Home for Christmas

The carer Lucia is going home to Romania for Christmas, so this past couple of weeks I’ve been trying to find an agency or a carer to cover for her until January.

Trafford council supply a long list of agency’s that we can use. After phoning around 20 to 30 I only found 2 agencies that covered Sale, performed hoisting, fed through peg feed and could give liquid meds. I asked both company’s to come and meet Debbie and have a chat about the care. It’s at this point that prices meant we couldn’t use them under the Trafford scheme. I went back to the council and they gave me one more name. Got them in and yehhhh they can do everything and can cover dates.

So now we are organising training and handover days between Lucia and the new

Also this week the house has gone on the market so we have fingers crossed that sells quickly. But busy tidying and and get EPC certificates done. We still don’t know where we can move to but that’s another problem for another day.

Home Alone

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Sorry this one has took so long but we are just reaching a month home and we have been so busy. We’ve been learning a lot of new medical care stuff for Debbie including the hoist and changing the water in the Balloons. That’s the balloons that keep the PEG feed in, not party balloons.

I would also say that this month has started sorting the wheat from the chaff as to assistance for Debs. We have had family members helping with decorating and dropping off food parcels. Some of Debbie’s friends who she worked with has been looking into the progression of MS and asking some sensible questions. We have 2 people fighting for us on the clinical side and I’m hoping the next 2 months will show some results for Debbie’s long term care plan. There has been some negatives with some people but I hope they come round eventually. I know it’s been holiday time.

Lucia our carer has been a trouper and has been doing 6 or 7 hours a day while only getting paid for part of her time. I still think she’s the best decision I made in the last 12 months. I’m not sure I will ever be able to repay her for her hard work and kindness. We are going to lose her for a month from December to January as she is going home to Romania for Christmas, new year and her birthday. I’ve had started looking for a replacement or an agama and hope to have in place this next week.

We are putting the house on the market next week as we have to move to rented accommodation. So have started the process of dealing with estate agents, I don’t believe a word they say šŸ˜¦

That also means we have been looking for disabled ready properties we can move into with 3 bedrooms. I’m sure your aware this is a big ask and as we live in Trafford we can’t get a named social worker to help. I have contacted my MP but response it felt very perfunctory. So again, watch this space.

Debbie is on a high at present which drives me up the wall. I have nearly walked out twice this week but I do know it’s the bipolar and she doesn’t mean it. It’s hard though when she calls recruits against me who don’t realise about her mental condition and then I’m the big bad wolf again. I’m not sure how I can stop this happening but as long as there are ignorant people to call I will be in trouble.

I lost my new job last month as I had to care for Debbie but they were great and paid me for another month ….result

Any questions please get in touch

Sorry!

When people find out that Debbie has MS they respond in a few different ways. “I’m sorry” is the number one response, which is of course the the most obvious reply to anyone with an illness. I say this myself when someone says they are sick and I always feel that sorry is inadequate. I wish there was a magic word to express how I really felt. A word that says, that’s terrible, I wish I could help you, come here let me hug you. I think I will invent it one day.

The next comment “is there anything I can do”, “I mean anything” now this one can mean several different things. The first is They feel sorry for you and they don’t know what to say. Or it can mean they will help. Over the years I have responded to this one by asking people to help by taking Debbie out for a few hours. Now lots of people say they will do this, they arrange times they say when they will call but come the day they are busy and we never hear again. I’m not mad about this, people have busy lives and I don’t expect them to give up time but they asked. This has been friends and family over the years and I really don’t mind. It’s now too difficult for Debbie to be taken out and she can’t drink anyway.

The next is oh my mum/aunt had MS but the reason it hasn’t effected her that much is she has a positive attitude. This is the most hurtful of all the comments. They may as well say oh Debbie’s worse because she didn’t prey in the right way. Debbie was one of the most positive people that I know after being diagnosed, to say that she is worse because of attitude does infuriate me. How MS effects you is how it decides to effect you. It’s not magic wands etc. Being healthy can reduce symptoms but if it decides to fuck you …your fucked.

