A carer's testimony

It is so often the case that the focus is entirely on the person who is suffering with the mental health problems and, whilst they need all the help and assistance they can possibly get, it is not always so well documented on how difficult things can be from a carers perspective. I hope that our story is an encouragement to both sufferers and carers alike and in particular to those who are struggling to cope with mental health and faith issues. [Click on the links below to jump straight to a section]

History: Alan contracted a mystery virus and was rushed to hospital
A Learning Curve: I felt God very close to me and was full of peace even though this was a very difficult time.
Decisions And A Big Move Ahead: Sometimes in life when you need help the most, people leave you and don?t come up trumps.
Day To Day Living: Working full time also meant that Alan was alone most if the time and he had now been diagnosed with Fibromyalgia as well.
Dealing With The Shock - The Grieving Process: I've given my tears to God
Changing Roles: We would share housework and chores... ...now I have to do everything.
Knowing Who I Am: When I know who I am, nothing can bring me down unless I let it
Still Fighting For What We're Entitled To: As a Carer, you are an invisible voice that lives with the consequences of long-term illness
Laying Down What I Can't Have: I've discovered that I have to face my disappointments.
Finding A Life For Myself: I have to have times when I can just laugh and enjoy life
Others Around Me - the helpers and the hinderers: Some people, friends even, can try and help but actually give you the most bizarre advice.
Don't Take It On Board: I have purposefully stopped sharing with some friends or colleagues
Going It Alone - Painful But Necessary: People are not always going to be there when you need them.
Me and God so close: I'm grateful that through it I am closer to God.

 

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History:

Alan and I met in 1996 and fell madly in love and married a year later. We were plugged into a Church and were living 24/7 for God. Zeal for His house consumed us and we were busy preaching, running youth groups, Alpha courses, home groups, raising money and leading as a pastoral couple within the Church. We came across the Abundant Life Church in 2001 and two years later, in January 2003, planted a church as part of the ALC network. This was just what our town needed and we had great plans.

But six weeks later Alan contracted a mystery virus and was rushed to hospital, the virus inflamed his brain and heart and gave him enchephalitis, myocarditis, and peracarditis. It also inflamed his kidneys and landed in his immune system. Another man was in hospital with him at the same time with the same virus but he died the next day. All the doctors say that Alan is very lucky to be alive. He was eventually released from the hospital with a carrier bag of medication and no after care! His GP at the time said he would be back at work in six weeks time. I have since found out that was nonsense.

Alan was a very hardworking man who loved his family and children dearly and was working to extend God's kingdom in any way possible. He hated being ill and although he was tired and still in a lot of pain all of the time, he went back to work. His mind was fed up with being ill but his body was saying no, no no!

He did this for three months in which I saw him struggle every day and begged him not to go to work and take some time off. Alan plugged on. He broke up from work on December 19th and collapsed on the 20th December. On January 4th of the New Year all I can say is that he collapsed mentally, had a breakdown, fell to pieces.

A Learning Curve:

Dealing with physical illness is one thing. I watched Alan lose stones of weight in a matter of days and saw him connected to all sorts of monitors and be very close to death in hospital. As a Christian though, I felt God very close to me and was full of peace even though this was a very difficult time. God was so precious to me, like a real treasure and so easy to find. People around me were surprised at the strength I had in God. My non-Christian friends thought I was in denial because I was so strong and still hanging out my washing, eating, joking. God was closer than the air I breathed and I just had a sense that we were all being held in Gods hands. No one else was going to do all the practical stuff that needed to be done, so I just got on with it.

When Alan had his breakdown, and got mentally ill in January that was a different kettle of fish to deal with! I had never been near anyone who was mentally ill. Alan was shaking all over; his arms and legs shook for months and months without stopping. He cried hysterically and talked gibberish. He saw black panthers in the garden and was convinced that people were staring at him through the window, which caused him to often carry weapons in the house for protection.

