Hello to you LLSO1.. I am so sorry to read about the terrible time that you are all  having. 

Your experience is an almost carbon copy of what our family are going through as I write  

Last September my husband was going through all the checks to have a heart ablation  He had passed all of the criteria.

In November a chest X-Ray revealed fluid on the lung.

An aspiration of fluid  revealed nothing. We were hopeful. Later, a high resolution scan revealed a mass. A biopsy revealed Sarcomoid Mesothelioma. This was all before Christmas.

We are all in disbelief that this has happened. Unfortunately my husband also was not advised treatment owing to his heart condition. But he would have refused it anyway.. fearing the after effects. Neither does he want to know the prognosis. This has been so hard for us all, because we have tried to keep up some sort of hope for him, yet knowing different.

His prognosis led us to believe that he may see most of the year through.

Just as in your case, he has gone downhill very rapidly. He went straight into depression, and needed Counselling. He wouldn’t talk about it at all, because he is trying to put it to the back of his mind. 

He has lost weight rapidly, and eats very little.. the same with fluids. He does prefer the top up ensure, but that gave him severe diarrhoea. Trying to keep him clean, without spreading germs was along with everything else was nightmarish, and exhausting.

He has taken to his bed for almost 6 months and is frail, and weak. He has had 2 spells in the hospice, which is a great help for both him and us for respite.

Perhaps this is something you could look into for your relative?

My husband has been in great pain. He is on Pregabilin x2 per day.. Duloxetine x 2 per day Methadone x 1 per day and Oromorph as and when needed. This is on top of his heart meds.

So sleeping is probably because of the drugs  

Yesterday twice daily care started for personal care, through the local hospice. Could this help your family?

We too have been fortunate to have many aids, but sadly the walker and wheelchair do not get used much.

 I do hope you can find the strength to support as a family, as we are trying to do  However, it is extremely hard, when you see this dreadful disease taking them in this way. 

If you have a hospice nearby, I urge you to seek them out.

They are amazing, and will help you all get through this. Counselling is available to you all  

Stay safe, and best wishes to you all. It’s not at all easy, but love will prevail..... xx

I was also going to mention that my husband has hallucinations too, but we think it is the drugs. 

Also, my daughters and I see a noticeable uplift in him when the nurses come... he has to conform.. and they are wonderful in making him laugh.

They all recognise what a struggle we (and you) as a family are all going through, and their visits take the strain off a lot. Xx

Thank you for your reply Johnny1221. My sister in law made a few calls yesterday. Unfortunately our local hospice doesnt offer respite but we have started having carers come twice a day for now and would you believe it, all that he said to us made him uncomfortable, to the carers it was great and very comfy, made us chuckle. We have the hospice coming out today to assess him and managed to get some more things ordered for his bed as he is far too long for it. I have heard from my sister in law this morning and last night was the first night he has slept all night solid, which is great news. Thanks again for replying because although you know you are not the only one going through something like this, you cant help but feel it.

You are very welcome! Are you saying that your Dad was much more affable with the visiting nurses than yourselves?

If so, we have the same. However it’s fine, we are more concerned that our Dad/husband is well treated and looked after. We all laugh too!! At least we know our family... also the drugs do alter their view somewhat. 

Good luck with everything. I hope we keep in touch. Xx

Just want to say thank you for the advice and support. Sadly my father in law passed away peacefully on Friday 5th, surrounded by his family, just how he would have wanted it. 

I am thinking of you and sending all my love. Its hard to see someone you love go through this its so new to all involved your scared of making a sound, just watching them constantly doing your best to make sure their comfortable walking on egg shells. You are doing the most fantastic thing in the world. Just being there. God bless..

I am so sorry for your loss. Please know that I am thinking of you all at this sad time. 

It has been so hard for you all, but as you say you were all with him to tell him that you love him.

Now at peace, I am sure that he will be wanting you all to take care of yourselves as best you can. 

I send my sincere best wishes to you and your family. Xx