Born Again Christian

So last week after 2 Months in the big house Debbie came home. I was a bit worried because of all the changes that we were going to have to deal with following the new symptoms and challenges. I couldn’t get anyone from the medical teams to talk to me until Debbie was released from the Hospitial into the District, so the issues seemed greater. The old saying of “choose your battles” is my no 1 mantra at present. As if I kicked off about every mistake I wouldn’t have any time left to even sleep. Debs came out Thursday and the district nurses were supposed to come for the first visit on Friday but I had a call in the morning to say it was the nurses day off. Why this same nurse booked the appointment with me I shall never know. She turned up 3 days later and I had to just bite my tongue. She seems like a good nurse and I know they are under resourced but when they turn up late, cancel appointments, don’t have any notes, don’t know what is wrong with Debbie, it’s very hard not to get annoyed…… But I didn’t show it.

This week I met my possible saviour “Joyce Christian”. She has only so far filled out a form for us but her understanding of Debbie’s problems and the NHS “challenges” has been unbelievable. It’s 9 years that we have been fighting MS, the NHS, doctors etc and the main thing I have been looking for is a joined up plan for the care of Debbie. Social services do pay for a carers hours but it’s limited to what they can do and has been for a while. Joyce is the first person that has appeared to understand our problems and possibly offer a long term plan. I don’t believe in God never will but I’m now a born again Christian a “Joyce Christian”.

Debbie’s birthday yesterday and with the coming home issues, money and continence we have moved her birthday to weekend of the 1st and 2nd of November. We should be a little more in control by then.

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What the F**k is MS

A few people have asked me what is MS. When I first heard it it I thought is that the yuppie disease? Nope that’s ME and I still get asked that a lot.

Well The S Is for sclerosis which literally means scars. So MS is lots of scars. The scars are on the nerves in the brain and the top of the spine.

The scars are caused by the body’s own defences attacking the nerves. So the cells that are designed to destroy invading virus and bacteria turn on it’s own body and damage the nerves.

The nerves are covered in a protective sheath called Myelin. It works like the plastic on wire and helps the signals travel down the nerves and stops them shorting. This allows you to walk, swallow, think and see, plus all the other things nerves do.

MS strips the myelin off the nerve leaving it open and so the signals don’t travel down the nerves properly. The symptoms of this can be, temporary blindness, can’t walk, swallowing problems, cognitive issues etc etc.

There are a few drugs available to help reduce the effect of the symptoms but you have to start taking them soon after a new attack. Debs doesn’t have new damage so can’t have any MS drugs.

The body naturally tries to repair the damage and does a very good job. After a few years though it slows down and then stops. They are working on drugs that keep this mechanism going into old age. Hopefully reducing most of the effects of MS.

There are some precursors to MS including Glandular Fever, some DNA markers and vitamin D absorption as a child. The further from the equator you were brought up the more likely you are of getting it. The only place that bucks this trend in Europe is Norway because of the amount of fresh fish they eat makes up for the lack of sunshine.

I have tried to keep this simple, If you want to know any more give me a shout.

Life Before MS

On the theme of being more happy around MS, I thought I would say a little about Debs before MS got to her.

When I met Debbie 15 years ago she was a very different woman to the one I see now every day. Debbie was a PA in the Musicians Union in Manchester and also sang in a covers bands all over the UK. Some of the bands were general weddings

The big group Debbie got sang with was “Baby Love” a Diana Ross and the supremes cover band. They were amazing, a great light show with smoke machines and a stunning sound system. They performed in some bloody rough clubs such as Brannigans and Chicago rock

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Debbie loved singing in the bands and for a year or so even pulled together her own band with Peter, Rico and others. They rehearsed at Moolah studios in Stockport and Colin and Norm who owned it became good friends.

MS took its effect on Debbie both with her voice and also just the level of enthusiasm she had for the work.

Finding Mrs Doubtfire

Last night I was with friends and they were all telling me that they read my blog and I should keep it up. One friend Clare Collins says “you could do with a happy one” I have racked my brains all night and day and I think I found a happy story.

At christmas 2013 things were pretty bad. The mortgage company had put payments back to full rate. We had no money. I had a lot of issues with certain members of the family not helping or assisting with Debbie or even just taking her out for the day. They had become violent when I had asked for their help. I was ready to give up on everything. For some weird reason I didn’t and thought I would cut off from those people and try and come up with my own great plan.

