Saga of Lindy Loo continues

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Posted: Fri Oct 21, 2011 9:02 pm

To bring members up to date click on this link first before reading below,
http://forum.419eater.com/forum/viewtopic.php?t=167531&highlight=

My wife Linda was in hospital for nearly 3 months, being discharged towards the end of September 2009.
Other than penicillin Linda was also put on acyclovir, which gave her very, very bad hallucinations, these were worse, than what drunks see, one time she thought the bed was attacking her, had her screaming, crying, ordering me to take her home now, knew that it was the medicine that was fighting the brain infection Linda had, this was so upsetting at the time, than when I got into my car to go home, I just cried my eyes out, I could not help it.
This lasted a week before she quietened down, 2 years later and she still picks up imaginary fluff and puts in the bin.

Next problem was our son phoning up and wanting to know why his mother was not eating, he and his future wife had been reading Linda’s medical notes, I didn’t know why, it was the first time I had heard about it.
Just happened to be at the hospital a few days later, when I had a chance to see her notes, it had been written that my wife refused food, at her evening meal.

Came in the next day just before the evening meal was due, also there was the Linda’s elder brother and his wife, when the steward came and asked Linda if she wanted soup, shepherd’s pie and trifle, my wife having a brain injury took a bit of time, before slowly shaking her head, he walked away, my brother’s wife and I both looked at each other and she ran off and grabbed 2 trifles and we had to hand feed Linda.

On my way out I checked if Patient Advice & Liaison (PALS) they were shut, I phoned them next morning and they were going to contact the ward manager.
I made sure from then on that I was at the hospital for the evening meal, first night a nurse was there, but as I was there I was able to ensure the wife was feed, with me having to feed her until she could do it herself.

The next problem had to crop up was our son’s wedding in August 2009, I had pressure from
Them both that they wanted his mother at their wedding.

Took a bit of planning, had not only to get permission from the doctor, but also the ward
Manager, but then Linda gets moved to the rehabition ward and I had to start again, doctor
would only allow, 3 hours for the wedding and photo’s, think it ended up 4 hours. Arranged
with the British Red Cross for transport and a wheelchair, to and from the hospital.
A nurse helped Linda get dressed, had already bought her clothes before her illness,
I had a bright idea and had bought a pair of white trousers to go under her dress, which hid the catheter.

I haven’t forgiven my son yet had to chase around to get to the hire shop; he had hired morning dress for the men, Top hat and tails, felt like a prize penguin and looked it, with a shirt collar that kept flipping up.
Had to bring on a substitute for the reception.
There is no truth in the rumour I nudged my mother-in-law, by the chocolate fountain.

Linda had been moved into rehabilitation ward, as she had forgotten how to walk, had a nurse either side of her, moving her legs in walking steps, this trained her brain in doing things automatically, which also led to washing, dressing, doing to the toilet had to have support at first, followed by sessions in the gym climbing stairs, they also tried cooking, but other than burning the toast, and was ribbed about it.
Started off bringing in photographs to show her, it very quickly came apparent that each photograph needs to have a note attached to explain it.
Brought in our wedding photographs at first, Linda only knew one person in them, (it wasn’t me) but her late Nan, that pleased her mother.
I wrote to everyone on both sides of the family’s and explained the situation and asking if they had any photo’s showing Linda in them.
Also contacted Linda’s best friend from school and she had some photo’s not only that Linda knew, how old she was when it was taken which was more that her friend knew, also their old school group photo’s which brought up the subject of their school uniform, bottle green (already been mentioned in another posting, Cougar had the same) which they all hated.
Had to keep bringing in clean clothes for her and taking home and washing her dirty clothes.

Worked it out that Linda had forgotten about 11 weddings, including ours, 2 births, our sons and a daughter she had from a previous relationship, ex boyfriends, christenings, parties, friends from work and where she had worked. Lost the good and the bad memories.
Have filled in some gaps, but a lot of gaps remain.

Linda had been given permission to come home, each day at the weekend prior to her discharge from hospital, 1st weekend she chicken out, had lost all her confidence, finally did come home for good, after we had a meeting with the hospital doctors and ward nurses.

