Juggling life through a bi-polar lens. Sometimes up, sometimes down. Mostly trying to tread water in the middle. Creating a likeness to a normal life. Whatever "normal" is...

Sunday, 7 March 2010

Crisis Point

Mum had another bad episode.

On her previous three, the doctors haven't known for sure whether they were all mini-strokes or seizures, or a few of each. They have treated her for both, and adopted a 'wait and see' plan, as no one had actually witnessed the start of an attack. This changed last week.

Mum an I adopted a routine for the weeks when I am at home; as soon as she is up and about in the morning, she calls me. This is usually between 8 and 8.30am.

Well, on Friday she hadn't called by 9am, so I rang, and couldn't get an answer. I called her neighbour, Karen,- we'd left a key with her- and she went into mum's house and found her still in bed. She called me back and told me that she couldn't wake mum, and that she seemed to be twitching and jerking a little. So I rang for an ambulance. When Karen got back upstairs to her, she found her foaming at the mouth, so we're now assuming that this is a seizure.

Now here's the most upsetting part. At least, for me, it is. Mum was wet. But neither the paramedics, the ambulance crew, or the team in Accident And Emergency thought to change her. I caught a train from Colchester to the hospital, at Gillingham. I got there the earliest I could, arriving at 1.30pm. She was STILL in her wet clothes. I had to ask, beg and hound staff to get her out of her wet pyjamas. And then they said they wouldn't wash her. So I got some paper towels soaked in water and tried to do it myself. Next they said they didn't have gowns. Her top wasn't wet so I put that back on, but there was nothing else. SO I just had to wrap a blanket round her. Underneath that she had nothing.

When I got there she was curled up under a sheet on a trolley in a side room. She looked so tiny and vulnerable. Karen had stayed with her. She said they got there at 11am and she didn't leave her side. I'm so thankful she was there for her. But mum didn't regain consciousness till Saturday.

Before then, she passed in and out of a weird, dreamy state in which she seemed to revert to childhood, pushing away any hands that tried to help her, defending herself instinctively from foreign touch. I got so upset when one of the nurses said to me, "Is she always like this, aggressive?" I nearly cried with frustration at this point! She is NOT aggressive! She doesn't know what she is doing! Another thing she did was sit up and put her arms round me and try to get me to lift her and carry her up in my arms, as though she were a child. By the end of the day I was so tired and I just kept crying because I couldn't do anything for her.

Luvbug came to the hospital straight from work and I never needed a hug so much!

I knew that Mum had a urinary infection because she had been to her doctor last week and told me about it. I cannot begin to imagine how painful it was to be left in wet clothes with this. She kept crying and pulling faces and clutching her pyjamas, but couldn't ask for help. I kept explaining to the nurses that she was burning, but it was hours before she got any painkillers or anti-biotics. They seemed content to leave her lying in it every time the sheets got wet, so I kept taking them off the bed and giving them to the nurses and asking for fresh ones. At one point one of them told me "you may as well leave them because she'll just keep doing it." I wonder, would she leave HER mum like that? I also kept washing her with cool water to try to help her.

When we came away from her Friday night, she was more settled, and was lying on a large pad to help her. I queried her fluids drip- it didn't seem to be working. It turned out that it wasn't. Then after they fixed it, it again didn't seem to be working. We were told that it was, but they had slowed it right down. We had driven half way home before the thought occurred to me -with growing horror!- that they had slowed down her fluids so that they wouldn't have to change her during the night!!!!!! I felt physically sick when I realised that.

Saturday- I arrived at the earliest visiting time allowed- 3pm. Mum was dozing. I said hello and she stared at me. After a while she spoke quietly. But she thought I was her sister. She didn't know why she was there, where she was, etc. I spoke to her about it all, but little went in for very long, so I just sat with her for the hour and held her hand. She held both my hands and slept. I put my head next to hers on the pillow and we just stayed there together till the end of the visiting hour. On the way out, a nurse told me that a doctor had passed her as fit to go home! I told her, er no, I think not, she thinks I am her sister, this is not normal.... so she asked, "Oh! Is that not normal for your mother then?" -!!!!!!!!!!! Turned out she wasn't convinced by the doctor, hence her asking me about it. I told her that maybe she would be better Sunday, perhaps then. To this, she said, "Oh well the doctor won't review her tomorrow, not if he's passed her fit today."

Sunday- In the afternoon she was still confused over who I was, and Luvbug, too, whom she thought was still at school(!). But this time when I explained things to her they seemed to stay "in". But she asked where she lived, and whether she had any pets, and what job I do, or what did I used to do..... lots of memory gone.
This evening's visit was better- she remembered her address and her cats, though not their names.

This evening they had to move her to another ward. Seemed a bed was needed so the fittest patient had to transfer. This was mum. So, since Friday, she has been- A&E, Assessment Ward, Dickens [general care] Ward, and now, believe it or not, she has a bed in a cancer ward, simply because that is where the free bed was. The good part is that it is in a new block, so very comfy, tv by the bed, en suite bathroom. The bad part, of course, is that it is another team again, and this hospital seems *crap* at passing on information.

On the way out, as a sort of after-thought, I stopped the nurse and asked, "Has anyone passed on that mum can't eat lamb, as it makes her ill?" They hadn't. Another note on another file.