We had been using an “Care” agency call Abbey for about a year and they had caused us loads of problems. The main one was they kept sending in new members of staff all the time. These people wouldn’t have any understanding of Debs situation her diet or medication. Also they wouldn’t know alarm codes. I had said when we took them on that it wouldn’t be good for Debbie to wake up to someone new stood over her.

The final straw came when I was shooting a wedding one Saturday night and I got a call from ADT alarms that the alarm on the house had gone off. I knew Debbie was on her own so I called her to find out what had happened. There was no answer but because I knew the time was about right for a carer call I telephoned Abbey they told me it couldn’t be one of the carers as they had the number. I said but your always setting it off not everyone has the number. She argued but I had to set off home to sort.

After 20 mins Debbie called me back very stressed. The carer had gone into the house and set the Alarm off didn’t know the code and couldn’t get it. Debbie was asleep and the alarm was going in the dark, this big Polish girl was stood over Debbie and scared her to death. Debs screamed and I think scared them both. The carer then sorted the alarm. To add insult to injury when Debbie asked for an omelette she said “I don’t do English food” (to be said in your best polish Accent). Since when is an omelette English. I canceled Abbey that night, in response to the problem they were abusive and threatening.

Don’t worry Clare Collins it gets better.

In the following week a friend of mine called and though I don’t believe in the occult she had been telling me I had to go see a “white witch” in Yorkshire that was “amazing” and will tell your future.

I did go to see her and without getting into too much detail she did tell me a great deal about my current situation without me having to saying a word. She also brought up the care and said I needed to recruit “Mrs Doubtfire” from the 90s movie. I knew what she meant and I had this in mind when I created the plan.

Plan ran like this

1, Cut off from stupid family

2, Place advert for carer

3, Get Job and return to work.

Step 1 easy and done, step 2 I placed an advert in Gumtree for an au pair style live in carer to look after Debbie. We had a lot of responses including a Turkish girl that was going to leave her 3 year old child to come to UK, Nigerian girl who turned up 2 hours late for the interview and didn’t seem to understand care. The second time we ran the advert we had an response from a woman in London who’s mother was in Romania and looking for work in the UK. She had been a carer in Italy but was available now. We had a Skype interview with Debbie and Me on one laptop, Lucia in Romania and her Daughter in London. The minute I saw Lucia I knew it was right, she looked like Mrs Doubtfire, and after talking I knew her heart was in the right place. She started with us in Feb 2014 and was the only reason I could return to work. She has been kind and helpful with Debbie’s care. We have had all sorts of issues getting Lucia in place but she had been the single best reason for putting my plan in place in the first place. Long live Lucia

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Off the Cliff

About 2 months ago I started a new job this was part of my great plan. Interview and place a live in carer and return to work. We could keep the house and Debbie would be cared for.

Carer in place I started new job in IT project management. It was work from home and IT in major retail which used to be my specialist subject.

I started the new job about 2 months ago and day one Debbie’s mood changed severely to an ecstatic high.

Debbie has Bipolar as well as MS and the 2 effect each other a lot. When she’s on a high she’s going to be Prime Minister iand she will change the world. When she’s on a low she doesn’t want to leave the house. On lows she sits and watches paint dry. Lows are terrible for Debbie and she has talked of taking her own life during these periods. Highs are great for her but her behaviour is inappropriate. She puts herself at risk and this can be a worry if I have to leave her. This sounds terrible but lows are easier for me to deal with. She’s home safe and won’t leave or put herself in difficult situations.

So day one of new job Debbie is on a high, this is difficult because I can’t be there for her and she is running rings round the carer Lucia. Well wheeling round in her in her wheelchair. I speak to Debs a few times but it’s awkward when in an office talking to someone who is a little over the top. Conversations become a little one sided. It’s difficult in a new job normally but with this distraction it does pile on the stress, but we smile and push through anyway.

