His way all the way

Hi Ebony12,

I totally resonate with your sentiment about your husband's attitude (and indeed yours!).

I found a new level of respect for my husband, relating to his attitude whilst dealing with his illness. It was amazing.

Like you, I followed my husband's lead and when the time came he went peacefully. We were a bit more organised on matters relating to death, probably due to our professions.  A week before his death, during our weekly meetings with the doctor from the hospice, all he was concerned about was me. He took care of his loved one as soon he knew of his terminal diagnosis.  He arranged holidays/get togethers with family and friends. It was all about quality of life and him being there for his family. He was a pillar of strength. #cherishedmemories

So, I would say we took care of each other until the end....

We were together for 16/17 years but only got married 6 months before he died. We both wished we had done it earlier.

The way we dealt with the diagnosis was very similar to yours in that we made the most. I had in fact, re -diagnosed him with stubborn-git-itis! Even a Doctor, said he was not behaving like a teminally ill person. He always used to says he was so lucky with the life he had, even when he got his diagnosis. I believe that it is because of his attitude we were able to make the most for longer than the doctors had anticipated.

It worked for us and still to this day brings me comfort.

Nevertheless, I am sorry to hear about the loss of your husband. It's early days for you so take care of yourself.

Whilst writing this, I was smiling in part and feeling proud of my husband. So thank you! I also was crying, when I realised how much I miss him just not being here anymore.

With lots of love,

Dutsie Xx

What a lovely post Ebony12

I too am incredibly proud of how my husband handled himself. From his bravery accepting his terminal diagnosis at the age of 47 and leaving me and his 3 children alone. He sorted out his work benefits and will, I even had power of eternity much to his mother's annoyance. But that's what he wanted and as you say his wishes were the only ones of importance. 

When I'm having a bad day I remind myself of his strength and patience and take a deep breath and carry on. 

Hi Dustie and ruby diamond

My husband was doing fine and was booked in for treatment beginning of February, he collapsed at home and held on till he got to hospital where they got him stable.

enough for him to say what he wanted to his nearest and dearest. I believe he must have known he did not have long as he had talked to his brother about him taking the lead for matters after he passed to take the stress away from me. 

We had both talked about our wishes in the past long before his diagnosis. We had been together 8 years, we were supposed to be getting married in Mexico October gone but he couldn’t fly so we got married anyway at home. Never the less, married or not he had put me down as next of kin, so nothing changed by being married, we got married purely for love like you did. 
even if you did not marry I’m sure he would have put you down as next of kin, power of attorney as you knew him best and he could trust you the most to carry out his wishes.

Thats why you have so much comfort in that he was so brave and courageous with you by his side keeping him going and also that you gave him all his wishes.

Thats what keeps me going, I can feel him around me and I can see him giving me a cheeky wink and a smile saying ‘go on girl’

Im pleased I can share and you share on here, it helps me so much knowing I am speaking to people who really know how I feel

take care

Xx

Hi Ebony12,

I am sorry for your loss and I am glad you have found this group where you can talk to others who have also lost their loved one. I am sure it will always give you comfort in the days, weeks, months and years to come to know that you cared for your husband beautifully and that, because he was able to talk about his wishes, he was able to have the death he wanted and that his dear ones knew his wishes all along. It is so good too that you were able to talk about each other's wishes a long time before he got sick; I would wish that all couples would have this conversation not only when the situation has already become serious but long before that.

I lost my Paul in May of 2018 and, unfortunately, we, like so many others, were in a situation where he wasn't really oriented enough or alert enough towards the end to talk about what he wanted and didn't want; however, we knew each other so well that I knew what he'd want and wouldn't want and I have no doubt that, had it been the other way around, he would have known too. After two hospital admissions that lasted each almost two weeks, I was able to take Paul home and look after him at home until, one day before his death, I brought him back to the hospital where we had been looked after for so many years. Paul had advanced prostate cancer that had spread to his liver and, after altogether nine rounds of Chemotherapy, he got Pneumonia and Influenza A and he never recovered from those infections and in the last couple of days of his life developed a Klepsiella infection and Sepsis. The last day or so he drifted in and out of consciousness, when he was awake he was mostly disoriented and I think fearful of what was to come and feeling bad about having to leave me, and I was with him all along until he had taken his last breath. A couple of hours before he passed away, the hospital chaplain came into the room and asked me if he should... I don't even know how to say this correctly... perform the last rights for Paul? Anyway, I said, "No don't, thank you" because I knew how much Paul had disliked religion and particularly the Catholic faith. So, while he wasn't able to articulate his own wishes anymore, I knew what they were and was able to act accordingly.

I think the situation is very difficult when people have never spoken about their wishes and then, out of the blue, the disease is progressing very fast and there is no time to talk about it all and then as the relative one can never be sure whether what is done is what the relative would have wanted. But hopefully in those situations it is a comfort to know that doing our best was what we did.

Love, Mel.

Hi Mel

even when someone has not been able to express their wishes I think the closest people around them at the time know them well enough to do what they would have wanted and like you say their best. 

my husband did not like a fuss that’s very true but when it came to it he wanted his loved ones all around, theres is a time for ‘fuss’ and that was one of those times. He was incredible, he had been resuscitated, stabilises enough to get wheeled in his bed for a ct scan and say up to keep the doors open for the nurses who were going with him!

he asked for a group hug and thanked everyone for coming saying I don’t know what all your plans were for today but thank you all for dropping them to come and be with me. 

The nurses said as they were bringing him round he kept saying my name on repeat and I love you over and over again. He kept taking his oxygen mask off and asking me for a proper kiss. He was defying medical science as the ambulance crew could not believe he was talking as they couldn’t get a pulse, how incredibly strong he was.

