We Talk Brain Tumours

Hi Maz64

I am really sorry to hear about your husband but gald to hear that you find the right type of care.

I lost my husband in August. and our experience was very different and it always felt like I had to keep fighting to get vertain things for my husband - I feel that with a diagnosis of GBM4 everything feels like that you don't have much time and keep waiitng seems to be an eternity/precious time you do not have.

I find it incredible that the type of care offered is so fragmented - I do however feel that all the different types of care is available but unless you ask you don't always get told the options.

Sadly for us my husband went into hospital for the last week - the worst place for us (not knowing that he would pass away so quickly).

Although I could stay with him and there was a bed down the corridor, my husband panicked if I wasn't in the hospital.  I slept in the upright hospital chair for 4 nights and had to get my own bedding!  Although I was given breakfast in the morning (but obly when the staff nurse wasn't looking).

After reading your reply to Fedup1, in hindsight, we had a fully funded care package in place and I wish that I had of known about the bupa care.

The care you and your husband received sounds so much better.

Thank you for sharing this - take care at this very difficult time.

Ann x

Thanks Ann,

It's so wrong that there are so many different scenarios on this rollercoaster, everyone should be given or at least offered the same level of care as should their families all receive the same level of support. I'm so grateful that despite the inevitable outcome, our experience was made more bearable by some wonderful caring people.

One of the care assistants at the nursing home was only 21, yet he had so much compassion to our situation, he would sit and hold my hand, agreeing with me when i sobbed that life was unfair, and after Brian died looked after my daughter while I got back there, I had only popped home to get some clean clothes and Brian died about 20 minutes after I left. When I went to thank him for how he had cared for us as a family, he genuinely didn't realise what he had done.

 I miss Brian so so much, no one (apart from people on here) really understands how cruel this dreadful disease is, and how your life changes overnight, my work is expecting me to go back next Monday, they phoned me on Wednesday, the day after Brian's funeral to discuss this, why do some people think because you've had the funeral that everything is ok,  I don't know what I want to do.

You take care x

Hi Maz64

I am really sorry to hear that Brian passed away when you had popped out for a while but as you say, he had alot of caring/kind people looking after him which is a blessing.

People are just so insensitive (does it really matter if you are not at work!) and to call the day after the funeral I find this absolutely discusting.

In my experience of grieving (not wanting to of experience it for one bit) is that three weeks after the funeral it started to get worse not better as reality was starting to set in.

I would say that after caring for the person you love with a BT is a very traumatic experience and will take along time to get over - if you do ever get over it.

The most important person in all of this is YOU - don't let them pressurise you into going back if you are not ready.  Perhaps your GP will sign you off for a while - get them to put depression/anxiety not bereavement.

Because of finacial reasons I have got myself a job (we worked for ourselves pre BT) and I can't do the business on my own.

In alot of ways I am looking forward to it as Steve passed away in August (still early days).

I will be helping spec needs people to live independantly - I want to work with people not accounts (30 years in accounts!).

The company I am going to be working for are really nice and acknowledged my recent bereavement and seem to understand how it can affect you - it doesn't seem to be a problem for them - perhaps because their ethos is caring.

On a positive note for you - perhaps in time, it is time to go down a new road and leave the 'old' job behind - obviously if this is what you want to do - time to meet new people as in my experience the new people I have met seem to understand what you have gone through.

Take care and sending you a hug

Ann x

Hi, 

this is only a short reply as I am just not in the mood (that sounds rude, sorry, but just a bit drained) mum is now in a bed downstairs (I'm amazed my dad didn't kill himself getting a double bed downstairs!!!) as she had got so frightened of falling she would no longer go up. So I suppose in th end it was just a case of waiting for her to experience the situation and then decide, rather than deciding in advance.

We now have the issue of only a shower downstairs and no shower seat (mum refuses) but I think it'll be a little trial and error and that she will come round. Mum's steroids were lowered to help her mood but it's impacted hugely on her speech and mobility so have increased again. What a rollercoaster. She is so sad and unhappy, it breaks my heart - and hers. 

Love to you all, Welcome newbies (sorry I can't look back to see your names) sorry I'm not responding with advice, my head isn't in the right place at the moment (need sleep after the first week back at work)

xox h  just noticed it wasn't that short! 