We managed a month with Debbie on a high and I hoped that things would calm down. Then one weekend Debbie fell off a cliff, all her symptoms suddenly got worse. That included swallowing which effects eating and drinking, then mobility and bladder problems. Debbie went into Trafford General for all these issues but mainly to have an NG (nasal gastric) tube fitted through her nose. Debbie had stopped drinking eating or taking meds so we needed a mechanism to do this. We had been told it needed to be a PEG feed fitted to Debs stomach but we weren’t going to get that in time so she needed an NG feed. An NG feed is passed up the nose and you have to swallow it again to get it past the throat. Debbie had this done but it only lasts for 6 weeks. Both myself and Lucia were trained in how to set up the feed system for Debbie and we seemed ready to go home.

My Daughter Lauren was getting married on the Friday so we pushed the medical staff for Debs to be released on the Friday morning. They would not have done this normally but then Debbie would have killed me if she didn’t make it. She left hospitial with the NG tube fitted. And we had a fantastic wedding.

The weekend following the wedding was a little more chaotic and with all the problems I had to call an ambulance on the Monday morning to take Debbie to Hospitial. I had to choose between the MRI or Wythenshaw. I choose the MRI I’m not sure I should have. My thinking was that we might get neurological specialist at the MRI, but no all the neurologists are at Salford and after 6 weeks Debbie with MS has still not seen a neurologist. I am dismayed.

I will post more details soon

The Diagnoses of MS (Multiple Sclerosis)

When Debbie was first diagnosed with MS we had already had to deal with 8 years of miss diagnoses. The main thing her GP said was that Debbie had slipped disks. We pushed to get treatments but everything took so long 18 months her 12 months there. After 8 years of trying to get help a a woman who was giving Debbie massage for her slipped disk said to her ” You know what I’m doing is not helping, I’m not charging you today and you need to go back to your GP and insist on Neurological tests.” This woman knew then what she thought Debbie had. I wish she had told me as I would have sorted insurance better at that point.

Now I was busy with my job then and I paid some interest in a very male “let’s get this fixed” way but I didn’t pay much attention to that word “neurological” or what it meant.

Debbie went to see her GP who will remain nameless but she was the senior Doctor at a practice in Sale. She asked for Neurological tests and her GP dismissed her request saying I can’t see it being anything like that. Debbie insisted on the test in the face of opposition from her doctor which I think can be very hard. Someone who appears to be in a position of power telling you not to do something that you know nothing about.

Debbie went to Wythenshaw to have an MRI scan and to perform the EPT or checkerboard test http://www.m.webmd.com/multiple-sclerosis/evoked-potential-test-for-multiple-sclerosis

We waited for results but it didn’t seem like a big event. I had told friends that I thought they were going to show MRI scan of Debbies back and point out the cracks wear or damage in the bones and we could then try and get it fixed, everything seemed simple.

Feb 2008 we went to see “Dr Dick” (no not made up) for the results of the tests. I was heading to London that night on business so I had my bags and briefcase in the car and Debbie was going to drop me off at the station.

Dr Dick has a very mater of fact manor about him and he’s not the most emotional chap on the planet. We shook hands and sat down. He didn’t really explain what was going to happen and remember we thought slipped disks. He didn’t know that was all we thought. He started showing the images from the MRI scans and when we saw the ones from back I asked if he could see slipped disks. He looked at me a little odd and said “he would like to see where anyone got that from”
He then started showing scans higher up in Debbies brain and his narration changed. “This I’m not so happy about” he added “and this cloud here is not great” I was confused where is the slipped disk stuff? Why’s he talking about clouds? Debbie had already clicked, and she was not looking great. Dr Dick continued with “see another cloud” Debbie went to say something but pulled back. Dr Dick said “no go on Debbie what do you think it is? Debbie almost stuttered the letters “M, M, M S” Dr Dick said “yes Debbie that’s what I believe”. What he said was very matter of fact, almost cold, but I’m sure he wasn’t being cold.
The 10 seconds that followed this revelation was the longest and the shortest time ever, while we both took this in. Multiple Sclerosis what was that? Yuppies Disease? Then I remembered pictures of people in wheel chairs for charity campaigns. It started to click. I started to cry everything seemed to have just fell apart. That set Debbie off she was crying we were holding hands crying in from of the Doctor. He looked shocked, why are they crying didn’t they realise what this could be. I think he had done this so many times and I think others were prepared for the consequences of “neurological” tests. I was not.

I went home crying and started Googling MS, I called work crying to cancel my meetings, this was the start of my “battle” against MS.