This topic contains 10 replies, has 9 voices, and was last updated by 
Lindylou 11 years, 3 months ago.
Hi,
I don't normally participate in online forums etc but I feel so useless and lost that I'm hoping this will help me get some feelings out (without upsetting my family more). I'm also hoping someone may be able to give me some advice because the difficult questions I need answers to can't be asked of those most closely affected by my Dad's illness.
My Dad has Myeloma and after 2 lots of chemo, radiation therapy, steroids and bags full of drugs he was only afforded a few months of remission. This last time it was literally weeks and sadly during that time he fell ill with an infection which he never really recovered from. He was very week but the cancer was so aggressive the hospital started him on Revlavid anyway but he reacted so badly that they have had to stop it again. He is currently in hospital, barely eats or drinks and sleeps most of the time. When he wakes up he is intermittently lucid or confused, sometimes seeming like his old self and others just scared and confused.
We are currently making arrangements for him to be moved back to the house he shares with my stepmum so he can be as comfortable as possible, close to the family and able to look out into their beautiful garden. We have been told it could be a month but is more likely to be weeks that we have left and I just feel so useless. I want to be helpful and supportive but I'm struggling to even think about not having him around without crying. My stepmother has been amazing, will not leave his side and does everything for him but I can't think of the words to express my gratitude to her for making my Dad so happy and also doing all the things she has more recently to care for him. I want to do more but I'm not sure what or how I can help. I live and work in London and my Dad is an hour and a half away so seeing him daily isn't an option unless I just book holiday off work. But then if I use it all now I may not have any left for when he needs me most. Also myself and my 3 year old son have stinking colds so they won't let us on the Oncology ward at hospital but if he comes home is it ok to visit him? I don't want to make him ill or cause him more pain but I also want to see him as much as possible. If he has stopped the chemo is it ok now? Is there anything i need to be prepared for now he is in the last stages? I've already seen him go from a handsome, athletic, charismatic man who is full of life and positivity to a weak bag of bones who is emotional, tired and confused but if it is going to get worse I think I need to know so I can prepare myself.
I'm sorry if this seems like an incoherent babble but it has helped at least to get some of these things of my chest so even if you don't reply – thank you for listening… C
I can't help you with your questions or give advice but I will say it doesn't matter what you write or how babbled it is. This is a forum where people can try and get help or support that they need. It also allows you to let off steam or try and understand the dilemma you are in. There are always those reading posts and trying to offer support or explanation, no one will criticise what you write so long as it is not inflammatory or offensive. So write away and accept this site as part of the coping and helping process
Hi Ceri
Am sorry to read your Dad has not been helped with the drugs for his MM.
Am sure you are not being useless its just with MM at the later stages you cant do anything about it apart from being there if you can.
Am sure you are going to get a few replies' how it will help you only you will know, when you get to see your dad Talk to him even if he is asleep am sure it might help both of you.
Please keep us informed on how you are all copping with your Dads Illness, and post how you feel we are all in this together am sorry to say.
Stay Well
Love Tom xx
Hi Ceri,
On a practical level I would contact the MacMillan Nurses first thing tomorrow, give them your details and tell them your story and take the advice they offer.
http://www.macmillan.org.uk/Home.aspx
Once you have their attention I am sure that everything will seem clearer and the help offered will lift the burden of what, how, where and when… if not why.
Keep in touch and let us know how things progress… the first thing to get sorted is an environment where your Dad can come home to that is familiar yet supportive… MacMillan's can help with that.
Dai.
I am sorry to hear of your situation.
May I just say your Dad will be emotional, tired and confused because of the drugs he has been taking he has not changed. Remember your Dad as he was and try and put this vision aside.
On a practical note I would not recommend visiting your Dad if you have an infection unless he is nearing the end.
Kindest regards – vasbyte
May your God walk with you and your father at this time
David
Hi Ceri
Well from what little you say ,you are talking about less time,not more!!!!!
You have to decide for yourself were you want to be!!!,I can only tell you your step mum is in a very lonely place at the moment,she is most properly very tired and worn out,plus she is watching the man she loves,slowly ebbing away,its not a nice place to be.
Why not offer to stay,when your dad comes home,but be prepared to take some of the burden from her,it's no good going if you can not be of any help,is it not better to spend some time with you dad while he is able to communicate ????..