Maz64

Thank you for your reply. It sounds as though the bupa hospice was the ideal place for you and for Brian (incidently my dad is called Brian) I'm so sorry for your loss, and I understand how raw you must feel. People never cease to amaze me. Even though you are feeling at the lowest, you still are thinking of others and I really appreciate that. There was an article on the BBC website today about 'Good Samaritans' - I think this website is full of them!

A shame that doesn't apply to all people, and your boss sounds awful. He/she obviously has not been through something as horrific a losing a loved one, but a bit of compassion/thought is all that is needed. I've got a name for people like that but I'd better not put it on here as I might get banned.

We've only looked at the one home, so maybe we need to look at some more. The one we have already looked at had an nasty smell about it too. Really can't picture my dad there at all. Will see what alternatives are out there. Not sure if there is a BUPA hospice near here but will have a look into that. Also going to have a word with our Mac nurse to see what she can advise.

Thanks again for your reply.

Take care.

Hi IDOF

It really is a rollercoaster. I think it's one stomach churning ride from hell.

Take care

Hello, i don't know if this is the right place to ask people for advice from their own experience, but that's what i'm looking for.....

My father was diagnosed with a brain tumour in November 2009. He has had all the treatment it is possible to have and this was stopped in December last year. The tumour has begun to progress very aggressively and chemo etc will only make him worse/more tired. He has lost the ability to move anything on his right side, so as of a few days ago, is wheelchair bound. He is almost unable to speak at all now. He's at home with my Mum and both my sisters are kind of taking it in turns to stay there too. I live a few miles away but can only go every few days for a few hours, as i have 2 very young children. He's had many falls and 'slumps' between sofa and wheelchair and it's been impossible for my mum to move him (he's 6ft and quite big). I've had to go and help or my sisters have been around, but even between 2 people he's very difficult to lift. Despite his speech problems he's still able to communicate, just, but he is also sometimes frustrated, angry and can be unco-operative. I am very worried indeed that this is too much for my mum to cope with. They have had a recent visit to be assessed by a macmillan nurse, but she doesn't seem to want any nursing help/or feels it isn't right for them. The specialist nurse at the hospital doesn't seem to have suggested anything. 

Has anyone else had similar experiences?

Hi Loretta

I am really sorry to hear about your Dad.  Sadly I lost my husband in August.

If you click on my name you will see our horrible journey with GBM4.  Also, if you look back on this forum and on Glioblastoma Why Why Why you will see my replies to thers in the ast few days.

My husband was the same as your Dad 6ft tall and a big guy and with BT's the falls are very differement to just falling over and being able to get yourself up again.

I am not telling you what to do but you must try pursuade your Mum to have help (not going into too much detail) but toileting will become a real prblem if it isn't already so.

You urgently need to speak to your GP, Mac Nurse and District Nurses as you should be thinking about a hospital bed at home, lifting equipment (the DN can order these but they may come wquickly or you may have to wait).

Our Oncologist authorised a full care package for my husband (he has to do this for the funding) but again it can take a month to happen (time you may not have.)

My husband ended up in hospital longer then he needed to be because all of this wasn't in place in time (not knowing we were going to need it).

If your Dad has a fall especially between wheelchair and settee dial 999 and get the ambulance crew to come and help - this is what they do.

Make sure he is safe/comfortable/warm.

Another symptom is the getting angry bit (it's not the Dad you knew) it is the illness/BT.

As I have said in my previous posts, it was only  a matter of time before my husband broke a leg or he fell on me and I got injured.

If you click on forums or brain cancer (never know which one they are in) there is a forum I put up call Brain Tumours and Getting a Care Package.

I am frantically typing this as I know exactly what you are all going through.

I know that it is difficult to accept help (this is natural) we all resist it but in your Mum & Dad's case in my experience it is essential.

Have you discussed with the Mac nurse about hospice care - all of these things need to be inplace (it doesn't mean you have to use them but best to organise it sooner rather then later.

Hope this helps

Take care

Ann x

Thanks so much for your quick reply Ann. I'm sorry about your husband, it's very kind of you to keep replying to people like me who are still dealing with it all.

