23 and completely lost

Amy K

Hi Amy

Welcome to the online community and the Carers only forum group and I'm really sorry to see you here and to read of the predicament you have got yourself into.

It's a very difficult question to answer as you seem to want to have a break from being dads carer but then on the other hand you feel that no one can care for your dad like you.

You really must take all the help that is offered whether it be from your mum or aunties I am sure that they will be able to give your dad care and can do everything you are doing for dad to give you a break.

You know you're isolating yourself from your friends eventually they will stop asking you to go out or even worse getting in touch with you.

It is commendable that you are willing to put your life on hold but you are suffering the consequences of this and from your post you are aware of this as every little problem is turning into a major problem and before you know it your own health will begin to suffer then who will look after dad, you can't do it all on your own you can't give your dad 24 hour round the clock care, take every offer of help that is offered have some ME time, meet up with your friends as often as you can, tell your mum and aunties how you are feeling and that you need a break, let them surprise you perhaps they will be able to look after dad just like you do.

Help from outside sources is available please have a look at these 

Carers UK - Get support

Get local support - Carers UK

AgeUK  support for carers

and find out if they can help you with their befriending service and give you a break

I'm not sure if going to a carers support group would be for you seeing your age but you could have at look at Maggies Centre and see if they have a centre near to you and if they have, give the centre manager a ring to see what they have available for you.

No matter what you do you must do something soon to get help and to repeat myself Take every offer of help you get, you know it makes sense.

Keep in touch with us to let us know how you are getting on you are always very welcome to come on here to rant or rave, let off steam (and believe me we all do it at sometime) or just come on for a chat, being as this is the carers only group you can come in and lean on us, I can assure you that each and everyone one of us understands everything you are going through and we can give you help, support and advice when you need it, all you have to do is ask and we all rally round you.

I have now put on my other hat as the online champion to the Ileostomy, colostomy and stoma support group and if I can be of any help with the management of your dads colostomy let me know if he has any problems and I'll work with you to solve them you can ask me about anything to do with having a stoma, yes I did say you can ask me anything and I can found here, over in the stoma support group and also on the Bowel (colon and rectal) cancer forum group at anytime just give me The Bodach a shout out and I'll do what I can to help you.

In the meantime please think about what I have been saying and Take every offer of help that's offered and regain your life and start to enjoy it again and as I said above You know it makes sense.

Remember to keep in touch with us.

Ian 

Hi Amy K, I completely agree with Bodachs very supportive response. I have a daughter who is 21 and she too has a very poorly father with cancer. I know her dad would not like her to feel like you do and I'm assuming your dad wouldn't either. Have a break, go out , do something for yourself  - you need to partake in a bit of self care.

Hi Amy,

You're not alone - and I mean that from two perspectives.

1. This community is the perfect place to come and talk, rant, rave, vent, scream, swear, laugh and learn, because we're all taking the same journey, just on differing paths.

2. Everyone here has, at some point, been exactly where you find yourself now.

Please bear with me. This will be a long post, but I truly empathise with you, having been exactly where you are now.

Being a carer was the hardest thing I've ever had to do. I felt that I had been yanked out of my comfortable corner and thrown into a hell that I had no experience in, was told to learn as I go and every time I thought I had a handle on things, cancer would come in and reshuffle all the cards.

Prior to becoming my late wifes carer, I worked for an Australian State Government department and, for an extended period, I was seconded to our States Fire Brigades. One of the first things they did was to take us out to their training grounds so we could watch a demonstration.

The first thing they pointed out was that the head honco on the fire engine never went into the fire. Never. They explained that this was not because he wasn't trained but because it was his job to stay safe so he could control who went in, where and why - these are the first steps in ensuring the safety of his crew. If he didn't stay safe, he couldn't keep the other firies from getting harmed.

Why I didn't apply this "care for yourself first so you can be relied on to care for others" principle for the first three years of my wifes cancer trip comes down to exactly what you wrote - I felt that I couldn't trust anyone else to look after Marg as well as I could. It was only when I found myself at the edge of a physical breakdown that I realized that I had been looking at it all wrong.

Firstly, I made a one page sheet that contained ALL relevant info; her name, DOB, Medicare number (like the NHS), her disability pension number, her phone number, my phone number, her oncologists details, her Medical Reference Numbers (MRNs) for all the hosppital she was admitted to, all of her meds and supplements (including name, strength, qunatity taken, frequency taken, etc.), dates and details of all hospital procedures, you name it, I fitted it on there. Ambulance drivers, doctors and nurses absolutely loved this as it gave them all the primary information they would need for an admission or a transfer. Having it documented also meant that, when things become urgent, you have an absolutely reliable record to hand over, rather than relying on a memory that is under pressure.

Then we started a daily diary, recording how she slept, how she felt, any side effects, BP, temp, O2 levels, what doctors or nurses we saw each day, what was discussed, what meds were changed, deleted or added, etc. so we had a day-to-day running account.

