Heart Failure caused by acute pulmonary fibrosis in 82 year old father

[pip666]

Hi all, I'm new here and hoping that someone will be able to help me to help my father who was diagnosed with heart failure 2 years ago shortly after his 80th birthday by signposting where to go, what to do next.

It has been a rollercoaster couple of years with admissions approximately every six months often due to water retention, which I thought wasn't too bad given the diagnosis. For the past six months he's also been on oxygen therapy.

The latest episode of very poor health started on 15th March this year when he had a very hard fall on his way to a routine hospital appointment. My 80 year old mother who is his main carer with her own acute conditions reported that it took five people to pick him up from the pavement and he was very shaken by this. Nonetheless he drove himself home and only sought medical help a couple of days letter when his left leg was very swollen and his wrist very painful. Cellulitis was diagnosed and antibiotics started, x rays showed no broken bones or fractures but he was literally black and blue from head to toe. DN have attended daily about a week after that after his leg started blistering and oozing. He's had two more falls in the house since then, he's a very proud man and is trying to be independent despite the fact he's gone in a month from being able to drive himself and walk from car to a hospital appointment to literally only being able to walk 10 steps at most using furniture to support him. He has also become reliant on his Oxygen almost 24/7

Last week the DN called after the Easter break and immediately called the GP out to visit who arranged a hospital admission. DN was concerned about his breathing and his leg was swelling up again. He had also developed a bad cough. He was discharged yesterday after what felt like a very disruptive and upsetting admission for Dad, albeit seemingly worse now than when he went in. His discharge papers read that his breathing has got worse, he has oedema in both legs and warned him to stick to 1.5 litres of fluid a day. He has put over a stone in weight on from 04/04 to 09/04 and his mobility is even more reduced but no plan of care other than limiting fluids and diuretics .

I don't know what to do next. I live 260 miles away from Mum and Dad. They have no external support other than the DN and whilst they are open to my suggestions of getting more help, they are both terrified that they will be assessed as not coping and my Dad will be admitted somewhere never to return. My Mum has severe visual and hearing impairment and severe hearing impairment and describes Dad as her eyes and ears.

I am a senior manager in health and social care in a different field and I feel at a loss as to what to do next to support Dad now and in next stages as well as Mum. Ahead of contacting PALS at the hospital tomorrow to initiate a complaint about what feels like a very early discharge without an assessment of his continuing healthcare needs and his community care needs, I wanted to ask if anyone else had any experience of this or if you can advise the criteria for NHS continuing healthcare and how I go about accessing. I'm even wondering about raising a safeguarding alert but again am worried about Adult Social Services descending on my parents when I am 260 miles away.

I've read up about hospice care and this feels like it should be the next step but both parents are very fearful of what this means for them both.

Any suggestions as to next steps would be gratefully received. I am setting tomorrow aside to start making the telephone conversations i need....

[Sina-6491]

Blimmy you poor thing, what a worry you and your parents are going through.

The district nurse you say visits regular. Has she not been able to advice on moving forward I wonder.

With your father being poticually vulnerable at the moment. At the hospital, they should have organised occupational health to do a home visit to access your dads needs.

This is not to put him in a home or anything like that. No it is simply to access how he and your mother copes with his needs at home. So how they can use the resources available to them to make life a bit easier at home for your parents.

That can be anything from the district nurse he already sees. To what aids they can lend him, to what extra help he might need as far as carers are concerned.

They can also look and advice on what activities there are in the area that they could maybe join in with. Possibly with some kind of local volentreey transport avaliable to take your parents there.

He needs to feel some self worth to evan want to make any kind of effort.

If his breaving has deteriated, the should have sorted some kind of rehab on tge COPD front. They can show him through rehab physio classes how to use every bit of his lungs to possibly help him breath better.

Have they sent him home with breathing exorcise advice.

Also, what was their advice on his swollen legs and water retention.

Sounds to me that your poor dad hasn't exactly been given the after care and advice he needs.

I would firstly try to talk to his surgery.

Maybe with your father's permission by him contacting his surgery. His Gp could contact you as a responsible adult to talk about his non existent after care.

Your poor dad is really quite poorly and temporary vulnerable at the moment. The last thing he needs is worrying that everyone in the local authority, is ready to send him off somewhere that isn't his home. So feeling if that were to happen, it would be to never to return home.

You and your mum must be at your wits end due to all this. I for one am very sorry you are having to struggle through all this. What with the further frustration of living so far away.

If you feel you are getting no where in the next couple of days. I would put everything in writing.

A diary of all you can remember of your dad's health issues in the last two years.

Any dates if possible

Incidents

Medication

How it has effected dad, mum and yourself emotionally. The fears you and your parents now have of them not being able to stay in their own home.

His resent falls and illness leading to the build up to staying in hospital.

In poticula this last hospital visit with the lack of information, advice and support.

Make several copies of the letter. Address it to your local Mp, your parents local Mp, your father's Gp and the cardiac unit. Keep a copy fir yourself.

Let them all know who you have sent copies of the letter to.

Insist they acknowledge the letter, by sending you a reply in writing of just how exactly they are all going to work together to support you and your parents. By insuring they organise the correct support through the local resources to give your father a much better quality of life.

How are they going to do their upmost to support him in staying in his own home.

In what way are they going to give him the medical attention he needs.

In what way are they going to make it easier for you to be able to support him from a distance.

How will they insure you that they have a plan of action in place, to contact you in the case of an emergency.

I sincerely hope that things improve for you and your parents very soon.

Just a thought, are him meds interfering with his balance, concerning his resent falls. I take it his B/pressure must be ok. As this should have been checked regular with his hospital stay.

Has he had an ear infection or headaches recently.

Did they do any blood tests, while he was in?

You know, like:

Thyroid, V/D, anemia that kind of thing.

Anyway, the nurses on this forum from the BHF are great with advice. Also all our friends on here will come up with some great advice. So hopefully tomorrow when they see your post. They with be able to support you in your time of need.

I send you very best wishes, Jo xx

[Sina-6491 in reply to Sina-6491]

Ps, sorry for poor grammar also poor spellings.

It's late and I am useless at all that stuff anyway.I am sure you'll get the gist of what I am trying to say😊

[MrMusic]

My sympathies. it’s sounds like both of your parents are in the twilight of life and maybe placing them both TOGETHER in a care facility is where the situation has come to for their and your piece of mind. Good luck and God bless.