The mac nurse is going to get a hospital bed for the house, but don't know how long this will take. The main thing is that she doesn't want to have a stranger in the house all the time/on a regular basis. So far she has been adamant that she doesn't want this. I feel she needs it so that apart from getting physical help she can have a break from the stresses of the patient/carer relationship and just be with dad. She really wants him to stay at home till the end and i can see now that if she doesn't accept proper help that it may actually jeapordise this.

Do you have any experience of having nurses around the home and how much privacy you get?

Thanks again, it really helps to have people to talk to who have had similar (unfortunately horrible) experiences. i really don't know who else to ask as i can't go through the nurses that mum occasionaly talks to as i feel it would be going behind her back. Things move so fast it's hard for everyone to adapt to the changes that come along almost every day. I'll look on the forums you suggested too.

Loretta

Hi Loretta

Although I am a bit younger to your Mum (50 at the time) I was on my own other then my parents help (Dad 81 Mum 74).

My Mum & Dad helped me the best they could but again age is against you.

Because my husband was bed bound the carers will only come in if they are in a hospital bed (health and safety) + they need a hoist to hoist in/out of bed if needed (as I said, best to get equipment in place whether the hoist is used or not).

Although the carers were a gods end you still have the stress, only natural with this illness.

We live in a one bedroom bungalow so no rooms to go into so I got some rest but not much.

We had 2 carers 4 times a day from Sue Ryder (care package authorised by oncologist).

I also asked for a night carer (difficult to clean re: toileting on your own) not fair to husband etc.

Our District Nurse organised the night carer through an agency - they came in at 10pm stayed awake and left at 7am.

Sometimes they sit in the room with the patient or in another room (some times best to use a baby monitor when in another room) but if you want them to sit with your Dad incase something happens then they can be asked to wake your Mum if need be.

When you have other rooms to go into then the main carer can get more rest.

Like your Mum, before we moved to the bungalow (all because of the illness) I could not see how a carer could help us in our previous property.  The carer was offered by our District Nurse and I kept on saying NO - in hind sight I should have let them come in when we were 'just' managing because at that time I did not realise that Steve's mobilty would get worse to point that he never walked again.

Because I kept on saying NO Steve ended up in hospital because he collapsed and between us (me, Mum & Dad) we couldn't help him anymore.

He ended up in hospital and then the hospice for eight weeks because they wouldn't let him come home until it was safe for him.

If I hadn't of said No to the offer of help then some of the carers would have already have been in place much earlier and then my husband wouldn't have been in hospital for what was an eternity (hospital visiting is more difficult then having carers at home).

We also had Marie Curie at night aswell - organised by District Nurse.

All equipment is free/on loan - usually form British Red Cross.

I know it is difficult for you being the daughter but your Mum has to realise that she has to do the best for your Dad and inturn do the best for her - unfortunately, it will get worse for all of you and if the worst happens if can happen very quickly.

Your Mum will not be able to cope and you risk your Dad going into hospital which is much much worse then having 'strangers' coming in.

All of the carers are palliative care trained and we had atleast 10 carers from Sue Ryder and 6 different ones from the agency. They were all very nice people and as my husband's main carer I still played a massive part in his care and the carers never stopped me from helping them if I wanted to.

Usually with BT's the patient likes the main carer to be around otherwise they can get panicky/distressed.

In the end I was grateful that Steve came home albeit only for 19 days and that the carers were coming in to wash him, make him comfortable and when things got difficult I could call on them to come and help.

They will even prepare food and feed your Dad if need be.

All of this comes from hind sight and my experience.  Perhaps point out to your Mum that she risks your Dad being taken into hospital if she cannot cope and you may loose control i.e they won't let him come home again, what would she do if they both get injured (if your Mum gets injured then she will be no help for your Dad).

Let the carers do it and then you and your Mum can become a wife and daughter again and have quality time with your Dad.

I am happy for you to tell your Mum about my situation.

Sorry its a long one but I feel so desperate about your situation.

I find comfort in trying to help others in our community - for a long time I couldn't face coming on here but feel that if I can help even one person to try and make it a bit better through my own experience then that gives me pleasure.

Take care

Ann x