GBM Carers - how could you handle it?

[peanutz]

I thought getting things out of my system by writing about what I experience on this site would help. Not sure it works. I feel that I'm full with anger and sadness but I don't know who to talk to. I'm a private person and I try not to be a cry baby. My best friend is my partner and now he seems to live in his own world, deal with his own problem and try to fight with his exhaustion which seems to be all the time now. I used to tell him how I feel and he expressed concern now he hardly acknowledges it. I know what I'm dealing with can't be compared with what he's going through but he just doesn't try to make my life easier either. When he's sick, he doesn't want to go to the hospital. When he's struggle physically, he asks no help but for time to gain his strength which in a way I admire his spirit and stubbornness. Going to work is kind of a relief, getting away from the problem at home but worry me to death at the same time. He says he's fine but I just have to clean up after him wherever he goes... toilet, bathroom, kitchen, bedroom...... It's not pleasant and domestic work has never ever been my thing, let alone cleaning up toilet every time I want to use, picking up someone's shit, and smell it all over the house. There is no help I can get even I can afford. No cleaner, no gardener, no plumber, no builder, no palliative care. My partner does not want anyone except me and his family to step into our house. He believes he'll get better and being able to take care of what has to be done himself. He hangs on to stuff that he has accumulated through his life and we live with boxes every where around the house. There are so many incomplete projects lying around every corner and I'm f#@$! sick of it!! He said he's not giving up but he hates Dex and does not make an effort to take it. I've been contacting so many oncologists both in Australia and overseas looking for treatment options but as everyone knows there is no cure and we are nearly at the end of the road. I don't really know how to get this message across to him.

[exhausted]

Oh dear Nat, you sound so exhausted, the road is tough. I do understand as your story is similar to mine. The denial of reality is unbeleivable and unfair on us but there is no way to change the path they choose for themselves. All you can do is live one day at a time and look after yourself as well. But in saying that I beleive it is reasonable to demand support for yourself regardless of his opposition. Get in touch with palliative care, the nurses are amazing and I have found that my partner is far more willing to hear the reality from them than me. GBM is a relentless march toward the inevitable I think, and living with the reality of it, I for one am sick to death of hearing the hope message, I'm at the point where I just want to face the reality with patience and compassion for him and me. Hugs Terese.

[peanutz]

Thanks Terese. I have decided to get in touch with palliative care tomorrow and will get his brother to be here at the same time. Just in case he gets so crossed. I can deal with him getting angry with me but it would be so bad if he did it with other people who try to help him.

[Sunshine84]

My mum's GBM is driving me crazy!!! I would also like to know how everyone is dealing with this..... I am 28 and my mum is 61, diagnosed with grade 4 GBM. Am I the only carer who is stressed and swearing at the end of the day? I feel so bad for getting angry because she doesnt listen (or should I say the tumour). How do you stay calm repeating the same thing a hundred times, then another hundred times the next day? Is it just my age that makes me not as patient? Or am I the only one who is complaining about this? Or is it because she is my mum and has always been independant and doesnt want to listen to her daughter? I feel so bad for just wanting this to be over..... Peanutz, I hope your partner allowed for pallative care, I couldnt imagine doing all this alone. Maybe suggest to your partner that you would just like to get them involved now to reassure that you are doing the right thing, and so they can be there if you need any extra equipment in the house for mobility etc. You dont want to wait till you really need it before asking for it.

