Advice re spending less time with my mum

Hello. Reading your post is like looking in the mirror at myself  I really feel for you..  My situation seems to mirror yours..

My mum has secondary lung, spread to lymph glands and spleen..  Last week she had an MRI as they've found something on her brain, it's not cancer but also they font know what it is  

I've also moved home, my life has stopped. Rarely see anyone, my job is at threat  

My mum has had one treatment of Pembro but has lots of other health issues so since diagnosis in December I have not worked and become her main carer. 

I can't leave her for long periods as she suffers panic attacks which make me feel guilty leaving her also. 

The realisation that cancer just doesn't effect the person that has it but it's devastating for everyone around them is quite overwhelming  

I'm so sorry to hear you're going through a similar thing. Is your mum also receiving immunotherapy? I know it can cause neurological symptoms but they are supposed to be rare. 

I often think this situation is my fault as I set a precedent where I've allowed my mum to become so dependant on me. Do you go to any therapy? I find counselling helps a lot, I go to a local cancer charity called Clan. It helps me feel less guilty and gives me a chance to vent.

Do you think you'll try and change things to get more time for yourself? I feel like I've got to a place where I no longer have a choice, I know I'm in dangerous territory with anxiety and low mood so I think I need to have a talk about this with my mum. I think she'll feel like she's being abandoned, which is silly because I'm only going to suggest I get a part time job and have Fridays to myself x

Hi Magpie101, so sorry to read your post your experience sounds not that unusual but is very outside any level of experience I can share. What I would suggest is you ring the helpline here 0808 808 0000 open 8am to 8pm where they will be able to offer you more direct support, it is a free phone call from landlines.

<<hugs>>

Steve

Good evening. 

Yes my mum has had one treatment of Pembro. She's been admitted twice into hospital with extreme shortness of breath (more than normal)  and her eyesight us blurred.. She's on a high dosage of steroids now to try and help open her airways  hopefully she'll be well enough to have second treatment next week.  We were both up at 3am this morning  lost feeling in her left leg and it was ice cold , did return back to normal during the day but again tonight it's gone the same.  Not sure if it's a side effect or her arthritis 

I have wrapped my mum up in cotton wool since diagnosis especially as she's suffering with terrible anxiety attackes also  Now she gets anxious if I leave her to pop to tesco  

We are currently not receiving  any therapy as my mum is refusing any support, she's a lovely lady but very private and not very sociable, especially now .  We live our lives at home day in day out  only leaving these four walls for hospital appointments  

I am the main mortgage payer, my wages have just dropped to half, I'm in the process of building an extention for her so she can continue to live as independent as possible and not have stairs to worry about  so have builders to pay,

I feel like I've lost my life, independence, could lose my job and emotionally I am a wreck from worry and lack of sleep, I feel guilty for feeling like this  after all its my mum that's poorly  , I feel like my whole world is falling apart and I can't stop it no matter what I try. 

I know I need counselling and my anxiety is also rather high  As I'm 100miles an hour constantly.  I cannot relax at all.. I don't know who to turn to for help as its not me that's ill  its my mum  I don't think I deserve to have support as I feel its my duty to care for her and should just get on with it  

I don't think your mum would feel abandoned but after seeing the change in my mum since diagnosis I really don't know what to say, diagnosis changes their way of thinking, has in my mums case anyway  .  

My mum was so strong, my rock, now she's so vulnerable and frightened  It scares me 

X

Please, please look after yourself. Yes, it's your poor, lovely mum who is ill, but you also count and you need to look after yourself as well. Phone Mcmillan for a chat, you can't keep going at this pace. Hope you know others are thinking of you

Oh, it's quite upsetting to read your post as I relate so much. I hope your mum is able to start treatment again soon. I know everyone is different but my mum responded really quickly to Pembro and summer 2018 was really quite lovely for us. Prior to treatment, I was so sure that I was going to lose her. Things can turn around really quickly, so don't lose hope. 

My mum is rather, um, high maintenance and since diagnosis she's became lost in her own world, which must be a horrid place to be. Normally, she's very thoughtful and considerate but now she can't stop ruminating. She's told me that when I'm not there all she does is sit and cry, thinking about dying and looking back on her life. It's just so gut wrenchingly sad, it makes me want to scream. 

I've decided I'm going to talk with her tomorrow about having more time for myself. I've compiled a list of support groups and charities and I'll suggest she talks about her feelings with a professional. I'm certain this'll go badly but I just can't take all the pressure, I need a break every now and then. 

