Scared and exhausted - wife of GBM sufferer

[jan52]

My husband, John, was diagnosed with a GBM in January this year. He had surgery to remove the tumour then two days later had a massive bleed into the operation site leaving him paralyzed down the left side. After a week in hospital he was transferred to rehab where he spent two weeks learning how to walk and talk again. He worked hard at getting the use of his left side back and could walk a little with a quad stick when he came home. Had our home assessed and got in a both chair, toilet chair, wheelchair etc.... Started radiation/Temodal in March (30 days of rads & 42 days of chemo). Six week break then round two of chemo.....sick as a dog and begun losing what little function he had left in his left arm and leg! Had an MRI on 1st August after 4 cycles of chemo and it showed regrowth, a tumour about the same size as the first along with another smaller one. Oncologist said there was no point in continuing chemo and basically told him to go home and get comfortable and the surgeon said there was no Wayne could operate again because of what had happened last time and the depth of the tumour in the brain. Got palliative care involved and here we are! He rapidly weakened and has been confined to a hospital bed in our lounge room. I am his sole carer and apart from a visit each morning from the community nurse to help me change his sheets I do everything for him. His mind is still pretty sharp apart from some memory problems. His sight is deteriorating and he suffers daily from anxiety attacks. He has seizures from time to time, which I have learned to deal with, although they scare me. His surgeon said back in August that it was doubtful that he would make Christmas but here he still is. I can't be out of the room for more than a few minutes at a time without him getting anxious but he does sleep pretty well at night thanks to some good meds! Nobody seems to know how long he has and I don't know how much l can go on this way. He is adamant he wants to stay at home to die. I hate that I am starting to get irritated at him at times and I feel that I'm going to lose my mind. Has anyone else had the feeling of not being able to continue? Am I being unfair? I've been caring for him for so long now........

[netty]

Hi, I am beginning (I think) to go down the path you are at but you just never know with the rotton thing. After his second craniotomy in June he had a second lot of radiation for six weeks (because it was so far away from the first radiation site) which wasn't too bad just extremely tiring. Then after a month break we started 6 more months of Temodal..first 5 days of each month. We are just on the second month and deterioration has been rapid. He had lost about 7kgs, is very depressed, crying alot and also having major anxiety attacks. He is really only tolerating sustagen atm and meds which give him a good nights sleep although he we tell me he didn't sleep at all. I am also very scared and exhausted. A friend has contacted pallative care for me, and I know I have to go through with it but it is breaking my heart in a million pieces. The doctors are bringing his Dec MRI to 3 weeks time and then will make the decision whether to withdraw treatment. At this stage he has weakness but can get around and thankgoodness he has not had a seizure, that would be so frightening for you. I too get irritated and grumpy at him sometimes then feel really bad but I think that is ok we have emotions too and like yourself I am doing it alone. I do have 3 children but they are at school so running around for them also is exhausting me..I catch a nanna nap when I can but you sound like you are doing such a good job and should be so proud of the care you are giving your husband. I do not think you are being unfair at all. It is good to read your post for preparation but also makes me scared as hell that this is most likely to get a whole lot worse and the time frame and unknowns are really scary. Take care of yourself and hugs to you, you are not the only one fighting this way and I so wish it was none of us because like you its been so much stress for so long.

[little_stitcher]

I admire both of you so much. What you are both doing for your husbands is huge, and really hard. I'm sending big hugs. Emily

[jan52]

Oh Netty, I'm so sorry to hear about your hubby. If I can give any advice it would be to make sure he gets used to you getting out of the house, even for a short walk. You will need those little breaks to regroup and well, just to be able to breathe! I made the mistake of being there all the time, never leaving him alone. Now I can't leave him alone because of the seizures and it's got to the point of not being able to leave the room for more than a few minutes or he panics. If you can get him used to a friend or neighbour sitting with him while you 'do your own thing' you will appreciate being able to leave him for short periods later on :) Good luck with the MRI! I really hope that you can get some help in caring for him. Thank you for your kind words, we do the best we can don't we. If you have any questions or just need a shoulder feel free to message me :) Emily, thank you so much for the hugs and encouragement, it is appreciated more than you know :) Jan

