Husband with grade 4 brain tumour

Hi Llamalover

I'm sorry to read that you're struggling with knowing how much to do for your husband. I'm sure that he appreciates what you're doing for him and it does sound like you're doing an incredible job.

I can see that you're a member of the supporting someone with incurable cancer group and I hope you don't mind me suggesting that you perhaps copy and paste your post into a new one in that group as I'm sure there'll be people there who have felt as you do now who can give you support and suggest ways that they have found to make their loved one as comfortable as possible.

Sending ((hugs))

Hi Latchbrook,

Many thanks for your advice and suggestion. We have had a better day today (yesterday was horrible) although Father's Day visits from the family wore him out. 

We have moved the bed into a better position in the room and he can see the TV better now which helps him. (He is quite short-sighted anyway, but unfortunately the steroids have given him cataracts)!

Best Wishes,

Llamalover xx

I'm glad to hear things were better for you today Llamalover. I hope it continues

Hi Llamalover

I'm so sorry you find yourself in this awful position. 

My husband was diagnosed with GBM4 in August 19. His tumour has been progressing since the start of this year. 

I really feel for you and your husband. I know that when we reach this point ourselves I know that I want my husband to know that he will never be a burden,  I love him and would do anything for him, I'm sure you feel exactly the same way.  I have no idea how you convince someone of that once they feel that they are a burden though. 

It sounds like talking about your grandchildren and daughters is what will engage him in conversation. Although it's hard to sustain I imagine, especially if he doesn't want to talk at all.  I know with my husband sometimes he does just want to sit in quiet and needs peace. We just sit in silence for a while but he knows I'm there if he needs anything. 

I'm sure that you are getting it right for him, just being there with him is a huge thing and I'm sure he knows how much you love him

Sending love and best wishes to you both x

Hi LC50

Yes it is an awful position for all of us in this Community. The support is so good though. Thanks for replying to me.

I have told my husband that he isn't a burden, but  I can't change his mind. He is in a low mood today, I cant seem to do anything right, so I have left him watching TV. Sounds horrible of me I know, but sometimes we just need space. He has always been the quiet one, whereas I probably do talk too much! He has had various visitors every day this week and I think it has worn him out. Its ok if they just stay for an hour or so, but some are here for much longer. They can see he is struggling - looks tired etc, but they just don't take the hint. I end up more or less telling people that he is really tired and needs a rest or expecting the carers ( which is sometimes true).

When he talks of going for respite care (if there is any at the moment) I now agree that it might be a good thing. At one time, I couldn't bear the thought of it, but realise that it is his life and his choice. 

I am here for him always and he knows that, whatever happens, he is my husband and we do love each other.

Love,

Llamalover xx

Hi LL

I could have written that myself. It's definitely not horrible of you to leave him watching TV. This must be terrible for our husband's and its no wonder they get very low/depressed. I know it can be a result of the tumour too.

My husband was a fit, otherwise healthy 49 year old when he had a seizure out of the blue. He'd just got home from his busy job on a Friday evening and there starred this 'journey' I can barely wake him this morning.  He slept 11 hours through the night waking just once to ask for paracetamol for his awful headache. He got up had some breakfast and now he's sleeping in the chair. 

I absolutely understand what you're saying about visitors.  My husband is exhausted after about an hour with visitors.  I've started making it clear that they are welcome in the morning around 11ish and  they know not to stay long now. Except our children who are always welcome anytime. It doesn't wear him out quite as much when they come here. I know it's different for you as you have gorgeous grandchildren and for as much lightness and joy they bring they are tiring. 

I think you're right about it being your husband's decision about respite care. I imagine you're like us and have coped with all this together up until now. We have very much been a team and he knows I'll support him whatever he wants but we're getting to the point now when I feel like I've just got to support whatever decision he makes about chemo etc. If I'm honest I really can't see how he'll cope with another cycle of chemo when he's this exhausted now but he seems determined to take it and I'll be there to care for him .

Take care

Lisa x

Hi LC50 

Well, as you say our experiences mirror each others! (Sadly).

My husband was a fit and healthy 69 year old, hadn't smoked, didn't really drink and we tried to eat healthily on the whole. Nothing it would seem matters with this disease. One thing he has never had are headaches, strangely enough! His lack of mobility is the thing that has upset him most, if he had been able to get out more it would have helped his mood, I'm sure. His speech and concentration are worse than they were, but usually just when he is really tired.

He refused a second round of chemo because of serious side effects, but as you do, I support whatever decision he makes. He is very tired all the time, watching TV mostly, (Formula 1 at the moment). It must be desperately boring for him, so no wonder he has just said, he wants this all to end (and he didn't mean the motor racing)! Still upsets me when he says that, but I try not to show it. We just have to carry on as best we can don't we?

Our daughters and two grandchildren are a joy to us, I don't know how we would manage without seeing them regularly. 

Take good care of yourself,

LL (Lynne)xx