If he had a bad panic attack he would run out of the front door so fast I wouldn't know he had gone. My Mum and I would look around all the villages until we found him at the side of the road hysterical but exhausted. This happened dozens of times from the January to the July. We took Alan to the doctors many, many times to be told, he will probably be sectioned in the morning but that had to be instigated by his own GP. They would give us knock out drops to sedate him and when we went in the morning his useless GP would literally say, "You're not going to kill yourself are you mate?" and send us home again.

I found that many people did not know how to deal with people who are mentally ill. I guess you wouldn't until you had to deal with it. Through all this experience I found that I had to fight for every service Alan was entitled to by banging my fists on the table and demanding a decent service. Melton Mowbray is a small town and therefore does not have all the services that a city may possess. We waited 3 months to have a full psychiatric assessment, where a man who couldn't speak much English, just said keep taking the tablets. I was so mad. Alan constantly spoke of suicide, was not coherent most of the time, you couldn't leave him by himself for long and he was always running away. I was juggling two children, sick husband, keeping the church going, work and trying to keep on top of the finance, as Alan had now been ill for a year on and off and financially things were difficult.

I felt very out of my depth in dealing with someone with mental illness. I could work hard, juggle all my commitments but did not know what I was suppose to say or do to someone who has literally lost their mind. All I could say was "Please help Lord, I'm looking to you, as there's no one else!" I couldn't get any help from the NHS or family or friends in terms of 'what do you do with someone in that state. That is what I found very hard. Would he come at me with a knife or hammer (which he kept as the aforementioned weapons) because he thinks I'm a stranger in the house? What if he does kill himself? It's impossible to be there all the time when you work and have other commitments such as children and Church responsibilities.

I guess this was a learning curve, being thrown in the deep end and left to get on with it. My saving grace, I serve a God who knows exactly what he is doing, even when I don't and no one else seems to!!!

Decisions And A Big Move Ahead:

Cutting a long story short, I and two other trustees had to make the decision to close the church. Sometimes in life when you need help the most, people leave you and don't come up trumps. That's okay; it happened to David, it could happen to me! But David found strength in the Lord. I was working part time now, which didn't even cover the mortgage, couldn't get any help with benefits because changes to the Inland Revenue benefit system. This was February and I was told to come back in April and that there would be no help with the mortgage until we had been on income support for 39 weeks. We always said we loved the Church in Bradford and would be there if we weren't building a church in Melton but now that was gone. I decided we would move to Bradford, have a great church, a big church, I would work full time and we would get lots of practical help from all the great friends we would make.

I put the house up for sale, got a job very quickly and a starting date. The house didn't sell as quickly as we had hoped and I had to borrow money to rent somewhere but we went for it anyway. Again, we can have our plans or think we have worked out God's. Things didn't go as smoothly in some ways as I thought God would allow. After all He can see all what I've been through and would now like to give me a great big break?????? No! I think, well I know, He is more interested in my character than my comfort and He knows the big picture of my life and doesn't think from a position of just what's in front of my nose. Praise God, His hands are a secure place to be in.

Day To Day Living:

Unfortunately, it was a case of out of the frying pan into the fire as far as work was concerned. I thought working for Social Services was hard but the hostel was very badly run and the most dangerous place I've ever worked at. Working full time also meant that Alan was alone most if the time and he had now been diagnosed with Fibromyalgia as well. ALC is a great church in many ways but we had no pastoral care or practical help. Finances were just as hard as our house hasn't sold, but we were now getting many great services from the NHS in West Yorkshire, which we didn't have before although I had to fight for every one of them. Eventually I made the decision to pack up work, as Alan still needed caring for. I have spent the last two years fighting the benefit system and trying to prove to them that Alan is as ill as I know he is.

 

Dealing With The Shock - The Grieving Process:

 

I've given my tears to God. It is a great shock when someone who has been very healthy and you love them dearly become very ill. Physical is one thing, mental is another, I found that a great shock to my system. But there is a choice. I either go under, or I get over the shock and learn some lessons as I throw myself into God more and get on with my life, the new life that has been thrust upon me.

