tired

[marie souter]

not been on for a while as mom took another horrible episode .. I hate this disease especially pancreatic its ruthless ... so shes been in a hospice to try and get these same old symptoms under control ... so the sickness nausea and pain all this time has been a partial obstruction caused by the stent getting all sludged up .. when shes like this her stomach actually balloons up with gas ... then she vomits horrendously with masses of air coming up with it ... horrible horrible ... then cycle starts all over again .. so theyre now giving her huge doses of buscopan and levomapromazine and something to dry up the secretions in the hopes they can free the obstruction ... been 2 weeks now and they just cant get it under control .. so shes coming home again tomorrow .. shes also riddled with secondary lung cancer (both lungs) and we been told she has weeks as opposed to months left ... I would say I had a break but mom would not stay in the hospice without me so I been there all this time but my sis gimmie a break today..what scares me now is if they can't get the pain and nausea under control now what hope do we have these last weeks .. I can;t bear that her days will be filled with throwing up and pain ... I been living with mom 7 mths now am shattered ... I been offered Marie Curie help but moms refused .. my sis has taken some time off work now my moms in her final weeks .. better late than never eh

[cestrian]

Dear Marie

So sorry to hear of all the additional problems your Mum is suffering from, it must be horrible for her and it is obviously very distressing for you seeing her in pain and discomfort.

As I have said elsewhere I often think, as a patient, it is more difficult for our loved ones who must often feel so helpless. I hasten to add that at present I'm doing fine with no real problems so I need little assistance from my dear wife and family.

What I'm going to say now will sound a bit harsh but you say that you were offered help from Marie Chris that your mother refused. It is you that needs the help and I think this is something you and your sister need to discuss again gently but firmly with your Mum, emphasising that the help is to give you some relief. It is so important that you look after your own health and unless your sister is really going to pull her weight then it very much sounds as if you desperately need some external help. I understand this may be easier said than done but I'm sure you and your sister will find away, maybe helped by your GP or other trusted professional.

Love and Peace

Mike

[Cathy]

Hi Marie,

So sorry to hear this. I am so glad to hear your sister is now taking time off work and, hopefully, will take some of the weight off your shoulders. I know from previous posts you have carried most (all) of the stress and caring responsibilities yourself. No wonder you feel exhausted.

I have to say I completely agree with what Mike has said. Completely. The help is there for you. It might help to point out (gently as Mike suggests) to your Mum that you won't be able to provide the care she wants from you without back up help. The last thing she needs (you need!) is to become ill yourself.

I am sure that Marie Curie must have someone familiar with this scenario and be happy to chat to you about what they can do to help support you.

Good luck! Keep in touch.

Cathy xx

[Bee]

Hi Marie,

I am not surprised as the others have said that you are exhausted. Your own health is crucial and as Cathy and Mike have said you need to get some support. It is there for a reason, please take care of yourself, you are doing am amazing job but you are only human!

Keep posting and share the load with your sister

Take care

Bee x

[PCUK Nurse Jeni]

Hi All,

Marie, I am sorry to hear that your mum is so unwell at this point. Although, as you say, good that your sister has come on board with taking some of the practical side of things on - I do hope it is a good help to you, it can be very difficult to have this round the clock, so you do need help.

Although I appreciate where Mike, Cathy and Bee are coming from, unfortunately, Marie's mother is the "patient" here, and it will be to her that the option of help will be given. If, as the patient, she decides to refuse this, then this is her right. Gone are the days when you would just refer folk to x and y service - now, it has to be patient choice. And, you might be surprised to know, that many folk refuse help from Marie Curie, Macmillan, etc... As health professionals, our job is to fully explain what the benefits can be, and also, try to explore the reasons why they don't want the care, without being "pushy" - sometimes, it is something as simple as not knowing exactly what they could provide, or maybe an anxiety of having a "stranger" in their home? There are many reasons, and if we can try and put their mind at rest, then we might be able to help them make the decision by being better informed.

That said, I DO agree with you that perhaps Marie might need to have that conversation with your mum and being honest in saying that you need help, in order to help her, and to give her the best care. That you need some more expertise - maybe if you have any worries about not being able to do x or y for your mum, then you can chat through this with her honestly, and hopefully, that might bring her round to thinking of you, rather than just refusing for whatever reason she might have. Do you know why she refused, for instance?

I think that's all you can do, and if she still says no, that's unfortunate.

Hope she comes round, and that you get some expert help.

Kind regards,

Jeni, Support Team.

[marie souter]

Thankyou Jeni, Mike, Cathy and Bee for as always your support xx also am so pleased you are still doing well Mike with the support of your lovely family ...