We went and spoke to the managers she worked for and told them Linda had been discharged. Their answer was we will have to arrange to have a meeting.
Linda had been in the hospital for 3 months and not one manager came to see her,
(What they did not know was that an Employment Manager from the parent group was also in the ward and she saw and mentioned it, I was told this by the woman’s husband. The contract expires in February 2012, see who gets the push.)
They would not tell Linda their names, just kept saying you know me, don’t you.
When we finally had the meeting, union rep as well, Linda could not understand what was going on, I could and they were asking questions that neither of us could give answer two.
On union advice we submitted an application for early retirement, it was turned down, then 2 months later Linda was given early retirement, a friend of Linda’s, her uncle was a retired barrister, his advice was that it is perfectly legal for company to do this.

Linda had no pension from this company as she had not joined their pension fund.
So that left us to claim benefits, what a fight that is, still don’t know if we have claimed everything we would be entitled too.
Forms (advice is to keep your own paper copy), medicals (doctors lie don’t put down that they would like to see people on bad days), phone calls, letters, interviews.
Assessments are made by people the other end of the country.

Had one benefit being paid into a building account a second benefit we told by letter and phone call that her account did not exist after this went on for some weeks, I finally wrote to the manager at the next stage and pointed out that both this benefits are being paid by the same department, by different sections and how can one section is able to pay but the other cannot.
Finally got the money and back pay, had no problems since.
I found I cannot get carers allowance as I have company and state pensions, which I’m paying income tax on both.

Linda cannot cook and neither can I, we either eat out or I followed a recipe on a packet of Colman’s shepherd’s pie.
Now we order ready meals from a firm which delivers and we still eat out, down the pub on a Sunday for the carvery, on first name terms with the staff and one of the customers, we have a great laugh.

Linda does the washing, usually on the wrong number, tried getting her to change, posted instructions, all to no avail, I end up with tight clothes.

Would do the house cleaning, hovering over 2 days. About 3-4 days later it would hit her, felt tired her speech would go incoherent, then go to bed, has been 13 days, keep going to the toilet, when she did finally wake up, felt awful, usually we try to get a sleep in the afternoon.
Last time missed her parents diamond wedding anniversary party, woke up on the Sunday, the day after.
Now have a woman, comes in twice a week to clean the house which I’m paying for.

Linda goes a charity called Headway on a Monday, sometimes does cooking, or play games, listening to music, talking, gives me a rest to do what I want, might get to do a bit fishing to pass the time. The county council pay for this through us to Headway, they also pay for the taxi both ways.
Also goes to workshop, does painting, carpentry, talking, which she pays for out of her benefits, I have to take her and collect her.

Have paid for and had a stair lift fitted.

The holiday Linda was taken ill on, the Thomas Cook “Rockies and National Parks”.
We did the tour September this year, 3 days in Linda wanted to do the tour again.
It’s a tour you can’t describe to someone, they have to do themselves, to find, Found a “Cold Shivers Point”, on the last day.
The holiday was not without its moments, woman with a baby in a pushchair, this being in Denver, Colorado, asked me for directions, I suggested she ask the policeman, creeping behind her back, her reply” I have already asked him and he doesn’t know either”, had to explain that we are tourists, wife had a wardrobe malfunction, suddenly announced “I don’t have enough clothes”, seems she took them down the charity shop, the day before we fly to America, had to work around that one.
Linda lost her balance outside the Hilton hotel in Salt Lake City, she just laughed.
I opened the drawer in our hotel Durango, Co, and found a knife; Linda went into panic mode and was working herself up, “What would have happened if a child had found it, etc.
Handed knife in at reception, reckon it was bikers, reported it to the tour guide, she reported it to the owners they when’d ballistic, cleaners were going to get a rocket.
Owners reckon that as it is hunting season a hunter could have left it.
Linda was having a wheelchair at the airports, both ways as she cannot walk very well, on the way home at Denver, we given a very strong hint that the wheelchair attendant, expected to be tipped, as we had not tipped on leaving the airport, we didn’t, another member, Frank, in our party, who was also using a wheelchair, said this the worse airport he has used that do this, done the tour, about 4 times, been to Canada and around America, on tours, Frank is 95 years old, puts us to shame.

