A year on and I am feeling worse

Hi Leigh!

I think I get what you are saying. I am 14 months in from losing my husband to bowel cancer. He passed in the hospital though with me at his side last June (2023) I like to think his passing was peaceful. I wasn't even aware that he had gone. He was lapsing in and out of consciousness and doing that horrible breathing they do at the end and then the breathing just stopped so thought he had just gone to sleep and when I tried to wake him he wouldn't so he had gone to sleep but for good. He wanted to be at home to pass but in the end it just wasn't possible because he took sepsis four times and on the fourth occasion his blood and oxygen levels dropped to more or less zero and he needed to be admitted to hospital again but stretchered out the house into the ambulance and he just went into hospital and never came back out again. I can't speak about what support you should have had at home but if you are looking for support for yourself you can come on here and contact MacMillan through their phone support line it will be listed on the website and there is also a chat facility you can use if you don't want to talk on the phone. They can organise counselling sessions for you over the phone I think its 6 free sessions you get through Marie Curie. I got those in January this year when I was struggling a bit and they helped you decide when you want them to phone you it can be weekly, fornightly or monthly you decide. Just having someone phone and check in on you just to chat really helps. There is also Cruse bereavement I have not used them personally but if you ask here they will be able to put you in contact with other sources I'm sure and just keep coming on to the forum. We've all been there and will get what you are going through it's a good place to come if you want to scream, shout or just have a rant about something. My best wishes to you going forward. Take Care.

Vicky. 

I am very sorry to read your post. I'm in a similar position, and I feel your pain: my wife died from cancer ten months ago. It's just me left behind - we don't have kids - and I am struggling with it all.

Leighcreek said:

Now I am questioning why we were left to do this alone, we were under a local hospice, not macmillan, but no help or guidance was given. Every time I called for help they just said call the district nurses.

I am very upset to read that: you deserved better. I hope the district nurses did provide you with help when you needed it.

Leighcreek said:

I suppose my post has 2 points, is it normal to be left alone to support your loved one as they die. Where can I now get support as every day I feel sadder and guilty that I failed him.

On the first question, everybody deserves full support, and you shouldn't have been left on your own with no help. That said, my experience and observation is that support services run much less well at night time, and over weekends, than they do during normal business hours. I don't think that that should be the case - but, unfortunately, it definitely is.

On the second question: firstly, please never  think that you failed your husband! You will have done everything possible to help him - and he will have known that.

Regarding getting support for yourself, PattyK has already made a couple of good suggestions. Depending on where you live, you might also be able to contact a local 'Maggie's Centre' - see https://www.maggies.org/ . And, in addition, the hospice who were managing your husband's case might be able to provide some help. I hope that, among all those suggestions, you get somewhere.

For myself, I have had some bereavement counselling provided by the hospice who managed my wife's case in her final week (my wife was at home, but the hospice medical team visited daily) and I did find that helpful. Because I am struggling with everything, I have also recently visited a local Maggie's Centre, and I am about to join a bereavement group there, which I hope will help me.

None of us want to be in this awful position. But we have a duty to carry on, in loving memory of those we have lost. I send you love, hope, and my very best wishes.

Dear Vicky

Thank you so much for taking the time to share your experience and knowledge.

 I have booked some counselling as you suggested and am hopeful it will help unravel some of my feelings.

 did feel I should be ‘getting over it’ by now and it is comforting to know that others some way into the journey also find thing a struggle.

Thank you 

Leigh

Hi Leigh,

Glad to hear you are giving the counselling a go. There is no time limit for your grief. People grieve differently some get over it more quickly than others for some it can take years some just learn to live with it and some just don't get over losing someone.  As I think I may have said already I am now almost 15 months in from losing my husband and it is really hitting home with me now I have little outbursts of crying now and again something I wanted to happen at the beginning but wouldn't and now when it happens it is like a release and a relief and I feel a lot better once it has happened just to be able to get all that stored grief out. I still have what I call `stuck and hide away` weeks where I just want to be on my own and not see anyone. It's happening now but I know it will eventually pass and I just put it down to being part and parcel of the grief process. Things are getting slightly better for me. I'm getting up in the mornings so that's a start and just see where the day takes me from there. I wish you well with the counselling and on moving forward. Take Care. 

Vicky 

I'm on here because it's one year since my husband died and I'm feeling awful this week. I came to pick up my profile data, where I recorded the timeline of what happened of 2.5 years of treatment. I'm doing it because I decided yesterday that I have never told "my" story of that cancer journey to anyone. I need to write it down, to organise my thoughts, then I need to say it out loud (probably to a counsellor).

