Lost with Dads illnesses and healthcare workers

[irishchick93]

Hey all,

Im posting here for a bit of advice really, not medical obviously.

Dad is 74 and has a whole host of medical problems, pulmonary fibrosis, heart failure, low blood pressure, diabeties, neuropathic pain, depression, poor mobility. Although its never been mentioned when you type it out he is really quite ill. However he is very with it although spends most afternoons napping.

He gets lots of homecare visits. Community nurses, respitatory nurses, physios however hes still on medication for past 20 years such as ramipril even though his BP is usually 90/50. He has mentioned this to several people including GP and no-one has done anything.

Last year he was hospitalised with sepsis and lost mobility after not moving for 8 weeks.

He now relies on a zimmerframe and has very bad pains.

Id like to do something to help him get better quality of life he loves getting out but its just tiring. The resp nurse mentioned him.getting travel oxygen which might help to walk out.& about a few steps and ive got an appointment to view a car friendly travel moto chair that could get him about.

Im wondering am i missing anything that could help and make things a bit easier and brighter for him?

buy a wheelchair with air filled not solid tyres. comfier for your relative.

PS get registered with his gp as being able to talk to them on his behalf. he will have to sign something to approve this. then arrange for a review of his medication.

get power of attorney sorted (one for health and one for money) while he can still be taken to a lawyer and is if sound mind. waiting for gp’s and lawyers to arrange things takes forever (over a year here as each thinks the other should contact/arrange with them, it’s disgraceful). much cheaper than to do now than later.

He needs to see a Geriatrician/be referred to the frailty team. Their doctors and nurses will do a holistic assessment of all his needs and de-prescribe as necessary.

I absolutely agree about the importance of paperwork. Assuming your Dad agrees: 1.Power of Attorney for health and wealth. It makes a huge difference in hospital. 2. I think that having him talk to GP or nurse to sign a Respect form is important. It really helped me with decisions around my Dad a couple of years ago. I had to say no to further investigations. I knew that was what he wanted which was reassuring. 3. Get a form that gives you consent to GPs to share medical info with you.’ That is a start.

It does sound as if the blood pressure meds need checking. If you have consent to speak to GPs you can start doing that.

Im not sure what else to say. Your Dad is still so young and I get that you want to help him. It is keeping in the loop that is hard when there are so many professionals visiting.

Im not sure how helpful this is. Hugs to you and dad though.

Is he known to the Community Palliative Care team? Pulmonary fibrosis would usually get referred to palliative care for all the reasons mentioned above - looking at the whole picture, advance care planning, talking to families, pain and symptom control.

I would ask for a referral based on his symptoms of severe pain, breathlessness, reviewing medication and wanting to plan for the future.

@irishchick93 have you asked the doctor why he's still on blood pressure pills when his blood pressure is so low?

The system is an absolute mess when you have a lot of conditions. To be honest, it's a mess when you have one condition.

I would start there.

does he give you access to all of his medical information? Not saying he should just saying that because your starting point is to have all the correct information.

Ah. Thanks for all the replies. :)
Yes i have access to all medical info. He really cant be bothered with ringing and ordering scripts now as i took over this when he was poorly post-sepsis.

The community resp team has been out this week. (Only just found out about this service even though he was diagnosed 2022)
It really does seem to be if you dont ask you dont get which is why im trying to gather as much info as possible.

Yes while he has a whole host of illnesses he still has his mother living at 95 who is a lot fitter than him 🤣

I have 5 little ones who he loves to see and we live nearby and do love taking him out. He drives himself aswell but doesnt like to everyday as he is very tired mid-day. Carers come on at 6.45am and no come & go on that time unfortunately.

@irishchick93 his blood pressure level is the first thing I think about with the tiredness

I realise there's a lot of other stuff going on of course.

yes, all the resources are hidden away like a secret

What is the community resp team by the way? Community response?

@EmeraldRoulettesorry community respitorary team. You wouldnt believe this but im actually a nurse and still didnt know this exsisted 😬

@irishchick93 oh I believe you

Not sure where you are based, but they changed the names of everything every five minutes and then they try and keep things quiet from the people who need them

And quite often the hospital and the GP don't know what resources are available

Some of what you find out, it's just sheer dumb luck.

I hope you can get some solutions and that your dad can have better quality of life 💐