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No cure for widespread cancer

dinsdale
Posts: 1
Joined: Jun 2003

My mum has incurable cancer in her breast which has spread to her bones, lungs & liver. The primary in the breast has not been confirmed but that is where they think it started. She has had one session of radiotherapy for palliative effect only & is on combination painkillers. I have moved from my home with my fiance to stay with my mum & care for her to the end. It is a real struggle coping with her illness day to day. She has terrible trouble breathing & wakes me up very early needing my help. We also have to go to bed very late as she is afraid of the panics her poor breathing in bed causes. I am constantly tired & also have to put up with my grandmother with whom my mother lives. She is very demanding, unhelpful & selfish so essentially I am caring for 2 people although my grandmother is not in ill health. My main concern is for my mother's well being but sometimes I find my patience tested by everything & find it hard not to be negative. My mum has lumps on her breasts which are growing & increasing in number & she is very thin & very weak. I love her very much & am terrified of her death & the manner of it. The pain is well controlled by morphine but her breathing is so laboured that I fear she will suffocate. If she has respiratory failure I will have to call for an ambulance which horrifies me because she does not want to die in hospital. I miss my fiance, I am sick of having no life or a single moment alone - I even sleep in the same room as my mother. I am coping on the whole but get quite depressed & self pitying as I am confined in this house in a town where I have no friends & my every moment revolves around others' needs. I feel like I need a break but have only been here 2 months & will be here for the foreseeable future. If there was something I could do to help my mum with her breathing I would feel so much better. I read about a portable respirator called Airlift I think, but it was on an American website & no one I have spoken to in the UK has heard of it. We have hospital appointments in the coming weeks but my mum will probably be to ill to attend them. All the healthcare professionals are strongly recommending she attend a day hospice but she is too weak for that also. I am sorry to ramble on & be such a misery but the unvarying days, terrible television & lack of anyone to talk to who understands are making me a bit verbose! If anyone can offer understanding, advice, tips or even just humour I would be very pleased. Thanks.

jamjar62's picture
jamjar62
Posts: 135
Joined: Jan 2003

Hello...I am so sorry to hear about your mother. You are a very strong and brave person to do what you are doing. I don't know how things work in the U.K. but I know hospices here offer respite care to the caregiver. A volunteer comes in and stays with the patient while the caregiver goes and has some time away. Not extended time, of course, but just a day to just be free from the constant stress of caring for a cancer patient. Please do not berate yourself for feeling the way you do. Caring for a dying loved one is the hardest thing you will ever do. Its thankless, difficult and scary. I know there are resources here in America and would hope that there are for you as well. Get in touch with the hospice and see what they can do to help. God bless. Karen

slamaj
Posts: 19
Joined: Apr 2003

I'm so sorry for what you and your mom are having to go through. I agree with Karen though, check into home hospice care. We did that for my mom when she was dying from bc mets. It gave my dad and whichever one of us kids that was there a brief rest, and made my mom feel alot better too. She loved her hospice nurse. They also gave us alot of information on how to handle various situations and/or emergencies. You need to take care of yourself too so hopefully you can find this kind of help where you live. I hope all goes well for you, I'll be thinking of you and your mom. Julene

oliverfrani
Posts: 9
Joined: Mar 2003

Hi
Go ahead vent, you must have many emotions all pent up, and this is the place to let them go, not with mom. If your mom is having trouble breathing it could possibly be the morphine. Morphine does effect respirations, lessens them. You could ask your Dr. for another type of pain med. Or they could be giving your mother morphine for other reasons. Morphine can build up in your system and effect the respirations and then help the death process become faster. Either way this does not seem to be a never ending event. You know your life will not always be this way, but this is a special time for you and your mother. Get to know all aspects of her, her childhood, her fears, her wishes. I do agree that hospice should be involved. England started the hospice movement and I'm sure they will help you. If you need to talk please, come to us. It is not your time to deal with your grandmother. It is yours and your mother's time. Try to make the very best of this as you can. You want to remember this time as a bonding, close experience. Where with you.

reece
Posts: 20
Joined: Apr 2003

Hello
My mother died from lung cancer 7 years ago, and it was a very difficult time taking care of her. But, we did have hospice and that was very helpful. So, I ditto the others advice here. Call in for some help.