Well with regards to support we're a little bit stuck, mom only has a one bedroomed flat and I been sleeping on the sofa for (actually) 8 mths not 7 ... the option for an outside carer would be to sit in the bedroom with mom as I really wouldn't be happy leaving her completely .. and moms not good with strangers (although shes a warm lovely woman shes led a hard life being dominated and was not allowed friends so has clung to us instead) .. I do see everyones point AND really could do with the help..but I also want to respect my moms wishes ... Jeni is right when they assessed our home situation they were concerned that 99.9% of her care has been given solely by myself so they did try talking to her .. but she was pretty much on the 'no' ... I guess I can understand when mom is at her worst she clings to me ... my sister is now doing every third night for me ... and today when I left my mom was asking for me immediately so I had to say I would come back if she wouldnt settle .. my sister on the odd time she looks after mom tends to call me down ... and I very much left her with a 'rabbit caught in the headlights look' ... so I know this is going to happen ... last night I slept with mom as she was terrified for me to be out of her sight so the likelihood is I will be called back down anyway .. so I'm prepared .. She actually asked me if she was dying last night, I had to think on my feet as shes always said she doesnt want to know. She knows shes terminally ill but not that she is now on the downward slope, all I could say was, right now as you are lying there you are not about to die ... however we both know that things can change .. but I wouldn't leave you AT ALL if that was the case .. Can I just say my stomach hit my toes, I was singing all day and dancing in front of her to make her laugh and generally being super cheerful all day .. to do that ... my heart was damn near tearing in two with pain, sorrow ... I don't know how I'm doing it and keeping myself together or if I've pushed things down so far I'm never ever going to release the pain I have inside me ... I nursed my dad a lot to his last day (COPD)and my moms hands were plucking and jerking ... she became aware of this and looked at me terrified and said .. your dad did that .. WHAT DO U SAY??? Its these moments I can't bear .. these moments when I feel my brain will snap from the sheer pain I feel inside .. it took me so long to get over my dads death (3 years and moms cancer diagnosis to be exact) I just feel like I don't think I will cope this time .. part of me doesnt even care anymore .. all I care about is her and trying my best to alleviate her suffering as much as I can ... also insomniacs are great 24/7 carers .. gd that I can survive on little sleep .. I am actually grateful for that right now .. dammit I'm rambling .. you guys are my release am so sorry xx

[cestrian]

Dear Marie

We have a "smiley face only" rule in this household and have done ever since I was diagnosed with this damnable thing but your last post has reduced me to blubbig over my computer screen. Good job I'm "Home Alone"!!

You poor love so in need of someone to hold you in a big warm hug and reassure you that you are doing absolutely everything in your power to make her life as comfortable as you can - it is so brave of you and I cannot find words to say how much I admire you.

I'm sure all of us are sending you virtual hugs and you feel free to come on here and let it all hang our whenever you feel the need - at least it may help a little to relieve the pressure you are under. As I've said before be kind to yourself as far as your circumstances allow!!

Love and Peace

Mike x

[Cathy]

Hi Marie

You are doing a great job there and clearly a strong lady. In terms of coping - I think you will find reserves of strength you didn't know you had and comfort from knowing you do everything you can to do everything right for your Mum.

Feel free to ramble and rant as much as yuo like.

Lots of virtual hugs from me too

Cathy xx

[KATB]

Gosh Marie you are doing an amazing job and I know how hard it is as I've just been through it with dad but mum was also there constantly and my brothers too. We saw a lot of that hand twitching/doing things - it's strange isn't it?

I feel so bad for you that you seem so alone in all this. Will your mum honestly not consider Macmillan? My dad was so against it but near the end he had hold of our Mac nurse's hand and wouldn't let her go. If your mum doesn't want that support, YOU need it you poor thing

K

x

[marie souter]

OH MIKE .... passes Kleenex (hopes puta is still in one piece) ... so sorry I did a brain splurge and it all just came out ... It does actually help voicing it all ... I'm at the stage of 'Don't hug me or I'll crack' so I think people are frightened to do it lol .. I've kinda done the macmillan talk SO many times now I don;t think I could do it again .. I have a feeling tho our nurse who visits once a day atm to change her syringe driver.. will have another bash at it probably lol ...

Thanks for all the advice guys .. even if I can't follow it all for one reason or another it does help to know that someones listening and I'm able to vent ... Mike your house sounds the best kind of house to be around when the going gets tough ... I don;t think misery and starey relatives help ... what I keep telling relatives is 'HELLO SHE'S STILL HERE' I feel like so many of them are writing her off since the start .. the inevitable ... 'Aw your poor mom .. eeee am gonna miss her' that totally BLOWS my mind .. these people saying that haven't been to see her for 4 mths? .. good news is ... no phone calls yet .. cepting the doctor and the macmillan nurse .. no escape from that but I understand the need for them to be speaking to me ... OH my daughters hung up Halloween decorations ... wow its almost Halloween (when did that happen)? xxxx health and hugz