The hospice care at home team that helped us were fantastic ... when they came to help. The district nurses here much less so. And the GP merely sent us for our final fruitless 25hr A&E experience when we called at "the worst time", which seemed to be around 5-6pm. I too felt very much alone to hold it all together for the whole family. I realise now that I never expressed my fears or criticised the care we were getting out loud for that whole time, or in the year after his death. I was too busy keeping everything going and my husband was under orders from the consultant to "stay positive". Trapped at home, I was could not to say anything to anyone on the phone, as I was too concerned  I'd be overheard by my sons and/or husband, so although I'd have loved the opportunity to have counselling and support for me through those hard last few months I couldn't access it. I relied on this typed forum!

The hospice have extended the offer of counselling to anyone in the family, at the time of his death, a couple of months later, and again now, with a card sent one year on. None of us has yet taken it up. One of my sons has had counselling at his uni.

Given the shortage of medical staff time (and given that hospices are entirely charities), although I am saddened by it, I am not at all surprised that everyone was happy to leave it at face value that we were managing wonderfully well and do nothing extra unless we explicitly asked for it, and things had to get pretty bad to go through the palaver of chasing support for hours on end. There was a presumption from medics that you knew how death would happen - but my husband was dying young - I've not yet had a parent die, so I was clueless. It became apparent to me near the end that there was a real danger that my husband might die needing help or meds urgently while I was having a shower, or putting the washing on. When they decided he urgently needed to be moved into a hospital bed, the bed arrived, then we waited 4 more days before people finally came to move him downstairs into that bed. For his final half-day he was in the hospice.

I wasn't by his side when he died. After seeing him settled in and dosed up with lots and lots of meds, but still needing more morphine, I'd brought my sons home for tea and fallen asleep. We were woken by a call from the hospice nurse at midnight, but the temporary hospice (as there is a rebuild going on) is 45mins drive from home and he died before we got there. It was always a balance - we didn't want the boys enduring anything too scary, so he always intended to go to the hospice when it came close to the end. I'm no medic, and the amount of drugs he needed in the last 24hrs, we would never have gotten the district nurses to come back that many times.

So sadly it does seem normal to be left alone to look after your loved one as they die, unless you have the energy to shout and scream loudly for help, which few of us would manage. But it sounds like you did everything you could - no-one could ask more of you.

For any counselling, I'd try the hospice under whose care he died - that's where I'm going to try.

I’ve been trying to wean myself off of this forum since my husband died in June, despite the enormous support I found (and continue to find) here, as the relentless pain of others going through this Hell makes me cry. But I’m still here, and likely to continue, and your post brings it all back. I was offered, and took counseling via the Palliative Care team and it’s been the best thing I could’ve done since he died. 
Sending you lots of hugs. 
xxx

Dear Mother of Boys

I have been offered counselling by the hospice but I don’t feel comfortable accepting this when all my anger is with the hospice for ‘abandoning’ us.

I am very fortunate in that my children are adults with husbands and wives to offer another layer of support.

 I can’t imagine how incredibly difficult it must be to also be supporting and protecting younger children, my heart goes out to you.

The details below show how incredible children can be . I know this will not help anyone but I just want to share the appreciation I have for my son.

14 months before he died my husband had a stroke, 22 hours in the back of an ambulance with no treatment ensured that he was unable to be left alone after this point. It looked like the only options were for him to go into a home, unthinkable, or me to give up work which would have left us in a very difficult financial situation.

My incredible son and his then fiancée came up with a solution. My son would leave his teaching job and come 7 hours from home to live with his father.

This is what he did, I remained in my role at a boarding school, living away during term time. In the holidays I would take over and my son would spend time with his partner. They were adamant that they could manage on just her wage and they did this for 14 months until the end.

I am in absolute awe that my son and his now wife did this and I know I have gone completely off track but I just wanted to share how amazing children can be and how utterly grateful I am to them.

I am now 15 months on from losing my darling husband, and i feel worse than i did in the first year. My pain is just unbearable at times, and i am not coping at all well. I have no interest in doing anything, the only thing i do is meet up with friends. I don't want to eat, have no interest in house work, or even doing anything around the house. My hospice were wonderful with my husband coming out at all times of the day or night. Our GP was rubbish only saw a doctor from there twice in a year, and then 2 days after my husband died they called me up to ask me how i thought they had done. Having lost a lot of my family when i was much younger i thought i would know how it would feel but losing the person i was with for 43 years is way worse.