Overwhelmed

Hi Perserva 

It does sound like everywhere around you is needing some help, I wonder if it might help you to ring our helpline to discuss what options might be available - things do tend to be a bit different depending on where you live and the wonders of the helpline is that they will know.

Are your children aware of the diagnosis, I know our son has known my wife has been ill for so much of his life but we have been lucky through school and college to have lots of support in place for him and especially when he asks questions it helped he was getting a consistent set of answers.

<<hugs>>

Steve

Hi Steve,

Thank you so much for your response. I think I just don't know where to start with it all. Have called the helpline today for the first time to talk about my emotions, its just hard to navigate where to begin. But yes, everyone does need support. My parents are the type who do not really want to ask for help, so have always come to me for help, but I have my own problems also.

My children are aware of the diagnosis for all of us. They have held it up for long and I'm so proud of them, though my daughter also has her own health concerns also.

Have been also trying to think practically as much as possible to try and sort things out but so hard with so many emotions involved. Have taken some time off work just to try and organise myself with everything and even thinking of my dad's funeral so that when it all happens its not too much.

How does one organise things with so much things going on. I just don't even know where to begin. Trying to take things day by day.

& hoping everything will be ok.

*Hugs*

X 

Hi Perserva,

you are trying to organise and do the impossible. In an ideal world it would be great to provide care at home but it is an enormous responsibility and it has put me over edge many times and I didn’t have half as much going on as you. The reality can be constantly looking for drs to increase pain meds as things progress day or night. Calling out District nurses, administering heavy medication and dealing with the challenges of brain cancer including mood swings, possible seizures and pain. 
At the end of the day you need to do what’s best for your dad and if the best place is the hospital or hospice then that’s what’s best for him. He will get the best specialist care he needs and the time you are together as a family will be quality time. Your mum will be a wife and you will be a daughter. You can do some of his care and support when visiting. In my experience my dad refused carers and I had to do it all. Dressings, medications, changing urostomy bags, pressure care, cooking, laundry, feeding etc. it was tough and if your parents aren’t good at asking for help then you will need to be honest about what you can or can’t cope with. 
I hope this doesn’t sound uncaring but maybe care at home isn’t what’s best for you all. 

sending you much love darling xxx

louli xx

Dear Louli,

Thank you so much for your response, its so hard not to feel guilty. But yes, if he were to come home I'm not fully sure how we can all cope. I'm already preparing myself that the next few months are going to be tough, but I need to manage my own self care also. As my health has been on its edge itself and my own teenage children still need me.

My dad is still in the hospital, approximately 3 weeks now from his diagnosis, still awaiting further updates from the doctors. I have already mentioned we are unable to cope, so will just have to see what happens.

Thank you for your advice and your honesty.

*Lots of Love*

I dont think anyone realises just how tough it can actually be caring for a loved one at home. After her terminal diagnosis, my partner came home to be cared for by me. It almost finished me. I am reasonably fit and well at 62, but do have depression and anxiety, I struggled so badly. I gave it everything I had, round the clock care. After 10 days, I was in a bad way, and feeling incredibly guilty for having to admit I couldn't cope. Macmillan were wonderful and acted very quickly to find us a hospice place, I can never thank them enough. Within 48 hours, my partner went into hospice care, she was immediately more comfortable and getting expert care. This allowed us, as Louli said above, to have quality time together where I wasnt so exhausted and she was getting the best care. She remained in the hospice for 6 weeks and died last week. I will be eternally grateful to them for caring for her in a way I couldn't.  I really hope you can get the help you have requested because it will make a world of difference in these last precious months. Sending hugs xx