All Changed

So it's been a long time since I've written my thoughts on here. I think that's because it's been a long time since I have allowed my self to think.
Thinking brings fear, uncertainty, sadness.
So much has happened. I knew that Dave was going to die, I just thought that we would have longer together. Time to prepare - if you ever can - both emotionally and practically.
It seems impossible to think that a year ago we didn't even know that he had MND and yet now he is gone.
Why is it that when those we love die, we think only of the things that we didn't do or didn't say but should have or the the things that we did do or say but shouldn't have. 
My biggest regret is that I was more of a Martha than a Mary, putting so much effort, energy and emotion into caring for him that I actually didn't sit still enough and just be with him. 
And now he's gone 
And I can't make it up to him
What is daft is that it was easier to be with him when we were alone
But we were so rarely alone
And I so wanted to believe that we would have a long time
Now I have so much time but no Dave to share it with.
So many jobs to do - some well within my capabilities but many I have never done before - yet I don't have the incentive or energy to do them.
I consider getting out of bed an achievement, walking the dog is like completing a level. Anything else is a big NO!
Scared to leave my house.
I don't want to be alone but when friends call I want to be alone.
How ridiculous is that?
So many things to sort out but where do I start? 
I need to start caring for the garden, maintain the cars, decorate the house, sort out the finances - not an easy task when your income is a bereavement benefit and half of your husband's pension!! 
Then there's still family to visit and care for.
All this when getting out of bed is an achievement.
I would be lying if I said that faith hadn't waivered - but the fault is mine.
I know that God is waiting there for me to turn back to Him, 
I know that this is my Footprints - that if He wasn't carrying me I would have sunk so much lower.
I don't know if I am truly at my lowest ebb yet but I do know that I am finally trying to lift myself up.

Here we go again

Mmm, alcohol and blogging are too inter related for my liking.
I don't think I have ever in my whole life drunk a whole bottle of wine before - made me confess things to people, say things that I didn't mean to say
Learnt again that my sons are much better people than I ever was
I love my family more than I could ever explain.
I love to spend time with them, would love to get them all together.
Had a great holiday a couple of years ago - only a few people missing - then everyone together for Dave's 70th last year
I would genuinely give anything and everything to get everyone together this Christmas  but it's not going to happen.
I have had a very blessed life - my blessings still outweigh my problems
Pray and praise always - confess our sins - in this case drink
New day - new start - God bless

Nearly Christmas

So it's nearly Christmas - I love Christmas and yet it is the most stressful time of the year for me. Trying to buy presents while not spending too much money, food shopping, visiting family, keeping the house tidy. I'm trying to focus on the true meaning of Christmas - the birth of the Lord Jesus Christ - the greatest gift of all. I just don't feel festive and yet I am determined that this will be a great Christmas.
It may not be our last and yet it may - but it will be our last 'normal' Christmas.
Dave is already struggling to eat, breathe and speak.
What is difficult alone is also hard with family because you cannot protect them or hide the stark reality.

I know alcohol is not the answer but sometimes it is so tempting.
I should pray but sometimes that is so hard.
I need support more than ever before but know that I must offer it to others.
I so want my family around me - not just the sons, bur parents, step daughters, brother and sister in law
But that is harder than not having them.
MND is really awful - no-one tells you about the staying awake at night listening to your loved one struggling to breathe, feeling helpless when they are struggling to eat and speak and are in pain.
You're not warned about the guilt you feel when you don't want them to suffer and that when you pray for healing it might not be the sort of healing that you want. You're not told how tired and helpless you will feel.
You want to take their place but can't.
You can't talk to them because they are in denial.
You can't watch the TV progs that you used to because they contain death.
It is all so bad - yet I will resist the depresson and focus on God and look for the positive. I will never be prepared.
I will try to be strong.
I will share my faith.
I will love my husband
Happy Christmas everyone.