[peanutz]

Hi Sunshine, you aren't alone here. Sometimes when things are bad, I confined with my best friend the worst thing I wish for which is for this nightmare to be over soon. I don't know how other carers can get through this journey but it seems they could and so can we. We may think other carers can handle things better than us but I believe they all experience the same problem and frustration like us and probably react the same way as us 🙂 I have to repeat saying the same thing over and over sometimes. It is the tumour and the treatments that has caused all these changes to your mum and my partner. I sometimes forgot it and got mad at him and when my partner is quite lucid he would tell me to forgive him for being such a pain as he's not himself any more. For me it's like living with Dr Jekyll and Mr Hyde and for him it's like he can't really control himself to be his normal self. Try to enjoy every good moment that you have with your mum and forget those bad moments. BTW, I have palliative care nurse in for initial assessment. It didn't go down well but at least it's in place now. 🙂

[storm]

Hi Nat, Terese and Sunshine Just big hugs to all Yeah the talking it’s a never ending story regurgitating feelings only to arrive at where you/I started. One day it will change,…one day. I do it as it takes some of the edge off but for me its also good with just knowing and connecting with others who have similar experiences ie you Nat, Terese and now Sunshine. You are all good women, the people who you care for are a high ask, it frustrating, anger inducing and a horrid experience to encounter with litttle thank from those that are dying on us. Your compassion is remarkable, you have journeyed with them to this stage of their lives and maybe will continue to do so. nat to reinforce what has been previously said Re pallative care, I am now doing 24 hour caring after her seizures and I couldnt do this alone without the pallitive care, just that they are there with emotional support (and if necessary so that you can get the time away from your partner - respite) Also get meals on wheels I initially thought that the food would be pretty horrid but its not too bad (well here at Forster and at $7.50 per meal, per person). It also allows time free from cooking/cleaning the main meal its a god send for that free time. Hey just got Lorraine off to bed after toileting her etc. I went to toilet whilst peeing happily away (I have a few hours to myself before bed)…….now …..oh what is that a dark shape across my toe - a leaf that the cat has bought into the house and somehow it has attached itself to my toe? Dark thoughts also crepe/crossed my mind, nah it can’t be, she is just toileted, into bed and clean a whistle, she had a sh_t yesterday….. it’s all cool. A closer inspection…oh sh_t ….it is a sh_t, bloody sh_t. After cleaning said toe, then found evidence on my jeans, but back to her bed thinking as it just some polyp size probably escaped after flatulence, (I recall that as I had made comment on the rather strongish aroma after the flatulence when just before getting her into bed) no stuff on floor or in other areas ….oh dear found a touch on the safety rail of the hospital bed,…..easy, it’s cool, so clean that up, check her pants ahh some residual – I am thinking a quick bed bath covering the area…. still not too bad and its confined within pants and not on bed linen. Now to attend to her pants. Get glove, wipes, position chair and think through process to lessen movements (she has started having pain issues in stomach/bowels- any movements can be pain inducing) All set. Rip incontinence disposable pants off (note anyone reading this and do not have experience that these pants are actually designed for ripping at the sides for an easier removal while patient inbed) and idol male thoughts of long forgotten passion begin to stir in the background upon said ripping, oh why was this not around when I was 17 (thoughts forgotten now as a by-product of the GBM). Oh sh_t ….it is a large messy sh_t, its everywhere within the pants, oh bloody sh_t. After the full blown realisation I have a large clean up job, my background male thoughts are once again quickly thrown back to the cold wilderness for their death by undeeded deeds,…… and then a thought sips through….. ahh that will teach me for my inappropriate comments at the time of the rather strongish aroma of her flatulence (flatulence that lead to all this)….. So now I must remember…. smart arsed remarks have the capacity to return to their maker, in so lots of different ways. Now to get her out of bed without spillage onto linen, onto shower commode and to bathroom. Night shirt saved , bed linen not so lucky – so strip bed and lucky me some more washing. Sometime later I finish. Lorraine safely in bed, snores away seemingly oblivious of issues. But its Ok I can talk about the experience, make fun of the stuff that happens (and it is stuff in hindsight, it’s just getting to the point where I can call it hindsight and then recall it as a remarkable experience – she has allowed me to be with her at this important corner of her life, it something that I often forget). Bless her for she will die and not far in time. I love her and after I will miss even this part of a crappy story that binds us together. Also a times I wish for the nightmare to be over and I can get on with my life. I get so fed up with how it is, and Lorraine's non answer to the 10 times that I have ask a closed and simple question.... as her attention was not there but in an ever expanding neverland. There is so little in quality of her life now. Geoff