[storm]

Hi Its sh_t, crap, hard & then you get to deal with the extreme anxiety each time you leave the room, and you wonder about your emotions after consistently walking on the edge of this abyss. Welcome to the world of extreme pre grief, and of what is there lurking around that corner. Get respite, look after yourself, there is no one else to take your place if you collapse unless he goes to hospital/nursing home. And this journey takes you there, to that area of exhaustion. It’s a rotten journey, but if I had to do it again I would turn to embrace Lorraine's journey. The journey of bonding, intimacy, caring, is like nothing else as Lorraine shared her looming death with me ...it makes some meaning to such a black hole. I look back in wonderment, 4 weeks on Monday at 5.43pm Hugs Geoff

[jan52]

Hi Geoff, Sorry to hear of your wife's passing. I wonder sometimes if I will feel mostly relief when John passes, relief that he is no longer having to suffer, but also relief at not having to watch his deterioration. I worry that the memories of our marriage, the good memories will be overshadowed by the memories of his illness. He is a good man and our relationship has always been wonderful so I try to hang onto those emotions in times that he seems like a stranger, such as when he is pouting and sulking because we have run out of chocolate. My daughter usually comes and sits with him for a couple of hours on Tuesdays but her husbands days off work have just changed so she won't be coming til the weekend (they have three small children). It sounds silly to most people but I feel devastated as I was looking forward to a couple of hours away from the stress even though I would have done chores like picking up more medications and grabbing a few things from the supermarket. Saturday seems so far away! thanks for your reply Geoff and I hope you have found some peace 🙂

[peanutz]

Speaking from my experience, you will feel relief. The good memories will be there and not overshadowed by the memories of your husband's illness. It's sad to see someone we love is not him/herself but I'm sure you understand that it's not his fault and he tries his best. My partner did apologise to me and told my best friend that he recognised there were times when he was not himself and misbehaved and he felt sorry for doing that. Have you contacted a palliative care team? They should be able to help you out when you need a break. I think they call it respite care or something. I didn't get much chance to learn these vocabularies and terminologies.

[storm]

Hi jan52 When Lorraine died, I had feelings of relief,that that stage is over - the extreme stress of waiting for something that cant be changed. Then the move into the funeral stage; arrangements to be made (try to organize as much as possible so that you don't have to make big decisions about the funeral, (if you have one) and if and what you and others may want to say at the eulogy feelings of grief rawness anger, resentment, sadness of the good qualities, guilt, they are all there to be experienced at different stages and times. The good times are the ones that predominate though Wow that loss of that time you were planning - Its a grief and loss thing in miniature to have just some time to yourself. I would feel devastated too Hugs Geoff non-Hodgkin lymphoma

[jan52]

Wow! John has been quite 'out if it' for a week now. He may get a few words out then seems to fall asleep only to jolt awake 30 seconds later to try to finish what he is saying or to start all over again. Or, even worse, to say something that is totally absurd or unrelated. He'll say he needs the urinal and then falls asleep before he starts multiple times while I'm standing there with the bottle firmly in place. Sometimes he doesn't need to go at all or says he's finished only for me to take the bottle away and then he pees. He sometimes needs help to eat now and his appetite isn't what it was (even tho the dex makes sure he still wants to eat). He can't concentrate on TV or on his iPad, which he loves. The anxiety is acute and he can't understand why i won't help him up to sit on the side of the bed or in a chair. He can't support himself upright at all, as it is I have him propped up on his 'good' side as he leans that way and sometimes even pushes the side bar of his hospital bed outwards so he is in danger of falling out (he is a big man). I have been instructed by palliative care to give him clonazepam by tablet 3 x daily and by drops every time his anxiety gets out if control which is usually a couple of times a day. I am explaining all this so that you might understand my shock (and horror) when pal care finally came to see him after I kept bugging them and what happened? He perks right up for the first time (well perked up for him anyway), manages to answe all questions and explain things to the nurse and even offered a cup of coffee! I tried to explain to pal care that he hadn't been that bright for a week or so but they just smiled at me, said yes, that often happens. I asked them how long they think he may have and they told me he may linger like that for months! I'm not sure I can go on for months more! I haven't had a day off in 10 months of caring for him! They did bring up the subject of respite to him but, as usual, he flatly refused. I explained to them that he would want me to be there with him 24 hours a day anyway so it would be pointless. I'm getting very depressed being in this house day in and day out. I rarely leave one room except for short periods when he is sleeping to wash up, put washing out etc... Can they be right? Does he still have months? I don't want to lose him, but I mostly have already anyway? This disease is so cruel......to everyone!

