Struggling with guilt

rainbow · New User Joined: 10 Oct 2007 Posts: 2 Location: UK

Hello

I just need to talk to somebody - i feel pretty desperate at the moment. My mum passed away on 13/09/07 aged 64 from lung cancer after being given three days to live on the 18/08/07. Mum had been unwell for over two years and i was constantly battling with doctors to get to the bottom of things.

In April my mum was very unwell and riddled with stomach pain and sickness and was eventually diagnosed with a perforated bowel and had to undergo a big operation. At the time this was very traumatic but i felt relieved that mums health problem had finally been diagnosed. After a long stay in hospital and me travelling every day to see her she came home and stayed with me for a short time but then wanted to be at her home. This was difficult for me as we lived far away and i was worried sick but this is what she wanted. Anyway my mum got weaker and weaker and i was worried and kept on to the doctors that she should be improving but they said she would be a long time in recovery. I knew deep down something else was wrong still and so did my mum. It was heart breaking to think that she had been through so much and yet we knew that she was still unwell.

After a few weeks of this the one weekend my mum deteriorated rapidly and i had to get an ambulance as she was so weak and could hardly breathe. After a three week wait in hospital my mum was diagnosed with advanced lung cancer. We felt to so angry as for two years we had known there was something seriously wrong and it kept getting missed! My mum had been coughing up blood (didn't tell me) but had been telling her doctor.

My mums diagnosis was bad and on 18/08/07 they gave my mum three days to live but she lasted a lot longer - not sure if this was a good thing as she had to endure painful procedures and countless needles - it was unbearable to watch. During this time my mum would not talk about the disease and the doctors were worried about her denial. Some days my mum would talk as though she accepted it and then others she would talk as though she thought she would be around for a long time. I took mum home on the 29/08/07 and temporarily moved in with her knowing that she could go any day. I was so exhausted and hadnt really had a good nights sleep since April when my mum first went into hospital and the nights when she'd been in hospital after her cancer diagnosis i had spent most nights by her bedside. I would sit and hold her hand when she shook with the pain in the middle of the night. I look back and i cant believe everything that my mum went through - she had had a large metal stent fitted in her gullett and it was agony for her, she couldn't even cry because it hurt too much. How cruel is that?

I suffered a miscarriage and the very next night i was in a chair all night by my mums side. By the time i took mum home i was totally wiped out. I was told that we would have a lot of support at home - well after one week of being at home we hadnt even had a phone call off a nurse or anyone!! I was so frustrated but mum would say why do we need support what is wrong with you! I started to get short tempered as it was so hard knowing what was happening to mum and not being able to discuss it with her. I couldnt sleep as i was worried mum would die. It was horrific. My mums sister would relieve me for one night but it just wasnt enough and then i wouldn't sleep as i felt guilty for having a night off.

What im really struggling with now is i loved my mum more than anything but things went weird between us and you would never have believed that i was the daughter who adored my mum. One day i called the doctor out as my mum could no longer talk - only a whisper and she said my mums tumour was growing rapidly. Knowing this and not being able to discuss it with mum was so hard especially when mum would ask me questions about how she was going to get better and put weight on if she couldnt eat. Anyway the next day i sat my mum down and explained to her that she wasnt going to get better. This was the worst thing i could have done. Mum went mad at me and turned against and said that if she went downhill form there on i would be to blame and she made me go home that day. She really hated me for it. I went mad and said it was her fault being a smoker! I was so distraught and couldnt understand how she could be like this with me after everything i had done for her. My mum had said that i had taken away her hope - if i could have taken back what i said i would have, i now know you have to let people deal with it how they see fit, it was mums way of managing and i ruined it.

A couple of days went by and we brushed it aside but i think menatlly things were taking their toll on me and mum. I started to get snappy and couldnt cope.

The last weekend ( i didn't know) that my mum was going to be anywhere near her self i was so tired i just flipped i was crying saying how tired i was and that i couldnt cope and my mum cried and said that i made her feel a burden. My aunties took over that weekened (my mum preferred me to care for her but i was so tired) as i was at the end of the line but now i regret this for ever. On the Monday morning i returned and mum mum had gone down hill - she couldnt swallow a thing or even sit without being in pain, i called the doctor and she suggested the hospice - mum had always said she didnt want to go into a hospice but i was panicking as she could hardly move and swallow and with the lack of medical support that we had i thought it was the only way. Mum was angry and kicked me when i tried to put her shoe on when the ambulance came.

