taking responsibilty to get me where I want to be

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CRANKY40 said:

You don't sound like you're moaning at all. Your life is hard just now. Your sister seems to be feeling it too - just because she's doing less than you doesn't mean that either of you are more able to cope with the situation than the other. On paper, my sister's life is way better than mine but she is the one on anti-depressants, not me. Everybody has a different tipping point. It sounds like you and your sister could do with a trip to the pub together to have a night off and a good heart to heart over the situation rather than just swapping sentry duty which is what you do now. It's not allowing the two of you to have a proper relationship either. 

If your mum is seeming more confused it could be a number of things. She could have an infection - get a urine sample checked just in case. It could be her meds or it could be the cancer spreading. It's possibly worth mentioning it to her doctor or the hospital just so they know where you are up to. 

she is becoming more vacant , she has the tv on and doesn't appear to be watching it , tested the theory by asking her a few questions about whats going on. Also the other day when I came downstairs from working she was convinced that I had in fact been filming the game show tipping point but hadn't managed to get the money !

A few weeks ago she mentioned vision problems to the macmillan nurse , I think its possibly the cancer spreading and shall be having another conversation about it with macmillan as they tend just to brush over everything.
Be nice to have a conversation with a doctor or a hospital , we haven't seen or heard from our oncologist/hospital  since mum was told no treatment on the 27th March and we dont get doctors reviews.

Just macmillan once a week on the phone and the same with district nurses. 

Your right regarding different people having different tolerance etc , my sister has never coped with anything I'm always the one who has to be strong but again even that gets tiresome.

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Humdinger1 said:

Efes just checking in to say how well you're doing though you don't see it right now.  Your attitude is the right one: unless a cure or huge improvement is possible, the current state of affairs isn't helping anyone inc your mum.  Sending you gentle hugs love Humdinger x

thanks Humdinger, I'm just worn out with life I think.
I have great admiration for people who do this for a living or for loved ones who have limiting illnesses

CRANKY40

Is your mum on morphine for pain control yet? That does cause confusion but as you say it's concerning that she seems worse than usual. Maybe give your gp a ring and ask them to call and see her? 

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CRANKY40 said:

Is your mum on morphine for pain control yet? That does cause confusion but as you say it's concerning that she seems worse than usual. Maybe give your gp a ring and ask them to call and see her? 

shes been on morphine since feb , the dose hasnt been increased for quite some time but she has an oral top up if she needs it , if we had recently jumped in dose it would make sense
Im going to mention it to macmillan before she talks with mum tomorrow but they seem reluctant to suggest to you that things may be progressing , its all about positivity !

Buffythedebtslayer

Hey Efes XX 

My best friend is in a similar situation to you with her mum and it is awful. truly I don't know what to say, in comparison my mum is easy. My friend is in contact with a hospice - her mum wants to go there, is yours intending to stay at home? I can believe the lack of doctors, my sister (in the US) is constantly asking why the doctor hasn't been round to see Mum. We get a district nurse to do blood tests. That is it. 

You are doing brilliantly  you know.xxx

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Buffythedebtslayer said:

Hey Efes XX 

My best friend is in a similar situation to you with her mum and it is awful. truly I don't know what to say, in comparison my mum is easy. My friend is in contact with a hospice - her mum wants to go there, is yours intending to stay at home? I can believe the lack of doctors, my sister (in the US) is constantly asking why the doctor hasn't been round to see Mum. We get a district nurse to do blood tests. That is it. 

You are doing brilliantly  you know.xxx

Mum says she wants to stay at home but will go to a hospice if the level of care becomes too demanding , Macmillan don't encourage you when you ask about the hospice , its as if they don't want everyone wanting to go there , they told us basically that if there is a bed then your able to go but couldn't really answer when we asked WHO decided it was too much etc and when a preference should be made , it is very much down to availability though.
Hoping the marie curie referral may bear more fruiton.

I think we are just at an age when our parents do require much more of us , some would call it a burden and some days when its really tough it certainly feels like one , my mum was very similar to yours in terms of the house before she got ill , now shes forever pointing out things that need doing. Although mum is very weak and frail and obviously very ill she did manage to go and do some washing up yesterday whilst I was upstairs working which then makes me wonder if she could do more for herself but its easier to get one of us to do it 

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I have taken a positive step today , I have actually booked a viewing for a 2 bed ground floor maisonette about 3 miles away from where I live. 
Its a fixer upper , needs a complete overhaul , its £25k below my max budget as it stands if I were to disregard mums house and buy as I had intended to do. 
It has a garden and a garage , I'm going to drive past later and do a little kerbside check 

I need to get some kind on plan for when this situation changes , property in our area is going up at stupid rates , experts predict a bit of a crash but no sign of it , the problem for me is although property is rising my deposit and my lendability isn't rising so potentially I may not be able to afford to buy my sisters share of this house and do all of the remedial work required and frankly if I have to cut corners on the remedials whilst being maxed out on the lending etc , technically having all my eggs in that basket then I'd rather walk away.