[peanutz]

Hi Jan, your husband sounds like my partner in a way. When he was with other people, I think he pushed himself a bit more to be the best as he possible could push himself to be. I think you need to have a good talk to your husband of your need for a break. I'm sure he would understand even though he might not be happy and it's something you have to push for to keep you sane and be able to keep going. I heard about one girl who has GBM and the doctor told her family that she has only a couple of weeks but she's still here after 2 months. My partner was told he would have 3-6 months and he ended up having only 2 weeks. A day before he passed away, we were making a plan with his doctor to take him home from inpatient palliative care unit and the doctor told us that we talked about weeks or months here but then the next day he's gone. I guess you can't tell.

[storm]

Hi jan Oncologist at hospital said Lorraine could be 2 weeks to 2 months. Lorraine lasted 2 months. So between Lorraine and Nat's husband its difficult to say how long he may linger. Get some respite ASAP before he gets worse so that you can cope. Your emotions are being taken to extreme levels living in that confined room. You need to take charge for both of you Hugs Geoff

[jan52]

John's neurosurgeon told John in August when his MRI showed the tumour had grown back, as big as it was before surgery that it was very doubtful he would make Christmas. The oncologist said in mid August to 'go home and get comfortable' so here I was thinking we were really at the lasted of all their predictions, way over time really. It's been about 3 months since he was told he was at the end of this terrible journey. How much worse will he get Geoff? There is so very little left of what was my husband now. Is it possible that he just won't let go? The poor man has suffered enough. Peanutz, I'm sorry you didn't get more time with your partner. Yes it does seem that they 'give it all' for a visitor although he has been mostly 'out' ever since. Maybe I'll get some sleep! Take care all of you and thanks for letting me rave 🙂

[storm]

Hi Jan How are you coping today? Hugs Geoff

[jan52]

I'm coping, tx Geoff. Was supposed to get out for a walk today while some friends sat with John but just as I was supposed to leave he experienced acute anxiety so I had to give him medication and sit with him while it calmed him down, maybe another day eh? Talked to the community nurse this morning about what pal care said yesterday and she assured me "months" was definitely not what he has left, that if he was still here in a months time she would be very surprised, in fact, a couple of weeks would be more accurate. I tend to believe her as she sees the decline from day to day. How are you traveling Geoff?

[storm]

Hi Jan Sounds really hard for you, and especially frustrating not being able to get out, John being so needy. With what you wrote I thought John was getting close to the end, my experience is too limited to comment. My anxiety went into overdrive each new stage Lorraine declined into, so its a bit of reverse situation to yours. I am with Lorraine's sister in NZ for 2 weeks, its good/comforting to be here with others. I see or hear things Lorraine used to talk of so my grief comes and goes - its less intense as time goes. (rolled up cut grass bales scattered over a farmers field - she used to call them elephant turds). Hugs Geoff

[jan52]

Hi Geoff, Glad you are getting to spend some time with Lorraine's family and to 'wander through' her memories of NZ and the elephant turds. I hope it helps ease the pain you feel at not having her with you. John is deteriorating day by day. Hard to sit and watch as his 'essence' leaves and he becomes more and more inaccessible to me. No conversations like we used to have, no conversations at all. A once vibrant, loving man with a wicked sense of humour, now nothing more than a shell of who he was, breaks my heart to have to just sit by and watch it happen. Feels in many ways as if I've already lost him.

