My husband has recently been diagnosed with an in operable and incurable glioblastoma brain tumor. Since his diagnosis his depression has gotten worse, I am caring for him on my own. We have no family in Ireland they are all back in the UK. I'm struggling to get the support I need my own health as decided to fail me with tonsillitis and laryngitis. He doesn't see me as some one looking out for his best interests he's had a number of incontinence issues of the last few days and gets very aggressive when i try to clean him i have no home help or carers sorted at this point they told me that they have people on there books who have been waiting since November. when I broke down and asked what am I supposed to do, there reply was 'i don't know'. I desperately need help I feel like I'm sinking. I just need someone to talk to. My husband was diagnosed on the 21st of December. But since the summer he's been segregating us from our friends. I have no one to turn to and no one to talk to. I know this may seem selfish of me thinking of my own needs and wants but I'm still only human and I do everything I can for him. Why can't I get the help I need for me. Please be honest and tell me if I'm being selfish. I understand this is hard for him I really do. I watch my caring, kind loving husband disappear and a man I don't know take his place. I know it's hard for him to come to terms with this as well. I'm only 27 and the last year has gone from great to out right cruel. I'm not sure how to handle this. I feel like I'm losing my own identity. Sarah.
I am so sorry to hear of the difficult time you and your husband are going through. There is help available. Firstly it would be great if you could phone us (cancer nurses) on our Nurseline at 1800 200 700 as we would like to talk you through all the options you might find helpful.
If it is difficult for you to phone firstly I am wondering if the palliative care team are involved in his care? Their involvement would be of great help. They would help regarding his depression, personality changes, liaising with his public health nurse/GP. respite care in the hospice just to get his symptoms managed.Has he got a medical card due to his advanced cancer etc.
If you rang or emailed us I would ask you what part of Ireland are you living in so I could direct you to the most appropriate support available whether it was counselling on a 1 to 1 or home care team calling.
It must be overwhelming for you. You are certainly not being selfish. You need all the help and support you can get and we would like to help you with that. Your husband will also benefit from you having the best support possible. Having a brain tumour can affect ones personality which compounds the difficulties around minding your husband.
I hope we will hear from you soon Sarah. This is our email address if easier firstname.lastname@example.org