Having a wobble

[shelly21]

denise it angers me that we pay for legal power of attorney and the first line medical staff ignore you!!!

My gp admits he doesn't know re mnd but he asks me if the mnd association recommends things etc.

I'm so glad to read you feeling a little happier. X

[Piglet]

denise it must be awful for you at the moment, on one hand you needed some respite and now you have it you feel lost😯
I’m sure it will take time to adjust. You’ve cared for Stephen for a long time your bound to feel at a loss. Thinking of you and try to take care of yourself as well as Stephen xx

[Claireflo]

Doggymama it's so difficult accepting that this illness is something we just can't fix, as much as we desperately want to. You're doing everything you can and much more. Wishing you strength in such difficult times x

[Claireflo]

denise it's good to hear that Stephen was a bit happier today with the radio and that he's been reviewed by the chest clinic. I hope they start listening to you and make some progress with arrangements for the longer term so you can have a bit of peace of mind. Thinking of you x

[MMG]

I've also been having a wobble, not a little one though, a great big ugly one.

Had a respiratory visit to hospital on Friday which didn't go well. CO² levels up so a young nurse advised that he MUST start to use the NIV. This was met with his very best f**k off look. Senior nurse said you're not going to use it are you to which he shook his head defiantly. She said its up to him and he knows the consequences of not using it.

Respiratory consultant then came in and said that as his face muscles are affected he is in the group of people who are least likely to tolerate NIV and as it won't extend his life anyway there is nothing to lose by not using it.

Neurologist then discharged him to care of palliative care consultant and respiratory team will now do home visits. So a plus is no more travelling to hospital but the negative - well ...................

You have got anticipatory drugs at home havent you? they asked -

They can't say how long, and can't say what maximum level of CO² he will be able to cope with.

I felt sorry for my counsellor this morning she got snivelling and snorting..

I fear he has given up - he has certainly withdrawn into himself. cant blame him..... I'm terrified of what happens now or next.

I've promised to support his wishes but really didn't think it would be this hard.

Another plus though, we have finally got weekend carer support starting this Saturday.

[denise]

MMG its dreadful isnt it. 3 people say 3 different things. What to do if only the first person was there? Think sometimes you have to go with what is the most comfortable, what your gut feeling is. I'm trying to type something and I really don't know what to say. I felt so hopeless on Sunday and so happy to see an improvement yesterday. I'm not sure what I would have done had he got any worse probably wheeled him out and took him home.

Sending love and hugs and I hope having further help makes things easier.

Xxxx

[Bowler]

MMG I hope this doesn’t offend but having watched the only girl I ever loved get taken by this hideous disease I don’t see your hubby as giving up I see him taking full control which is an exceedingly courageous thing for him to do.

Of course you will be feeling terrified who wouldn’t be in your position. What helped me was having many a long chat with Ann’s palliative team about how they planned to support her. Once I had that straight in my head I was free to get on with the toughest part of my role of holding her hand and walking along side her.

It was without doubt the toughest time of my life or at least I thought so at the time but you know what I look back now and am proud to say Ann did it her way.

Sending you much love

[shelly21]

MMG how awful for you both. It was hard reading your sad words. But you are an amazing carer to your husband.

acceptance is hard at times especially as you move on to the very emotional phase. I'm hoping the palliative care team give you both the support you need.

X

[Claireflo]

MMG I'm sorry that your husband is having a tough time with his breathing and NIV. It must be so difficult for you both. Please draw on every bit of support around you to give you strength as you continue to support him and his wishes. Thinking of you x

[Piglet]

MMG It may be a good thing now your husband is under palliative care. I should think you will get better care and support. You will get to know the staff and hopefully will be able to discuss all your concerns with them. Here’s hoping!
Enjoy your respite on Saturday. You deserve it.xx

[Piglet]

Bowler that was lovely how you described Ann. It’s also comforting to know that although as you say was the toughest time of your life, you seem to have found comfort now on reflection. I wish you peace and tranquility.xx

[Bowler]

Piglet Thank you

[Heather R]

Bowler thanks from me also for sharing that , as I am in the process of deciding when to stop NIV, and having some feelings of guilt. A lot of things to consider, but for me personally I feel taking such a decision does take courage. X

[Piglet]

Heather R that must be an awful decision for you. Thinking of you.xx

[MMG]

Thank you everyone for your kind words.

Bowler I'm not offended by your kind words. I used the wrong phrase when I said give up. He has been amazingly strong and never complained. He has fought every step of the way so far, but has now become withdrawn. I am not surprised and don't blame him - I am scared so I can't imagine how he feels. We used to talk a lot, and then communication became more difficult with technology and now eye gaze, but he doesn't want to discuss anything now. So give up is the wrong phrase.

Bowler You describe your wife wonderfully. She was a lucky woman to have you x