Completely broken

DearKnowledgeispower20,

I don’t know whether you want a reply or it’s just enough to say how your feeling but your post touched my heart and I felt the need to reach out to you and offer any comfort I could. You sound to me like the most caring, compassionate and patient person I’ve ever come across and I would be more than happy if you were my carer. Your mum who its obvious you love very much has the double whammy of serious mental health problems and her advanced bowel cancer and as a palliative patient myself I understand the mental pressure of living with a life limiting illness so she has a lot to contend with, however the way she is treating you is not going to improve her situation one little bit. What do you do about it is the question, well for a start off you need to get help for yourself, have you ever used the services of carers uk they have a help line and are used to dealing with situations like yours. You say your mums bowel cancer is advanced, is she in touch with palliative care services within the hospital or local hospice as I know they can provide psychological support. You can also be supported by your local maggies centre or hospice, my husband has had a course of therapies for stress in the past. If your mother doesn’t want to engage, I think it’s very important that you get help for yourself regardless. What I can say is that the way you are being treated is not normal and none of it is your fault and you need to remember that, cancer has the power to make people behave in a variety of ways for me personally I try to keep any anger I have in check as my husband has enough on his plate taking care of me 24/7 but none of us is perfect but you have to draw the line somewhere and now is the time to get support for yourself.

Chemteacher, I am so very sorry you find yourself here. Don't ever be scared to come on here and vent. We are all here to support you. As for your mum, cancer of any sort is just horrific but mum is being very cruel, she is most probably angry at the world and all that is in it. And as you say, you are a very close family, we do tend to take our fears and frustrations out on those closest to us (rightly or wrongly). As previously mentioned, get support for you! Visit your local Macmillan, they will be there for you too. Please take care and stay strong. Xx

Hi Knowledgeispower20,

I'm so sorry to hear about the situation you are dealing with.  I have no direct family experience of serious mental health although I worked in residential work with several people who suffered from bpd and know how difficult it can be to access support or immediate medical intervention or even an assessment.  Unfortunately I am all too familiar with the world of cancer.

Regarding your mum you have probably already tried these but my fall back position was always the person's GP or contacting MIND.  Unfortunately these very much depend on the understanding and determination of the individual involved.  If I could get the GP to do a home visit and see the situation at first hand they were much more supportive.  As the GP is the person who is supposed to co-ordinate your mum's medical care and interventions they are the person best placed to know what support is available.  

I do think that you should contact Macmillan, either through the local hospitals, or the Macmillan helpline (0808 808 00 00) between 8am and 8pm.  They are very knowledgeable and supportive and although this relates to cancer I have no doubt that within the organisation there is also some knowledge of serious mental health issues.  If your mum does not have a Macmillan nurse allocated you can apply to have one allocated either via your GP or your Mum's cancer care team at the hospital, again the helpline number can also help you with this.  They will be able to offer you support and advice in this situation and sometimes as a medical professional their voice is heard better than that of a relative in trying to access medical intervention from other services.

They will also be there to support you and your husband through this and can help you find emotional support as well as practical assistance.  Your own GP can also refer you on for emotional support.

If you have already tried all this then my apologies.  I know how soul destroying it can be to try and get the support for someone who desperately needs it.  I have more than once sat waiting for an ambulance at 3am or else driven someone to an emergency overnight bed so they can undergo observation and even more often seen the support not be available and had to support someone for weeks or months waiting for their first outpatient appointment and hoping that they will attend.

Anyone who is not ill will lash out at times and take the easiest target or often the only target available.  This is probably much more common in patients with mental health issues.  Add cancer into the mix and the extra anxiety that this introduces then your mum is almost bound to explode and to be quite nasty to you at times.  This is not to excuse it and it is no doubt difficult to take especialy with all that you have given up to support her.

I'm sure that I am not alone on the forum for admiring all that you have done and are continuing to do to support your mum and I am sure that in her calmer moments your mum recognises this as well.  It is perfectly natural to want it all to be over and I am sure that in our lower moments many of us have thought this.  I know I have because the uncertainty of what will happen next or when it will happen can be quite draining.  It is not an easy role that you have taken on and you must remember to make sure that you have your own support in place and get to take a break on a regular basis even if it is just for a few hours

I hope that you got a good nights sleep and that the world does not look so bad during the daylight, limited as it is by the poor weather.  Know that you have the support of people here and can come here at any time.