When something ends, there is a loss and there is also a new beginning. To get over the loss there is a grieving process to go through. Depending how big the loss determines how hard this could be. I went from having a very active husband, great sex life, laugh a minute relationship, many people in my house all the time as we had an open house for God, helping many people go forward with God and reaching out, doing so much for God it was great. Now I have a husband who doesn't care about his appearance, has a limited sex life, can be bed ridden with Fibromyalgia, wants to die and talks of suicide all the time instead of our dreams together, hides away from society, cannot cope with the phone ringing let alone having anyone in the house, financially going from two incomes to none, as I had to give up work in the end to look after Alan. At different times I've been very sad at seeing someone you love so ill and there is nothing you can do about it, it's like watching a video of your life but you cant stop or change it. I've given my tears to God and times by myself and God were imperative, sometimes speaking to someone really helps to get things of your chest as well. I had three months In 2006 when I was crying so much and it was like grieving for the husband I had, the one I have now, at the moment is so very different. You've got to face this change and deal with the loss. It may be forever, it may get better, and with God we have every hope that it will. I had to say goodbye to the old and embrace the new. I found positives in the way he is now that could be just the fact he's still alive! What an amazing testimony he will be when he's healed! Thank you Lord I can turn all this around. What Satan can send for harm you can use for good if I allow you to Lord. In sickness and in health I said on 16th August 1997 (The day we got married).

Changing Roles:

As a Christian couple, I would respect Alan as the head of the house and we would have different roles within our marriage. We would share housework and chores, Alan would do any mending, heavy lifting etc but now I have to do everything. This can be annoying and frustrating but a fact of life. I would look to Alan for wisdom and speak to him about everything but now I can't speak to him about anything, I can't ask him about decisions we need to make, I need to make them all myself. I've lost the person who knew me the most. I'm now his nurse, carer, teacher, counsellor, babysitter. Alan was such a clean man and the most unselfish man I had ever met, now when he was first ill he lost the ability to understand the need to wash and did become selfish as people who are mentally ill or any illness can be because they are looking at their owns needs all the time as they are so intense and in so much pain.

This is a real balancing act with roles changing, as when they get better in some ways, you need to swap back again. I constantly deal with this in my mind and everyday trying to know where I am in the relationship and striking a happy medium so I am always respecting Alan and how his illness is affecting him. For example, I handle the finances, and at times, I couldn't ask Alan's' opinion of some choices we need to make, I just make them, other times I invite him in to the choices so that he feels and I feel that I am respecting him and he is part of what's going on.


Knowing Who I Am:

I need to so know who I am in God despite the circumstances all around telling me different. I am God's precious child and he has nothing but good plans for me and a glorious future as I continue to walk with him. When I know who I am, nothing can bring me down unless I let it. Psalm 119, verse 165 says: 'Great is the peace of those who love God's law and nothing can make them stumble'.
When I follow God's ways and keep close to him, I have the joy of God living and bubbling up inside me and the ability to get through anything that I have to face because I'm following God's ways and so therefore not stumbling through the circumstances but living victoriously.

Still Fighting For What We're Entitled To:

 
The benefit system, disability living allowance and NHS services are a constant battle that I have had to learn how to access and not be defeated. Unless you have been a recipient, you can't imagine how hard it is. As a Carer, you are an invisible voice that lives with the consequences of long-term illness and it is extremely hard to change a worker's inability to acknowledge your right to have a say and be heard. There are charities out there for carers (Making Space, Crossroads) who have helped me greatly, both practically telling me my rights and emotionally, being someone who will listen and understands. There are also forums within the NHS you can attend, which allows you to have a say on how services are developing.

Laying Down What I Can't Have:

I have had to face the fact that we are not where I would have liked to be now in life; financially we have suffered for years, I can't have holidays, home improvements, nice car, children can't have friends round, socials in the house. I've discovered that I have to face my disappointments. Things are changing slowly as Alan has slowly got better in some ways but I can't put my life on hold until he does get better and nothing will change the last four years so I need to live now and enjoy what I have got even if it's different to what I would have hoped to achieve.

Sometimes you just need someone to listen to you, someone you can just off load to, or do a small thing practically that would be an amazing help. Unfortunately family and friends don't always help because they have never been there and cannot truly understand what it is like to be a full time carer. I have found myself giving out to others at times when I have needed help myself. I console myself that this is what Jesus did many times when he was tired and wanted to rest, people still needed him.

