We Talk Brain Tumours

Dear FJC, I'm so sorry. My prayers are with you and your family. x

FJC,  I am so sorry to read your sad news, but glad that you were able to be with him. You have been such a wonderful support to him and others.

I am sorry I don't contribute very often these days, but I do try and catch up whenever possible.  Doreen is still with me, but god knows how!

Our very best wishes to all affected by this bloody dreadful disease. Martyn XXXX

FJC, sorry to hear about your loss, my thoughts are with you and your family.

I logged on today with a question, that I hoped someone or several people might be able to offer ideas on. My mum is now in the last weeks/months of fighting her GBM4, her treatment was stopped in October as the tumour had begun regrowing. Hers is in her left temporal lobe so her speech is suffering (both forgetting words and also slurred/broken words) and she is beginning to become confused and forgetful and is also quite weak. She can walk, but not far, and going upstairs tires her out. She can no longer find the strength to cut food. 

With her weakness in mind I wondered what you'd suggest/what you have done/did with regard to having a bed up or downstairs. Mum and dad's bedroom is upstairs, and up there there is a bath with a special seat in. Downstairs is also a toliet and shower cubical. One of mum's friends is a nurse and she seems to think that later when mum needs more pyhsical help (she does not want to go to hospice or hospital at all, so we are planning to do all her care at home, also she doesn't want 'strangers' doing much, so most physical/personal care will be done by dad)  that it will be hard for dad/nurses to do so within a double bed. IS this right? Also her friend thinks it's nice for mum to be downstairs in the middle of things (my friends mum, who died at home of bowel cancer last year was i a downstairs room for this reason) however mum has stated it's too noisy and wants to be upstairs (it shouldn't need to be noisy at all as it's just her and dad) 

How do you decide what's best. We want very much to follow mum's wishes and do what she would like. But I am worried that in doing this her care might suffer and that it will make looking after her much harder for dad. My mum's nurse friend has pointed out that the risk of mum going upstairs (which mum finds very tiring and we have mad steep twisty stairs) could mean that she gets confined up there simply cos of how steep the stairs are. Whereas with a bed downstairs she might be able to use more than one room (i.e/ nap/sleep in snug, but also go into lounge/kitchen) 

A very long message for a simple question. Is care up or downstairs more advisable?

Thanks, love to you all.

it's so frightening being so clueless at how to help mum best, and not entirely knowing what we're going to be up against. At times she's a very different person. She has spoken several times of wanting to be dead. I don't blame her really, she is so angry and sad, and we are for her too. 

hello all,

Hope Christmas has gone as well as it can do for everyone, I am so sorry to here of the losses in recent months.  I have been clearing flood water out from my MIL house for two days and we now have here with us for three months - lord save us!

Postmark - hope you are hanging in there, glad to here Doreen is still with you, I hope you can continue to find the strength to carry her on this journey. 

Fiji - on the subject of the room although your mum may be confused, moving 'downstairs' could feel just as final to her as moving to a hospice.  For the moment I would respect her wishes, there will sadly come a time when she may not notice the move as much or when she may feel that the strain she is putting on your dad is too much and will give in.  Try if you can to let it be her decision. You are right though being upstairs will be difficult to manage.  I remember each of these sorts of decisions being painful, especially when debated between 10 or so family members.  I would be happy with one line of thinking and then someone would say something to completely change my mind and make me feel guilty.  Thinking of you and your family.

Dear Fiji.  In the month before Christie died she found it difficult to cope with more then one person speaking...she said she just couldn't process things as fast and she said it made her feel more muddled than ever. Your mum may be feeling like that. Also, we had planned to get a room done for Christie downstairs. As it was She took really poorly on the 26th June and became bedridden that day. Between the distruct nurses, people such as family who wanted to see her and the Hospice at home nurses i don't think she felt or had the chance to feel alone. One of the things that we did, purely for Christie ,was not to put her into a hospital bed. She was in my bed as it a very large bed and we could lie down next to her day and night. There came a time in the last week of her life that she was unable to get up for the bathroom. However, the nurses saw to all her personal care and hygeine...and she kept her dignaity at all times. The reason we turned down the hospital bed was because at one stage with all the medical people there she felt as if she were in either a hospice/hospital, which she didn't want...and if she'd had the bed there would have been no convincing her otherwise....I suppose what I 'm saying is...if you have the support and your feel you are able to cope follow for as long as possible your mums wishes...you know what is right for you and her, don't think that you are doing things wrong, as you know that every decission you make you will have your mums best interests at heart.  

