Chemo brain
Posted , 5 users are following.
My mum has recently went through 4 week of aggressive chemo and radio treatment for cancer in her lung that was unable to be operated on because of where the tumour was so the only option was this treatment. She is 75 but when l say that she was a very fit and healthy 75 she still had a jib she was very clever and switched on. Her treatment finished 3 weeks ago and since then we new she would have side affects she was exausted as to be expected and for the 1st 2 weeks slept mostly and lost her appoetite. It looked as if she was getting over the worst of it when all of a suddon she became very confused and it was like she had alzimers she started thinking there was something wrong with her legs but after many tests there is nothing medically wrong with her. She seems to have all the symtoms of chemo brain x 100 . We realise now she is suffering from very bad anxiety thats basically took over the person she was. She is pacing the floor as her brain is telling her she can't sit down she gets very aggitated and has lost all her cognatuve brain funtions. No matter how much we try to talk her out of it she is not getting better. We have told the hosptal and her doctors but they don"t seem interested because its not anything medical. But right now we have lost our mum to this. We don't know what to do to help as its that bad she is not in control of her own mind and is acting like she has alzimers asking the same questions over and over. She is in lorazipaine vut at 1st they prescribed 1 tablet per day to be halfed. We have now been told to give her more because she is so bad but my dad is old school and does not beleive in giving her more even when she is asking because she can feel it coming on but he says no abd waits until she is to far into a panic attack that half a tablet is not really working. The familys at there wits end. Does anyone know someone who has had this reaction. Or what could help.
Thanks
Laura x
0 likes, 43 replies
lors23
Posted
My dad is a brilliant dad always has been his only fault is he is very very quiet and was quite shy. To let you undersrand my mum has always been the head of the family and spoke for the 2 of them. But my dad has recently been forced into doing all the talking as my mum had a lot of friends and worked right up to she got cancer. My dad retired when he was late 60's and fell right into it his job became looking after the house doing everything from cooking to ironing he had a routine worked out on what days the toilets got cleaned the house was spotless and my mum just carried on working although she was 74 you would have never ever new ir she was more like a very fit and healthy 60 she had more energy than me. and a better social.life she was always going day trips with her 2 friends to see some show or go shopping. Its like night and day to what she is now. But my dad is just a scared old stressed man trying his best to look after her bur making himself ill in the process.
X
lors23
Posted
Thank you so much for your support and help its good to know that l am not the only one that has gone through or is going through the issues with my siblings. I found to that they both were putting obsticles in the way by coming up with excuses why they could not be there as much. My sister used her job saying she could not get away when l know because l.work for the same bank as her that in family energancys they will bend over backward to let you have time off if your mum is seriously sick and tgen after her wirk she would blame having to look after her old dog who is blind but has a daughter my niece who is 19 that is there to look afer the dog it was just excuse after excuse. My brother was slightly better but both of them done nothing compaired to what me and my husband done mu brother still went on 2 holidays while my mum was going through treatment but when was here would take a turn at dtiving her to the hospital after her weekend of as the hospital was so far away he would take her in on a monday and l would go back on the friday then we both would take a night of visiting leaving 1 night fir my sister to take her turn and most weeks l had to shame her in to doing it as she would try and come up with excuses. Both of them never seen hiw hard it was for my mum the bad days that she would have l did i was there for it all infact l ended up telling the hospital to call me 1st with any news l became her sort of power of autorney as l new my dad was not coping and l new l would give them the right story as my mum had a habbit of saying everything was fine when it was not and she was in pain where she was getting her radiotheraoy.
Think we might have had a breakthriugh after being told many times it was beyond the oncologys field and it was brain related they called yesterday asking if she was still on a tablet they have gave her way back at start that was an anti nausea taablet and she was they said stop it imimidiatly as they had found out this could cause all the symtoms my mum is having. And when l looked at the label and it up on google it has a huge warning that the patient has bot to be on it fir any longer that 4 weeks which she has and that if they showed any signs of the symtoms my mum was having to stop them immidiatly. They had failed to realise she was still on it and that she was having the exact side effects. We just took the hospitals word that they new what they were doing and they had previosly looked at her medication when things started ti get bad. But never noticed then but out of the blue they called yesterday about them. We have stopped them and alteady there is a marked improvment in her. They said it will take 6 days fir them to fully be out her sysyem so here is hoping it is these tablets.
