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poz
10th March 2012, 11:31
Hi All,
I wanted to thank you for your posts - you are all such positive and
uplifting people and i have spent many a day this past year gaining strength
from you :D i cant tell you how much difference you have made to me, on
days where my mam has been on her `special` days

My mam was dx feb 2011. we dont know which type of mnd she has
as the consultant says its a rare form, but from dx my mam gave up on life.
I expected her initial shock to ease a little and find her fight kicking in, but
it hasnt. She wants to die and means to have no quality of life between now
and then and im sorry to admit it, but my children and i feel cheated out of
special memories. Im sorry if that sounds selfish. Whatever the O.T, podiatrist,
etc try to do for her (and they have tried a LOT) she finds immediate fault with
and will not use any of the equipment, foot splints, walking aids, rise and recline
chair etc. She sits in her wheelchair often from 5am untill 11 pm as she can no
longer use the furniture. we bought a better height sofa to make life a bit more
comfortable but she says the living room is a goldfish bowl and wont sit in it - or
the sofa!!

She managed to use a rollator for visits to the loo and making her meals, until winter,
and now she has had to move downstairs (can no longer stand up to use the stairlift)
and dislikes it immensely. she has work starting next wk to extend the kitchen and
fit a downstairs cloakroom and loo as she has no facilities downstairs. Up until now,
she has refused four other plans the O.T/ Council Planning Dept planned with her, to
convert the bathroom to a wet room/ the living room to a bedroom with ensuite shower
room. We are just praying she doesnt cancel this work

We make her meals every day and check her up to several times a day as she lives alone,
but her behaviour is so bad that we dread going. We can spend up to five hours with her
in a visit and she will sit with the back of the wheelchair to us the whole time ignoring us.
Its heartbreaking, we just want to help her, not interfere and take control of her life.
The situation is further complicated by myself and my daughter have m.e. My little boy has
cystic fibrosis and my middle daughter has a back problems following a blood clot on her womb.
My kids are age 22, 15 and 11 and we all chip in to provide Mams daily care. A carer attends
her once a day for 20 minutes to make her breakfast and two flasks - Mam wont accept more
time than this, and doesnt make life easy for the carer, often ignoring her.
My Mams personality is so far removed from who she was before the dx, she is like a completely
different person. We miss her so much. Some days we go home and cry at the injustice of it all.

Im sorry if i have waffled on a bit, after another sleepless night (with worry) im feeling a
bit emotional and sorry for us all. Just give me a slap and i will be fine :p

pete
10th March 2012, 12:01
Hi Poz

Whats amazing to me is how you cope at all, you certainly havnt had it easy and with Mom being the way she is , it isnt going to get much better for you , All i wanted to say is Its not just about your Mom , you need to keep yourself well and not let her attitude affect you , I had much the same with my Dad , he past away a long time ago ,but he tried to make our lives really hard , if it was deiberate i never knew but, it left its mark on us kids after , As for your Mom .it sounds hard but you can only help if they let you ,and you can do no more than they are willing to let you , so dont feel to bad ,I think you have more than enough to cope with , wishing you luck and your mom a change of heart ?. Big hugs much better than a slap

Best wishes

pete

michelle
11th March 2012, 22:51
Hello poz I am so sorry to here about your mum, my mum has recently been diagnosed and it's hard to deal with i know. I have asked neurologist/doctors/health care providers not to tell her as I fear this is what will happen to my mum. All I can say is just care and love her the best you can under the circumstances. Has your mam been prescribed any antidepressant medication they may help just a thought. Please try to stay strong, this horrible disease has ripple effects that reach everyone I'm afraid and we all have to find our way through it some how
Sending your my best wishes
Michelle x
Y

poz
15th March 2012, 16:40
thanks for your replies :)