Love to you PEABS XXXXXXX

PS. My room was upstairs..and I also talked it through with all the carers, as well as Christie. Love to you XXXXXXX

Thanks, my mum is very much in charge of our house normally, and dad her deputy, so it's hard for him being in the driving seat at the moment, very worried about upsetting mum further as she is so sad and distressed at the mo. 

We definately want to follow her wishes (if I'm honest I think it'd be impossible not to) I think what you said about lots of people having opinions is right, and all opinions make sense when you hear them, so sometimes it's hard to know which advice to follow.

I can understand mum wants to be upstairs because quiet, private, is her own room, the bath is upstairs etc. It's just so dangerous her going up and down 2 times a day at least (bedtime and naptime) I suppose when she gets to the point where she can't manage that will be when we'll really have to decide. I think we just want to make sure we're prepared, but I agree, if we make changes to quickly it will be a depressing reality for mum. 

Thanks for the advice. We always check things with her first, and ultimately at the mo she is the decision maker. I think it's just gonna be so hard once she can't tell us, how do we know what we're doing is right? I suppose as long as we have the best intentions that's all we can do really. 

Love to all, and thanks PEABS for taking the time to help. x 

Hi IDOF

Unfortunately for us we did not have a choice with having a hospital bed and Steve was more comfortable in it anyway - but he was 6 feet tall and a big guy aswell, so it was easier all round for everyone concerned.

We also live in a bungalow so I turned the living room into his room and the bedroom into a sitting room.

It was still very homely and I tried to make it like home (it was a new home for us aswell).

Because Steve became totally bedbound in the last 12 weeks, the carers would only attend to his needs in a hospital bed because it has to go up and down.

Have you thought about putting a 'normal' bed downstairs for your mum and making the living room into a bedroom/living room so that it is still cosy or perhaps making upstairs the same so that your Mum doesn't have to keep going up the stairs.

Perhaps your Dad could move downstairs with her so she doesn't fell isolated.

Although Steve was still able to communicate with me he was ok with changes if I gently explained things to him and explained why we needed to do it.

In my experience of BT, the person usually feels comfortable when the main carer is around (less anxious) and puts their trust in them.

Perhaps you should discuss your concerns with the District Nurse as they were a great help in getting us the equipment - just bear in mind that the ordering of equipment can take some time and it maybe worth asking if you could provisionally order equipment but only have it delivered if and when you feel it is necessary.

I am only telling you this because of the situation we found ourselves in - Steve ended up in hospital and they wouldn't let him home until the equipment was in place - very desperate/upsetting times when all you wanted was for him to be at home and he couldn't come home.

Anything you decide will not be wrong for you and your Mum & Dad.

Take Care

Ann x

Dear Fiji, as we know too well everybody has such different experiences. I think that you nedd to know that Christie communicated with us right til the end. I know that for some people this doesn't happen. People have always found ways of communicating, and I;m sure your mum will let you know  her wishes, even when things change.

I think Ann has a valid point about hospital equipment, as it can take a few days to get to you. Also ask if there is a hospice at home care team. These may be independant from the hospice, but there are quite a few that exist in the community. They are qualified pallitive nurses, but they will come out any time day or night to assist if you need them. They work very closely with the GP also. They will also provide sitters that stay throughout the nigt if they are needed, if you need to get some rest...they are all nurses and qualified to give drugs/IV etc.

I found that they provided the most amazing emotional support for the whole family, whilst at the same time providing the best care that I've seen, for my daughter. Worth asking.

Take care love, and look after yourself as well.

PEABS

Thanks for your replies, busy day today so bit of a short response. But it's helped hearing other's views. I spoke to my dad briefly yesterday and he's not going to even consider doing anything yet, so I'm just going to have to leave it to his judgement. I think in his eyes it's his and my mum's issue and me and my brother are external to it. We can only help as much as we're allowed, and we both very much want to do what we can, and are concerned, but I suppose we have to try to let our parents do things as they wish. 

I would say Happy New Year, but I know I for one am dreading hearing that from people. So will just send my love instead. x