A Journey through the eyes of a carer

My name is Jacqui and I have been asked to share my experience of supporting my best friend through the journey from diagnosis to recovery from Guillain-Barre syndrome. Before you begin to read this account, two things need to be made crystal clear. Firstly, I am ‘as mad as a hatter’, a born optimist and always see life as ‘a glass half full’. Secondly, I love music and always associate events and moments in time with lines from famous songs. So, I challenge you to identify all the songs referred to in this reminiscence!

“Where do I begin to tell the story?” Well 7 years ago my life was quite normal (normal for me any way!). I had a job that required me to create 26 hours in every day – but they were “Happy Days”. I loved my job and I really loved my social life with my best friend Doris. Doris had unlimited energy and she did everything at double speed. I frequently found myself ‘Power Walking’ – well “Keep on Running, Running From Now On” just to keep up with her!

In fact I nicknamed her as Speedy Gonzales! The winter of 2009 was colder than normal, but Doris and I still faced “Stormy Weather” to take my Boxer dogs on long walks past “Mountain High and River Deep”. The truth was that my dogs followed ‘Auntie Doris’ like the Pied Piper – I just trailed behind! I was constantly in awe of Doris’s energy and the way she “Talked with the Animals” (the truth is she prefers dogs, cats, degus, and parrots etc. to humans – she often says ‘animals give love that is unconditional’). All the indications were that it was going to be a “White, White Christmas”. Little did I know it was going to be a “Blue, Blue, Blue Christmas” before very long.

As usual, her daughter and granddaughters came up from Dorset for Christmas and we all had a great time, including time with her other daughter, son-inlaw and grown up grandsons. I did, however, notice that Doris was very tired and frequently began to complain about feeling ill and having tingling in her mouth and feet. After the family had all gone home, the symptoms became worse and on 31 December she finally agreed to ring the doctors. Well what a waste of time. She could not get an appointment and even worse the receptionist decided to advise ‘It is just a chill – take paracetamol and keep warm’. When Doris pointed out she has an allergic reaction to paracetamol and they make her sick, the receptionist replied ‘Well never mind – you will just have to be sick’. (Needless to say, when Doris ultimately ended up in hospital, I started the “Battle of Jericho” and the “Walls Came Tumbling Down”. I loudly and publicly tore a strip off the receptionist, practice manager and senior doctor at the practice and Doris eventually received an unconditional apology and assurances that new protocol would be put in place to prevent receptionists giving medical advice). Over the next few days her symptoms got worse. After the asinine response from the Surgery, she refused to contact the practice again. Eventually, during the following weekend, I dragged her to the Emergency Doctors and she saw a recently qualified doctor who examined her and commented ‘If it wasn’t so rare, I would suspect you could have Guillain- Barré syndrome. If the symptoms persist or get worse you must go to Accident and Emergency’. Less than 48 hours later the symptoms were significantly worse and I ended up taking her to A&E. After 6 hours in A&E they decided she had a Renal Infection, sent her home with medication and told her to contact her GP for an appointment within the next 2 days.

The next day I went off to work and rang Doris every couple of hours to check how she was and whether she had got an appointment at the doctors. She had managed to get an appointment, but not for 2 days. I visited that evening and became very concerned; she looked really poorly and was very unsteady on her feet. Against my better judgement, I went to work the next morning and just hoped she was going to be OK until I could take her to the doctors. Oh boy! Did I have a day to remember!! Around 3.00pm I got a phone call from Doris’s doctor who was actually at Doris’s house, her legs had lost all feeling and the doctor had found her crawling to answer the door when she arrived! The doctor had arranged admission to hospital but it was going to be up to 3 hours before an ambulance could attend. The doctor asked if I could come home and take her to the hospital as it would be quicker than waiting for the ambulance. I picked up my briefcase and was “Homeward Bound” within 5 minutes. I got to Doris’s house and the doctor helped me get Doris into the car – I set off and the doctor rang the hospital to confirm we were on our way. We were met at A&E and Doris was quickly transferred into the Observation Ward. After 4 hours I was told she was settled on the ward and I should go home and ring in the morning. It was now 9.00pm, so I went home and contacted Doris’s eldest daughter (who lives 8 miles away) and agreed we would ring the hospital the next morning
then meet at visiting time the next evening. The next morning I rang and was told she had ‘a comfortable night’ and they would have carried out tests to identify what was going on by visiting time that evening. Little did I know that was “Castles in the Sky”.

At around 11.00am that morning I received a phone call from Doris’s daughter asking me to get to the hospital as quick as possible. Doris had deteriorated rapidly and they were going to perform a tracheotomy. However, Doris being Doris, she had refused to let them perform the procedure till she had spoken to us both. I picked up my car keys and flew! It is true to say I was driving close to the legal speed limits but was clearly “Flying without Wings”. Her daughter and I arrived within minutes of each other to discover she was paralysed up to her mouth, but refused intubation until she had seen us both. Listening to my best friend (and partner in crime) trying to tell us both “Time to say Goodbye” was heart-breaking – but I needed to be strong for her daughter. Once that ordeal was completed,
Doris was taken into Theatre and we sat and waited for news. Following the operation, the surgeon came to talk to us and told us it was definitely Guillain‑Barré syndrome and that because of Doris’s age (66) and a history of COPD, recovery was going to be very slow and it was unlikely she would ever live independently again. Realistic as this may have been – they underestimated the “I Get knocked Down and I Get Up Again” attitude that is Doris.