Anyway l will let you know how things go in the next few days but thanks to you both for being there.
Laura
X
lynda20916 lors23
Posted
Hi, Laura,
Thanks so much for letting us know how things are going with you and your family! I am so glad that the hospital realized their error, and that you have stopped giving your mother the medication. I hope that she continues to improve!
Please remember to try to take care of yourself as much as you can! And, do keep in touch and let us know how everything's going!
(((BIG HUG)))!
JoyKF53 lors23
Posted
This forum is all about supporting people, and if we have helped in any small way we are really happy to have done so. I am so glad that there is an improvement in your mum and so sorry that your siblings are remarkably like my own. When my time here is up I will go with a clear conscience knowing I did everything for my mum and dad, as will you. The same cannot be said for our siblings. Let us know if mum continues to improve, we're thinking of you x
lors23 JoyKF53
Posted
Hi Joy
I admire you so much you seem to be going through what seems worse than my mum did. She had 4 weeks of raditherapy and 2 days iv chemothearpy a week and l oral chemotherapy during the 4 weeks. You seem to have the posative attitude that l wished my mum had from the begining but as soon as she found out it was cancer it was like they had handed her a death sentance no matter how much the various doctors and specialist told her they were going for a cure it never sunk in from day 1. The hardest part as l have keot you updated on is the after affects its now week 4 after her treatment and my mum has went downhill ever since. Every weeknits got worse and as l said tgey though it could be a side affect from one of her many tablets she was put on and all her tablets were stopped in past 2 weeks. She has went from bad to worse and we seem to have lost my mum all together now she is in there but its like the shutters are diwn and she has given up. It has taken me many calls to gp's and mcmillan and her cancer team for them to finally take notice that we need help. My dad is not getting to sleep at night as she won't go to bed so he has to sit on the chair in the livingroom while she is either in full panic attack mode where she can't sit at pease and is shouting at my dad to help her as she is feeling ill but can't tell you what it is thats making her feel ill. She won't eat despite my dad and us trying everything to get her to eat small bits but not enough and she is fading away. Her memory has gone she is acting like she has alzimers just not my mum anymore and my dad is cracking up thriugh lack of sleep and hard work as she is so consumed in her own illness she can't see what she is doing to her family.
We have now had the help we have been needing for past 2 weeks and she is going into a st andrews hospice to give her proper care and try to bring her back. Plus my dad can't take anymore now. She is not getting better being at home but is getting worse and everyday is a struggle to us all. Well when l say us all l mean my dad, me and my husband. My brother is still living his life and going to parties at weekend and when he did come in yesterday his answer is to get angry at my mum and start shouting at her aa he is frustrasted at her as he says she is not trying. Its not the answer getting angry at hwr as she can't help being ill and my mum.in a normal state would never deliberatly put her family through this she can't help it.
We are just waiting on word for her to go in to thiis hospice which we though would be yesterday but its been delayed but l have contacted the specialist and begged her to make it happen today as my dad is needing help asap. So l am hoping we get word today. Plus we have now been told to give her lorazipain to keep her calm until she does go in as personally l though shoulld be happening as she is taking very bad panic attacts especially now she knows she is going into the hospice which has made her worse. So fingers crossed it happens today.
Laura xx
JoyKF53 lors23
Posted
Oh Laura, how I feel for you. Your brother sounds a nightmare, he's reacting like this because he really doesn't know what to do and he's not got control of the situation. I really hope the hospice take your mum today, please let me know, so you and your poor dad can get some respite. Please keep in touch x
lynda20916 lors23
Posted
Hi, Laura,
I don't mean to intrude on the conversations that you're having with Joy, but I also appreicate knowing what's been going on with your mum and your family. I am in the US, so you will see about a 7 or 8 hour delay in my responses. If you'd rather not hear from me, too, please let me know.
I hope that your mum was able to get into hospice and get the help she sorely needs. This situation in your family has done so much damage! You, your husband and your father need respite and your mother needs the care that hospice can provide!
My thoughts and prayers are with you!