Have you had a look for councelling and support in your area? You can't keep going at full steam ahead or you might burn out. They're are also charities that can provide some funding for respite. 

Look after yourself and keeping my fingers crossed that your mum gets her treatment started again soon. Hugs xxx

The bit about your mum being high maintenance made me smile  my mum is exactly the same ! and being in her own world and bubble is so how my mum has lived since diagnosis in December 

Macmillan are calling next week and we have palliative nurses calling Wednesday to chat to us  I'm hoping we can both get some sort of support  

We have spent all day today in hospital, doctors think she has a vascular clot in her left leg , we are meeting a surgeon 8am tomorrow for a scan.  There seems to be something every week that knocks up back ten steps

So another worry as to whether she'll be well enough for her second treatment next week

I hope your chat with your mam goes well tomorrow and she gets to see how you need some sort of normality in your life in order for you to continue caring for her in the wonderful way you already are.  Thank you for your messages  Xx. 

Thank you so much for your lovely message  

I will phone and admit I need some sort of support, I'm realising that I'm not invincible X 

Hi Caring for mum, how is your mum doing? Has she managed to get back on course with her treatment?

I'm not sure if this would work for you guys but I have a wee suggestion re getting a break. I had a chat with my mum and asked her what she was scared of when I'm not around. She said she's worried she collapses, falls or that something bad happens when she's on her own. So, we bought a camera for the house that gives me live feed for sound and vision on my phone. That way I can see what's going on all the time and, if she were to have a fall, I would be able to see and we could talk to each other without the need for a phone. 

It's quite invasive, so not to everyone's taste but it's solved a lot of problems for us. I can now have a cpl hours in the gym or see friends without worrying. Plus I now know which dog is responsible for all the food that goes missing hehe. 

Hope all is well X 

Hello caring for mum and magpie101,  I hope you don't mind me joining in but your situations are so similar to mine. My dad was diagnosed stage 4 lung cancer in August, with secondaries in lymph notes and adrenal gland, later spreading to 3 very small tumours in the brain. New years eve a single high dose of radiotherapy will hopefully have sorted the brain tumors. He's been on pembro since October and has massively improved.

He moved in with my partner and I in Lincolnshire in September, with me taking him to appointments at Leicester. I also completely wrapped him in cotton wool, resulting in huge friction with my partner.

Dad is also becoming high maintenance.... 

I'm very lucky that I work from home, and my employer and line manager are hugely supportive with flexible hours to do hospital stuff, but my job is a compliance role so very demanding and stressful anyway.

By November the constant back and forth 4 hour round trips to hospital really taking its toll, friction and rows with my partner increasing daily - dad isn't the easiest to live with, v selfish so I completely understand the OH being driven completely insane (which doesn't take much on a good day as he has OCD / depression)

End of Dec the OH moved out, hoping him not living with dad would reduce stress all round and salvage our relationship. January, dad and I moved to a bungalow in Leicester. 

Dad perked up so much, loves the new place, bought an electric bike so he can get out and goes to stay with his ex wife & see his friends most Sundays. He's gone mad in the garden, out all day digging and planting last month when it was mild.

So when my partner suggested a last min fortnight holiday - make or break kind of thing for us, I thought I'd grab the chance while dad's doing so well. If he can cycle 4 miles, dig blackberry bushes out of a 28 ft boarder, he's fit enough to be left alone for a fortnight! Plus my sister invited him to hers in Yorkshire but he refused, choosing to stay at home.

He's clearly furious I chose to go away. Hasn't said how nice to be invited on holiday, nothing positive, only how lonely he'll be (his choice as he could go to my sisters!) 

He got a taxi to treatment half way through my first week away and typical my luck, he's gone downhill. Aching, sick, headache, tired. And my goodness, hasn't he let me know every time I phoned while away. How bored, lonely and ill he is. (he's an expert at being very ill post treatment if I've had any plans to go out at all.... If he wants to go out to see friends, then strangely he seems fine and isn't pembro a miracle drug with so few side effects.....) 

The make or break holiday turned out to be the break, not make, so I'm now newly single and grieving the end of my 9 year relationship. And although we've parted on very good terms, in daily contact with him being actually a better support now, I just feel so overwhelmed by it all. Work, splitting up and dad throwing toys out the pram if I go away. 

Sorry its turned into a marathon outpouring! Just needed to get it down I think.