Can say the most hurt full things, shortly afterwards she’s all apologetic.

At the moment we are marking time, awaiting for assessment on benefits, Social Services to take a more active role, than they are doing, see them for 3 months then they disappear, do not get any returned phone calls.

For more information see this site,

http://www.encephalitis.info/

Baiting Guru Joined: 27 Mar 2011 Posts: 21158

I'm not even sure how to reply to this. My heart goes out to you and yours!

Baiting Guru Joined: 31 Jan 2007 Posts: 12237

next victim wrote:

I'm not even sure how to reply to this

Nor do I. Best wishes to Linda and you Fo. I'm not sure that there is, but if there is anything I can do, shoot me a PM.

Posted: Sat Oct 22, 2011 2:57 am

Wow, I'm really sorry to hear this, Fo'andles. What a terrible thing to happen. Now I understand why you need that board.
Best wishes to you and Linda. I wish that I lived close to you two and could bring over some meals and help out.

Baiting Guru Joined: 10 Oct 2003 Posts: 4747

I am really sorry to hear about, this. It’s really tragic, I wish you the best.

Posted: Sat Oct 22, 2011 8:20 am

It's obvious that you love Linda very much Fo'andles.
I hope the family recognise your dedication.
You must be shattered most of the time. Sad

Posted: Sat Oct 22, 2011 10:13 am

The most important thing for Linda is that she has YOU. I also offer all my best wishes to you and your family.

Posted: Sat Oct 22, 2011 8:13 pm

My very best wishes to you and Linda, Fo. I hope together you can find a positive way forward.

I also hope social pull their finger out, and give you some much needed support. x

Posted: Sat Oct 22, 2011 11:01 pm

Fo',

Thank you for sharing. You are an inspiration and a wonderful person.

It is not easy dealing with a chronic condition. What you wrote brought tears of joy to my eyes. Joy that you are helping Linda through all of this and you are able to travel some. Do find support for yourself too. It is important.

My very best to you!

Posted: Sun Oct 23, 2011 12:41 am

My prayers and thoughts are with you and Linda. You are being a wonderful advocate for Linda as you travel through *wonderful* world of a health care system. Take time also for yourself to renew yourself so you can be there for Linda.

Posted: Sun Oct 23, 2011 2:19 pm

Good luck with everything Fo'andles, you and Linda are in our thoughts here too!!

Posted: Sun Oct 23, 2011 7:14 pm

This is the kind of story that keeps my faith in mankind alive. Linda is very lucky to have you by her side. Best wishes to the two of you, and thank you for sharing this.

Posted: Mon Oct 24, 2011 1:46 am

Lots of hugs and best wishes Fo'andles and to your wife. If I was any closer, I would come over and lend a hand too even though I'm not very good at cooking but could manage some of the housework.

Posted: Mon Oct 24, 2011 7:31 am

Thank you everyone for all your kind thoughts, they mean a lot to both of us.

Reminded last night how very careful you have to be in telling anything to Linda, son phoned last night and what he told Linda, had up the stairs and talking through the bathroom door. "Both moving to Denmark, fed up with it here, going in February".

Contacted our son later, turns out daughter-in-law, fed up with her job, has found a new job with a danish company, building wind turbines, needs to be living in Denmark, a job opening not to be missed, according to the son.

Daughter-in-law has a doctorate in engineering, she is chinese, as they make everything else, why not in-laws. Laughing

Posted: Mon Oct 24, 2011 2:10 pm

Fo' It's good to hear you and the Mrs. getting out and about! Healthcare seems to be a misnomer doesn't it.
You two are always in my thoughts. I would really like to know what air line the wheelchairman works for (or if it's the airport) so I may quietly write an email expressing dis-statisfaction with the person's conduct. Never have I heard of such a person nudging for a tip (shouldn't get one anyway, the law demands accessibility for all). PM me so I can't get busy on this. Twisted Evil

Posted: Tue Oct 25, 2011 1:11 am

This gets worse.

Linda was rushed into hospital this evening, at 19.30 on Monday 24th October, turns out she had a stroke, takes after her dad.

They had carried out some scans and they were clear, there had been no bleeding into the brain.

Had to wait until 00.30 before they would admit Linda to the stroke unit, when a bed became available.