[Sunshine84]

Thanks Nat and Geoff, I guess it is just hard to tell whether it is the tumour talking or is this my mum? Well my mum left the day of diagnosis 25 months ago but I dont like to think that I am living with/ caring for a tumour. Everyone says to enjoy the good moments ect but we havent really had many. After her debulk days after diagnosis, mum lost alot of her vision so she lost most of her independence from the start. Then after a year being on the dex, her bones became brittle and had 3 fractures in her spine. She was in ALOT of pain and had to use a walker around the house and wheelchair when we went out. When the pain went away she had shrunk like 30cm and had a hunch back and relied on the walker. She never really wanted to leave the house after that and now in the last 6 mths she is sooo paranoid about needing the toilet we pretty much dont go anywhere, she has no interest to sit in the garden, doent have the concentration and vision to read or do puzzles. All she does is watch tv, eat and smoke (Although it is bad, I cant exactly take that off her), oh and sleep. She doesnt want to phone her friends (but they can visit if they call) or go for a walk (i will push the wheelchair). Do you find it difficult to understand someone else's quality of life? Mum now is losing mobility in the left side, she was falling over using the commode in the night, so I put a whistle on her wrist, used a baby moniter and slept with my door open but she still wouldnt call out for help. So I put the side of the hospital bed up and she would just freak out, 3 times a night which makes for a very tired and grumpy me. She eventually figured out how to put the side down. (Go figure- forget to call me, even after a big lecture before sleep and then me losing it in the night telling her she HAS to call me next time but she will remember how to put the side down. A catheter was put in a week ago (and today she has been put on antibiotics for a UTI) so it is a little easier and hopefully we can leave the houde. Anyway as I was saying, we dont have many good times. I have many "WTF" and "How the F did that happen" times. Geoff thanks for the laugh with your story, I cant inagine, we arent at that #2 stage yet, although I can smell it I havent had to clean it. Just one more question.... Do any of you carers have children? I always thought I would have a baby by the time I am 30, I thought I was mature enough to be a mum. Now I think I will be a horrible mum because I cant handle being a carer, actually I dont like this life at all. I guess because mum cant do anything for herself and sometimes talking to her is like talking to a 2 yer old. Will it be different? I do love kids though and have worked in child care and also been an Aupair, they were never my own though. Im glad I finally signed up to a support forum. And thankyou for your reassurance. It is also great to read someone else life as a carer and take my mind off whats going on in this house. Take care x

[peanutz]

