Struggling to accept help

Hi Crookedspire welcome to the forum and I am sorry to hear about what is happening  for you and your family.

It sounds like hubby has made his choice re to treat or not and he is obviously ok with that but how do you feel about that? I'll bet that you are  thinking why is someone asking about me when my husband is so unwell? Well the main reason is that you are important in all this as well and how you feel and what you think is important to.

I cant help feeling that you stepping away and letting the Carers do what they need to would give you some much needed head-space and hubby would be ok with the Carers when he has time to think about it otherwise it will continue to take its toll on you and then you become unwell and unable to care so its a vicious circle. If the care gets taken away then there is not safety net there for you both 

In respect of the toilet issues, whilst I recognise its hard for you and him it is maybe worth having a chat with the Palliative Care Team to see what they could do or speak to hubby about  to see if they can help.

None of this is easy and none of it makes life the least bit pleasant but do think about you in all this and take some time when it comes to keep your own strength up.

Sending some hugs your way meantime. xxx  

Thank you for your positive thoughts x

Hi Crookedspire,

So sorry to hear your situation, I know more or less what you are going through, and its horrible.

My husband, who like your partner has a grade 4 brain tumour, which was diagnosed last July. It was operated on and he has had chemo and radiotherapy. He has declined any more chemo because it gave him bad side effects (no sickness, very little hair loss) but he had a DVT, cellulitis and diabetes, as well as needing anti epilepsy drugs daily. 

We have had lots of support from friends and family and the doctors at our practice, as well as community nurses and our lovely Macmillan nurse. Nothing alters the fact that he is terminally ill and quite often says he just needs a shotgun! I agree with him that its no way to live, having been fit and healthy before this, but wouldn't go so far as to comply with his wishes!

I am doing all of my husbands personal care, which I really don't mind at all. I tell him that I took the vows in sickness and in health, and that's how I see it. I couldn't let him struggle. He does however insist that we don't share a bedroom because then neither of us would get any rest. If he needs the loo during the night he uses a urine bottle. Says it helps him to feel a bit independent!

I am going to get a cleaner though (something I've never had before) and have someone to help with the garden. I do feel that the point comes when I have to take advice and get some help, because I need to be strong for my husband.

Just to finish, sorry about the long detailed saga, I would say to your partner that you need the help as much as he does and that you need all your strength for the coming days, weeks, months or whatever.

I agree with Granny59, you must look after yourself and whatever your husband says, persuade him to accept help with personal care.

Sending best wishes to you,

LLamalover (Lynne)

It’s over a week since my original post and sadly due to my Partners deterioration the carers are now coming in and supporting me immensely, they are now doing his personal care as sadly he now needs changing every visit has he has become incontinent. Having a brain tumour is the most distressing part has sadly he has lost his speech and this is really difficult for us all, heartbreaking when we can’t understand what he’s trying to tell us. Love to you all x

Hello Crookedspire,

I am so sorry to hear about your husband’s deterioration in health. My last message seems so inappropriate, so I must apologise. Think I was feeling extra stressed yesterday.

It has to be so difficult for you and the family as well as for him. I agree that brain tumours just take away so much from a person. My husband has great difficulty with mobility, but also some days his concentration and memory are poor and he feels tired all the time. Other days he feels slightly better.

I wish you love and best wishes,

Lynne xx

Oh Crookedspire I am so sorry to read about this nightmare you're going through. My husband of 25year was diagnosed last Sept with a GBM4. He had surgery and the initial 6 weeks of treatment but has declined further treatment. Right from the off it was his speech and language was that impacted due to where the tumour was so I understand the frustrations somewhat. 

I wish I had words to console you but I don't. GBM4 is cruel and its horrible. It robs them of so much. 

Just wanted to reach out and let you know you're not alone. Hang in there. Stay strong. 

love n hugs

Wee Me xx

Hi Wee Me

It seems that many of us are going through this horrible time. One of the first doctors we saw said that GMB4 was rare, but obviously not rare enough!

I hope you are well yourself and your family are coping. 

Love

Llamalover

HI Llamalover  Funny we were told these were rare too. Definitely not rare enough!

I'm doing ok..I think. Probably like all of us some days are easier than others. My two kids (21 and 23) are coping well and have been my rocks throughout the last nine months.

We're just taking it all one step at a time.

Hope you and your family are coping ok. Stay strong.

love n hugs

Wee Me  xx

Hi,

Yes some days are easier than others. We are coping ok thanks. As you say just one day at a time.....feel bit better having shared feelings on here with others going through this.

love,

Llamalover 

Hi,

Yes some days are easier than others. We are coping ok thanks. As you say just one day at a time.....feel bit better having shared feelings on here with others going through this.

love,

Llamalover