[marie souter]

K, yeah the hand thing ... I just held onto moms hands last night when she was doing it and talked to her .. I ended up sleeping next to her still holding onto her hands til we woke at 7am this morning .. one of those (never ever gonna forget that) moments x

[marie souter]

Moms hanging on in there but it getting a lot weaker, it seems ages since I saw her laugh or smile, she can't watch tv for for than a few minutes and shes dozing off, she's having her ups and downs and still managing to eat and drink (albeit small amounts)...but its obvious shes not going to recover from this one as she did the last bout .. they're keeping the syringe drivers on all the time now which is a bind as she is wearing two ... but theyre doing an important job and things would be so much worse without them .. can't really say much more .. my mom has set herself another goal .. to be here for christman .. am hoping for her ... my sis has been great helping out .. but shes now said shes probably going to go back to work next week .. so am making the most of the break tonight.. how is everyone coping?

[cestrian]

Dear Marie

Compared to you I simply have nothing at all to cope with!! I've almost completely weaned myself of the morphine as I don't need it so am just following GP's advice to come off it slowly. Chemo continues under the care of my clinical trials team and thank the Lord no side effects at all.

!

Nice lunch out at a local pub with wife and daughter yesterday and ate two decent courses and enjoyed a small glass of red wine (would have been a bottle pre PC). We enjoyed it so much that we booked for Christmas Day as none of us feels like all the hassle of cooking! God willing by Christmas I'll still be feeling as well as I do now - you never know with this damned sneaky illness but my nurses and specialists still seem very optimistic.

You really deserve regular breaks yourself and I think you need to do all in your power to get some rest and downtime to give yourself the strength to cope yourself with all you have to endure virtually single handed.

God Bless and take care of yourself as much as you can.

Love and Peace

Mike

[EmmaR]

Oh my dear Marie ,

You are such a brave girl and a lovely daughter you are doing everything and more for you mum so dont be too hard on yourself , I have been feeling very down this week I think my hubby is deteriorating and it is such a hard thing to sit there and smile , I have the suport of a good family and one of my grandson,s (19 & 6ft 2 ) gives me the biggest bear hugs anyone could give and if I could send him to you i would, the next one he gives i'll be thinking this ones for Marie

Take Care.

EmmaR xx

[marie souter]

Mike,

You need to be poster guy for 'How to kick PC up the arse" .. so glad things are going so well..I can't believe you're even weaning yourself off morphine .. my eyes were out on stalks with that one .. Good call on the christmas lunch .. always a bonus ' washing up ' YEY ... hugz

[marie souter]

Oh Emma,

I truly feel for you .. theres nothing worse than watching them deteriorate and feel so helpless, all we can do is be there for them, someone to talk to and jsut be there, that seems to be what my mom needs so much ... Your son sounds fab .. LOVE bear hugz ... I never underestimate the power of a good hug ... thinking of you and hope your lovely hubby turns a corner xx (a good one)

Hugz Marie

[marie souter]

On a truly crap note ... moms stomach has distended so bad she looks like shes full term pregnant .. its like a drum her poor tummy and so painful, its causing so many problems .. it looks like we are heading (if not already there) to full obstruction .. I have dismissed the notion of a partial blockage of her stent and the professionals are now agreeing with me .. we have zero itching and zero jaundice .. which seems to poo on that theory .. which means the blockage is probably intestinal due to where the swelling is..on Friday I noticed a marked increase in the abdominal swelling and she mentioned a new pain on her upper abdominal left side (which is where a lot of distention is) this has gotten worse over the weekend .. now we are on the crank everything up stage ... shes out of it most of the time now and we have been told as she went downhill so fast it is likely she will be days away from passing ... my sister is here now as lifting mom this last weekend she was very floppy and getting her on the commode was a monumentous task for me .. I've hurt both elbows both shoulders, my left wrist and my back, and I don;t think I can do much more lifting .. I do have a piece of advice for anyone who finds themselves in the same position .. I have since been introduced to a 'sliding sheet' which healthcare professionals can get from equipment services ... was so easy moving her into position on the bed with that .. wish I'd known about it mths ago .. for anyone who's relatives are immobile and too weak to help themselves this is the way to go .. we are being offered marie curie carers everyday now but my sister is stayiing with my as things are at that awful time .. we're having so many visitors I am shattered but how can I deny them a chance to see her .. Nothing prepares you for this no matter how long you have been terminally ill no matter what anyone says .. I know from my dad (he had copd) ... people keep saying its the waiting game .. but i wanna scream BUT I DONT WANT HER TO GO ... will keep you informed .. my sis and two brothers have all had words with me about how worried they are about me and how I am gonna be afterwards .. although their intentions are good I feel like my grieving process is going to be interfered with because of this ... I dont know how to explain it ... cept I will feel like I cant grieve incase they think I am grieving too much .. does that make sense ... dammit I over analyse stuff ... so many emotions going on .. but I will update when I can .. hope everyones ticking along x

[nikkis]

Dear Marie,

Everybody grieves differently and no one can tell you how you should act in this devastating situation. Your mum is so fortunate that you are there for her, and I really hope in the future you will look back at this time and appreciate what a great job you have done looking after her.

