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kazzik
25th July 2012, 13:48
Hi everyone
I am encountering at the moment many emotions , i feel i shouldnt even have the right to moan when its my partner going through this awful illness not myself. I find myself trying to be strong for his sake as he thinks if I cry its because im thinking there is no hope for him. He is 38 and was diagnosed only August last year with weakness in his hand since then the progression of this has been rapid; so much so that he now cant move both his arms and is in a wheel chair as a few months ago his legs got weak and he was falling over alot.
We have a baby of 2 years old and 3 teenagers , My partner was offered a sort of flat in supported housing where things would be made easier for him and carers were there all the time . This was because of the progression of the MND and because he was tired alot of the time and clearly having 4 kids I couldnt just stop them from coming in and out , or making any noise. He seeemed at first much more settled , and relaxed and it is a nice enough place. T the beginning I was going up twice a day as he only wanted me to feed him or shave him , but I couldnt maintain the taxi's that were costing nearly 40 pounds a day for the two trips. So even if I go every day its 20 pounds a day , i am managing at least 4 times a week and he stays here on a sunday.
To be perfectly honest I am devastated when i have to leave him, other times i just cant get my head round at why him at such a young age. Our son wants his dad to play football with him , to love him but he cant do that , so i feel so sorry for my baby then as well.

My partner is an African man and although he has lived in Uk for many years , he still has a very strong nigerian accent where at times people dont understand him fully or assume he doesnt understand them. So i have found it frustrating when people havent asked him does he understand what this disease is . They talk to me and leave me to try and explain... I find the GP's we have seen to have little knowledge of MND ..for example his foot is swelling up alot at the moment , and the doctor told him to move it round in circular motions several times a day... this is impossible of course as he cant even walk ...a she knew this i found this ridiculous. transport hasnt arrived to take him to MND appointments and ive been left at the hospital waiting for him. Ive found the whole care thing a bit of a shambles when social services argue over giving him an extra half hour here and there because of funding. They now take over half his DLA to pay for care.
There is no compassion , no empathy with anyone that comes out to do assessments , they dont consider how this has turned our lives upside down, how bad things really are, and no one explains fully what next , what to expect.

Last year he lived a normal happy life , worked on a building site , played with kids , we went out , we laughed and had life was ok for us. Within 12 months the effects of this have comne so fast its hard to take in ...I cant take a minute out because ill break down and cry .. i just have to keep looking after him , taking the kids , trying to be normal , not streessed , not upset , Its so so hard i feel like screaming to be perfectly honest , my heart is aching and I am lost...

sorry for this long rant but no one at all has a clue what this is all about and what its doing ...i know people on here do so thankyou for allowing me this space x

take care and thankyou again karen

Cath51
25th July 2012, 14:36
Hi Karen

Sorry to hear you are struggling so much, notice that your location is Manchester,are you seeing the clinic at Salford Royal? If so, get in touch with their MND Specialist nurse - Rose, I can pm the phone number if you wish. Also, contact MND Connect via the link at the top of this page, they will always offer support. My partner is older that yours at 55, he worked as a Mechanic up until 2 years ago, he had noticed problems with dropping tools and lack of grip but thought it was a trapped nerve, when the muscles started to waste away he decided to speak to his GP who sent him straight to Wigan Hospital who then referred onto Salford, can't do much with his arms, his legs are weakening and he suffers extreme tiredness which makes him irritable (don't need to tell you who cops for these outbursts). There are days when you think you could do with a padded cell to have a good rant and scream and others when you just have to plod on, take care and try to get some support, see if there is a Carers Association in your area (your GP Surgery should have details) and take any support you can get.

magic
25th July 2012, 16:56
Karen, you are having a dreadful time and do feel free to rant away on this site. I understand you feeling the systems are against you and many of us have felt that way. The demands on your time are enormous and I agree with Cath51 that the MND nurse may be able to help. Have you spoke to the MND association. They are always helpful and so knowledgeable. I can recommend a book (I know you may be feel you have no time for reading) . It is called 'The Selfish Pigs' Guide to Caring' It is quite amusing and you can dip in and out of it. I do not know how to do the private message so cannot go that route. I just know that you are coping with being a carer like myself but have even more responsibilities and the fact that your partner is so young makes it even more hard to cope with.
I hope you get lots of offers of support and have the strength to say 'yes please,

Magic

john
25th July 2012, 18:33
Hi Karen,
Sounds like you have got a lot on your plate. To help with funding his care your partner should apply for NHS continuing care. This is fully funded so he should be able to keep the whole of his DLA. Your NHS long term care nurse should be able to help you apply. Does he get an mobility allowance because if not he should apply and that should help pay for A to B transport.

