End of life care

Hi and welcome to the online community

I haven't been in the same position as you but I noticed that you hadn't had any response to your post.

If you are at all worried about your husband then please give his palliative team or GP a call so that they can assess him. If you can't get in touch with them, because it's the weekend, then you can get in touch with NHS111 and they will be able to advise you what to do.

Sending a supportive ((hug))

Hi YD171,

I was a regular user of these forums almost 3 years ago, and havent been back for some time but I found myself clib=cking a link when going through old emails.

At that time I was in a similar position to you, my husband had been diagnosed with aggressive and untreatable lung and brain cancer and I was looking after him alone at home. Although this was obviously pre-covid I had very little outside support, we had no children and not much physical support from family due to distance, work commitments etc. I am disabled and was struggling to care for him, I couldnt go out as the brain mets caused him great confusion and in any case I cant drive, I hadnt been able to get out independently for several years and he had been my carer.

We had support from various sources without which I could not have managed to keep him at home which was his wish. The local hospice provided a great deal of support, a senior nurse visited every week and co-ordinated support from carers who visited daily 4 times daily at the end) and did whatever personal care was needed - washing, shaving, help to get him to the bathroom, and when that became impossible help with that too. Occupational therapists provided a reclining chair, bath lift, walker, wheelchair, commode and various other invaluable equipment. Ditrict nurses visited as needed for medical support and our GP visited regularly. Later I had 'waking nights' carers so I could get a decent nights sleep.

Your GP or local hospice should be able to help and get you a package of care to suit your needs. So sorry that you are going through this xx

Hi auntyma

Thank you for your response. We're still in the early days and hubby is still mobile, all be it a little unsteady. The information which you have provided, is most helpful. 

Thank you for your reply. It's much appreciated. 

I’m in a similar situation, not weeks left but inevitably going that way. We’re in isolation too, and isolation is what it feels like. I would say keep reaching out for help until you get it. 

Our Gp is fantastic and once I have rounded up the pallitave care nurse, she has been helpful too. I have some fantastic friends but I can't constantly bother them as they have families and their own lives to lead  Like you say, the isolation is awful. I'm having a particularly bad day today. I haven't even got dressed and that is so not me. At 55 yrs old, I feel this is so wrong. Also feeling very disappointed in family members as they can't even take 5 minutes to call their dad, to ask how he is, never mind asking after me or how I am. 

my mother has terminal breast cancer and it's hard to keep it together since I am the closest with her she confides in me the most about her trials and tribulations. I have often been finding it hard to not break down and start crying when I am talking to her. so far I have yet to cry in front of her, and the rest of my family since my thick skin has been the backbone for my devastated family. and i am afraid if i show how broken up about it i am it will all seem much worse for them. 

about your frustration of family members not reaching out, for some people a way of dealing with their grief is by avoiding the cause of it, which of course is not the best strategy but with my mother I've noticed is a common way of dealing with it. which I'm sure is hard on you. feeling like you're alone in your pain with no one to comfort you. we as a community are all here if you need support, and a lot of us are going through similar things.

Sending positive vibes, Bee xx

Thank you Bee. 

I'm now at my wits end, my mum is 82 and I've never been over her doorstep during lockdown. Today my sister, husband and his son (who isn't from the same household) arrived at mums, went in the house to set up a video player and made themselves a cup of tea. I'm absolutely furious. If anything happens to Mum, I live nearest to her but I can't deal with her as well as my husband. Where will they bee if it hits the fan???? 

Oh, it drives me mad when the risk is not taken seriously. my father saw friends yesterday which I am so bitter about! putting my already frail mother up to unnecessary risk! and there was nothing i could do since i didn't know this was happening until after it happened. I'm sure you're upset since you've regulated to the guidelines as much as you've wanted to see her. its honestly unfair. I'm sure all will be fine, thinking that apart from this they've been careful. but i agree its frustrating when people discount the rules without consulting other people that it could effect.

I will be fully honest with you , we found out my dad has advanced bowel and bladder cancer and i am helping to care for him with weeks left so with ppe on  mask and gloves I am now going in to his house to give my sister and mum slight respite in the day .