Then I documented what was a typical day, in terms of the things I did for her - things like; 5:30 get up and get breakfast ready and make sure morning meds are ready on her bedside table, 6:00 take in breakfast (if she didn't feel like getting up) or have it ready for her; 6:30 put her back into bed (if she got up), 9:00 get bathroom ready if she feels like a shower, 9:30 shower and help dress her, 10:00 hand, foot and leg massage (she suffered from hand-foot syndrome from her chemo drugs), and so on and so on (through to about 1:00AM. Naturally, this schedule was elastic, as side effects, appointments and life in general can and did skew our schedule.

Then I set up an online calendar that contained only her medical and support appointments, reminders for doctors appointments and prescription refills, etc.

Once I had done all this, I took a good hard look at the whole landscape and asked myself, "Why am I the only person on the face of the earth that do all of these things?". 

There was NO sane, logical answer to this. My over-arching desire to care and protect for Marg was based mainly on my own fears and emotions and it sounds pretty much exactly like what you have described.

You need to accept help. If you burn out and you are the only person that knows all the details, who could possibly step up and take over? Could this adversely impact your dad?

Accepting help doesn't mean that you're not good enough, not caring enough, not strong enough, not devoted enough.

It means you're human and you're have physical, mental and emotional limits like all of us.

The very first thing I would do is to tell your Dad how this is affecting you. People with cancer can get very introspective and often fail to see the impact their disease has on those around them.

If your dad is the nit-picking, minutae loving type, then get him involved in the documenting process. Record what you know and get him to check, verify, correct or modify where necessary. Get him to run the daily diary or get him to double check your entries. Get him involved in a capacity other than just "patient". Put some purpose and control back in his life.

You say that you have aunts that could help but you don't let them because you doubt anyone can do it like you do. Document everything (like above but adapt it to whatever suits you, your Dad, your collective circumstances and his bastard cancer). Show it to your aunts, tell them you need help, find out if they are capable and willing to follow your documentation and stay with them for the first couple of days while they do what you do. They will probably surprise you.

You said "I’m having and wanting to put my life on hold to care for my dad but I need to get a sense of normality back as I feel I’m losing my personality." 

If your current circumstances make you feel like this, then something has to change. There's currently only three dogs in this fight; you, your Dad and cancer. Cancer isn't going to pack its bags up and leave, your Dad still needs care and comfort, so the only real avenue for change is in yourself.

Learn to trust others (but initially follow the "trust but verify" approach) and to let them help you and your Dad.

You also said, "I don’t know where to turn or who to speak to as I have never found anyone close to my age in a similar situation?". Being a carer isn't restricted to a particular age group and the problems that carers face are universal. I'm in my late 50s and cared for my  beloved  wife for a bit over 7 years and can say, in all honesty, that, five years ago, it could have been me writing that post. Every single word of it. Complete with the emotional despair behind it. Complete with the distrust of others.

Please, look after yourself so you can continue to make sure your Dad gets the very best possible care and comfort you (and your aunties) can provide.

Reach out to someone.

Anyone. 

Peace,
Ewen :-)

P.S. I truly, truly understand what you mean when you say you're losing your personality. Even now, I'm still rediscovering how much of "me" is left.

Hi Ian, 

thanks for getting back to me and sorry it’s taken so long for me to reply. 
You’ve got me exactly right and my situation still stands. My dads family has remained at a distance and provided no support despite knowing my constant stress. I have had no option but to take a break and make plans to spend sometime with my friends. Which I am looking forward to but also feel great guilt about as I know I’m my dads main port of call. 

I’ve been to Maggies and didn’t find it helpful for me at all. 

I'm managing as best I can and am slowing trying to get parts of life back no matter how difficult. 

Thanks- Amy

Hi Sunflowers,

thanks for your response. I agree with you and I’m finally managing to get some breaks in. Sending your daughter lots if well wishes. It’s a horrid position to be in - hoping she is having some breaks too and time out for the ongoing heartache. 
Amy. 

Hi Amy, only just read your post which was dated 31 / 08 / 2019 so wondering how you are doing and have you managed to cope with the awful situation for you and your dear Dad? It's just that my wife also has Stage 4 bowel cancer and I need to prepare myself for what lies ahead. I am struggling even now but she has been amazing and is pretty much carrying on with her life as much as possible, but I know there will be tough times ahead.

I wish you all the best, 

Regards, Kev

Hi Kev,

sorry for the late reply I have only just seen this myself. We’re doing okay, despite the obvious restrictions in place for everyone at the moment. Dads chemo has been paused because he has had 16 continuous cycles, and therefore needs to time to build up his immune system in order to first and for most keep him as best protected from the virus as possible, as well as shielding of course. Chemo has gone well so far, signs of  shrinkage across all tumours in the bowel and across the liver. Consultant has kept him on the immunotherapy alone for now and plans to scan after two cycles to see if this has had any varying impact. Obviously good days and bad, but like your wife my dad very much continues as normal as best he can and remains in good spirits. He’s so strong and I’m so proud of him. 

How are things for you and your wife? Let me know if I can help you in any way at all. Looking forward to hearing from you. 

Amy

Hi Amy, thanks for the message and good wishes. I don't go on the site too often these days so it was good to see that your Dad is doing well - it does sound very positive so I really hope it can continue for you both.

