Feeling alone despite the help

  • 12 replies
  • 17 subscribers
  • 972 views

My partner was diagnosed with oesophageal cancer  9 weeks ago and after 2 hospital inpatient stays he's now home again but is not very mobile and struggles to get out of bed without assistance having lost 4 stone in weight. There's no treatment being offered due to him being so weak. The hospital did their job but sent us home more confused than when my husband was admitted with all the medication and no idea of the way forward. He went in with confusion and came out with this horrific diagnosis. He has all the support he needs from Macmillan, GPs, carers, etc, for which I am extremely grateful and, of course, me but somehow things are getting on top of me.

I know there's help available for me too but I'm feeling trapped. The carers turn up when they like, very irregular times every day, early starts, late starts, visits too close together, etc etc. I'm sitting here now still waiting for an appearance.

After having had no transport for 6 days I've felt like I can't breath. It's not really related to my husband as he is my world and I'll always be there for him it's just the fact that I've not even been able to go out to the shops for essentials such as to buy him milk; this is almost the only thing he's been able to consume apart from his ensures. We have a keysafe but no key to put in there yet. My husband has a lifeline but I'm not sure he will press it. We have a very friendly dog that gets very excited when he sees people but most of the carers don't like dogs.

Writing this down makes everything seem so very unimportant but I'm feeling a bit overwhelmed with it all and I'm not sure where to turn. We have a few friends and my elderly parents and they've been there for us with lifts to the hospital and a shoulder to cry on in the beginning but now I feel that we are alone. My mum, bless her, will get me bits and bobs when she goes shopping but I don't like to ask for more as she worries so much about me to the point it makes her ill. I can't even tell her how I'm really feeling and how ill my husband is. My husband's mum is 91 and isn't local to us. Eventually I will have to return to work but I can't let him down and I can't abandon my dog either.

It's been a bit of a merry-go-round but I hoping things will settle down. I'm just so grateful that I have access to this forum or I know I'd just drown in it all. 

  • Hi JeanieH,Hugs to you,it’s not unimportant at all it’s overwhelming.Before I got cancer I cared for my late mum for many years.We had carers in the last couple of years of her life but they were erratic and let us down on several occasions.I completely understand the trapped feeling when you can’t even pop out for a short while.I do hope things improve for you and that you are able to get out.I used to go and sit quietly at the bottom of the garden for a few minutes just to have a short break.Love and best wishes Jane x

  • Thank you for your kindness I really appreciate it tremendously especially as you are going so much yourself. The diagnosis was a huge shock to us both as my husband went into hospital with low blood sugars and confusion and came out with untreatable cancer. One day at a time they say xx

  • I feel for you both and wish I could help.Mum collapsed with a brain haemorrhage.It is a shock when your lives are changed so suddenly.I had help from social services until mum went into a nursing home.If you can find a few minutes each day just for you it will help.Taking one day at a time is best.Love and hugs Jane x

  • Sorry to hear what you are going through.   A few  points

    Have you requested a carers assessment via social services.

    You may want to join the animals are family forum.  

    My partner was offered counselling via macmillan when I was diagnosed which she declined but we were told that the offer was always there.   

    Make the care company aware that the different calls times are not practical they may be able to sort something out.   

    Best wishes 

    Michael 

  • Thank you. I've not heard of the carer's assessment before. I've been offered counselling too which I declined initially but I'm getting round to thinking it's the only option as I'm drowning quickly. I've told the care company about the erratic times and I thought yesterday that they'd upped their game but today it's back to how it was so I think it's fallen on deaf ears. I'm ripping my hair our here as its just 1 thing after another, 1 obstacle after the other. Even the GP can't be bothered to tell me where she's sent our prescriptions! So many different community nurses, so many carers I'm getting myself confused so I can only imagine how my husband feels. 

    Onwards and upwards Fingers crossed

    Jean

  • Hi Jean,I had never heard of a carer’s assessment before I had one.They come out and ask you a few questions to see what help they can offer and to see how you are coping.I can’t remember much about mine as it was several years ago.I kept a chart for all the appts and pills at one time.I do know how it feels when there are constant obstacles.I’m experiencing that at the moment.Love Jane x

  • Thank you Jane. I hope you too can overcome the obstacles I know that it is very frustrating and, at times, annoying. 

  • Thank you.I will feel better once the house is sold and I am settled in a new place.It has been an extremely stressful 20 months being mum’s executor.

  • Hi  

    It’s no surprise you are feeling overwhelmed and it’s understandable that you are finding things very difficult-please don’t worry about expressing yourself within the safety of the community. There is a dedicated group for carers and if you click on this link it will take you there.

    Carers Only

    Here you can connect with others dealing with similar issues to yourself who will completely understand and it may help you to know that you are not alone. A carer’s assessment as suggested would be a good step for you to take, and counselling for yourself is also a good idea to consider. I’m not a carer, but have seen how much being an carer affected my partner going through cancer with me, so I have some understanding of what a difficult position you are in.

    Keep chatting to others here who can help support you, and I’m sending a virtual hug. You are doing a very difficult job, and it can help to talk things through. Please take good care of yourself too-carers are sometimes forgotten and you need to be heard.

    Sarah xx


    Community Champion Badge

    Cervical Cancer Forum

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Hi Sarah thank you so much for your kind words of support especially after the most difficult times that you have had to go through and continue to battle yourself. I sincerely hope that you continue your road to recovery. I'm also sending you a virtual hug to you. Now, with your help in pointing me in the right direction, I am going to join the forum that you suggested. Without the support of marvellous people like yourself I wouldn't have been able to begin to discuss my feelings so an enormous thank you Two heartsxx