Just try and look after yourself a bit too, as I know that is what your mum would want.

Nikki

[jules 2015]

Hi Marie

You are doing a fantastic job, don't be too hard on yourself.

My dad passed away in hospital in the end on Friday. We knew he only had limited time and I remember someone saying to me 'its just a waiting game', I thought this was so insensitive because I didn't ever want him to go. From the time my dad was diagnosed I spent time with him everyday and can honestly say I couldn't have done more. My dad went downhill very quickly on his last day and knew he was dying, we said our goodbyes and it was so very hard. I am relieved that he is no longer in pain but cannot come to terms with the fact that I will not see him again.

We had just got to the stage with dad that we were going to arrange more carers to come in to help my mum. I would suggest you tell your mum that you need some help, to make sure you are both safe and explain that you are exhausted and are finding it hard to do all the lifting. I am sure she will understand, my dad didn't want to die in hospital but in the end he said he felt safest there for both himself and my mum.

Sending you lots of virtual hugs as I know what you are going through.

Julie x

[Thriae]

Marie, I feel about what you describe, the same way I do about my mum looking after our dad. We try to help around work and children but it's mum who is there 24/7 trying to be a comfort and exhausting herself with practical stuff too. This is you, and it is your sheer love and loyalty that keeps you doing this.

I'm sorry your mother is unhappy about you sharing that burden but I admire you for honouring her wishes in the way that you are.

I empathise with the waiting... Waiting for the grimness to end but wishing it wouldn't because of what it signifies.

I don't know what to say to you that could possibly help

I hope you can, at the very least, allow yourself the same compassion your have shown in giving you time to grieve and to recover from the sheer hard work of loving and caring and supporting your mum in her darkest of times.

Wishing you strength and fortitude and sending you heaps of love x

[cestrian]

marie souter wrote :

> Mike,

>

> You need to be poster guy for 'How to kick PC up the arse" .. so glad

> things are going so well..I can't believe you're even weaning yourself off

> morphine .. my eyes were out on stalks with that one .. Good call on the

> christmas lunch .. always a bonus ' washing up ' YEY ... hugz

I claim none of the credit for this which belongs entirely to the surgeon who did my nerve separation op back in July. This immediately stopped the chronic pain in my abdomen and back that quite a few on the forum have experienced. If anything I think I clung on to morphine a bit like a comfort blanket and was taking 50 mg Zomorph morning and night until I realised it was just an unnecessary habit. Now one tablet every two days so soon down to nil.

I just can't speak too highly of the keyhole surgery I received for this pain relief but think I was very lucky to get this done before any other treatment started, and indeed before I really knew if chemo was going to be possible. To be honest I'm not sure I'd be here now if the pain had continued because suffering pain is against my religion - I'm a devout coward!!

Love and Peace

Mike

[cestrian]

marie souter wrote :

> Mike,

>

> You need to be poster guy for 'How to kick PC up the arse" .. so glad

> things are going so well..I can't believe you're even weaning yourself off

> morphine .. my eyes were out on stalks with that one .. Good call on the

> christmas lunch .. always a bonus ' washing up ' YEY ... hugz

I claim none of the credit for this which belongs entirely to the surgeon who did my nerve separation op back in July. This immediately stopped the chronic pain in my abdomen and back that quite a few on the forum have experienced. If anything I think I clung on to morphine a bit like a comfort blanket and was taking 50 mg Zomorph morning and night until I realised it was just an unnecessary habit. Now one tablet every two days so soon down to nil.

I just can't speak too highly of the keyhole surgery I received for this pain relief but think I was very lucky to get this done before any other treatment started, and indeed before I really knew if chemo was going to be possible. To be honest I'm not sure I'd be here now if the pain had continued because suffering pain is against my religion - I'm a devout coward!!

Love and Peace

Mike

[laura]

marie, i am thinking of you, and sending love and strength to you, you are doing a great job as a daughter and carer, the way you are you will have no regrets and plenty of memories of happier times.

with love laura xxx

[Cathy]

Hi Marie

I can only really echo what everyone else has said - you are doing a fantastic job for your Mum but I hope you find time to take of you as well.

Lots of virtual hugs to you

Cathy xx

[J_T]

Can't say much more than has already been said Marie, you are doing a great job under very difficult circumstances as I know only too well.

Your mum is so lucky to have you. Be kind to yourself.

Julia x