Luvbug has gone home now. I'm finishing up mum's laundry and tidying, remaking her bed, etc. Just in case they do discharge her tomorrow, as I think they will.

I called this post 'crisis point' as I feel it's a turning point: now we know it's seizures, how about some treatment? Therapy? A plan, someone? anyone?
So far there has been nothing said about treatment for epilepsy, or info about the condition. I did tell them that her doctor had said that an EEG should be done as near to an attack as possible, but no one is interested. All I think I can do is get her home and look after her, and get her to see her own GP as soon as possible.

I don't know how, but she has lost weight again. Maybe there is a weight below which her body just can't cope. I need to help feed her up again, though with me being here every other week, I just don't understand how she has lost it.....

I feel I am almost alone, fighting for her. I feel I am kicking water trying not to drown. I don't know what I would do without Luvbug. Oh, and the only sibling I have in this country hasn't even called to get an update. Let alone come visit. He lives half the distance away.

Oh well at least typing all this has got something out of my system..........

Please send out good vibes this way......


Angel and Kirby said...

This is another setback! I am so sorry the hospital seems to be so lax in caring for your Mom. We are purring that you can get her moved closer so you won't have so much stress.

i beati said...

bottom line it happens for a reason, to make us stronger for the future. I wish her life was gentler.. you may be fighting alone and if so put on your armour girl your mum is worth it.. don't look for too much sympathy in hospitals. i learned the hard way fighting an illness alone and hoping for compassion. hope you don't take offense to my dose of reality here. i'm proud of you very proud..

Calamity Jane said...

Oh sweetheart, this all very deja vu for me, my Mum was treated in exactly the same way. You are NOT alone - I have been worrying about your situation for a while now. Big hugs from the next county.

MISS PEACH ~(^.^)~ said...

Oh my sweet helena! I am so sorry you are having to fight for your dearest mum's humanity in all of this illness. It is not fair that our beloved are merely a case number to be reviewed at whim...or not to be.
I am proud of your CATITUDE! Your mum needs you now...down the road you will never have regrets dear friend that you rushed to her side and fought for her well being. Keep up the good fight...every tiny comforting step is a plus for all of you.
I have fought this fight for my mother many years ago and only wish she were still with me. I miss her very much. FIGHT for your rights....for your dear mum.
You are a brave and powerful person Helena and with your Luvbug beside you a great team. I am sure he gives the most furry bear hugs when you need them most.
Soft hugs from the cozy cottage and chin up...we love you and you are never far from our thoughts....

Blue said...

Oh Helena!

Reading this made me cry I feel soooo for you.
You're doing a wonderful job fighting your dear Mums corner.

Love & hugs

Julie said...

Helena, my heart goes out to you. Hospitals can be so heartless and impersonal and it's an outrage that your Mum has received such poor care. Weekends are the very worst time to go into hospital as there are so few staff so I hope today your Mum will get a proper consultation and a treatment plan for what sounds a serious condition because it sounds as though she needs better care from the professionals. You are doing everything you can for her and I can feel your frustration. I hope someone listens to you today. Look after yourself too. xx It was good to write it all down here too to remind you of what happened. xx

Anonymous said...

Hi Helena! So sorry to read your story about your mum and her bad treatment in hospital..I really hope that she gets better soon and can go home to the people who love her. I had a similar experience with my gran - fortunately we were able to transfer her to a different hospital which was a completely different world from the first, so much better. Anyway, hugs to both you and your mum. Dulcie xx

Anonymous said...

oh hun sounds like a nightmare! your poor mum. i really hope she recovers enough to be home soon, and dont be afraid to complain to the hospital - they have a duty of care to their patients and it doesnt sound like they are fulfilling it. it may get you no where, but it might help. hugs hun xx

Linda said...

Helena (((hugs))) Stay strong and keep fighting for your Mum♥ I'm praying that your Mum will soon be feeling much better. Take good care yourself and thankfully you have Luvbug by your side. xoxo

Feronia said...

I am so sorry to read of what's been happening, Helena. I am sending all my good vibes to you and your dear Mum. My Mum works within the health sector, so if I can be of any help getting some advice or ideas for you, please just let me know.

Stardust said...

Helena dear, I'm totally sad to read what your mom and you had to go through, very disappointed with the lack of support that ought to be yours. It must be totally tiring, but please do not give up hope. I hope that peace finds every single hearts there and make the bad days a little more cheerful. Sorry about all the frustration that you're going through, but I'd like to think they are part of what's beautiful you're doing out of love for your mom. Please hang in there and I'm praying that more help goes your way.

Big hugs + positive vibes.

Chrissy said...

Good vibes sent, it all sounds very distressing and I do think you need some support.
I am not sure you are going to get many answers from the hospital, the doctor sounds like your best bet. Take care of yourself too, hugs ~ Chrissy

Helena said...

(SNIFF!) Thank you all for your lovely comments. I logged on and saw how many there were and got a lump in my throat, I was so happy that so many had popped by and that so many had cared to leave a note. Thank you all! I hope I get time to blog hop soon and catch up with all of you.


CherryPie said...

I hope your Mum is feeling much better soon xx