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'The dementia steadily progressed and it became so difficult' - Sue's Story

Baz and I – Sue’s Reflections & Story

My husband Baz was diagnosed with early onset Alzheimer’s at the age of 61. Looking back, symptoms had been there for at about  2 years. We put this down to stress at work. He was head of department in a comprehensive school.  He started forgetting things losing his class keys, even students course work, became very irritable, any disturbance to his routine would stress him, he became quite inflexible.

Initially we thought that reducing his working week to 4 days would ease his stress but this didn’t make any difference so the following year he reduced his hours again to 3 days. It was around this time that I met a student’s mother out socially and she sowed the initial seeds of Alzheimer’s when she said her son had joked about Baz having a terrible memory.

We have 2 grown up children who both have children and live some distance away. At  Baz’s 60th birthday party they both said Dad has definitely got Alzheimer’s. The next hurdle was getting him to broach his memory problems with our GP. Baz would delight in me losing my car keys, glasses etc and say everybody did it, which is true, but it was at a different level with Baz. It took another year to get him to the GP.  I managed this on the pretext of reading an article about statins affecting the memory. Baz had been prescribed statins after his brother suffered a heart attack. The GP referred him to the memory clinic, diagnosis took a few months.  We were finally given a diagnosis. It was a case of you’ve got alzheimers. We were given a large brown envelope with a load of factsheets in it, a prescription for donapezil hydrochloride, he was monitored for blood pressure over the next month whilst the drugs were slowly increased to maximum  and then told  he would be seen again in a year.  Baz said that they didn’t know what they were talking about and what a waste of time. He chose to ignore his diagnosis and only mentioned it again on one or two occasions believing he only had a mild dose of Alzheimers, a bit like you would class a cold really

Baz has always been very active and a keen motor sports fan, he used to do car rallying, moto cross, skiing, windsurfing, mountain biking.  He loved formula 1 motor racing and over the last few years was an avid follower. As a surprise for his birthday in 2012 I took him to the Monaco grandprix, his dementia was becoming more apparent but generally people wouldn’t notice apart from the odd thing he said. We went on a water sports holiday the following year , it was getting more obvious and irritability could be a problem, the group we went with understood though. We also went on several visits to Spain , the last one 2 years ago. Liverpool airport staff are really good I must say but Aeroplane toilets are not easy!

Baz went through a period of buying lots of very expensive things, especially designer clothes, cameras, watches (he could no longer tell the time) and even a mercedes convertible although he already had a mini cooper.  The car I helped him with,  although I knew he wouldn’t be able to drive it for much longer, but I just wanted to try and keep him happy, needless to say he pranged it twice into the gate post. He was losing spatial awareness and judgement.

Baz has some very good friends who continued to take him cycling every week, I learnt how to maintain his bike, get him dressed in the full lycra gear, adjust helmet, help him with his click in pedal shoes, get him to the meeting point and watch him pedal off, his friends made sure there was someone leading and someone tailing. This continued till December 2017,when he came off his bike and suffered a few cuts and bruises.

He was extremely fit but his spatial awareness was now a real problem so his cycling days were over he wasn’t safe hadn’t been for some time really.

We duly attended the memory clinic annually, where he was asked a lot of questions he couldn’t answer and came away totally demoralised.  I had asked for a referral to the younger persons service on more than one occasion but this never happened.  Although I met the CPN for younger people at a local conference but by this time Baz was 65 and passed the cut off point for that service.  She did invite us to some activities they organised  and that was really good. Wish we had been referred when he was first diagnosed. He missed out on a lot of possible support.

By 2015 life was getting more difficult and Baz had a further impending appointment to the memory clinic I  requested a CPN home visit, the response was to discharge him from the service.  I began to think I must be hopeless and Baz wasn’t “bad” enough yet for any services, it must be me who couldn’t cope.  By now his irritability was mainly directed at me . He wanted constant attention and friend would take him out for coffee and cake, he was fine with constant one to one attention.  Food was becoming a problem, he didn’t like that “crap” I made. I tried to make things I knew he liked. We went to the local pub twice a week on average to eat and also to a local restaurant in town, he always had the same thing and both places got to know him and his “strops” as I called them.  They were very good with him. I noted all the public/shop toilets in town that have a separate disabled loo that I can go into with him to help.

The whole driving thing and dealing with the DVLA was a nightmare. Again I told fibs and said his licence hadn’t been reissued, it was 10 months since we had reapplied, I did really think it was not being issued.  Didn’t it just pop through the letter box after I had managed to  stop him driving for the previous  2 months. He couldn’t read by then,  so didn’t realise what it was. It did lead to some paranoia about the police though as he believed they were behind it all. It also left me with two cars to sell .

Between 2015 and 2017 we had one very short review by the GP, it’s not possible to sit there and contradict the things a person with dementia is saying,  so GP thought he was fine, and reluctantly signed his council tax reduction form and charged me £15 for doing so!