Finding A Life For Myself:

I came to a decision a few years a go that I have to gain a life for myself within this life of being a full time carer. I have to have times when I can just laugh and enjoy life, times when I can do something just for myself, times when I need to rest and regain my strength. I have found living with someone that is suicidal and overdosing is very emotionally draining. I would have gone mad myself if I stayed in constantly with Alan so I purposely plan in times when I go out and have a laugh. I joined a gym and when I am there, no one can get hold of me, it's a hobby just for me. I have served in various ministries at Church, which I love because I am serving God. Well my whole life is serving God whether I am at home or out, every decision I make every day is doing the best I can with what God's given me, being a great steward. Some people have thought it wrong of me to leave Alan alone at times but I am at peace that if he really wants to kill himself, he will do it whether I am in or out and I will not feel guilty if anything happens when I am out. It would be his decision and therefore not my responsibility. I can do what I can do as a carer and that's all God asks me to do.

Others Around Me - the helpers and the hinderers:

I love the book of Job. Some people, friends even, can try and help but actually give you the most bizarre advice. I've realised with whom it is right to share with and who it is not. Some of my friends, like Job's have sat and watched Alan not get better, and God not do what they think he should and so they turn it on Alan and myself. We're obviously not doing things right, we're not praying hard enough, or saying the magic words, we've not got enough faith or we're obviously sinning in some way that needs to be dealt with. It can be very hurtful when the times you really need a friend to help and listen and care actually condemns and judges you and speaks not with wisdom but from their own frustration and misunderstanding. God really spoke to me through Job, that his friends sat and watched him for 7 days in silence seeing him suffer so much. They obviously couldn't cope with the concept of the righteous suffering and so decided to 'help' Job understand that he must be doing something wrong. I learnt it's about them not being able to cope so I stopped sharing with friends who cannot handle the reality of what's going on.

Don't Take It On Board:

 
I have learnt to not take on board people that are not helping, giving advice that is not helpful, whether professionals, family, friends or just people that want to share their opinion. I don't have to listen to every voice that comes my way and I am entitled to dismiss those that are actually hindering and not helping. I have purposefully stopped sharing with some friends or colleagues that I now realise have no understanding of mental illness and what it entails to be a carer. As someone said to me once, what I need is friends who I know love me, and sometimes when you carry the weight that you do as a carer, you just need someone who will let you just off load when you need to and say, I love you, I'm listening, have no answers but can pray for you. That's great when that happens.

Going It Alone - Painful But Necessary:

 
Halleluiah, God is always, always there. At times, I have felt I so needed someone to talk to but I've had no one and have had no choice but to go through what I'm going through myself, although I know God is there and sees everything. I've had to face this truth. People are not always going to be there when you need them. When they are it's great, when they are not, I get over it. I do believe that how you are when you are truly by yourself is a true test of the real you. I came across this fabulous Proverb one day, 'If you faint in the day of adversity, your strength is small' Prov: 24-10, NKJ - Or as the NIV puts it: 'if you falter in times of trouble, how small is your strength!'

I was by myself in a crisis time with Alan's mental health and everything else and I thought YES! Girl come on! If I can't hold onto my strength in a day of adversity, then when will I? That's when I need strength when the pressure is on. Just like when I go to the gym, when I'm lifting weights, the resistance is on, that's when I need more strength and push through the pain or I will never improve and get through.

Me and God so close:

 
I praise God that whatever I go through I can get closer to him and everything can be used for his good and glory if I allow it. I wouldn't wish the illness, mental and physical that has happened to Alan on my worst enemy but I'm grateful that through it I am closer to God, stronger as a person and have many lessons stored in my cupboard to help others.

I have often seen my life like Sarah Connor from The Terminator, we're in a battle here, but I am gong to win because so much is riding on me getting through - my health, my husbands' health, our future, my children, their children, everyone that I meet and influence, eternity - I want God to say "well done you good and faithful servant" when I stand before him which makes anything I go through worth it.