Hi Geoff... sorry to see the position you are in. I'm so impressed that you can still joke in this situation. I guess it's how we can get through this sh!t. I had some experience with the same thing. You wouldn't believe that one night out of no where while I was sleeping my partner got up and say sh!t sh!t sh!t. I thought what was happening and started to smell something.... mmmm some strong smell.... he probably wanted to go to the toilet badly. Ok, I got up and turned the light on so he could make his way to the loo with ease and quickly. No don't turn the light on he yelled. Why not? I thought and turned around to see what was going on.... Oh yes... that's what he tried to give me a signal for. Not a pretty sight, something I had never ever imagined I would see a grown man doing. He had no clue how he did it. Our bedroom is at the front of the house and the bathroom is at the back, no ensuite. Imagine Mr Independent tried to go to the bathroom to clean himself up with bits that he wanted to get rid of all over his lower body while me yelling stop stop stop hoping that I could control the damage. Nop, too late. Unfortunately another incident happened within minutes after he showered himself and I cleaned up the bathroom and toilet. It's like Déjà vu that I couldn't imagine how it could happen just like that. Oh boy... I couldn't go back to sleep after cleaning it all up and swore that I wouldn't give him any healthy food again hoping that next time those bits would be solid and easier to clean up. Luckily, we haven't had another episode like this again yet but every time he passes wind I feel slightly squirmish. On a serious note, should I discuss with palliative care team to start planning for the worst? How should I prepare the house/bathroom/bed etc.? Do I have to hire a respite care worker? Basically, I don't want to do thing to make him feel that I expect him to get worse although I think it's very rare that people with GBM can get away with this situation. I'm so tiny comparing to my partner. There is no way I could carry him to shower. Our shower is over a spa bath so it's quite an effort for him to have a shower these days. I can't imagine how he could shower when he's in a poorer condition. At the moment, he showers 2-3 times a week. It's nice that he doesn't have bad BO hehehe When he showers, no help from me is required. Although I'm asked to stand and have a perve, then hand over towels when he's done cleaning himself. Sunshine.... quality of life is something you have to discuss with your mum. My partner is at the stage that he's so sick of the treatment. Chronic fatigue syndrome that he has together with the chemo pretty much knock him out. He asked me what's the point of all these when all he does are sleeping, waking up, eating, sleeping, getting up, eating, sleeping, getting up, eating, shower, sleeping, sleeping, eating, and sleeping and I go to work. He feels lonely when he's home alone. I feel kind of lonely when I'm home with him as he sleeps most of the time. All I do is cooking, cleaning, holding him in bed, surfing the net/watching movie in bed next to him while he sleeps. As for kids, I don't particularly like kids and don't have one so I can't help you with this matter 🙂

[Melanie]

Sunshine 84, I am a carer to my husband with an astrocytoma BT, with a 6 month old & 3 year old. Trust me, your patience is completely different with children than it is being a carer. It is a highly emotional trip being a carer, and is devasting to see someone regress when you know how switched on they were prior. Having children, although tiring & yes sometimes frustrating, they grow, and they learn & become little people. And it is an absolute pleasure to be involved in such an important time of their lives. Although, being a mother first has prepared me for the caring issues, poo, vomit, repeating instructions over and over and over now comes naturally to me :) Be kind to yourself.

[storm]

Sunshine I’ve lectured Lorraine getting out of the chair or bed without me as she ended falling each time (this was occurring a few weeks ago when she could still take a few steps) Then I remember that lectures general add resentment and do not work Lorraine is doing the best she can with what she has got Memories get placed in different areas of the brain and/ or the recollection of that memory might have particular pathway/s through the brain, some are disrupted by the tumour, others are not. That may help explain why she is able to put the side down and not recall your lecture one is a tactile memory the other is a verbal memory. The reason does not help you though and getting your sleep is important to be able to face the next day. A question - can you get some respite give yourself a break away Ps I to have had the many "WTF" and "How the F did that happen" times, in the morning in bed with breakfast she had a juice and spilt on the bed. That with the morning urine I had stripped the bed and washed /aired all linen, it’s a never ending story. I am glad that my story was a laugh for you Ps “arent at that #2 stage yet, although I can smell it I havent had to clean it.” Old Chinese saying Never speak of the well from which you will not drink. Children After what you have been with your mum, being a mother would be a similar but very different experience. One has death at the immediate end, the other is with new mischievous and daunting little buggers (also adding to the over population of the world but I guess that I am a touch byous -I have no kids but I am a defacto step dad? I think that is right) I am also told there is a very ugly gene found in the depths of womanhood that raises its rampaging ugly head at some stage during said pregnancy This gene often evokes some type of love and defies all that may get in the way of her and her kids. It changes all To elect to care for your mum and get to this stage (and you are dealing with it the best way you can) and being open to questioning whether to or not having kids infers to me that you are emotionally healthy and would be an excellent mum (but maybe give yourself sometime after her death to have some quality time of your own (kids are for life)) By the time they are adults history would have repeated …and the kids live with you for ever and ever (but I guess you can always love them to death… that often scares them gets them out of home) Hugs Geoff