Ten years on
- Thread starter Lawson58
- Start date
Wow such a difficult situation for you both, on top of everything else. Thinking of you and sending love ❤️
A very difficult situation
My gardener had a leaking valve which had to be replaced with open heart surgery. He was fit and well apart from this, but he told me the surgery itself took several hours and afterwards he needed months of rehab and physio. I spoke to him on the phone 3 months after his op and he told me that the doctors were very pleased with how the op went and he was making good recovery. He said that he could now carry the equivalent of 2 pints of water and he could now walk 100 yards. All in all he was off work for nearly a year, although I do realise that gardening is a very physical job.
Its not just the surgery itself which is a concern - its also the after care. Would your husband be able to co-operate with the rehab and physio required?
My gardener had a leaking valve which had to be replaced with open heart surgery. He was fit and well apart from this, but he told me the surgery itself took several hours and afterwards he needed months of rehab and physio. I spoke to him on the phone 3 months after his op and he told me that the doctors were very pleased with how the op went and he was making good recovery. He said that he could now carry the equivalent of 2 pints of water and he could now walk 100 yards. All in all he was off work for nearly a year, although I do realise that gardening is a very physical job.
Its not just the surgery itself which is a concern - its also the after care. Would your husband be able to co-operate with the rehab and physio required?
It is a waiting game. The end is longed for and yet it is not..if you know what I mean. i am blown away with the years care givers put in to look after their other halves (and/or parents).I have done 6, what? another 6 years? more? less? who knows. I want to be able to start doing things again. Travels. Visit my kids, or family abroad. Yet I do not wish him to die. I will miss him so, and live with guilt for wanting to be 'free'. So muddled.
I fully agree @leny connery
No way of knowing how long. The 7 yrs done seem like forever already.
Muddle on...
OH had a valve repair done at Papworth Hospital in 2004 and it was 6 and a half hours surgery, followed by a heart attack in ICU, then a further 2 and a half hours to investigate some blood loss. He coped pretty well afterwards but then he was also twenty years younger.
The mitral valve replacement will take some stress off the heart and reduce the fluid retention but won’t alter the other issues such as the atrial fibrillation and all the other things he has wrong with him. I know how fragile he was after his cardiac arrest and of course there is the possibility of complications.
It is a real conflict, isn’t it? You have your own needs with no possibility of having them met and it’s incredibly difficult to deal with all those things that essentially you that you have to bury and deny yourself. I went through a long period of resentment, anger and depression and as you said lots of mixed feelings.
I'd say you need to have a private conversation with the consultant as to what is really in your OH's best interests. The risk of the surgery itself killing him is not negligible, regardless of the dementia. To what extent is your OH going to be able to understand/co-operate with the rehab/recovery process after surgery? It sounds to me like there are some significant practical issues to be considered.
If this were my PWD, given where he is now (utterly incapable of remembering from one minute to the next what he's been told, let alone make an informed choice in this situation) I'd seriously question the ethics of putting him through major risky surgery - and he's quite a bit younger than your OH.
Actually, I am quite calm about the whole thing. OH has had such a long history of heart disease that I am rather surprised that he has lasted this long. I have told my husband that I will not influence his decision in any way but he is now worrying quite a lot about it.
I checked out how much it would cost our health system for him to have this surgery, without complications and it is about $160,000 not including after care. I know they won’t make their decision on the cost alone but if you marry up the end benefit to him as well as the community, consider the risks involved and the size of the investment, then I have to wonder if it is likely to happen.
Happily it is out of my hands.
When OH was still in a coma after his cardiac arrest, the director of ICU came and had a chat with me and I have never actually forgotten it. He was very kind but honest and I understand that our hospital is not as hellbent on keeping people alive simply because they can.
His name is Neil Orford and you should Google him, worth a look.
Thanks, he sounds like a very interesting man - and not perhaps one of those "call me God" surgeons - though I'm not sure if they still exist. Makes me think of James Robertson Justice if anyone else remembers him!
I'd be very happy not to be included in the final decision. Has anyone considered the detrimental effect general anaesthetic can have on demented brains I wonder?
