[janey3038Participant]

Hi my dad is at stage 3 of myeloma with 80% plasma cancerous cells barts put him on a chemotherapy end of line drug called pomalidomide which he lasted on for 5 days and ended up in hospital last Wednesday with severe bleeding from nose and chest infection I am getting no answers from hospital even tho I am next of kin.  They won’t put him back on treatment but have given jo reason I have asked for some help at home and wheelchair which they have refused.  I am moving him into my house as his mobility is bad and he is confused this is someone who 2 weeks ago was up and down ladders working on his boat.  I can’t give my job up as I am single parent with 2 children and I need to know what time he has left if they not treating the disease any further.

Help !!!!! He’s only 68 too xx

[duskParticipant]

Dear Janey

So sorry to hear about your dad and the problem of trying to work out what is happening when you are not being informed. Having Power of Attorney for Health and Welfare for your father in a time he is confused would have given you the right to get information on his behalf.

Some infections can cause confusion. Is he still on antibiotics of any sort, as I assume he would have been put on them if taken into hospital? He would have to discontinue treatment if there is still any sign of infection.

Who has refused help at home for him?  He should and yourself be assessed for support needed before discharge if he is in need of this. You could contact social service: means testing applies.

If he is terminally ill then usually hospice / palliative care would be discussed. So you may need to persist in finding out what is expected in terms of his ongoing care and treatment at home.

[jeff605Participant]

Hi, so sorry to hear of the way you are being treated, and the lack of help being offered. When I was put onto treatment Macmillan contacted me if I remember correctly, and arranged such things as benefits, alterations in the house, blue badge. Can I suggest you contact them to see if they can help. As Dusk said, whenever I have been on antibiotics the chemotherapy was stopped until I was clear of the infection – usually chest infections. I hope you manage to get some help at what is such a stressful time for you and your father. I understand only too well the rapid change from being an active person to an very much slowed down old man, it is a very disturbing thing to live with, and is no doubt causing your father distress. Jeff

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