where it is relatively stable. So perhaps we have just had the period of steep decline and are now enterng a long period of calm. No idea. But last week I had the feeling she woukd not be long for this world, but this week I am feeling much more confident that there is still some time left for us to spend together.

Now I just need to think of things to do with JD.

14 April 2011


With the help of the nurse, we managed to get JD in our bed. We are now lying in eachother's arms, cuddling. Nice.

10 April 2011


After a very hectic few days, things have now settled in some kind of routine. JD is in bed most of the time. Sometimes we get her out of bed around mid day and she sleeps in a chair in the living room. Around 3pm, we take her back to bed.

There is a lot of sleeping going on. 4 times a day nurses and carers come in to help change the bed and make sure JD is comfortable. The district nurse comes around 1pm to change the medication in the syringe. All in all, there is a massive support system available for me and JD.

I have to learn to let go when the carers are here. The are happy to have me help them with the care but they all keep encouraging me to go out and take some time for myself when they are here. I don't feel that need so much but they all have the experience so perhaps I should listen to them.

Last night I had a bit of a panic attack about the whole dying thing. I was sitting on the bed next to JD and we were eating apple crumble. It was all quite pleasant and loving when suddenly it struck me that even this distorted idea of happiness would not last. I suddenly got all cold and felt my throat close up. I broke out into a sweat. If I had been alone, there would have been an almighty crying session but I was sitting with JD so I did not want to upset her.

I think it is obvious I am not at all prepared for life without JD. I can deal with the present, no matter what it is because she is still here. No matter how much our relationship has changed due to this evil disease, she is still there and I can still see the woman I love. When I look at her now, sitting in her chair, asleep, I can almost pretend she is perfectly healthy and that this is all a dream.

06 April 2011

Hurrah for the NHS

The NHS gets a lot of bad press (mostly from the Daily Mail) but I think they are awesome. JD is now home and comfy. There are carers 4 times a day. Once per day, the nurse visits. JD was discharged from hospital with all her medication for a month, bags full of syringes and dressings and a detailed chart written out for me with all her medication. There is an emergency nurse available 24/7 and if I want some time away, the Hospice at Home team will come and sit with JD for a few hours. All relevant people have all the details and all of it was organised in 24 hours.

I am a bit scared about the first night alone with her. I think I will struggle to sleep and will be checking her breathing every minute or so. The nurse did say the nights would be the hardest.

The carers will be here an hour each time, 4 times a day and I have decided to use the afternoon hour to take up running. It is a good way of getting some exercise because apparently my arse has become rather large. Secondly it gives me some time away from home without feeling I am leaving JD alone for no reason. Hopefully I can get some regular running going and get a bit fitter again. And thinner.

JD seems to be quite comfortable and not in too much pain. She had a right laugh when watching Top Gear this afternoon and is now sleeping again I think.

We can do this.

05 April 2011

Today is the day Jane comes home.

Jane is coming home today with a raft of carers and nurses in tow. Apparently they have just introduced a new service in Northampton for community care that is organised in a more flexible way. Sounds good to me.

I know it was unrealistic but for some reason I had a picture in my head of Jane just being in our bedroom in the hosoital bed, free of pain. Peaceful. But of course because she has trouble swallowing, she needs syringe drivers for some of her medication and this has dramatically changed the picture for me, making my house feel like a hospital. I am slightly overwhelmed by the enormity of the reality of our lives for the next few weeks.

Jane seems to be sleeping most of the time and if you ask me, it will be weeks, rather tha a few months before we have to say goodbye to her. My God, I don't know how I am going to cope with it. I miss having my family around for support.(Sorry mum & dad, I know you read this blog and I know it upsets you that your daughter is so far away and that you can not give me a hug when I need one but I am not going to hide the fact that it upsets me too).

Luckily my sister is coming over some time in the next two weeks and I suspect my parents will be here again soon as well.

I would like to hear from other people with experience of loved ones dying at home. At the moment, my ideal option would be for Jane to be home until a few days before death and then go to the hospice. I feel I can not deal with having her body in the house, undertakers running around etc. I am afraid I might not be able to sleep in the bedroom again after that. My nan's sister said that she still has nightmares of when her husband died at home and all the things that happened after that. I know I might change my mind on this of course but I would like to know how other people feel about this.

04 April 2011

Coming home

JD is hopefully coming home tomorrow. Today I spoke to the community care team and they said JD will have carers coming in 4 times per day to help with getting washed & dressed. I look forward to having her home. The Neuro Oncology Nurse said tht the way things are at the moment, she expects JD to be with us for a couple of months or so. I look forward to having her home.

She is currently sleeping a lot and has frequent spells of absence. These can last for a few seconds or minutes. There is no physical sign when they happen but she will just stop responding for a while and just stares into the distance. There have not been any more full-on seizures and she is on different anti-seizure meds to avoid further episodes. This morning she had a good laugh about a story her mother was telling her. It is nice to know she still understands everything you are saying. It is just that sometimes she doesn't seem able to respond or process exactly what she is asked to do.

The other night, I cried for an hour until my muscles ached. Last night I put off going to bed because I am afraid of how lonely and empty it is. I can not imagine how much hell it will be in the future. I am glad JD is coming home. It is lonely without her.

If you want to visit JD, drop me a line and we can sort it out.

03 April 2011

In hospital

On Friday, JD suffered a seizure around 6pm. This was a different thing than her "normal" small seizures. When she is on high doses of steroids, as she is now, she sometimes has short absences of about 20 seconds where her eyes roll and she just goes all slack. When it is finished, she is straight back to normal.

On Friday however, she experienced a 'proper' seizure with groaning, mouth foaming and the like. I called the ambulance and they arrived within 4 minutes. Amazing. Friendly ladies took JD to The hospital where she had to wait 4 hours before being seen by a doctor. (unfortunately two patients had died in the A&E so things were a bit

They admitted JD, who had 2 more seizures whilst waiting.

She ended up in EAU, the Emergency Assessment Unit. This is where patients come from A&E when they need to be observed for a few hours, before being moved on to a proper ward in the hospital. It is an awfully noisy place with people running around all the time. I stayed with JD until 3.30am and then went home for some sleep.

In the meantime, my parents, who had arrived for a short visit from Holland only hours before it all kicked off, had gone back to their hotel as they had waited for me back at home when JD was whisked away to hospital. When I came home, I found that my mother had used her time well. She had done all the ironing and cleaned the bathroom and the kitchen. Yay for people who understand how much that sort of thing helps me.

I had a few hours kip and then went back to hospital. JD was ok but a bit confused. The doctors and nurses are having trouble making a proper assessment of JD as she does not always respond to their questions. So when she does not lift her legs as requested, they write down she is looking paralysed. But she isn't. She just does not understand the question. Because 5 minutes she might respond if you ak the same question again. Or they ask if she has a headache, she might not respond or say no. But I know that she has more or less permanent headaches.

So I make it my business to be around as much as possible, to make sure JD gets the care she needs.

They are keeping JD in the hospital until they can organise carers to help me with JD at home.

I will write a post later about the concequences of all this. Am going for a quick nap before going back to hospital.