I keep going over and over things and cant believe how our relationship changed. We adored each other and considering it was mums last days my behaviour towards my mum and how mum was being cold with me is killing me. We adored each other and i just think how and why did i have to crumble when i had done my best for my mum all my life and just at the very end i crumbled?? Everyone says it cos i was exhausted and that was true but my mum just seen a hard daughter. My mum was so sensitive and got hurt so easily and yet i behaved in a cold irritable way during her last days. I am in such pain over this i dont what to do. I keep thinking my mum died thinking that i didnt love her. My mum had conversations with my aunt about how she was upset by my behaviour and that i made her feel unwanted. ( i have since been told)

The second night in the hospice mum was struggling but she managed to say that she felt better in the hospice and i was so relieved, i didnt ask her questions about how she felt and if she accepted what was happening. I told her that i loved her and that i was sorry for everything and i was crying and she said dont worry and rubbed her chest as it say dont cry it makes my pain worse. I was there until the very end and mum died peacefully. The hospice staff were great and my mum finally got the help and care that she deserved but i would have liked more support to look after mum at home.

I love my mum so much and i don't know how im going to live my life without her . We spoke everyday and she knew me better than anyone. I have no brothers or sisters. I just wish i had been nicer to her - i knew she was dying, so why did i behave so cold sometimes and why oh why did i take the last weekend off?? I just cant believe it. I always did my best but when mum needed me the most i let her down. I hate myself for this. I feel so cheated and yet only have myself to blame.

Im sorry to ramble on but i guess i would advise anynone when looking after a loved one who is sick is to look after yourself as much as possible as you will burn out and things could go bad like they did with me and then you're no good for anyone. I wish i had had someone to advise me and maybe i would have takem more time off when mum was in hospital and maybe i would have been more equipped to look after her when she came out.

Sorry for such a long post but i needed the release. Is there anyone who can relate to me at all. I wish i could cope with this. I do not know how i can carry this with me.
Thankyou

csweens · Regular Joined: 02 Apr 2007 Posts: 29

Hi Rainbow -
First, let me say that you have my deepest sympathies in the loss of your mom - I just lost my dad a couple of weeks ago - the pain is the worse thing in the world - I'm an only too so I understand how hard it is to not have any relief -
My dad was in the hospital for 2 weeks before he came home on hospice and then eventually passed 2 weeks later - it was the most exhausting time in my life.
My dad didn't really want to talk about how long he had - he'd talk your ear off about his actual disaease but not that it was going to take his life - was just a subject we didn't talk about - which was very hard - it was like everyone around him knew that he was going to die but he didn't -
You really need to try and let go of the guilt - you did an amazing job taking care of your mom - there is no doubt she knew and still knows how much you love her. As an only it's hard - I know that it goes through my head constantly that I am all they have, I have to be there,
but you were there - there is nothing wrong with taking a weekend off - no wonder you were having trouble - I know I was exhausted and snappy to everyone around me at times.
You said your mom knew you better than anyone - so do not doubt she knew what this was all doing to you -
I was so involved in the trauma of trying to be three places at once - their house, work (single mom), and home that I was on a self destruct path - a very wise friend told me that I was spinning out of control - it was the most important thing for me to be there when he passed - she told me that if that was what was most important then things would work out that I would be there - and I was
Part of the journey to death involves detaching from this world and loved ones - it's hard, but true - maybe part of what you projected to her was because of her getting to that point - sorry if that doesn't make sense but what I'm trying to say to you is - you did the very best by your mom - you were there, she absolutely loves you - (don't listen to someone else who may have caught her at a bad moment missing you) it's hard enough to deal with the pain of the loss - try not to feel bad about what you did or didn't do - from what you wrote you are a wonderful daughter - from one only to another Smile

give yourself permission to hurt, for as long as it takes - some days I don't know how I'm gonna make it - I go minute to minute.

Well hope my babbling makes some kind of sense - wish I could send you a hug -
Keep posting - it really helps - you're in my thoughts and prayers./
Cindy

rainbow · New User Joined: 10 Oct 2007 Posts: 2 Location: UK

Hello Cindy

Thankyou for your kind reply. I am sorry to hear that you lost your dad. It is the one of the hardest things ( i hope) that we will have to go through in life.

My mum had no partner and i often felt like a daughter as well as a partner! I would have loved her to have someone special in her life that could provide what i couldnt.

I have just got back from the doctor and he has signed me off work for another week - not sure if this is a good thing...

I just keep going over and over the last two weeks with mum and how i snapped at her and made her feel a burden. I just pray that she heard me in the hospice and knew that i was there. Sometimes i think she did as she responded and squeezed my hand so much so that i think she tired of me asking for a squeeze cos at one point she moaned as if to say stop asking me to squeeze your bloody hand!!! I think of this and think yes she knew i was there but then i have a painc and think but she was on loads of medication, she wouldnt have fully known. I wish i knew for sure that she knew i was there.