They were all strong in their ways, cancer got them in the end but they went the full rounds with it, left us with amazing memories and we will always, always carry them forward with us.

much love

Xx

Your stories made me cry and drove home once again how badly I dealt with my husband's illness. I pestered him so much with all the alternative medicine, which he took willingly enough as he so wanted to live. We were so hopeful after the first set of chemo. But I bothered him to read books on how people who had terminal cancer healed, despite all the odds. I admonished him because I wanted him to try the same things but, of course, he didn't have the strength to do it and probably didn't belive they would work for him. I was so blind and so desperate. Then, at one time, I asked him if he wanted a priest to come home, not to perform the last rites, but just some sort of blessing. To my surprise, he said yes, although he had never believed in God. I called the presbytery twice and each time they said they'd call me back but I never got a call. Forty days after he died, I had a Mass said for him and I told the priest that I'd been expecting his call. He said he did try to phone on several occasions but apparently there was something wrong with my phone. So, I'm left with regrets and questions. Why did Gilles agree to see a priest? Was there something he wanted to say or ask or did he feel the need to make "peace" with a God he said he didn't believe in. Towards the end, he was too confused and probably didn't remember he wanted to see a priest. I couldn't leave him alone for any time at all and I didn't have anyone to help so I couldn't go across to the presbytery, which was very near, in fact. As for me, my faith is gone. That doesn't matter. The only good thing is that about two weeks before he died, he told me what he wanted,  down to the details of his grave, so I was glad to fulfil his last wishes.

I miss him so much. 

Hi Limbo,

I think perhaps most of us asked our loved ones to do things towards the end because we were desperate to help them and didn't see that they were no longer in a position to do them or did no longer want to do them because they knew that the end was very near.

I mean, I was forever asking Paul to drink his Fortisip, to finish the little portions of food I was giving him, to drink the water and herbal tea I gave him, to put Lavender essential oil on the bottoms of his feet before bedtime so he would be able to have a more relaxed sleep...

And, you know, for some time this is really good, even the nagging, because sometimes the patients need the encouragement from someone in order to go on or do things they don't like doing but that are necessary. So, for example, in the early days Paul never wanted to drink his Fortisip, he hated them, and if I hadn't kept at him to drink them, he wouldn't have done it. How many times did I not say anything until lunchtime and then when I asked, "Did you have your drink?" he would say, "No I don't want to drink it today. And I thought I was getting away with it." So I kept giving them to him, forever asking myself why he wouldn't see that they were good for him.

And when Paul was still strong, he went along with most of it. But, as he became weaker and knew that his death was near, he didn't want to do them anymore and couldn't do them anymore. While I was still fighting for his life, he was already dying. Looking back now and from a palliative care perspective, I can see that it would have been much better for him in the last three days of his life if I would have paid more attention to whether he was comfortable than whether he had a glass of water or his Fortisip.

As part of my End Of Life Doula Training I have to learn a lot about the signs of death and yesterday I read a long document about the signs of death put together by some Buddhist hospice in the UK and I could identify so many things from having been with Paul. The document also gave suggestions for care. And I realised that, in some cases, I didn't react as best as I would have wanted to. But then I am saying to myself: It was my very first time experiencing death so close, and it was the person who was the most important person in my life, so wasn't it understandable that I wasn't always able to do things by the book? Yes, as a Doula and for somebody I don't know that well I have no doubt I could see the time to let go of all efforts to make them drink or eat or whatever, but with my own loved one?

Limbo, let us try and stop beating ourselves up over it. Because we were alone with the situation and we were trying our best to support and help our loved ones. And they knew and know that.

Love, Mel.

Hi Limbo

please do not burden yourself with any guilt or torment. I believe everything happens or does not happen for a reason and anything that did not happen was not meant to be.

i guess, in our grief we look for things that we could of done better, but never forget all the things you did and the fact you were with your loved one constantly and seen it all. 

please do not put too much weight about the priest not attending because your husband said yes, maybe your husband had changed his mind again?

For is, it wasn’t always plain sailing and we all  did things out of desperation but most importantly out of love and care for our loved ones. They will know this so take comfort please. 

it helps me to pen things down and our memories, please tap into your memories as there will be lots, and like other have said we take them forward with us. Do not distress yourself about anything as you did your best and more. My husband did it his way, it was hard for me at times and I too encouraged him to do things like eat, get checked over by medics when he would of rather of not but he thanked me for it as he had a bad infection and needed to be in hospital, he didn’t think he was that poorly as he was swanning about the house saying he just had a bad chest.

i challenged medics from time to time also to his annoyance, this brought us closer after the fact, what I am trying to say is whatever you did you did it out of love so please, please please do not question yourself.

much love

Thank you so much for your replies. Everything came back last night or, rather, resurfaced last night. You're both right: everything I did was out of love but also fear. Today, of course, I would have a different approach to somebody dying. Both my parents are still alive and aging, of course, but I know when the time  comes, I will be able to let go much more easily.

There was a time, in the first months, when I wrote down some of the good memories. For some reason, now, I'm finding it hard to go there and some of the pain from the beginning is back. I do have some good moments. I went to the beach today and was just basking in the soothing, mellow water. I was thinking how pleasant it was to be carried by the water rather than having to carry anything.

Ebony, I've been prattling on but I am also very sorry for your loss and I hope you will continue to be as brave and philosophical as you seem to be right now. We'll have our ups and downs but, thank goodness, we can vent here and get things put in perspective.

Love to all.