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Danijela

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Joined
Dec 3, 2008
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667
Reason
PALS
Diagnosis
11/2008
Country
UK
State
UK
City
Bolton
In the light of CJ's and Don's experience with the hospice I start this thread with a heavy heart.

Laurence and I attended our second outpatient hospice appoinment this morning. The consultant suggested an admission in order to establish his PEG feeding regime (never managed to do it by the community based team), deal with some minor discomfort and allow time for a new package of care to be devised and put in place (Laurence is retiring with me remaining in work).

We were left alone in the room to make our decision. Both were in tears. One breathing management option offered to Laurence was morphine and he was clear about not wanting it. He stated that he needs his ventilator (Bipap) and not morphine at this stage.

He will be admitted on either Friday or Monday, depending on bed availability. He will have his own room, wifi access, free visiting hours and children are welcome. The irony, oh the irony is that the hospice is right next door to a lovely park we take Stan to.

Dani
 
I'm sure this is a difficult decission to make. Wish I knew what to say to make it easier. Keep us posted on how it goes. Prayers for you all.
 
Thinking of you Dani.
 
Thinking of you and your family! HUGS
 
Dani,
I am so shocked at this, wasn't aware that you had tried the peg feeding yet and we are of course just entering that stage, why was the morphine suggested I really don't understand. This has truly knocked me for six. I am so sorry that you are having to go through this but, ever hopeful they can get him more comfortable and he will be home soon. Please know you are in our thoughts xxx Ang
 
Thinking of you and Laurence. Hoping this will be a brief stay and home very soon.
Linda
 
My thoughts are with you Dani. I think Hospice always thinks of morphine first for some reason. They only manage discomfort it seems and drugs are the easiest way. Scary. I'm glad he's not ready for that! Will you still be able to take him for walks in the park Dear?
 
Dani,
I am so shocked at this, wasn't aware that you had tried the peg feeding yet and we are of course just entering that stage, why was the morphine suggested I really don't understand. This has truly knocked me for six. I am so sorry that you are having to go through this but, ever hopeful they can get him more comfortable and he will be home soon. Please know you are in our thoughts xxx Ang

Ang, Laurence had his PEG placed on 1 August 2011. We only flush it daily. He can eat by mouth but his breathing is poor so it takes so much effort. His appetite is poor too.

When the doctor saw L breathe she was shocked (I don't think she had much experience of MND related respiratory issues). She suggested morphine to 'ease' his breathing, and we know that in small quantities it can help. But it also supresses breathing. Plus it is addictive. Plus is causes constipation and so on and so forth. Neither of us want morphine at this stage. Laurence said: " I don't need morphine, I just need my vent', he was upset and he said he was a little offended that this was the first thing offered.

Hope we can go for a short walk in that park, if L manages to come off the vent for brief periods. Some kind of vent/bipap with an internal battery (oh that Trilogy that costs thousands) would be good...
 
My thoughts and prayers are with you and Laurence. I am so sorry you are going through this rough time. It breaks my heart for you.
 
Hi Dani
I find it weird in that we live under the same borough (health care system) but we are being offered different treatments. (Although I am sure there is no way Mick would be admitted anywhere voluntarily again to be honest) Our OT is a Team Leader from the hospice and it has never been suggested to go as an outpatient to be assessed. Peg feeding can be done via pump through the night or late evening and can work round L and what he wants,so don't know why L is having to be admitted, Dimple the dietitian is arranging this as I speak. I'm with L all the way regarding his vent and not having morphine. I am praying it will just be a short time stay for his peg feeding and L is home before you know it. xxxx Ang
 
Dani, thinking of you and L. I know taking the decision is so hard. I'm just hoping they help and that you get that walk in the park.
 
I agree with Ms. Pie. Hospice does seem to offer morphine as a fix all. They also offer oxygen a lot. I still have difficulty trying to explain why oxygen without NIV is not good for my mom. They argue with me about it, as if I'm just some caregiver with no education, and no medical degree. Good luck with it all Dani.

Laura
 
Hi Dani. Sorry to hear you're at this stage. Morphine is not a bad thing if he's having trouble with his breathing. Just minimal doses will help him so much. Bob was taking 1 mg every two hours when he felt air hunger. It helped him to no end. It didn't knock him out or make him sleepy. It just relaxed him and gave him so much comfort in breathing. Tell Laurence this and maybe he'll get a better feel for it. He won't feel "drugged". Take care sweet lady. Yasmin
 
Dani, thoughts and prayers are with you, your husband and family. I agree that the morphine will help ease his breathing. It made my husband feel as though he didn't have to struggle for his breath and he was still able to be alert and carry on conversations with his visitors. My husband was reluctant to start the morphine too, but it did help.
Good Luck and hope he is home soon.
Janis
 
Dani, I am so very sorry to read this about Laurence. I have no words of wisdom. I can only say, do what Laurence wants until it becomes obvious he is in true pain or discomfort. (By then, he will follow your lead.)

I hope he will be made comfortable and will have much more time with you and your son!

I send you my love... I send you courage...
 
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