Your Dad's situation sounds very similar to my wife's in that she is still pretty much carrying on as normal. I think the isolation part is the most difficult for her at the moment - she has always enjoyed getting out and meeting friends so it is especially tough on her at present. She has just had her 5th session of Chemo and the oncologist decided that after the 6th she should have a break - partly I think to keep her away from the hospital at this difficult time. She is still eating and sleeping well and has had no side effects from her Chemo and no further symptoms as such so we just keep on in a hopeful frame of mind.

I feel I am coping better than I did with the situation but I think that is because I started on antidepressants and it certainly seems to help me get through the days better now - don't know if you have needed any medication to help you?

Please stay in touch and let me know how things are going for you. I really wish you all the best - you are doing a great job.

Take care, stay safe...
Kev

Hi Kev, good to hear from you. 

Sounds like we’re very lucky to have such positive and strong people in our lives. I agree that the current situation it’s taking its toll at the moment. Me and my dad love going out for walks together and having a good natter (whilst we enjoy and ice cream or two haha...) and we’ve been really missing that. But for now board games and our competitive natures are keeping us occupied. 

Have you and your wife tried using Zoom, or FaceTime to connect with her friends? Me and my dad have been using those kinds of platforms to join birthday celebrations and catching up with family / friends. Although it’s definitely not the same it’s nice to see him chatting with others instead of me boring him all day long (and vice versa haha)!

So glad to hear your wife is coping so well with the chemo. Would you mind me asking what treatment she is receiving? My dads on Florfiri and Panitumumab (immunotherapy). He’s been low on calcium and magnesium as the treatment continues but this is extremely common and managed well. He’s had a few infusions but able to carry on. So that might be something to be aware of for the future if your wife is recovering similar treatment. But again, be reassured it is common and managed well. Does your wife have a stoma? If so, I’ve gathered some helpful tips and tricks along the way that have helped my dad gain some control back and you may find (if your wife has a stoma) this may become increasing hard to manage in the future with the more treatments she has. I’d be more than happy to share these if that’s at all relevant or helpful. 

So pleased to hear you’re coping a lot better in yourself. It’s such a horrid situation to be in and nothing can prepare you for it. I’ve been there myself and just after diagnosis I suffered with really bad anxiety and depression. I hardly ever slept, was constantly tearful, had frequent panic attacks and was generally struggling to hold it together. I was given sertraline and propananol which I took for several months. I then felt I was able to manage they way I was feeling and found time for myself and coping strategies that worked for me. So with the help of my GP I slowly came off the medication and I am able to manage. Not to say I don’t have rough days now, I most certainly do but I’m able to find a way to cope a lot easier and know how to change those thoughts and feelings. I have subscribed to a craft box, read regularly and take time to chat to myself and be really honest with the about how I’m feeling. That really helps me and I feel like a whole load has shifted after doing so. I hope you are finding some time for yourself too. I know I really struggled with feelings of guilt and not being there for every moment of the day to being with. I couldn’t face the idea of anyone going to appointments with my dad besides me. Now I’m able to accept that him going with other family members or friends is good for the both of us. We’ve really benefited from doing that. 

Please let me know if you come across anything you’re not sure about or are having a rubbish day. I might not be a medical expert but I can definitely relate to all of the emotions you might be feeling. I can confidently say I’ve been through them all. 

Sounds like you are being a huge support to your wife. Sending you both lots of well wishes.

Take care,

Amy

Hi Amy, thanks so much for your thoughtful and detailed reply. We really are in a similar situation regarding the people we are caring for.... both with similar conditions and both such very loved and important people in our lives. Like you, I also feel so proud of the way my wife has coped with this illness... so strong and determined despite the treatment that she has had to endure. She had 10 sessions of Folfox Chemotherapy last year which she was able to tolerate very well. Unfortunately we then had a new temporary oncologist who decided that adding Cetuximab to the mix would be beneficial but my wife had such a bad reaction to it that they took her off it after only 1 session and then gave her a break which went on for 5 months... She certainly needed the break to gain some strength again as she was so shattered. This year she started a course of Folfiri like your Dad, and has now had 5 sessions with the 6th next week (on her Birthday)! Again she has tolerated this really well. The plan is then to give her a break and scan at some point after this and then decide the way forward. As I say, at present she has no symptoms and has no need for painkillers etc. She doesn't have a stoma as she was not able to have an operation when she was diagnosed. Basically they said it was inoperable but treatable....

I can tell from your message that you have gained strength over the months which is really admirable and so important. I also felt that I couldn't cope at the time but have been on sertraline also and I do feel it has helped me with the sleep problems and the anxiety etc. I wouldn't like to come off it however as I feel I may be back to square one again. I was also having some counselling sessions but that has obviously had to stop with the virus situation, but I do feel that I am 'managing' the situation better than I did previously.

Thanks again Amy for your support and I hope I can be of help to you if you need it at all. We're all trying to support each other in this awful situation.

Take care, and please keep me updated on your Dad's condition - hope he continues to make progress. You should be proud of the way you are caring for him.

Best wishes, Kev