Thank goodness it's not your decision. I really can't see your OH coping with the surgery, let alone the long process of recovery. It would seem to me that the cost, given his multiple health issues, just does not add up. Surely it can't be a life at any cost . It is a dilemma, but I am so aware that my life is ticking away, there is so much I want to do but I am a prisoner to my husband's dementia, I am sure you feel the same @Lawson58 .
OH actually doesn’t function like people with Alzheimer’s. His short term memory is only failing him lately and he still plays bridge several times a week. He does understand a lot of what is told to him
about the issues. Mind you he can’t
OH is currently asking me questions about what happened when he had his first valve repair and he is flip flopping about whether to have it or not. I keep telling him that he is getting ahead of himself but that doesn’t help much I know.
I know how you feel about life ticking away and I have been down that path, robbed of my own wants and needs and just as much a victim of his diseases as he was. But I decided to take my life back (bearing in mind that he still manages his own hygiene etc) so I fulfil my caring obligations but do what I want as often as I can. I live my life in two halves, I get out everyday and find ways to meet people and simply ‘be normal’.
It took years of anger, resentment, and lots of horrible thoughts but at the moment, my mental health is the best it’s been for a long, long time. I am aware that I don’t have to clean up after accidents, that he doesn’t follow me everywhere, that I don’t have to deal with aggression etc so in some ways, it has been easier for me.
And I believe that we all have different situations and personal qualities that for some they are stuck. I was always a rebel and in many ways that made things worse because I was constantly rebelling against the injustice of it all which was very unhealthy. Then I decided that his diseases were just that, his and not mine and that’s when I started taking my life back. Perhaps, I am now able to ‘look after myself’.
I hope you can find a path through whatever lies ahead that can soften your footsteps and feel some joy in living again.
I am so glad you are in a good place now, it really is a nightmare journey. I have felt very resentful - dealing with verbal and physical aggression and financial Armageddon. My OH has deteriorated hugely over the last few months. His mental functioning has gone, he cannot remember to wash, eat or drink. He cannot entertain himself, some days he is awake all day and part of the night, some days he sleeps most of the day and night. The other night I had to get him back into bed in the middle of the night, turn the lights off, and in the monrning the back door was unlocked and open. This has happened several times and I can no longer meet my OH needs. He has gone into respite and I have told the care home I can no longer look after him, I cannot do 24 hour a day care, day and night. The care home have been very understanding, whether SS and the local authority will be is another matter. I am not going back to living like this, a few weeks ago I felt like I was going to end up in hospital with the strain - it is only now he is not at home that I realise the stress I have been under.
I hope you continue to find a way to live your life happily - with your lovely pups xxx
@Lawson58 - I wonder if the medical team have gone through the "frailty test" for your husband. This was applied to my brother after he had surgery for cancer and it was decided he was too frail for chemo as it might kill him. They take into account age, mobility, mental health, other conditions etc. and there is an index of who they think would be too frail for a procedure.
I expect they are taking all these things into consideration - risks and benefits - and weighing up whether surgery is worth it.
I expect they are taking all these things into consideration - risks and benefits - and weighing up whether surgery is worth it.
They haven’t reached the stage of testing for frailty factor at the moment as he hasn’t actually been seen at the hospital. Our system is different to the NHS so the consultant he saw was in rooms and very efficient.
We submitted the admission forms to the hospital and yesterday they called to say that the company that manufactures and manages OH’s defibrillator thinks his defibrillator should last another 12-15 months. So he has to go to the hospital to have another defibrillator check before they decide if they need to put in a new one. That’s good news anyway. But I think we are still a fair way off from any decision about the open heart surgery.
I would never tell him this but I think considering his 20 year of heart problems, that he is 84 years old and that he could easily drop dead weeks or months following open heart surgery and the cost to the community, I would rather it was not offered to him. Happily, not my decision.
And yes, your situation is very different to mine and I hope that you can get your husband settled into care. Please, please use some of your respite time to relax and do some things you enjoy. Be kind to yourself most importantly and remember, respite is for you and your welfare and not for your husband.
Personally, I find that a nice easy stroll in a place that you love is a very healing thing. Just remind yourself to notice the birds, the shape of a leaf, or a beetle on a blade of grass. Sit on an old log and let the world seep in or walk on a beach and let your anger go out with the tide. These are all symbols of course of your personal freedom but you need to grab it while you can.
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