My 57 yr old husband has had 6 heart attacks on the last 4 years and had 2 cardiac arrests in Feb this year and now has an icd in situ since Feb 14th...Valentines day. He has been told he has heart block as he had been blacking out for years and they put in a loop recorder then found it was his heart stopping.
He's now been told he is terminal and is having palliative care.
My husband is handling it very well. He's accepted what's happening and as far as I know he's coping well. He laughs and jokes his way round things as he's always done and I admire him for that. He has a dnr in place. He's planned his funeral even booking the venue for his wake. All I do will be ring them when I have a date.
I however am struggling a lot. I get good days and bad days but am overwhelmed with a feeling of deep sadness that I just can't shake off. I feel like there's no more room in my head for anything else. I feel my friends can't help as they don't understand plus I don't want to burden them with my worries when they have enough of thier own.
I was wondering if there was anyone who is going though a similar situation as we are, someone who I could share things with so I don't feel so alone with how I am feeling. I know I'm not the one who's poorly but I am really crying out for someone who understands.
Thank you for reading x
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JanWales
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Hi Jan, I just wanted to say my heart goes out to you & your husband, so very hard for you both. You are both so brave, why would you not have an overwhelming feeling of sadness, I think that's a very normal reaction. Does your husband have a heart nurse you can talk to & maybe arrange some counselling for you. My husband has HF and whilst he's doing very well we both know it's a progressive condition, he also has an ICD fitted. Only today, on another group, I've heard of someone who has had to take the decision to turn off her husbands ICD and he's now receiving palliative care. I hope you can find the help here that you're looking for, I can suggest some closed Facebook groups that may also be of help to you, just let me know. Sending much love to you & your husband xxx
Anyone reading your post cannot help but feel so sad by your words. Time is a precious thing and I am not going to say make the most of the time you have together, instead some practical suggestions. Your husband sounds like a practical man. Making his own funeral arrangements and the like is a very natural thing as it gives him purpose. Now here is a suggestion. Together make a short list of things you would like to do (a sort of bucket list). Try to be practical so a short break away if he can manage it. Give him the thing to plan so he is distracted. Perhaps a place you both have visited in the past and enjoyed or even a pampering weekend in a posh hotel locally. Just make memories so that you both get away from the situation even if its only for a few days.
When I faced a similar situation – my partner of 36 years had two cardiac arrests and survived and had an S-ICD implanted we visited York and did the five-star treatment, a visit to remember. I am fortunate he survived, and we have lots more time now to plan ahead. For you its living for today so make the most of every moment you have.
You may find booking a long appointment for yourself at your GP may help you. Also, the BHF nurses are there to support you so why not give them a call and chat to them.
Of course, this forum is always there and I will look out for news from you.
This is an overwhelming situation and the feelings you are experiencing are as Lezzers says, a normal if emotionally draining response. Macmillan nurses in many areas support people i palliative care even if not from cancer. As already suggested I would talk to your GP who may know of local support or ring Macmillan
tel:08088080000
If friends ask if there is anything they can do take them up on the offer. People feel so much better if they can do something practical so make a list. You will be helping them!
There may also be carers groups that can help with practical things as well as supporting you.
My husband had a heart attack then heart block so has a pacemaker, he now has severe mitral valve regurgitation which is inoperable as there's to much damage plus he's on dialysis for kidney failure and has other health problems so none of the surgeons want to touch him.
We are ticking along but don't know what's to come, very difficult so I know just how you feel, all we can do is keep going but it's hard.
I'm in a similar situation but my husband is almost 80 so it must be harder for you. He also is non complaining and trying to be cheerful. I feel sad deep inside. Does that make sense to you? At night my dreams are all sad. It started to worry me but I was referred to an organization called Talkwork. The are psychologist s and help people who are dealing with chronic illness and feeling the effects. They don't counsel, they listen and offer constructive advice. It was so good to talk it out! I have also found that a hospice nurse good. I didn't realize they are not just there for the patient. Your g.p. should know of anyone who might help. But you need it now. Friends and family have their place but they are affected too so I hope you find that someone who can listen.x
I cannot begin to imagine what you are going through JanWales. Your husband is so young as well. I know from talking to a friend who does some hospice work that sometimes the partners get missed out when it comes to support. Friends are not always in a position to help as they may be having to cope with their own emotions. I feel sure there are organisations set up to support partners in your situation, either through bringing people together in similar situations or counselling type support for you. I would have a word with your GP.
I am so very sorry to hear of this, I would echo comments made by others with Marie Curie and MacMillan. Would also recommend your own GP surgery, they may have access to avenues.
I get the bit about friends but they may be a lot more open to you given your circumstances, any close family you can talk to?
My heart aches for you both. This is a time of great difficulty.
I'm glad your husband was able to plan for the next part of his journey. It helps him and it gives him peace of mind that you won't have to do this.
My sister was terminally ill with cancer. I joined a care givers support group. We were all given a forum to state our fears and concerns and anger about where life was taking us. We also did a few family gatherings that were parties. One was centered around a football game, her favorite sport, we had so much fun. Lots of pictures. These were days we could all remember and days she really forgot she was ill as she was so focused on " her" party.
Reach out to whoever you can for support for yourself.
So sorry to read this Jan. Try and take comfort that your husband is so positive about his outcome and can enjoy the time he has left. I presume the Doctors have ruled out any hope of a heart transplant, or perhaps it is not applicable in this situation.
I agree with talking to Macmillan or BHF nurses as you are going to find it very hard to accept what is happening to you.
I feel for you m, it seems so unfair that there is no hope for someone in their 50’s.
Do you have a strong family and friend supper network - if you do you will need them. If not then counselling may be the answer. Thinking of you - Fiona.
Hello It's a difficult subject to approach especially
From the carers prospective.
It is much easier from the patients point of view. May sound a bit daft but we the patients know where we are going, the partner left behind can only see the void opening up before them,and are looking at what appears to them a bleak future.
Many ( not all ) of us heart patients know we have a strong possibility that we may need care in the future, I think that's why like your husband we accept the situation long before we arrive at that point.
I believe your post highlights a gap in the system for carers of people suffering from serious heart conditions that are known to be progressive. We talk about Rehab, and Life style changes ,for the patient but not about the Carers/Husbands/Wives/ Partners who will be left behind,and who have to manage what is a miserable situation, I sometimes wonder if it's better to leave suddenly, but then I think it's better to be with someone you have loved throughout your life at the end, good memories are a valuable tool to help you overcome what is a difficult time ahead.
Sorry not to be of much help but I am sure most of us on this forum understand what you are going through at this difficult time.
My heart goes out to you. My young brother has been diagnosed with terminal cancer. This was made in February. He got high rates pips straight away and usually goes to people who aren't thought to live more than 6 months. He has said he doesn't want to know how long he has. Every morning he wakes up he thinks it is a blessing for another day. He won't talk to anyone about it. I would like someone to talk to as my family seem to be in denial. When he has a bad day I cry and there's nothing I can do.
My thoughts and prayers are with you Jan. Our GP was hugely supportive in finding a group for my mum to visit/talk to when we were losing my dear dad. I so hope your GP can help. X
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