You will never have this time again,there is nothing worse than having regrets,I hope you make the right decision for you,if you feel you cannot do it,that's fine,it is a very hard to watch some one fade away,and I am sure your step mum will understand if you talk to her.Eve
Hi Ceri
Just to let you know that there are some of us out here rooting for you at this difficult time.
Sorry it is so distressing to see your Dad so weak and confused. I think you will find that you have the strength to cope when you really need it. You will be able to turn onto your Dad's needs and put your sadness aside till later. Remember this will be the last thing you can do for him and offer any visits you make as a gift of love. It will really help you afterwards if you can do this.
You have my prayers for all the family
Love
Mavis x
Dear Useless
I don't know the status of your Dad since this posting but I'm on your street. My brother 52 is coping with MM and it's horrible. I was woken this morning 5:00 a.m. with him on the other end saying his leg is so swollen that he couldn't get up had to urinate in his plastic trash can beside his bed. He's not married and live alone. He told me he feels alright but had to do it as a last resort. He told me he is just tired and want to get some sleep for being up all night. He took 30mg of pain med (doctor ok'd). At this very moment I'm at a lost. I got right up and am pondering what to do. I'm waiting for first light, calling his doctor and seeing what path to take on this weekend when doctor offices are closed. I and my siblings are sooooooooo exhausted. For the last 2 years its been going back and forth to the hospital, emergency room, sitting and just wondering, praying and crying.
Since I am his healthcare attorney, I've seen, heard and witnessed just about every detail of this horrible horrible condition. I am so tired and fearful for my brother. I know his thoughts because we discuss them but at this point I only share limited info with my siblings because they couldn't handle it.
So with this being said your emotions are normal. Don't be so hard on yourself. One minute at a time.
Take Care
Chosenone
Hi Barbara
If its any consolation ,all carers feel the same,it's a very hard path,when things are not going smoothly.
I suppose in some ways I am lucky living with the patient,I dread to think about some one living alone,coping when things get bad.it must be like living two lives,you have your own life and also trying your best to look after your brother,a task and a half.
I would learn as much as you possible can,as when things go wrong,if you have a knowledge of Myeloma plus side effects,it makes life much easier,less panic ,knowledge is the key. Eve
We contacted Macmillan last week because my mum wanted to come home from hospital and be nursed at home. They told us they can only get involved via a referal from either the hospital consultant in charge of patients care OR by the family doctor. You DO have a choice about where you die but sometimes you have to be firm. There is something called an Advanced Statement of Wishes or Advanced Care Plan. On it an individual states what kind of treatment they want, if they can't write it it can be typed up as long as they sign it, take a copy of it to your doctor and another one to your dads consultant. After reading up on it I decided I'm going to do one and so is my husband…everyone should consider having one even when they are not ill.
Your dad is lucky he has your stepmother, my mother has been cajoled into going into a nursing home because the hospital social worker has concerns that my mother wouldn't be cared for at home due to my brother and I having work committments. We are like you, we have jobs, I have a family and live in another town and trying to get information so that you can make plans is nigh on impossible, getting carers in wasn't an issue but it seems just like my father before her my mothers wishes about dying at home will be ignored by the medical profession.
We were told about the nursing home and told mum had agreed to it (she'd said anything to get out of hospital)and we read about the Advanced Statement of Care at the end of the week just as she was being admitted into a private nursing home. I knew about them but didn't realise they applied to everyone and covered palliative care.
I found reading about the final stages of cancer on the internet useful, I know what I'm looking for and my mum is probably within days of passing away. If you have some idea of WHEN you can move heaven and earth for a short period of time but realistically it's hard even for medical professional to guage exactly when but you mustn't beat yourself up (I'm sitting here doing the same) you cannot be with them 24/7 you have to sleep and they are asleep a lot of the time as well.
By the way, your dad is going through stages and there is a good chance that over time he will become more peaceful and settled. My mum was very, very ratty in hospital but she has reached a calm stage where she just seems very comfortable. Yesterday she told my brother she thought he was cruel for 'not letting her go', death from cancer is a process with stages and whilst on the one hand I am upset that mum realises she is dying it is also comforting to know that she actually wants to go now. She has gone into herself and whilst not a believer as such, when I feel overwhelmed I imagine my grandmother on her journey to come and get her to guide her to wherever people go next, it helps.
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