I had previously seen people in Intensive Care so warned Doris’s daughter to expect her mum to look ‘rough’ – OMG! I was not prepared for the scene before me – the lighting in the side room was dimmed and there were numerous tubes and machines attached to Doris. It was a cross between “Ground Control to Major Tom” and “I’m an Alien, I’m a Legal Alien”. Having recovered from the initial shock, her daughter and I settled into a pattern that would carry on when we visited over the next 7 days. Doris drifted in and out of consciousness and we sat and shared funny stories about the person we both knew was the real Doris. There were serious concerns about Doris’s lung function and the complication of a chest infection. The ward staff were really good. They constantly monitored the tracheotomy and cleared blockages, cared for her with compassion and reassured us both she was going to improve soon. They were right – within 7 days she had improved enough to move to the Intensive Care Ward and was much more alert. In fact, she started trying to talk and this presented a situation that verged on a comedy routine. Her mouth didn’t move properly and the tracheotomy meant there was no sound! Doris got really cross with us because we could not understand her – the solution was akin to a game of ‘Charades’. All I could hear in my head was “Give Me a Sign. Hit Me Babe One More Time”.

During the next couple of weeks the chest infection was improving, but did cause repeated blockages in the tracheotomy, which caused Doris considerable distress and fear (she still couldn’t speak and therefore became terrified she could not let them know when it got blocked). To address this, staff made a makeshift rattle, using a small sample bottle and bits of plastic, and fastened it to Doris’s wrist. All she had to do was shake the rattle if she needed help. Well – it was a roaring success and whenever she rattled, it was reminiscent of the Dowager at Downtown Abbey! At this point, two significant things happened. Firstly, following a period of gradual independent breathing, the tracheotomy was finally removed and secondly, they found Doris had contacted MRSA. The treatment was a regular application of a body wash – the only problem was that she had an allergic reaction and her skin went bright red. She looked sunburnt and all I could think was “Last Year We Went to Sunny Spain”. However, she was now off tube feeding and eating real food. The only problem was that the liquidised food served at mealtimes was ‘gross’ – I decided the best answer was to make rice puddings, soups and liquidised stews at home and bring them in each day in a food thermos.

The skin reaction subsided and the next 2 weeks of the physiotherapy sessions finally gave Doris the strength to start walking. I would like to say it was “Wheels on Fire” but initially it was more “Only 24hrs from Tulsa” – but it was independent mobility! Within a week or so she finally transferred to the High Dependency Unit where she continued to make slow but steady progress and very quickly moved to the Rehabilitation Ward. She had turned a corner and it was a case of “I Can See the Green, Green, Grass of Home”. It was now the end of April and it was all systems go for a weekend ‘pass’, prior to planning discharge. There was a suspicion she had picked up an e-coli infection, but the hospital decided it was clear and Doris came to stay with me for her first weekend out of hospital in over 4 months. Well, 24 hours later she was running a fever and I had to take her back. I was gutted – but these setbacks are to be expected. I went home and was asleep before my head hit the pillow. Some hours later the phone rang and I “Woke up One Morning Half Asleep. With All My Blankets In A Heap”. It was 3.00am and Doris wanted me to take her an electric blanket because she was freezing. I thought she was ‘off her trolley’ but the nurse came on the phone and said it was OK, the e-coli infection was causing the shivers and gave me instructions on how to get through the hospital to the ward. To fully understand this fiasco you need to know two things. Firstly I am terrified of the dark and secondly, to get to the ward out of hours, you have to go via the morgue! With electric blanket and Imodium in hand it was like “The Monster Mash” but I completed my mission!

The infection cleared and two weeks later Doris was discharged to my care (much to the horror of Doris’s daughter – she believed I was too irresponsible to care for her, but I have a bungalow, so it was a ‘no brainer’). Doris stayed with me for the next 3 months while she recovered her strength. There were times she became very upset that she was not making the progress. But she still fought and “The Higher You Build Your Barriers, The Taller I Become” reflects her determination. Between hospital appointments and clinics she began to make rapid progress and had a phased return to her own house. When I finally moved her back home I knew it was important to let her have her space and independence but couldn’t help saying “You Just Call Out My Name and I’ll be There”. It was so hard to walk away – but it was the right time. The first time she got behind the wheel of her car and actually drove again, I knew she had
won the battle.

Over the last 6 years, she has gone from strength to strength. As expected, there have been many frustrations and hard times but throughout she “Ate It Up and Spat It Out”. She still has some weakness in her legs (she sometimes wobbles when walking and often refers to it as doing the ‘Viennese Waltz’) but I have my best friend back. Her wicked humour and mission to control my ‘sweet tooth’ is as sharp as ever – and I couldn’t be happier. I am no longer the Carer – now I just care deeply. I watch her take off in Kermit (her new yellow Nissan Juke) and I feel so proud of how far she has come.

I hope this article is helpful for those Carers who have “Only Just Begun” the journey and those who are still on the “Long and Winding Road” to seeing their loved one beat Guillain-Barré syndrome. For me it has been a privilege to take that journey with Doris. My thanks go to all the members of Lancashire and Cumbria Branch at Bilsborrow, their friendship has been invaluable.

Jacqui Hughes

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