Another option is to look at places that are affordable to me now as things stand , for example the maisonette I'm viewing , technically I would have money to fix it up and then further down the line I'd have potential to either clear the mortgage completely or invest in a buy to let and generate more income or money to invest. 
I'm starting to think this is the better option , that perhaps life would be much more manageable and comfortable.

I've got nothing to lose by viewing the flat and seeing what the money buys me , STrange thoughts for a thursday afternoon I know but just a bit of a brain dump and I'd welcome any feedback 

CRANKY40

If you worked in a care home you'd do shifts so you're actually doing about 1 1/2  - 2 full time jobs for free on top of the full time job that you already have. No wonder you're feeling the strain. Have you spoken to the hospice at all? There'd be no harm calling them direct and asking what the criteria is for respite care etc maybe? 

My best friend ended up being admitted to hospital because she collapsed but was then transferred to our local specialist cancer hospital rather than the hospice because of the rapport that she had built up with her oncologist over the years. He wanted to make sure that she died without pain and she did. My friend's cancer spread to her spine which meant that she became unable to walk and then to her brain which caused seizures. We took turns to sit with her in the two weeks that it took for her to die. There was always 2 people at least (sometimes 8) in her room and the unit let us come and go as we wanted. We chatted, reminisced, laughed and we loved, all together supporting each other, even the person that was leaving because for the first bit she could answer us. Hospitals aren't always awful places. I've only stuck this in so that you can see the other side of things not to make it about me.   

There are possibly difficult decisions ahead for all of you but as much as you are doing this for your mum try and think what you want from it too. Will you end up regretting things you couldn't do for your mum because you were shattered? I personally don't think that you should regret anything because you're doing an amazing job but only you know what is going on in your head. Would it be better for you for your mum to be in a hospice so that you are free to grieve as her daughter instead of trying to do 2 carer shifts as well which aren't actually leaving any time for you to process anything properly? 

Don't feel like you're complaining - we know that it's lack of help that's the problem, not lack of willingness to look after your mum. Don't feel that you have to respond to any of this on here either. Some things are meant to be kept private. For what it's worth I'd still ask for a urine test for infection for her too. 

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CRANKY40 said:

If you worked in a care home you'd do shifts so you're actually doing about 1 1/2  - 2 full time jobs for free on top of the full time job that you already have. No wonder you're feeling the strain. Have you spoken to the hospice at all? There'd be no harm calling them direct and asking what the criteria is for respite care etc maybe? 

My best friend ended up being admitted to hospital because she collapsed but was then transferred to our local specialist cancer hospital rather than the hospice because of the rapport that she had built up with her oncologist over the years. He wanted to make sure that she died without pain and she did. My friend's cancer spread to her spine which meant that she became unable to walk and then to her brain which caused seizures. We took turns to sit with her in the two weeks that it took for her to die. There was always 2 people at least (sometimes 8) in her room and the unit let us come and go as we wanted. We chatted, reminisced, laughed and we loved, all together supporting each other, even the person that was leaving because for the first bit she could answer us. Hospitals aren't always awful places. I've only stuck this in so that you can see the other side of things not to make it about me.   

There are possibly difficult decisions ahead for all of you but as much as you are doing this for your mum try and think what you want from it too. Will you end up regretting things you couldn't do for your mum because you were shattered? I personally don't think that you should regret anything because you're doing an amazing job but only you know what is going on in your head. Would it be better for you for your mum to be in a hospice so that you are free to grieve as her daughter instead of trying to do 2 carer shifts as well which aren't actually leaving any time for you to process anything properly? 

Don't feel like you're complaining - we know that it's lack of help that's the problem, not lack of willingness to look after your mum. Don't feel that you have to respond to any of this on here either. Some things are meant to be kept private. For what it's worth I'd still ask for a urine test for infection for her too. 

this is my fear , that i'm so focused on mums care and her well being that i'm too worn out or can't find the time to talk to her , to tell her how much i'll miss her or how much i truly appreicate all that shes given for me.
Neither of us is very good at expressing ourselves , its never come naturally in our household , mum keeps things in and I guess I'm pretty much the same 
She said to me as she was settling down the other night that she really appreicates everything I do , shes just not good at expressing it , that works both ways.
I know her time is limited , to what I don't know and although I understand the destination of this journey I am not sure if I have truly processed it as I am in auto pilot with her care.

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@CRANKY40

thank you by the way for taking time to write such a thought provoking post