Other than these 2 I suggest you talk to MNDA Connect who will give advice or point you in the right direction.

Is it not possible to accomodate you closer to each other? Surely ongoing contact with you and the kids is vitally important. Have a chat with you MP if Social Services aren't willing to help. For him to have to spend 6 days a week away from you all sounds ridiculous.

Good luck.

John

dolly
25th July 2012, 19:46
hi karen i found out 13 days ago after 3 years of hospitals telling us one thing and it not being that my husband 2 has lost 5 stone in 4 months 3 years he was falling sometimes breaking bones he was in a re hab centre for 12 weeks i too was going back and forward every day to visit him they took him into rehab because they said he had spasticity and with re hab could walk but he grew weaker they then did a coombs blood test and alarm bells rung he was taken straight into kings hospital london and after 7 scans 7 lumber punches to get bone marrow they said moter nurones we were devastated i bought him home to take care of him but he is very depressed up one day down the next slightest thing not right flares up and becomes very hurtful to me . We have now been told he has had the disease 3/4 years already he keeps saying to put him in a care home then we have a good day and he,s almost his old self he can no longer walk his hands are all cramped up and speech very slurred I know and worry that it will get worse i,m to scared to cry case i never stop feel for you so much as we are older him 60 me 56 my daughters are 30 and 20 i also look after my disabled mother but she has been wonderful thank god i do have her no one see,s you better than your own mother ,when i go to bed at night i sometimes cry till i fall asleep i cannot imagine how you feel with a baby to care for too my love and support for you is there if you want it is here anytime my job is a qualified councellor seems strange i need it my self too know you take care of you and the family remember none of this is your fault is just the hand of cards we have been dealt xxxxxx

kazzik
26th July 2012, 00:08
Thanks for your reply Cath , I am also sorry about your partner and I completely recognise the tiredness and irritableness in my partner , and a padded cell sounds ideal at the minute ... we do go to Salford Royal and I have met Rose once I think...I spent so much time going on about the ignorance of some people but I should have mentioned what a good team they have there and although we attend once every 3 months they are very good there . I have been having contact with a MND social worker called Trish Kenyon , she is amazing and anything that ive had issues with she has gone out of her way to put right . When she rings I find myself on occasions saying everythings ok , because ive either got over the issue i had and it doesnt seem as big as it did at the time . Or I tell myself i should plod on as you said ..We are back there on the 15th August so I may just have a chat with Rose then. Thankyou very much for understanding

take care karen x

kazzik
26th July 2012, 00:17
Thanks for your encouragement Magic .. I am definately going to buy that book and have a read .. I am currently in the last month of completing MA criminology and start a PHD in September so I am used to reading at all hours ..so thanks for that . I dont even see myself as a carer to be honest , dont know why i think this just because i love him so much and would do anything I can to make his life better anyway ..i dont know if that makes any sense. I think you are also right about finding it in me to say yes to support , but i am sure i will.

thanks again karen x

kazzik
26th July 2012, 00:46
John
This is the second time you have replied to my posts and i appreciate you taking the time to do this really so thankyou.
He has actually just been assessed for the continuing care so we are currently waiting on the outcome of that fingers crossed. He gets 141 a week DLA i think 77 is care allowance and the other is mobility but he has to pay nearly 85 pounds of this to the council for care.
If we dont get the continuing care then I will definately take your advice and contact MND connect so thankyou.
This is the closest they could get us at the time , no one has actually aknowledged the importance of him seeing the kids and spending time with us . I assume though that this is because I have ensured I am there and take the baby to see him regularly anyway , and the girls go up but they prefer to see him at home to tell you the truth . It is ridiculous John you are right , and i know id walk there if it came to it .
What I did find astonishing was that there was actually no provisions in place for anyone like us to be housed together in a place where he could mange and i could get help . The waiting lists were so long with or without medical points . And also this is the only supported housing that could accomadate someone as young as 38 with such an illness . This whole experience has made me realise how there is a need for more awareness of this illness , so families are kept together with help ..the speed of progression and the need to be moved quickly to somewhere adapted to his needs is problematic ...not only because ofa lack of properties suitable and even with medical points you only move up the list . It is really frustrating ..thanks again John for your help and advice .