Also, I don't want this to come out wrong, but in regards to your grandmother. I know it must be difficult to have to deal with her on top of everything else, and older folks can be a tad cranky - but is your mother her daughter? If so, try to remember that she too is dealing with this, and the possibility of the death of a child is hard to bear at any age.
Reece

DeeNY711
Posts: 482
Joined: Apr 2003

I am so terribly sorry for what you are going through. I cannot offer specific remedy for any of the things making you sad, but I do know what it is like to deal with a mom whose deterioration will end in death at some unknown date. Unfortunately, mine was like both your mom and your grandmother rolled into one. If your grandmother is able to live independently, would it be an option for you to remove your mother from grandmother's home to care for your mom individually? If not, the issue of what care arrangements must be made for grandmother ought to be addressed now and set in place. I am hoping no one (especially you) expects that you will shoulder the burden of caring for both of them until there is only one, and then the remaining one for however long. That is totally unreasonable. I point this out to you because I believe that the stress related to my own mother's end-of-life care created such a disastrous impact on my own health that I am now in a struggle for my own life at an age nearly two decades younger than that of my mother at the time of her demise. I urge you, please, to take care of yourself, and do what you can for your mom and your grandmother without surrendering your own wellbeing. Allowing mom to be taken to the hospital for proper evaluation and treatment would be merciful for both mom and for you. There are antianxiety medications and measures to reduce respiratory congestion that she needs. Also find sites for caregiver support online to explore your options. God bless. Love, Denise

maggs
Posts: 166
Joined: Sep 2002

For some good humor and beautiful poetry,try www.oncolink.com, then "support," then "reading room," and then Another Look at the C Word by Steve Gould. He is a cartoonist and so funny! Share these things with your mum--she might smile!
You can learn anotherlanguage by typing "Spanish" and seeing what you can find! Or try buying a Family History Diary Book and then ask your mum to help you fill it in--you'd be surprised all the info you can still learn from her and keep to pass on to your own children. It sounds like your mum is almost at the end of her life: Hang in there-- you'll have a sense of joy and peace that you did!

Glow
Posts: 41
Joined: May 2003

Hello. You are an amazing daughter to give up your own life and plans to help your mom. It sounds that she is very ill and by Gods mercy will soon be in HIS care. In the meantime, have you no brothers or sisters? Cousins, aunts, uncles? If so TELL them you need their help.Are you in a position to hire a companion for a couple of hours a day so you can get some much needed rest. There is a saying "We cannot give what we do not have." That's why it is so important to take care of YOU !! The other suggestions above are exactly right...perhaps hospice care, different medication for your Mom. Do you have a pastor or a church that can help? I will pray for you....the road you are on is difficult but when this is all over you will feel that you did all you possibly could. As for Grams...maby she needs to be TOLD how she can help. She may be at a loss. The very best to you! Come back to this site often...they are a wonderful group of people.

bunnie's picture
bunnie
Posts: 233
Joined: Mar 2003

hi i agree with everyone else you need to look into hospis they where a big help to us when Dad was dying.My dad deaid in 90 from a brain tumor and i helped take care of him was very hard at times.all our prayres will be with you.Amy

JKAlley
Posts: 84
Joined: Apr 2003

Hi, I'm a little late here on this (the story of my life, sorry) but I hope your still checking responses. I agree with every about hospice. Before my Dad had cancer, I had heard nothing but good things about Hospice. What I found was every thing I had heard and then some. The people there are wonderful, they not only will help you care for your Mum, but will offer you the support emotionally that you need as well. They will also make arrangements so that when the time does come you call Hospice, not an ambulance, so you can respect your Mum's wishes not to die in a hospital. My Dad died at peace in his own bed and this would not have been possible without Hospice. I still donate to them on the anniversary of his death. We all understand how you feel, and please don't feel guilty. Being a care giver to someone you love is the hardest thing you'll ever do. But it can be very rewarding as well. Those last few months with my Dad as still some of the most precious memories I have, he gave us such a gift. Please come into the chat room, it's full of wonderful people that are both care givers and suvivors. You can make some new friends and get support from those who understand what your going through. God Bless, and please keep in touch, Judy

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