Another thing i feel guilty about is my aunt told me to leave my mum to sleep, but now i regret it cos when the nurses would approach my mum she would open her eyes and respond even though she had looked to be in a deep sleep -now i wish i had talked to her more rather than listening to my horrible bossy aunt. I worry that mum would have thought we were all talking round her and not bothering with her.

I hope your pain eases Cindy. Talking and sharing does help.

Lisa
x

csweens · Regular Joined: 02 Apr 2007 Posts: 29

Hi Lisa -

Hey - take all the time from work you can get - I only had a few days after my dad's funeral and I was not (and am not now either) ready to go back - guess it doesn't matter in the long run the first few days were horrible but now is settled down to a dull ache to have to go to work.

I understand what you mean about leaving your mom sleep - I did the same thing - but I did notice that sometimes when my dad didn't want to talk/interact he would close his eyes as i or someone came into the room - I had a hard time not taking it personally for a while but then realized that for whatever reason was going through his head he didn't want to talk/deal with me or anyone - it was hard - you really don't know what is going through their minds or what to say.

I am sure that she knew you were there at hospice - our hospice told us that the last thing that goes is the sense of hearing - I treated my dad as if he heard everything - I did the same thing with the squeeze the hand thing - at one point he looked at me as if to say - enough! I love you already!

I can't imagine what life holds now - I'm left empty and trying to pick up the pieces of the finances he left and set my mom up - it overwhelmes me quite a bit some days - I try very hard to take one minute at a time.

You are right - talking does help - I'm here Smile

It helps to know you're not alone in this -
Cindy
X

jfkbluecircle · Posted: Wed Oct 10, 2007 4:56 pm Post subject: Re: Struggling with guilt

Hi Lisa and Cindy,
I hope I am not intruding on your conversation, but I had to post after reading your communications. I have a sister named Cindy and another named Lisa. Call it kismet, but I felt compelled to send some words to you over the internet (since hugs aren't possible).

I cannot begin to imagine how you are suffering. I know I cannot say anything that will make this time any easier, but please know that you and yours are in my thoughts and prayers. I am glad, at the VERY least, you have found cybersisters on this amazing forum.

Wishing you both peace in your days,
Jessica

brainman · Posted: Wed Oct 10, 2007 5:32 pm Post subject: Re: Struggling with guilt

Lisa, I am so very sorry for all of your losses. I lived with my father for the last years of his life and was, like you to your mother, his primary care provider. He depended on me for much more than he really should. We had multiple "explosions" when either I felt overwhelmed or he felt neglected. Our relationship was always stressed by a number of other personal and personality reasons. But I was the one he wanted to care for his physical needs. Although I have 4 siblings, none lived near my father. When I called, they did respond. However, when they came, Dad seemed to get better. So they would go home and send emails about how much better dad was. I got frustrated and told dad that it was not fair to me for him not to ask my siblings to do what he wanted me to do. His reply was: "But they don't get to be here much so I don't what to make them work all the time." AAAHHHHHHH .

I can understand your anger at not knowing about the cancer sooner. I do not understand why the doctors did not find it sooner. However, I do not think you should bet yourself up with guilt. You did all that you possibly could do for your mother during a very difficult time in her life and in your life as well. You did need support. You did need to get out of the house. You could not do it all on your own.

I was the only one with my father when he died just over one year ago.

We are here for you, Lisa.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

In · Posted: Wed Oct 10, 2007 9:11 pm Post subject: Re: Struggling with guilt

Dear Lisa,

A Mother knows how much their Daughter loves them, no matter what. We, as daughters, say words all the time to our Mothers, and they know. We say them in frustration, in fear, and sometimes spite. BUT they do know we don't mean it. You Mother had also had her frustrations and secret fear also- her unkind words.

The pain and Medications make people do strange and weird things, It also can change a personalitie in the end. I often hear how a person becomes mean or very abusive.

Forget these bad times. Know that you Love your Mother very much- and she loves you. She is watching and looking after you.

Remember the good times, The Mother, Daughter things. The laughter, The jokes the fun. The Love.

Take time to greive, and loss the sorrow and guilt. For you are not alone in these feelings. Cancer is a Body, but also a mind and personality killer.
_________________
Thinking of you Inica

*Administrator*

~Nose Cancer~
~Car Accident- Broken Back, Ribs, Spleen
Sternum~
~Continous Cervical Cancer~

My Story-
http://cancerforums.net/viewtopic.php?t=6731

Smile

9 Lives and still kicking Smile

	Cancer Forums Forum Index -> Coping and Support	All times are GMT - 5 Hours
Page 1 of 1

A website for discussions about any type of cancer, including lung cancer, breast cancer, mesothelioma, prostate cancer, laryngeal cancer, leukemia, lymphoma, multiple myeloma and others