Help with Nursing Home/Caring at home

Elvisia

I just wanted to thank everyone for replying to my message and helping me so much during a really difficult time. We had a meeting with my Dad's consultant and a nurse, and they said they would have to do a blood test last Monday to see whether he had stabilised enough for him to potentially move, but they felt that in his current position there was no way he'd be well enough and kept telling him over and over again to not worry about it. However he got himself in an enormous state about the whole thing. When we went in on Monday to be there for the blood test he had taken a massive turn for the worse and they couldn't even contemplate doing it. He died on Wednesday morning. The guilt I feel is just incredible, I kept trying to reassure him that we would put up a fight and stop him from being moved from the hospice but he was insistent that we were all plotting against him and he'd formulated a plan on how he could come home. I asked the consultant about whether this had caused his death and she said a lot of patients do go downhill very quickly if they think they're going to be moved into a nursing home, but because of the nature of his disease it was also likely it was just his time for everything to go downhill.

I also feel terribly guilty because I wasn't there at the end. I was in such a state the evening before he died that his nurse told me to go home and she'd ring, but he slipped away very quickly. I think the stress of the whole situation and just the worry that he might be sent home had really built up and now it's just being released in the form of guilt.

Thank you very much for everyone who posted, it was a huge support.

Blue_Bird

My thoughts are with you, Elvisia, it's tough enough when someone passes away in any circumstances, but you need to realise that you did the best that you could and put your dad at the heart of the decisions that you made. I've seen many patients (or their relatives) be unrealistic about things, and it often takes someone else to look at the situation objectively.

Everything will be very raw at the moment, so be kind to yourself and look after yourself. You have no reason to feel guilty. Surround yourself with people and things that give you comfort, and don't discount bereavement support if you may benefit from it.

Best wishes

Blue

Robisere

Elvisia, your story took me back to my own parents, who died within 7 months of each other many years ago.

My mum had angina for many years and had to be resuscitated on two occasions, but lived with it for almost 30 years. My dad, an ex-miner who worked in the industry when it was all 'pick and shovel' work, eventually contracted lung cancer in his 80's and suffered, it broke me up to see him fighting for every breath. At the time, my first relationship had failed and I lived with them, fortunately my work was just 200 yards away from home and I was able to look after them. I did everything: cook, wash, shop, bathe dad, pay bills. I was so worn out that my boss made a wonderful gesture by telling me to go home for dad's last few weeks, and he paid me a basic wage until I was able to return to work. My boss refused all offers of any refund or extra work for that, you can bet that I worked my socks off for the man after that.

When dad died I was with him as he breathed his last, he wanted burial and I actioned that. Within a few weeks mum was suffering all kinds of heart problems. I had a much older brother who had taken no part in this, but his daughters rallied round and took turns to help me with mum. Mum suffered 3 heart attacks in one day and the 3rd one killed her in the ambulance, as she had wanted cremation, that is what I organised, with a small service at graveside as I put her ashes in with dad.

You would think that I would not feel guilt after all that, but I did, for years afterwards. Eventually I came to believe that it is natural to think "Could I have done something more? Something different?" If you really love the person who has passed, that is a natural thought. So comfort yourself with that: because you loved your dad so much, your mistaken guilt is natural. It does get easier with time, just remember that your memories of your dad from all of your life with him, are what really matter.

kingfisherblue

So sorry to hear of your loss. I know this won't help, but you did your very best and you have nothing to feel guilty for.

Take care,

KFB x

bluebell13

Elvisia wrote: »

I just wanted to thank everyone for replying to my message and helping me so much during a really difficult time. We had a meeting with my Dad's consultant and a nurse, and they said they would have to do a blood test last Monday to see whether he had stabilised enough for him to potentially move, but they felt that in his current position there was no way he'd be well enough and kept telling him over and over again to not worry about it. However he got himself in an enormous state about the whole thing. When we went in on Monday to be there for the blood test he had taken a massive turn for the worse and they couldn't even contemplate doing it. He died on Wednesday morning. The guilt I feel is just incredible, I kept trying to reassure him that we would put up a fight and stop him from being moved from the hospice but he was insistent that we were all plotting against him and he'd formulated a plan on how he could come home. I asked the consultant about whether this had caused his death and she said a lot of patients do go downhill very quickly if they think they're going to be moved into a nursing home, but because of the nature of his disease it was also likely it was just his time for everything to go downhill.

I also feel terribly guilty because I wasn't there at the end. I was in such a state the evening before he died that his nurse told me to go home and she'd ring, but he slipped away very quickly. I think the stress of the whole situation and just the worry that he might be sent home had really built up and now it's just being released in the form of guilt.

Thank you very much for everyone who posted, it was a huge support.

I posted earlier in the thread that I work in a palliative care unit, and I just wanted to say please, please do not feel guilty that you were not there at the end. I have seen lots of families sit by someone's bedside 24/7, pop out for a much needed cup of tea and the patient slips away whilst they are gone. It's heart breaking, but to put another spin on it, you were there all the way through his illness, you fought for what was best for him, and those are the things that really matter. Letting your dad know you loved and cared for him is far more valuable than witnessing his last few breaths, important as that may be.

Another thing I wanted to say is that it is also common for some patients to become agitated and distressed in the last 24/48 hours, almost as if they are having one last fight, so it's possible that that was happening with your dad too. Some patients will keep trying to get out of bed to go home. It's very distressing to witness becausee no matter how much reassurance you give, they keep doing it.

Feeling guilty is a part of grieving but don't let it become the over-riding one, because from everything you have posted here you have done a marvellous job of trying to get the best for him.