Lock down when you are dying

Hi , I feel for you being unable to get out and away from what is a very stressful situation. It's easy to understand how difficult it must be for you. So often with brain tumours carers say it's like looking after a stranger, or a child. Do you have Skype or phone calls with friends or perhaps escape to another room for a while?

Thinking of you,

Hi, I am a carer for my dad, his wife has been caring for him, for 3, by herself alone when he was diagnosed, with Leukeamia. But January, he got a lot weaker and needed more help.  So the oncology dept was going to send a therapist, to see what help he needed. But he was scared and did not want to have a stranger looking after him. So I applied to be his carer. I was already doing it, so I might as well do it officially. I got him up, washed, breakfast and lunch etc. and would just walk behind him for support , while his wife was working, so on her days at work I would look after him. He has deteriorated, rapidly, since before Christmas.

. It has gone to accute leukaemia, which is no longer treatable and very aggressive. . He was put on 12 week isolation but I'm allowed to see him. we live nearby so his son can see him also, (unusual circumstances, with the isolation and distancing.) 

He has got too ill to be able to move him. He is now bed ridden, cannot do anything for himself., he isn;t has not enough oxygen in his blood, going to his brain, so he now has vascular dementia setting in, but worse every day. He can only see his son and I nobody else. 

We haven't been told how long he has, but we know it isn't long. I must admit, it has been really hard for me the  last 2 weeks, I felt so stretched. all I wanted to do was cry... I was tired, mentally and physically. 

So please, I wanted to let you know, that you are not on your own.  I know exactly how hard it is, to see someone you love hurt so much.and how much it hurts. Dad is getting very confused, snappy and aggressive, which is really hurtful, but I know he doesn't mean it. 

St Giles have told us, If it gets too much for us, they will send their nurses to help.  Is there no one that can help you, to relieve you and give you some respite, that you so desperately need? 

Take care of yourself and stay safe. 

Thank you for taking the time to write. I feel somewhat ashamed that I am expecting some kind of empathy from him. But it feels like I am on constant call. No time for myself. He gets agitated when he can’t see me. I can’t talk on a phone, chat on skype etc as he is always there over my shoulder. Even at this moment I’m in the bathroom. Sneaking on my iPad . I feel bad as I just want my life back

Please don't feel bad . Your feelings are perfectly normal. You have been and continue to be an amazing carer and wonderful support to your partner. Everyone has a limit and I certainly need space for myself to phone and chat to friends; it must be suffocating for you. There is no shame in needing some time alone; our minds need that time to process the day and get our thoughts in order and it is the lack of that personal space that can endanger our own mental and emotional health.  You're not 'sneaking', you're taking the absolute minimal amount of time to survive. Hang in there, dig deep into your inner wells of strength to get through this lockdown and take whatever bathroom chat time you can get.

Love and hugs,

Hi,

I remembered your name from the glioblastoma page, I too have a husband with GMB4, but we are at different stages. Please don't think you're wrong for wanting time/space to yourself. I felt like that in the early days, Graham was diagnosed in Sept, I too felt bad. Everything is made worse now with the isolation. For me atm Graham is well, treatment stopped but still well and functioning apart from short term memory issues. I'm aware this can change any minute.

You take care, you're clearly an amazing person.

xx

My wife also has terminal cancer and this lock down has totally destroyed every plan we had. It’s heart breaking , and the worry of everything is close to over whelming me. She can’t go to Hospice as we can’t visit , I get very little help as nurses and doctors are busy or avoiding house visits.  All I can. Say to try and help is lie down at least once a day and try and get a mindfulness mediation thing from YouTube and do breathing exercise and mindfulness for 10 minutes or more . It sounds stupid but it has helped me relax for at least a short time. 

Sending you hug's. 

We're in a very similar situation. 

My husband is also at end of life in lockdown. 

I've been told that it's a case of week's not months. 

He was diagnosed last August with gullet cancer and has been through a round of chemo without any good results. 

We were told that because it has damaged his liver function there's no further treatment available. 

I completely understand the feeling of not being able to help ease the suffering of this terrible situation. 

Each day seems to bring a fresh problem. 

I have nurses at the end of the telephone,  but still feel so 'on my own ' 

Keep strong sweetheart x

Mandy 

Hi there, just wanted to say that I am thinking of you all. Wish that I could do or say something that could  be of more use. Xxxxxx

Sending you hugs. Bless you

its bloody horrible isn’t it

add me as friend 

We are in the same position. My husband got his full diagnosis and very short prognosis about the time lockdown was started. We found out on 26th March that he only had 6-12 weeks so we are trying to deal with that, lock down, social distancing when the family wants to give us hugs, overstretched support services etc etc. I just want to howl with grief and fear.