Rebelhan

[Rebelhan]

Hi my husband has been told that his heart failure is end stage and I was wondering if anyone can help me process this I don't have any family support and I feel so alone

[cotonh]

I am so sorry to hear this. I have just come back from a Heart2Heart session run by our local Hospicecare. It was all about this. Try contacting your local hospice; they are set up to offer palliative care i.e. help with these stages of illnesses. They said that most hospices, except Macmillian and a few others, now offer help with any life limiting illnesses so this would seem a good place to start out. There was a range of things on offer to help the patient, family and friends work out how to go forward. Even if you local Hospice does not offer this they may well be able to point you to somewhere that does. In Devon we also have Devon Carers which provides support and help to us, the Carers, again there may be something similar where you are. I am sure others will give you further pointers too.

[devonian186]

I don't know if you Have Rowcroft round your way? As mentioned we have Devon Carers and I am sure there must be something similar covering other areas.

Can I ask if any time scales have been given?

[Rebelhan in reply to devonian186]

Thankyou for your reply my husband has been told to around 6 to 12 months he's only 52. I don't want to get upset around him but it's hard

[cotonh in reply to Rebelhan]

I sometimes have a complete meltdown and get quite out of control with my feelings. Sometimes we both cry, get angry or feel full how unfair this is, sometimes for hours and then fall asleep together . Although at the time I feel ghastly that I am so out of control in front of my husband it actually seems to be OK later. It is honest and it seems to let some of pressure out of the system and bring us closer. In a way it would be odd not be to deeply upset/disturbed/ overwhelmed etc. It happens because of how much he means to me.

The cardiac nurse at the Heart2Heart said that it is really hard to know the trajectory of this illness for an individual so 6 to 12 months is a suggestion.

[polenta in reply to Rebelhan]

So sorry to hear of your husbands diagnosis, but I am surprised that a heart transplant or LVAD is not options considering he is so young. Praying for him and your family.

[Harefieldfan]

so sorry to hear this.

[Lushka11]

So very sorry to hear this. Here's a link to Carers Trust where you can search for your local service to get some support: carers.org/

[DodgyTickerMum]

Very sorry to hear this. Unfortunately my Dad has end stage heart failure and was deemed ‘palliative’ last summer - in the same week as my Mum - for a non heart related illness. (Which was less than 2 wks after I came home from hospital following open heart surgery - so the timing was awful).

We sadly lost my Mum last September but, Dad is still very much with us. He insists on remaining in the family home by himself - independently. We maintain the garden for him, do his shopping, organise his admin and take him to all his appointments. He has a cleaner go in weekly but still does his own cooking and laundry. We invested in a wheelchair for him, as the odema in his legs and feet is so painful and he simply gets too out of breath to walk outside.

He has fortnightly appointments with the H.F Nurses, who constantly twiddle around with his meds but sadly, are now very limited in their options. He was allocated a palliative nurse and she helped apply for ‘Attendance Allowance’ for him - which isn’t means tested, so your Husband too, would be eligible for this benefit.

Dad was put on Dapagliflozin in November - which initially definitely helped support his heart and the fluid in his legs did decrease. I suggested this to the Nurses though - as the N.H.S have certain guidelines over its use. I know having I.V Furosemide can also very impactful if fluid retention is a problem. But the Nurses are reluctant to do this unless the fluid is above the knees.

We’ve always found the H.F Nurses to be so helpful and supportive. It was them that referred Dad to the Palliative Team. But, certainly in his case, he’s still plodding along. Enjoying spending time with the family and not in a hurry to depart anytime soon.

Our local N.H.S offers a ‘Care Co-ordination Service’ - that presumably would be offered everywhere. That may be a good place for you to start, re organising help and support. I’ll try and post a pic of the leaflet for you. I hope you manage to get the care organised that your Husband needs and support for you too, during this difficult time. Take care.

Care Co-ordination Service leaflet.

[Rebelhan in reply to DodgyTickerMum]

Thankyou so much for your reply my husband is only 52 and he gets breathless so easily now I don't like getting upset in front of him. We used to be out and about so much but now it's maybe once a week depending on how he's feeling. He's just got a non invasive ventilator to use at night as his oxygen levels are dropping low but it makes his throat dry it's hard for him I don't want to moan it's not me who's struggling for breath

[DodgyTickerMum in reply to Rebelhan]

Bless You. You’re not complaining. You’re just - understandably, very worried. So difficult to witness a loved one’s decline and be powerless to prevent it. Would your Husband entertain a wheelchair - so you cld still get out and about, like you always have done, if his breathlessness is an issue with walking? Make those memories, for you to be able to cherish in years to come.

It’s so hard, but pls try and get some extra support - for you too. Very little is volunteered - you do have to bang on a few doors to be heard. Anything that will make both your lives a little easier, will be a bonus. The H.F Nurses gave us the leaflet I posted. They wld probably be your first port of call.

Try and stay strong. Easier said than done , I know. ❤️‍🩹

[Rebelhan in reply to DodgyTickerMum]

Thankyou your reply means alot his nurses are brilliant and I will speak to them I don't think he would like to use a wheelchair but we have enquired about a mobility scooter which would make a massive help with getting out

[devonian186 in reply to Rebelhan]

Whilst he is still able, are there any favourite places he might like to return to?

[cotonh in reply to devonian186]

Apparently there is a Harley Davis style of mobility scooter! and the one below seats two...

allterrainmobility.co.uk/wo...

[devonian186 in reply to cotonh]

Someone in our village has the single seater Harley type mobility Scooter. I have never seen the 2 seat version.

So order one of those then its straight down to Brighton!

[cotonh]

Just thinking about what I learnt yesterday about the end stage of heart failure. What I understood was that it means that medications are no longer having much or any effect on reducing the problems that are making the heart not work well. At this stage the professionals change their treatments to limit the impact of the symptoms that develop and work to ensure that the person is the best they can be despite this change. You and your husband should be able to get support but I think it is natural, though excruciating, to feel / be very alone because of the emotional turmoil that the situation throws you into which puts you in a different world / space from most people around you.

[Shabana1974]

Hi that's devastating news, sending you lots of hugs. But get a social worker, they will help arrange all the necessary equipment overtime as well as referring you to a hospice, that more than likely as day centre. My mum was diagnosed with End Stage in 2009 giving her 6 months. Due to her strength and positive Outlook on life. She passed away 1st May 2014. The Hospice my mum Went to was Sue Ryder Hospice in Oakworth. At the end she spent the last 2 weeks there, over months of visiting the day centre she received counselling and we as family was invited to attend for support also.

Treasure the time you have, live each day as it comes. You may not want him in the Hospice but they offer support. So for that it will be great. And if you need respite.. they will offer that too.

Best regards

Shabana

[Qualipop]

MY dad was given 12 months to live. Prostate cancer not heart. I was just 43 with a 3 year old child. I got plenty of support for him from McMillan nurses and another group I now can't remember the name of but there is one thing I will say which I have regretted ever since is, spend as much time as you can talking to him and just being with him. Ask all those questions you're going to wonder about in years to come. I spent so much time trying to keep a clean house, a happy toddler and pushing tasty food at my dad ( as if that would have extended his life) that I really, really regret not just sitting with him, doing nothing, watching TV or just talking to him, asking how he felt, whether he was scared, what HE wanted to happen. I ran myself ragged; did everything I could for him but what I didn't give him was my time.

[Happyrosie]

your local authority, such as county council, should offer help for carers. Go to their website and input “carer” and see what you get.

I’m sending you my thoughts and prayers.