take care karen

kazzik
26th July 2012, 09:16
Dolly

It must have been so stressful not knowing for almost 3 years what was wrong with your husband , its bad enough going through the falls and the weight loss for a few weeks or months not knowing what it is , but that is awful long time to have no diagnosis. I completely know what you mean when you said he was very depressed coming from hospital , my partner was the same extremely moody and blaming me for slightest thing in our house. But I knew it was a massive shock and he had alot to deal with . The thing I am finding hardest is that he wont accept what he has , and even turned to spiritual healers (which basically are African pastors) claiming they can heal where the doctors cant.. i know this sounds stupid but it was problematic for me because I know they are actually con artists , it got so bad they were sending him holy water and annointed oil but in return wanted various sums of money and one even went as far as asking for a gold bracelet. I have told him time and time again these people are not right , god doesnt charge you to get well - but then he thinks i dont want him to get well...its hard because these people broadcast on a sky channel and i assume when a person needs help and listens to preechers half the day every day they must get some hope ..but they are out to make money out of vulnerable people. I cry alot at night too especially when the baby and the kids are in bed , ive done my cleaning and my work for university ...when i have to lie there with nothing to occupy my mind especially , thats when i cry myself to sleep , probably have none left to cry eventually .
You have your hand full yourself looking after your disbled mother as well and your husband gosh you are a strong lady and you are an inspiration . I really appreciate your support and kindness and hope to speak to you again soon .

karen x

dolly
26th July 2012, 23:47
hi karen i,m noo way strong i,m falling apart but good at not showing iy to day he has been so cruel to me and in front of my mum and daughter who told him don,t ever speak to my mother like that she has worried herself ill with your nevastating news we all have he just told her to move out if did,nt like it she dragged me away saying if this is how he trats you let him put himself to bed enough is enough i of course helped him in to bed while he terraded with cruel words and how i care nothing and he knew weeks ago i did not care about him told me tomorrow to leave him in bed all day never wanted to see my face again .Not sure how long i can take the abuse like you everything is my fault how long before the love turns to uncontrlable loathing everyday its worse he,s throwing things at me like food etc and my poor mum is afraid to say the wrong thing cause it flares up in to aggression . As for these people exploting you for money you like I will eventually call time on this there not healers for we both know that is not going to happen there vultures picking over his bones i,d rather risk my husbands anger full fold than tolarate these people i know this is hard as he has his beliefs no doubt they will throw the old voodoo word around but listen you and I live in the real world its all kuk if these healing pastors could heal for the love of god it would be free thats a no gold currency help .GOD were both so troubled by this horrible disease I think in the next few days my family and I will need to make some hard disisions if he is not accepting help from us we may need to find a place where the control is out of our hands this is something i never thought i,d even think about but i know i cannot and will not cope with the constant abuse 24/7 tonight i shall lay awake all night yet again watching the sun rise to a new daytake care of you and your family hun xxxxxx

Micheal
27th July 2012, 08:03
Recently my grand ma was diagnosed with this disease and in the first we don't even know that what kind of disease is this but doctors told us :
The motor neuron diseases (MND) are a group of neurological disorders that selectively affect motor neurons, the cells that control voluntary muscle activity including speaking, walking, breathing, swallowing and general movement of the body. They are generally progressive in nature, and cause progressive disability and death.....
Now she is living in a supported living center/ nursing home where she is being provided proper care and proper attention we wish that she could recover but doctors are saying that changes are very less...

kazzik
27th July 2012, 16:05
Michael
I am very sorry about your grandma , and im aware of what the disease is now and it what it will progress to , its just awful to feel so helpless and have to watch this happen. I am glad your grandma is recieving good and proper care . My husband is 38 and doesnt accept what it is he has , but he is a very independant man who believes he will get well, I truly wish he would but like you said michael the doctors have also told us things wont get better.

take care x

luce
29th July 2012, 01:39
I just think it is so sad that the housing department cannot get a solution to help you stay together as a family and have carers going in. can't you get your MP involved?
best wishes all

Lucy

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