It is very eerie walking through a closed hospital at 01.00 in the morning.

When i got home found the street lights had been switched off, due to the council cuts, only light that was on, is the one, outside our house and that is on our property. Laughing

Posted: Tue Oct 25, 2011 3:37 am

I'm so sorry to hear about Linda's further health problems. I hope that you have some family and friends nearby to help support you through this right now.

Posted: Tue Oct 25, 2011 3:47 am

Badger, in the larger airports there are people who work for tips doing assistance. I don't know for sure they are not employed. I just know that I paid out a lot of money to them for helping with a wheelchair.

I found that if you tell the airline you need assistance, they provide it for no cost, including a cart in certain airports.

The people who work for tips are like the people who curb check your luggage (if they still allow that). It is a rip off, but you don't know up front they expect a tip.

It has been a while for me to travel by air though so things may be different.

Posted: Wed Oct 26, 2011 10:34 pm

Linda has now arrivied in the Critical Care Unit, a stroke has been ruled out, she also had an infection with a temperature which reached 40c (104f).

Now could be epilepsy, had a seizure whilst our son and i was there, i was holding Linda's hand, son looked shocked, i had to deal with them at work.
Attack did not last long. Now on medication for epilepsy.

It looks very hopeful if that is the cause, checking up, there are many types of seizure's, not all are bad, some are mild.

And Social Services have at last stuck their head above the parapet. YIPPEE Laughing

Posted: Thu Oct 27, 2011 12:20 am

Thanks for the update, Fo'andles.
I'm really sorry that you and Linda are going through this right now.

Posted: Thu Oct 27, 2011 7:41 am

My thoughts are with you, Linda and your family. I don't even know what to write reading how faithful and supportive you are.

and this made my eyes wet

Posted: Mon Oct 31, 2011 6:35 am

Linda's getting better, that is after shouting and swearing at her dad and telling him where to go, also at the nurses.

Nurses tried to feed her solid food from Friday, but she shouted the place down, they are not allowed to feed her once she says no, ( thinks it could be taken as force feeding, etc.)
I have been feeding her since friday, yesterday she eat the lot.

Had Linda's Neurologist phone me at home yesterday(Sunday) and wanted me to go through everything again from June 2009, did apologize for asking.

Told that the shouting swearing that Linda was doing, she did not do this in 2009. niether did she have, stroke, epilepsy or high temperature.

He thinks that it is Encephalitis and they might not have cleared it up in 2009.

Her scans had come back clear, but her MRI scan came back showing some inflammation on her brain.

Did tell him that we both had flu jabs on the 11th of October, inside the 14 days that Encephaitis develops, that was after he said they were at a loss to how it had come back, or why.

Linda will be moved to a ward, either today or tomorrow, same ward she was in in 2009.

Posted: Mon Oct 31, 2011 12:25 pm

Fo, sorry to hear you've been going through all this. It's good that Linda's improving and able to eat now, thanks to your help. Hopefully the docs will sort it out properly this time. Sending you both my best wishes.

Posted: Mon Oct 31, 2011 11:24 pm

Saw Linda tonight, fast asleep when i arrivied, staff nurse was going to make her more comfortable, so i went away and had something to eat.

On my return, Linda was now awake had eaten a sandwich, mind you she was yawning, but i can now talk with her and her speech is clear, they are still giving her anti-biotics.

Posted: Thu Nov 03, 2011 10:38 am

Just to let you know, Linda now in a ward, awake but still a bit confused.

Seen the Neurologist, (he looks in his mid 30s, if anyone's intrested Smile

)
he does not think they will find anything, which is causing Linda's encephalitis, in 60% of the cases they can't.

Also going to try and find a happy medium in controlling her seizures.

This could have been a blessing in disguise, Linda's sometimes not been feeling well, gone to bed and got up next day right as rain, these could have been mild seizures.

You know when Linda's well, can now eat without help and is throwing out her orders, so this hen-pecked husband will now finish here.

We both would like to thank all the members who have not only posted here, but in the previous thread and sent pm's with their kind thoughts and wishes.

I was nagged in a pm to do updates on Linda's progress. (Thats my excuse and i'm sticking to it) Laughing

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