JoyKF53 lynda20916
Posted
Hi Lynda. You're not intruding at all, the more people who let Laura know that she is not on her own with these problems the better. It can be very comforting to know that other people have had similar problems and are there to support you.
lynda20916 JoyKF53
Posted
Thank you, Joy, that was very sweet of you! You and Laura seem to have a special rapport, is all. I've seen many families torn apart by the illness of parents and the despicable behavior of siblings! If my mother was down to her last dime my brother would feel entitled to it and take it. In his mind, someone else ought to take care of her, as long as it's not him. But he feels free to be critical of what that someone is doing!
I hope you are doing well! How are you doing?
JoyKF53 lynda20916
Posted
I'm doing ok thanks. Finished chemo and radiotherapy 13 months ago, now being looked after by King's hospital in London for a small brain tumour (meningioma) not connected to the cancer. But it all could have been a lot worse.
lynda20916 JoyKF53
Posted
I'm glad to hear that you're doing okay. I am amazed by you and other women on this site that have borne so much, so well! And that they have such an ability to nurture others. Thank you!
lors23 lynda20916
Posted
Lynda
You are in no way intruding in our conversation and are as much a part of it as any of us. Your kind words are appciated and are very helpful it good talking to both of you. I adire joy so much for what she is going through and seems like a strong woman. I came on for support because of my mum although l have been quite ill myself this year not with cancer but have had 2 hip replacements and 1 knee replacement and still have another knee to get done. I have rushed myself through healing to deal with my mum although l am in pain most days as well and am registered as partially disabled l am not going to moan when there is people like joy going through such a hard illness and seeing and trying to cope with my mum l see how hard it is.
I have an update on my mum. We thought we were finally getting somewhere after we were told on thursday by the cancer specialist who came out and accessed my mum and seen how bad she was. She told us there and then my mum would be taken into a hospice either monday or tuesday as she needed proper care and told my mum to stop all the tablets she was on including her heartburn tablets which l though was a bit bizarre considering my mum had radiotherapy for 4 weeks straight right next to her gullet and was having an issue eating and was getting heartburn because she was obviously burned inside. She also stopped her liquid drink that sort of freezed her gullet which to releived the pain when mum did eat. Now she is not eating at all and has heartburn. The omerazole she stopped her taking has no harmful side effects l have took them myself for 20 years because of a stomach ulcer l had when l was young. So my mum is suffering pain now and is still not eating. Monday came and she called saying it might take a few days for a bed to be ready. Fair enough l though as long as she is getting taken in. Yesterday however ny dad received a call from her ti say she was coming to access her again with a doctor......this had already happened last week and she had seen how bad my num was. I thought right away somethings not right so l text the girl and said that you have already accessed her and told us she needed proper care so why again and why is it taking so long to get her a bed when you told us yourself that there was a bed there and that my mum was going ti be put on a type of anti depressant to try and bring her back into who she was.
No reply from her and sge turned up at my dads house yesterday morning with a doctor and started saying oh you look a million times better and l think you are in the mend ( she is definatly not) and said l think we will just leave you at home and my dad is that soft as he is old himself that he takes there word for it and goes along with it even though my dad is exausted as my mums not letting him sleep and won't go to her bed and is up taking attacks of oanic during the night saying she is dying do something to my dad.
Well the real actual reason is there is no bed for my mum in the hospice as part of its being decorated and part of the hospice is shut of because of this. So its nothing to do with my mum being better at all it just they have no space for her and they have came uo with an excuse that she is getting better.
I was fuming l again texted this girl to say how didapointed l was in her aftercare and my mum was in no way better and l had been with her the past 4 days and new how bad she was and how much my dad needed a break. I tried calling her but it kept going to answer machine then she called my dad and said she cant speak to me about my mum because of data protection and that it has to be kept between her and my dad.
A copeout basically she knows l am right and it was infact me that got her out to see my mum in the 1st place. Its me tgats phoned every gp and specialist looking for help and have dealt with my mums case since day 1. She knows my dad is old and easy manipulated and thats why she wont talk to me.
So.my mum is still at home now and in no tablets because this so called soecialist has failed us. She has bot even been put on the anti depressant that was going to solve everything according to this girl. And now is suffering from heartburn as well and not eating or sleeping. I cried yesterday as l thought we were getting somewhere now my dad has been told a load of rubbish about her being so much better since last thursday and that she can be monitored from home.