I see that you are a member of the "Carers only" group but wondered if you had seen the "Family and friends" group as well.  There might be some additional support there. If you click here it will take you directly to that group.

Sending you love and hugs,

Gragon x

Thankyou for your reply....it really helped me a lot. Mums condition is not terminal....surgeon thinks chemo and liver op should be doable and give her a complete cure....but it's being left as she isn't well enough for chemo....and the mental strain is unbearable for both of us....today was spent re bonding......I think the cancer diagnosis just turned our world upside down....mum very upset about last night and we have agreed to work together never to let things get out of hand again.

Sending love to you.

Hi Knowledgeispower20,

I'm really pleased to hear that you and your mum are getting on better again.  It is good that you have both made the effort to reconnect with each other, well done as this is not always easy.  Any cancer diagnosis unleashes lots of emotions and it is likely that at times they will get away from both of you.  In any relationship I would always advise anyone to make sure that they keep talking even when things get difficult.

I also think it is important to build in treats, whether it is a shared tub of ice cream or a day at the seaside, a trip to the cinema, a visit to a stately home or whatever you and your mum enjoy doing.  When you get a cancer diagnosis it tends to fill your life and it is important that you don't allow it to do this and try to make sure that the anxiety is balanced with pleasant experiences.

I would still recommend contacting Macmillan as they offer excellent advice and can often help you sort out any practical issues you might have which removes a lot of unnecessary stress.

Wishing you and your family all the best,

Love and hugs, Gragon x

Hi Grafton,

Your lovely message cheered me up this morning, and it's so kind to spend time replying to me. Quite a lot of the problems we are having is simply put "cabin fever". As mum spent 2.5 months in hospital, she has lost a lot of weight and is very very weak....struggles to manage stairs and can't get out. Her digestion is erratic, and so is her bowel, and her taste buds have gone, so eating for pleasure isn't possible, and she can't eat certain foods or volume of food like she used to. She's had 4 courses of antibiotics and lots of infections including c diff. She's pretty much confined to her bed.....watching talking pictures or film channels all day. She's too unwell to even start chemo, or get to appointments anywhere. This time last year, we were off flying round the world, enjoying amazing city breaks in some of the world's top hotels....just doing so much social stuff, and enjoying life. I was working as a teacher, so my life has been transformed too now I'm mums carer. Our days turn into nights and back into days, filled with anxiety and fears....centered around meals, and mums digestive system/ will it...won't it play up. When will chemo start? What will it be like...is the bowel cancer in the liver spreading?? 

We are incredibly thankful for all the good things......and the wonderful support from friends, family and people like you. I still think the cancer diagnosis hasn't sunk in.......such a terrible shock. 

Sending you lots of love and blessings

Hi Knowledgeispower20

Just wanted to add a few words to what others have said, Having worked in mental health system for over 20 years, I know just how broken the system is and how hard it is to access support. Given you have lived with your mum and her diagnosis of BPD, I am sure you have been through plenty of difficult times before, but this diagnosis adds something extra to the already difficult mix. Just to remind you, that setting some boundaries and allowing yourself and your husband some proper time for yourselves is going to be important and I hope you can call on others to step in sometimes to allow you that. You will probably get the backlash sometimes, but am sure you are used to that, so look after yourselves too.

Hello ownedbystaffies......mums never had a bpd diagnosis, but I'm pretty sure it is. I can talk a bit more about it if you pm me. 

Thankyou so much for your kind words....it means a lot to me, and will help keep me going!

DearKnowledgeispower20

now I see that your mum’s doctors are aiming at cure it goes along way to explaining her current behaviour, it’s incredibly frustrating at knowing there is treatment available but due to circumstances she isn’t able to start it straight away. However I am sure once it commences she will have something positive to focus on and some of these problems should resolve themselves. It’s still important to get ongoing support for you both as cancer treatment can be a bumpy ride and you have to learn to expect  the unexpected and having external support to turn due to times of crisis is very important. So carers uk, maggies centres and developing a good rapport with your clinic nurses is important as they are good conduit between you and the consultant. I wish you both all the best.

Hi Knowledgeispower20,

Just wondering how you are doing?  Hopefully your mum and you are still working things out and things are getting better for you.

All the best,

Gragon x