Danijela
Senior member
- Joined
- Dec 3, 2008
- Messages
- 667
- Reason
- PALS
- Diagnosis
- 11/2008
- Country
- UK
- State
- UK
- City
- Bolton
We have had a hard month. Breakdown in care arrangements, having to use an agency (different people turning up without much clue about our routine and lot of paperwork!), colds, chest infections, weakening legs and now finally inability to stand up for transfers.
Throw in a referral to hospice (our idea, still quite emotional), a small boy who requires a lot of attention, my full time work...it has been really tough.
During all this time I tried to put my head down, manage all the task to the best of my ability, try to grab a few hours a sleep a night so that I can function and do it all over again. During all this time L just pushed and pushed. His demands are exceeding my ability to meet them. It is not the big stuff, he is not asking me to dig the garden or anytihng like that, it is just the CONSTANT low level pestering (for the lack of a better word). I am very precise and organised and work hard so that I can have half an hour in the evening of 'me' time. I settle the child in bed and I deal with all L's needs. As soon as I finally sit down to relax he starts looking 'sad', deep sighs, caughing, shifting, shuffling, asking for a pillow, asking to remove a pillow, asking for certain foods, refusing those same foods...it is just constant. I understand that he may be uncofortable and that things need adjusting, but it is the attitude that stinks at the moment! He always looks so pained! But...that is just with me. As soon as he is around other people he cheers up and tries to put a brave face on. This is misleading. To other people. They think he is doing fine, while I am drowning in endless task and chaos of emotions. I believe he CHOOSES to be this way with me, as if I deserve it in some may, while others are spared.
So how I lost it? Well, he was asking me for the 10th time in 5 minutes to adjust the straps of his bipap (it was fine, he was panicking for no reason) then he said he was 'struggling to breathe' (bipap was on, he had an oxymetry recently - result = adequate ventilation). I lost it and just took the bipap mask off to show him that he is not struggling to breathe (he was proped up on pillows) at which point he started to argue with me - which kind of confirmed that he was not really struggling, just panicking. Sorry L, I tried the patience and it did not work, I had to resort to bipap removal. I am not suggesting you try this at home! The bipap went on once he calmed down... Dani
Throw in a referral to hospice (our idea, still quite emotional), a small boy who requires a lot of attention, my full time work...it has been really tough.
During all this time I tried to put my head down, manage all the task to the best of my ability, try to grab a few hours a sleep a night so that I can function and do it all over again. During all this time L just pushed and pushed. His demands are exceeding my ability to meet them. It is not the big stuff, he is not asking me to dig the garden or anytihng like that, it is just the CONSTANT low level pestering (for the lack of a better word). I am very precise and organised and work hard so that I can have half an hour in the evening of 'me' time. I settle the child in bed and I deal with all L's needs. As soon as I finally sit down to relax he starts looking 'sad', deep sighs, caughing, shifting, shuffling, asking for a pillow, asking to remove a pillow, asking for certain foods, refusing those same foods...it is just constant. I understand that he may be uncofortable and that things need adjusting, but it is the attitude that stinks at the moment! He always looks so pained! But...that is just with me. As soon as he is around other people he cheers up and tries to put a brave face on. This is misleading. To other people. They think he is doing fine, while I am drowning in endless task and chaos of emotions. I believe he CHOOSES to be this way with me, as if I deserve it in some may, while others are spared.
So how I lost it? Well, he was asking me for the 10th time in 5 minutes to adjust the straps of his bipap (it was fine, he was panicking for no reason) then he said he was 'struggling to breathe' (bipap was on, he had an oxymetry recently - result = adequate ventilation). I lost it and just took the bipap mask off to show him that he is not struggling to breathe (he was proped up on pillows) at which point he started to argue with me - which kind of confirmed that he was not really struggling, just panicking. Sorry L, I tried the patience and it did not work, I had to resort to bipap removal. I am not suggesting you try this at home! The bipap went on once he calmed down... Dani