To say l am upset and angry is an understatment. I was angry at my dad for accepting there lies. The truth is they have no space for her end off!!! Sorry lynda and joy for venting but l really though we would get better aftercare. My dad has been told if she gets really bad he has just to call the doctor in the place and they will see if they can do anything and l give it a day or 2 more before my dad cracks again but l can't do anything this time as she wont speak to me. I wonder why eh......because l wont be taken in with her lies and that my mum is better. How does she actually know that when she has not spent more than 20 mins with her since last thursday and there has been know change.
So back to square one for us. I am mentally exausted with it all. This is gonna make me more ill anf my dad who is clearly to old and worn down to fight his case hence the reason me the youngest has dealt with it all. When l told my sister and brother yesterday they were shocked she was not being taken in to the hospice. But like l say it will not affect there life as they don't go out there way to help or be there. I have my own work to go to thursday and friday and am using my own holidays everyweek so that l am there for my dad.
Right l.think l have moaned enough sorry girls. And lynda don't you ever think you are intruding or butting in you are part of this and have been helpful and kind as well as joy.
Thank you both and sorry about my rant.
Love
Laura xx
JoyKF53 lors23
Posted
lors23 JoyKF53
Posted
Hi joy
Thanks so.much ahain l.will do it as l.feel.like l have been made a fool of and worse than that taking advantage of my dad and his age. Thats why she won't talk to me yet when she áccessing her on thursday and waa promising that she had a bed for her at this hospice and kept going on about how good the place was and thats exactly where my mum needed to be and they would feed her up as they had great food so in my mums head she was going into this place so we had to deal with her anxiety of her knowing she would be taken out her comfort zone and spent hours telling her it was for her own good and this olace was not like a hospital it was much better and it was going to helo her! It was all a waste of time Joy. As the real matter is they have no bed so this woman spent yesterday with a doctor from the place telling my dad and mum that she was 100% better than she was on thursday and was in the mend!!!
The full point of my mum going in waa because my dad needed a break my mum needed special care and help to eat and to get her mind back. But no according to this woman my mum was fixed. And the full family know that there is not one bit of diffrence with my mum. But my dad thinks because this woman is being extra nice to him and telling him he is taking in what she says. So she has taken advantage of my dad good quiet nature and the fact he is old and went back on her word to help my mum. Left her on no tablets but said she will call every few days to check how she is doing. I think its terrible and am raging about and she knows as l sent her 2 texts yesterday saying how l felt.
Am just waiting on the call to say tour mums bad today.....but who knows l.mighg be wrong and this girl might be right after spending 20mins with her yesterday.
I soindxso bitter joy and l am being rude by not asking you how you ate doing? Do you have bad days hun? Where are you in Britain?
Love
Laura x
JoyKF53 lors23
Posted
I would feel better too. I had battles with hospitals with my mum and and dad, on one occasion my dad was sent home with an undiagnosed broken elbow! Long, long story, but I do know how you feel. You're not being at all rude, I'm fine thank you. I'm in Kent and have treatment at Queen Elizabeth's and King's College (in London). I have had amazing treatment from all the hospitals including St. Thomas's (London) and Queen Mary's. Make sure you contact PALS, they helped me.
JoyKF53
Posted
lynda20916 lors23
Posted
Hi, Laura,
Is there some way you can get each of your parents to sign a form allowing you to speak with their doctors and other health care professionals on their behalf when making treatment decisions or at least to allow you access to their information?
In the US those forms are preprinted and available in hospital admitting departments. But they may be available in the UK elsewhere. I suggest you find out where you can get them and what it would take for each of your parents to appoint you as their medical representative. That way you could speak to their doctors, and others. That would also prevent the games that are being played.
Just a thought. But I'd do it sooner than later. Right now, the medical people are saying your mum and dad are fine, so they'd be competent to sign one. If you can get them to do it, best not to wait.
Take care! ((Hugs))
Lynda
renee01952 lors23
Posted
sneeking in from the other forum because I wanted to find out how your mother is doing ... I am so sorry to read all this and wish I had words to comfort you ..
what a wonderful support you have here ...
thinking of you and keeping you, your mother and father in my prayers ...
big warm hug
renee