[storm]

Hi Jan NZ went to Wellington Hospital today with Lorraine's sister for her chemo appointment, seeing the chairs, the equipment, the noise of the ward - some of the experiences come back Lorraine went the same way as Terese experienced with her husband, Stuart(see thread - GBM, time is getting shorter). The urinary and bowel issues, getting to the toilet is difficult to deal with. Physically it was hard enough for me - getting Lorraine to the toilet in time, then as her physical abilities further declined a catheter helped but the cleaning up after defecating along with moving her around a bed to change the linen (especially after she had the bowel blockages and in pain), it so much worse for a woman to do. The loss of communication - what we had - also gone. I continued to talk to her in the later stages while she was full of morphine, played some of her music, asked for forgiveness for my shortcomings (I have a flirtatious nature) for any any pain. Lorraine was also a shell of what she was and became a body. It is so hard to watch Hugs Geoff

[netty]

Hi Jan, Oh I so hate this GBM crap..my hubby was really quite good when we took a trip to Somerset Dam (QLD) on sat...yet when we get home I cannot get a conversation out of him..one word answers then other conversations are so confusing I have no idea and he just say don't worry and closes up. I am so up and down..most days he lies down alot and won't talk then for a while he is perky like nothing is wrong..I just don't get it, it is so distressing for the kids and I plus must be for him but don't seem to find an answer why in amongst these bad days he perks up ??? I pray for you all on this site and what you are going through it is so courageous of you. I want to come on and find out what is ahead of me but then it freaks me out of what is to come in the future. All I can say is hugs to you, you are so brave and like me and many others why us? why so much pain?? GBM sux. Take care Wynette

[jan52]

Dear Wynette I totally empathise with you. It's not only those with the GBM that suffer emotionally. I know that I am so up and down myself that sometimes I feel like I have multiple personalities. Today I was so depressed right from the time I awoke, didn't want to face the day and what it might bring. That is usual for me to wake dreading the day but I usually shake it off and get on with things. Not today, it just clung to me lke a dark cloud over my head. It wasn't until tonight that I looked at my darling laying there so helpless and I broke down, sobbed my heart out with my head on his chest. I'm not usually much of a crier and I think that is part of the problem, I don't release pent up emotions and stress. Well after my cry I felt the depression lift a little. God I miss being able to cuddle up with John, I miss him as my husband, my lover and my best friend! I can't tell you why so much pain and heartache, nature of this damn beast I guess? Yes GBM sux! Hugs, Jan

[storm]

Hi Jan Have you got yourself out as yet? Re: inaccessibility - Lorraine's mind deteriorated just after our European trip - from December where she was just starting to say some slightly inappropriate things and ruffled some other people's feathers. She seemed to become more aware of what she was saying and pulled back. Some months later she talked less with others. Approximately May, her language became garbled and I had no idea what she was trying to say. She started to become quieter as a result. Later she would not focus on what I asked with closed questions repeated up to 10 times - she just drifted off(She was a highly intelligent woman) It was hard. And now it is so hard for you being in the mist of this "experience" too. With Lorraine I reasoned that the tumor &/or the swelling partially blocks then slowly totally blocked her attention and language center of her brain. This helped me in my understanding of her tumor and my ability to relate with her. So her conscious slowly left me till there was her shell. Now I ask what physical part is the essence of Lorraine as she died/disintegrated over that last 10 months, what is consciousness, where is her soul, where is my woman. Biggest hugs Geoff

[jan52]

Hi Geoff, no haven't got out yet, something always seems to get in the way of my plans. I am DEFINITELY going to get out this Saturday morning. I have to! I am going to take myself to a little cafe and have lunch overlooking the lake. I love water, I find it soothing to the soul. My daughter will handle anything that comes up here, including any anxiety, although that seems to have given way to a more of a feeling of peace for him. I tell myself that it is not my darling that behaves strangely, it is the tumour ! It helps to deal with things doesn't it. I miss John already, he's still here and he seems comforted by my touch but I miss the comfort being a two way street. Sending you hugs and all my support as you work through your grief. Be kind to yourself, you took good care of Lorraine, now takevcarevof yourself. Jan

[storm]

Thanks jan As you as said DEFINITELY I expect a full and detailed report of the Saturday lake happenings. It is written Hugs Geoff