Keeping faith

Life really can be a rollercoaster sometimes - mine at the moment feels more like a bungee jump :-(
I even feel occasionally that I've crashed into the ground and am waiting for the rope to contract again and lift me up.
Is it normal to have so many negative thoughts and then to feel so guilty.
I want a normal life back but it's not going to happen.
My husband has MND and we need to come to terms with it.
He deals with it by not talking about it; semi denying it and cocooning himself in a bubble. Which would be fine but he is not the only one dealing with it. The whole family is still reeling.
The hardest thing is how quickly things have changed.
A year ago he played golf four times a week, did the gardening, the decorating, the cooking and we walked the dog together.
Now he is unable to do any of them.He struggles to walk to the car, food causes all kinds of problems - not just with swallowing.
Although we only had the diagnosis three months ago he has obviously been suffering for longer.
I have no idea what to expect, how long we have.
I don't know what scares me most - him dying quickly or him going on for years deteriorating and suffering.
I feel I ought to cope but I'm already struggling. We've had visitors for four days which has been wonderful - not just because they came to drive us to the appointment at Nottingham but it gives me a bit of shared responsibility for a while and enables me to catch my breath.
While they have been with us Dave has been fine, they leave and chaos ensues. Dave told the staff that he was constipated and he was really worried - prescription sorted but luckily unavailable.
Tonight I have a lot of extra washing. So here I am sitting up while he sleeps in his chair which is warmer and more relaxed until I'm sure that his stomach is settled.
Why do these things happen when we're alone?
I really want a hug - he doesn't do that anymore - I'm lucky if he holds my hand and I'm desperate for a kiss.
I love him so much but I can't reach him.
I have lots of wonderful friends and a fantastic family but who do you talk to at 12.30 in the morning when all you want to do is sleep and cry? Who do you ask for advice?
How do you stay strong for everyone else? How do I support and care when I don't know what to do?
My head is splitting and I want to cry.
It's said that God doesn't give you more than you can cope with - I feel He has over-estimated my capabilities.
It is also said that when I am weak He is strong - I really hope so.
I can do all things through Christ who strengthens me - I must hold that in my mind and my heart.
It's at these moments that I realise how important it is to to both pray and praise, and I have done precious little of either recently. It's a good job that God forgives.
So now I must make the decisions - ones that are beneficial for both Dave and me.So I think it's time to take him up to bed and try to get some sleep for myself as well.
God Bless.
People obviously read this - so please comment - perhaps we could help each other.

What Comes Next

I'm really not sure that blogging after all the wine I've consumed tonight is such a good idea but am actually in a situation where I'm able to sit and type.
Have had an amazing time recently - visiting family. Learnt that it really helps to share the responsibility and that occasionally I need a drink and to catch up on sleep.
This last visit though has been really difficult. down with the parents - Mother is 88 and Dad is 89 - husband is 70.
Bizarre situation - who will go first? Can I cope? Probably not.
I decided at the age of 5 that nursing wasn't for me - not good with suffering and dire with blood - so why at the age of 55 am I suddenly caring for 3 extremely poorly people?
I love them all so much and it is so hard to cope with their suffering and try to stay positive.
So just occasionally - a long walk with Elly and an excess of alcohol is needed.
There are just  so many things to sort out - wills; living wills; funerals; what happens afterwards?; can I afford to stay where I am?; do we need to make changes to our house?  I could go on but what's the point? He won't talk about it - I will just have to cope and deal with everything as it comes.
I actually thought today that when it's all over I would quite to live down here just not sure if it's possible.
I know I have an amazing network in the Midlands but it's still North to me and walking elly by the sea is millions better than walking her through the mud.
Motor neuron disease can't be the only illness that turns peoples' lives upside down. It's so sad that you only appreciate what others may have been through when you find yourself there.
It is still so important to count blessings though. I have had a great time visiting our sons, staying with my step daughter - who is also a fantastic friend .
Whatever happend - God is in control and he will take care of all us - so time for prayers and bed.
God Bless and please - if I have made you think - please comment

