Talking with family

[Kvnhvn]

How does one share their heart failure health with their family?

[Anon2023]

hi. I think when I was first diagnosed I just blurted everything out to my family and probably terrified them in the process. I went about things in completely the wrong way but I was in shock and not coping with my diagnosis. I should have explained that heart failure isn’t a death sentence and I should have called it heart inefficiency instead. Heart failure is a terrifying term that scares everybody. Heart inefficiency just means that your heart isn’t pumping as well as it should and just needs extra help. There’s actually a piece on the pumping marvellous website that talks about explaining it to family members. It’s worth having a look. Good luck. Xx

pumpingmarvellous.org/heart...

[Kvnhvn in reply to Anon2023]

Thank you . Will check out that site .

[10gingercats]

I have taken a close family member with me to consultations...son or husband.That on the most important of the family know about what is going on.

[Lilredsz]

If you have a cardiac nurse / do it together - if you are recently diagnosed, maybe you have not yet come to terms as this in itself takes time. I personally had no choice as I had a HA and health deteriorated very quickly. However my nurse was amazing in providing information in stages therefore we had time to process the information. I also dislike the term Heart Failure it is a word easier for clinicians rather than people who have to live with a wonky heart. Share how you all feeling, but do not feel it has to be done all in one go.

[Larneybuds]

Good morning...as another member has said.....Pumping Marvellous....good information that takes the fear out of things. Don't just Google....only use recommended sites. Heart failure is the term used that a lot of us feel should be changed and I like Anon's wording...'heart inefficiency' much better because that's what it actually is. It just means your heart needs a bit of assistance to do it's job.Changes in lifestyle, diet and exercise plus the latest medications mean that people have much longer lives and heart technology and knowledge is changing all the time so things now aren't as scary as they used to be. The initial diagnosis does come as a shock and is hard to digest but you will find lots of support and advice from people on the forum who have been diagnosed with the same so don't ever be worried about discussing any worries or about asking questions on here.

All the best and take care x

[Deejay62]

My nearest and dearest would take turns to be with me when I saw the cardiologists so they heard for themselves. Mine began 20 yrs ago so they just think now mum isn’t well but she will be ok and she’s going nowhere. I just leave them to be in denial. Most people I know just say they think I look well.

[Rogo23]

Well we have a bit of form with regards to pump management in our family, either absolutely perfect or we tend to come second. And a rather veering approach to life's up,s and downs.So when I had what cardiologist called a "event" I put up a general post on the family WhatsApp from memory it was, hey guess what dad didn't just give me male pattern baldness, it's turned out that my heart is slightly wonky so he was really generous with the genotype.

I then explained in a slightly more restrained manner, big coranry (T) levels and what (T) is, basic intial diagnosis/prognosis and explained that in the event of stuff going south I wanted my barbecue to look like a explosion at a colour factory.

We as a family tend discuss dieing in the same manner as a birth or wedding it's just another event,and don't do subtle, sympathetic, compassionate caring yes but not subtle .

It's a case of how YOU need to do this, because in the final analysis it's rather important that a certain amount of self interest is used.

My uncles method was to ask who was going to light the oven now that he was on minus time and could he borrow my car.

I told him his ex wife wanted to and no chance, then took him to the pub.

Two weeks later he karked it, and anty pat read his eulogy, which was the cue for putting him crematorium.

But the was no way a bad driver with nothing to lose was getting his hands on my MG.