Life was steadily getting more difficult. I had to call the fire brigade to break down the door when he locked himself in the toilet and couldn’t work out how to get out. Iirritability and aggression increased, kicking doors, storming off, verbally abusive. He became more paranoid I couldn’t use the telephone, if it rang he always answered it, often said I wasn’t in. When friends and family rang he would listen in on another phone so I always said I was fine to everyone.  I referred myself for a carers assessment January 2017, again wish I had done it earlier. As a result Crossroads sitting service started for 2 hour twice a week. I didn’t even mention it to Baz I just let it happen. What an amazing lady, she came in and talked to Baz immediately about the love of his life Formula 1 and cars.  She took him out to the pub, the surf centre, art galleries. Baz loved being with her.

Dementia steadily progressed and it became  so difficult particularly personal care I needed more help with it all so I requested a CPN visit but was told that there was a strict criteria and I would have to take him to the GP for a referral. I then had the best melt down ever to good effect. A CPN rang me within 20 minutes followed by a social worker. Things really looked up then, I so wish I had flipped sooner. Baz was  given a place at a fantastic local authority day centre this was increased to 2 days for when our children were coming to relieve me for a few days and give me some respite.  A consultant came and reviewed his medication at home and made some changes to help manage his paranoia.

His paranoia made him believe there was a nasty people in the house, we couldn’t watch television as he thought the characters were in the house, eg Phelan from Coronation St.

He thought I had been responsible for the Manchester bombing tragedy and I was a murderer. It was awful to watch his terror. So Television was a no longer switched on. We did a lot of colouring together, but he needed more and more help to hold pencils and draw the series of dots he could manage. An incident occurred when he knocked me over which was a bit of a turning point for me. He has always been a very gentle person.  Our children came and gave me another 4 night break while they looked after him.  They both felt it was time he went into full time care.

I spent all of my free time from Baz searching for a suitable care home, a day spent in a local care home was a disaster they couldn’t manage him. Nursing home care was agreed to be appropriate by CPN and SW.  I found one not too far away that was purpose built glowing reports etc and he was admitted there, but his aggression proved too much and I was given notice to remove him. In spite of crisis meetings with the Health Board and my saying he needed one to one care, nothing was done so Family (our children took holiday from work) and friends provided 1 to 1 care in an attempt to avert further incidents, but this was not sustainable, although no incidents occurred whilst he had the one to one care. He  was subsequently sectioned under the MHA.  As there were no beds available in Wales he was transferred to an NHS specialist centre some 80 miles away in England.  Although travelling for me was tiring as I drove 160 miles every other day to see him, it was a superb place, the whole team were really good, they not only looked after Baz but me also. They kept me fully informed, discussed everything with me, questioned me in detail about him as a person, likes dislikes, interest etc. He was admitted in September 2017 and discharged January2018.

The search for a suitable nursing home again became my big worry, let alone one with a vacancy. Nowhere seemed to be suitable for a younger active person with dementia. I was advised that home was not a realistic option. He was now a delayed transfer of care (bed blocker) I know they can ultimately transfer the patient to any EMI nursing home with a vacancy.  I felt quite stressed by this so I put his name down for two care homes, neither had a vacancy, only one of which was suitable.  Luckily the nursing home I preferred came up with a vacancy  but again some 50 miles away from our home,  they do have a mix of ages, with residents in small units which are  all interconnected so all the staff know all the residents. There is an attached day centre for daily activities. They have chickens and it is in beautiful grounds. It was agreed to transfer him there.

The hospital unit has a really good model of care to reduce readmission rates. There is a structured transfer, with hospital staff accompanying the patient to the nursing home, handing over in detail to the nursing home staff and helping to settle the patient in. They will then provide 24 hour advice as required, they undertake a further follow up visit 2/3 days later to review and iron out any difficulties and a further visit is made some 10 days later before final discharge from hospital care. It certainly helped with Baz,s transfer.

Baz has been at this Nursing home since January 2018. They manage him very well, he does have his moments and is still difficult with personal care,  but generally seams contented. He had a nasty chest infection a few weeks ago and lost a lot of weight, he refused food at that time he would not let anyone feed him, he does now allow staff to feed him, he has supplements, loves chocolate and all things sweet, so his weight has now stabilised.  I am very satisfied with his care. Registered nurses are always visible and available to speak to and the carers are really good with Baz.

Baz and I dance together in the day centre, he loves music and dancing, They have organised activities and guest musicians coming in.  I visited yesterday with our 4 year old granddaughter, we took her bike in the boot and she rode her bike around the beautiful grounds with her Gramps and me walking behind her in the lovely sunshine. Such a normal scene really.

To end on a positive note. I have met with the local Health Board  dementia care team manager regarding the lack of inpatient beds locally. It must cost our Local Health Board a huge amount to send our patients to England. She has told Baz’s story to local service managers which she says had some impact on them. She is planning to video Baz,s story and use it for training purposes. She also said in her e-mail to me “one thing we are taking forward as soon as I can, is the transition from hospital to nursing home care and support”

I have also attended the “Presenting to Influence Course”  run by tide (together in dementia everyday). A really good course that has helped me to take Baz’s story forward.

"Dementia steadily progressed and it became  so difficult particularly personal care I needed more help with it all so I requested a CPN visit but was told that there was a strict criteria and I would have to take him to the GP for a referral. I then had the best melt down ever to good effect. A CPN rang me within 20 minutes followed by a social worker. Things really looked up then, I so wish I had flipped sooner. "

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