From Partner to Carer.

Hi ChinaB 

Welcome to our carers forum though it sounds as if at some level you have been in that role for many years is seems things have intensified quite quickly. I can relate too where our loved one knows something is wrong but it seems like the doctors are not listening - but that is another story.

I wonder if anyone has pointed your partner at getting a needs assessment and at the same time you might get a carers assessment; there would hightlight any support that might make things easier for you both.

Something I found quite helpful is your emotions when someone has cancer as being able to recognize the feelings and accept them as normal I find helps make them a little bit overwhelming.

<<hugs>>

Steve

Hi China b.

That sounds similar to our situation. My husbands cancer journey was short and the past few mnths he went downhill so quickly, he was also a fit strong man who in the last 2 months needed a hospital bed and a commode. It was dramatic. He passed away, sadly, we knew the cancer, a sarcma was aggressive. Becoming his sole carer was hard, but it was the last thing I could do for him, right until the end when the hospice supported him, so that he could die at home. I remember telling the social worker that the speed of change felt like being hit by an express train...continually, never time to adjust to the new normal. 

We don't have family nearby so they were occasional visitors. 

We expected last year to be his last Christmas and we made it just lots of laughter. We hoped he would make it this year, but it was not to be.

Just keep talking, there are so many here feeling the same or going through similar.

Hi Chinab

i am so sad to read your post. I am having a similar experience with my partner. He went from active, walking our dog together for long treks to all of a sudden being diagnosed with advanced prostate cancer and metastatic spinal cord compression. I became a carer within a matter of days. I am struggling to get any help and support for myself, all my efforts have been on getting the best treatment and care for my partner. 
I have contacted our local hospice and asked for support for us both. My partner/ husband has  an occupational therapist and physiotherapist from the community palliative care team and they have referred my husband for psychological support and more recently have referred me too. There will be about a ten week wait but at least I know support is coming. I have also completed a carer assessment on our local adult and health social services website. It has taken several weeks but I got a call back last week to arrange an assessment interview by phone. This is happening next week. I think I will be able to get a few hours each week where our care agency will be funded by the adult social services to give me a break. It is called Take a Break. We are paying for our care agency to provide personal care for my husband four times a day. The spinal cord compression has left him unable to walk, stand or control his bowel and bladder. Life is more than tough and I struggle everyday l please shout as loud as you can for help. I have no family and my partner’s family can’t deal with the situation. I am learning to ask for help but it too is a constant struggle. Wishing you and your partner all the happiness you can get through this difficult time. 

Thank you so much for your reply. I have added those assessments to my list of 'things to find out about'. It's a long list to begin with, but provides me with something constructive and positive to focus on.

Thank you for sharing your story with me. I wouldn't wish this on anyone, but your familiarity with what I am experiencing has meant me not feeling so completely alone.

Hi Teatowel,

Thank you so much for sharing. I appreciate you taking the time to reply. The similarities in our experiences lets me know I am not alone with these thoughts and feelings. Unfortunately, it may also reveal how common are some of the frustrations with 'the system'.

Not that long, before everything 'went south', we were also very active - holidays usually involved camping, cycling and long walks. The spinal cord compression should have been diagnosed months before it finally became an emergency admission. Now we know that the symptoms my partner was reporting to her oncology team were classic to MSCC. Following the spinal radiotherapy she has been left with some lower limb neuropathy.

She is currently recovering from the removal of a 3.5cm brain tumour. 

I have been fortunate to be able to take a couple of months off work, and have made a list from the kind replies here of support I can be looking for.

I too have no family and my partner's family is more dysfunctional than most. One is very kindly looking after the dog, but that can't go on for much longer. He is a complete handful and will definitely be a tripping hazard. My partner's daughter has just boomeranged back home, replete with her long list of emotional and psychological issues. Unless anger, entitlement, narcissism and selfishness are normal for today's 27 year olds? We have a lovely house into which we have poured years of effort and money that now looks like a squat since her arrival only two days ago. At some point I will be going back to full-time work and I just don't know how I am going to cope. I know that planning and routine are critical. I feel it's hard enough to keep what plates we already have spinning, but more keep getting added. I'm angry and I hate to admit it.

I hear and see you.

I hope you find every ounce of strength you need - and I wish you both my heartfelt wishes for that same happiness wherever it can be found.

Hi, Chinab, it’s really tough, isn’t it! I’m just now reading your post as we’ve been laid up with a virus, which has made caring for my partner even more difficult! I think we’re both on the mend now,… We loved to travel, to dance, to cook together. I’m lucky that R. is very easy-going so doesn’t get frustrated or angry with his situation, or with me when I don’t get things “right”: just as well as I get quite frustrated with myself at times! We live outside the UK but not far from some of my family who are pretty supportive, though I don’t feel I can ask a lot of them. My daughter is brilliant - comes over when she can, is always available for a chat (outside of work hours, that is!) and I know would get here if I asked her to. His family…. they send supportive messages now and then, but I don’t think they really want to know how it is. Sending you a hug and hope you get some support sorted out.

Thank you, Miranda t,

In our relationship, my partner is the accelerator and I'm the brake. She has lots of anger and channels most of it into getting things done, being persistent when the 'system' needs a nudge - and, of course, anger that she got cancer to begin with...

Something you said surprised me with the emotion it brought up: the idea of getting things 'right'. I try so hard to get things right all of the time - and feel terrible when I inevitably fail.

The mix of emotions experienced from day to day, and even minute to minute - the way in which this awful journey can change without a moment's notice - it's exhausting.

Sending hugs and heartfelt wishes to You and Yours.