So alone

I hope that it doesn't seem as though I am always moaning. I am sure that there are many people who have reached my stage in life and think, "This isn't what I expected."
I'm not even sure that I envy the people who don't think that.
I can accept many things without complaint - well perhaps a little - but this lastest turn of events is definitely the most difficult.
I really was looking forward to some quality time with my husband - getting more involved with our church, our community, perhaps fostering, helping and caring for my parents, visiting friends and family and perhaps a holiday or two. Instead I watch him deteriorate daily, struggling to cope and to understand. I'm able to help physically, doing the food, dressing, drying and shopping but he won't share his emotions. I can't decide whether denial is positive or what. It helps him but I know that it doesn't help me. There are a lot of unpleasant issues which need sorting, which we need to discuss together while he is still fairly well not wait until it is too late. Things that I can't discuss with anyone else - finances; what happens when I can't cope physically with helping him into bed or when he can't eat properly and swallow; funeral;hospice, cars. I still haven't filled in the forms for carers allowance or tax benefit.
Into this we must try to live, make memories have fun but it's so difficult when all he wants to do is watch TV or do a sudoku.
I am more gregarious, I need company but I don't want to leave him. We are very blessed that we have so many friends who call round and just chatter.
I haven't even thought about Christmas - not sure how I'll get that organised as well as taking over the food.
Some days  I just want to find a hole and cry - other days I can talk candidly and openly in such a way that it might seem as though I don't care.
Last night I couldn't even send messages to my sons without tears streaming down my face - today I have met a friend for coffee and gone shopping without a tear in sight.
I think that the hardest part is feeling so alone. It doesn't matter how many friends and family are around or however much I actually do speak there is still so much that is left bottled up.

So tomorrow we go away, visiting family - first time staying away since diagnosis. No place to hide - brave face 24/7 - but at least I can try and relax a bit - build up my reserves.
With prayer and praise we will win through

This isn't what I had expected

So, here we are again, trying to put thoughts into words, expressing emotions for all the world to see in an attempt  to cleanse ourselves and prevent ourselves from going mad.
I genuinely don't know how much more I can cope with.
Firstly - the most devastating news imaginable - my husband has an incurable degenerative illness - motor neurone disease. So you try to get your head round it whilst trying to be positive and deal with the ever changing circumstances. Add to that the fact that all my sons have finally left home for uni - so I have to deal with this all alone because my husband won't accept the diagnosis.
So I wonder about what the future will hold and am I strong enough to cope - emotionally and physically.
I want to cry but where and how - I don't want Dave to know. Pressure builds - so head hurts.
Then as it all starts to fall to pieces - two close friends lose a parent - making me realise how frail mine are but they're so far away and I can't care for them and my husband and I could lose them all within the next 2 - 5 years - will I even have that long?
Then my cooker packs up, my washing machine doesn't spin properly, my fridge keeps filling with water as it defrosts itself, I want to tell someone how I feel but don't want to moan and everyone has enough problems of their own.
I'm really not coping with trying to do everything and being strong for everyone. Christmas needs to be sorted, visits need to be done, I can't go out and do my own thing or the things I would have normally done. I feel like a headless chicken. I want to cry all the time - I don't want to think but I have to - someone has to. No-one really understands - they couldn't.
I can't cope with any more emotion - I cry at the thought of putting my dog in the kennels - my emotions don't seem to count though - everyone thinks I'm being silly.
I need a release - contact with people - the outside world - so I use the ever present social network but apparently I comment too much - straw which broke camel's back - kick someone when they're down and prove that you don't understand.
I know God is out there, I know He cares, I know He wants us to stand strong and praise Him and believe me I'm trying but I am failing full scale. I want a hole that I can crawl in to.
I have never felt like this in my life - I would rather it was me than have to watch him suffer. I am so scared and feel so alone. So maybe I need to tell the world - maybe I can help others by being honest about how I feel - I can't be an ostrich - this is real - and God will take Dave and I through it but I am a person who wears my heart on my sleeve - so if you are reading this - sorry and thank you. Please feel free to comment and to pray for us.