Love hugs and best wishes to you both x

EMT
15th March 2012, 17:39
Hi Poz

Your Mum is not alone in this behaviour, My wife was diagnosed in Jan of this year and the disease has progressed rapidly to the point where she no longer has use of her legs or left arm and her right arm is getting progressively worse. At first she was going to fight it tooth and nail but after a couple of disastrous visits to hospital for infection and pain control she seems to have given up the fight. She also finds that nothing is good enough for her and nothing helps including a special chair provided by our local OT team. The fact that she was in it for 6 hours without pain whereas before our existing chairs caused her great pain within 30 minutes was irrelevant. Our local macmillan nurse has recently got her in to our local Hospice to try and deal with her pain control , but she is still very negative , I am hoping that with their help we can get her to a better place psychologically. I don't think anyone not suffering from this disease can truly understand the immense emotional impact it has on both the sufferer and their families. Try and stay strong for her ( difficult I know ) and talk to her care team about counselling , you never know it may help, we are keeping our fingers crossed ourselves

Best wishes Steve

poz
25th March 2012, 14:24
Hi, How is your wife getting on Steve?
No change here, other than Mam having a high blood pressure and blue feet.
She hasnt mentioned to the nurse that her feet are blue so no one is checking it.
I do hope your wife has found some relief from being in the hospice.
x

EMT
25th March 2012, 21:35
Hi Poz
thanks for asking , my wife is still in the Hospice, they have got the pain under control but she is now having major anxiety/panic attacks which is upsetting her no end and she is crying a great deal and finds it almost impossible to relax, We are looking to get her home soon so that hopefully will help with the anxiety attacks along with the meds she is getting.

With respect to your mums feet, my wife also experienced freezing feet , which her physio put down to lack of exercise and stretching of the muscles. he showed me some exercises which have greatly helped , they stretch the calf muscles and make sure that her legs are supple and get a good blood flow.

Does your mum get a visit from a physio?............ if not it may help to talk to the MNDA co-ordinator in your area to see if they can help out as she should have one who is experienced in dealing with MND patients as they have different needs from other clients.

best wishes Steve

john
25th March 2012, 21:36
poz,
your Mum's high blood pressure may be a blessing. On alstdi there is a guy who has bulbar onset als which he has had for 9 years which is against all the odds. He is still fairly able in a lot of respects and they are thinking this is down to losartan which is a blood pressure medication. try talking to her doctor and see if mum could be prescribed this. You never know, maybe just what she needs. On the other problems try citalopram which has been suggested elsewhere which relieves anxiety which is possibly where most of the symptoms are coming from.

John

Beryl12
27th March 2012, 14:02
Hello Everyone

This is my first post. My father in law has been dx with MND. and after reading storys and threads i felt now was the time to write and say how increddible brave you all are.

he was formally dx on the 14 december i think, and when i say i think, as a family they, and i mean the parents and the children just arent dealing with it and it is heart breaking, and i understand now some of you feel.
i cry and shout and moan and groan but nothing will change and i can see him slipping away and others want life to carry on as nothing is happening!
my mother is law is so angry that in its self is heart breaking.
it is so sad, he also lost brother to the illness, but as a daughter in law i want to be doign things and making life as best it can be but it seems this isnt what is wanted. i found these forums so interesting, inspiring and the can do attitidue of some is wonderful.
But at the same time i feel how some of you do too, that it is frustrating.
i do feel that i can use the forums as a great place to talk and share which is great. thank you all

Robyn Copley-Hirst
27th March 2012, 14:59
Welcome to the forum, Beryl.

I'm sorry you have cause to seek support here, but I hope the forum can be a source of support for you and your family.

People deal with grief in very different ways, and your frustrations and feelings are completely normal in a situation such as this. If you ever want to talk through your feelings, or ask about practical support don't hesitate to call our Connect phoneline on 08457 626262.

Ask whatever questions you find useful on the forum and if you ever need any computer support from myself or the moderating team just ask in the Forum Feedback and Help area, or contact myself on forum@mndassociation.org

Best Wishes,

Robyn
(forum co-ordinator)

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