Dad fading away before our eyes

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Dad is only 73, and has recovered from leukaemia (bone marrow transplant last yr)

He got flu and pneumonia after xmas and has been in hospital twice, and is on fourth lot of antibiotics. He's just not getting better though, the gp saw him last week (home visit) and said his chest sounds much better, but the weight has dropped off him and he's getting weaker every day.

He had a full blood count last week and apart from high infection markers (hence more antibiotics) his other results were fine. We are managing to get him to drink build up shakes a couple of times a day and small amounts of food but he's just not getting better and we don't know what to do next 😞

Are you able to talk to the GP about his long-term prognosis, or ask for a referral to the frailty clinic/geriatric hub (I appreciate he is very young for this) or whatever similar service you have locally?

I didn't know there was such a thing, I'll look into it. We just can't understand why he's just going downhill when they're saying his chest is now clear. He can barely walk to the bathroom now.

Does he have a leukaemia nurse specialist ? This team might be able to provide advice about where to go next

Pneumonia can be very hard on the body, my friend who is her mid 50’s had it and it knocked her for about 6 months, she was very frail for a while also.

Yes, we have been in regular contact with them and I'll be ringing them again today. He normally goes to clinic fortnightly for blood tests but has been too weak to go, it was that team that ordered the full blood count last week. However, because his bloods were all ok from a relapse point of view, I'm not sure what else they can do. I'd like them to say "bring him in and we will admit him to the ward".

A ward maybe isn't the best place if he's already weak. Is he drinking the build up shakes? Does he have a prognosis? It can take years to recover from a bone marrow transplant even in someone young. Hopefully the weather warming up and the antibiotics will help with his recover

Having to force them down him tbh, he's not keen on them but I've been reading about malnutrition and you can get breathless from that so that may be his problem.

Could you ring the dietitian attached to the leukaemia clinic and get some more detailed advice? There may be alternative supplements to try too.

Im not a medic, but have fair but of experience of this issue.

Do whatever you can do to get a Dietician involved.

GP/Dr should refer if he's lost more than a certain % of body weight over certain time. See NICE guidelines if needed.

There are special medical drinks that are especially high in calories AND vitamins & minerals. So even if only a small amount is drunk, the calories & protein & nutrients are in the body (& easily absorbed).

Fortisip COMPACT (extra protein variety if poss) or Ensure COMPACT are the extra-'strength' in a small size variants.

You can find them online while waiting for Dietician to get involved - they may well prescribe them. Up to 3 a day.

Should ideally also have a multivitamin & mineral. Best to get Dietician input on that given the medical history &/or current meds, because of possibilities of contra- indications or interactions.

Low iron / anaemia can cause breathlessness. Liquid form can be easier to absorb.
Again, Dietician input is best. Also iron supplements can cause constipation & thereby other issues, so best to be prepared to head that off.

Low level infection can also burn surprising amount of calories. If sorting the calorie intake doesn't stop the weight loss, consider asking for tests for inflammation markers to be repeated & focus on getting that under control (I see he's already on antibiotics, ask if they're having g the right effect & if not, review).

If there is difficulty getting a Dietician involved, could try hospitals PALS (patient liaison service) but that's for when normal channels aren't working.

Very sorry you are going through this. Wishing you all the best.

OP - how did you get on today?

I'd really argue against starting specific supplements without dietetic advice - I know it sometimes happens - because there are contraindications in some cases for them, and if your dad hates them he might refuse to try any others.

He's already on fortisip from the doctor, and I've had words with him about making sure he drinks them. He seems to be under the impression that he only has to have one if he hasn't eaten but I think he should have them as well.

Doctor called me this aft and said he would speak to us on Thursday when he's finished the antibiotics (I can't see that they're going to miraculously start working in the next two days).

I'll ask about a dietitian.

These viruses can really knock people out, especially as he is not long post-bone marrow transplant. He is going to take time to build up his strength again. He needs every support nutritionally. I hope he will gain some strength soon.

Hospital frailty wards are not good places to be right now. Patients are left far too long and there’s simply not enough staff to toilet/ change/ clean or feed everyone. Patients go without essential nutrients unless their relatives can help and sit in soiled bedding. It’s awful . I would definitely not recommend

He's in hospital again now. We have been going up twice a day between us but he has very little interest in food, to be honest I feel like he's given up now 🙁

So sorry you're going through this OP 🌺. Having the same thing with my grandmother at the moment. Constant rounds of antibiotics, in and out of hospital thanks to a virus that won't seem to leave her be, giving up on eating and we have to make her drink her fortisip. It's not like her at all. One of those crap storms we have to weather in the name of having family.

I would look for a physiotherapy referral / private service. It sounds as if he is barely mobile and they can help. That's really important to recovery.

I'm going to mention this when I go up today. He can get out of bed and walk slowly across the room to the bathroom but everything exhausts him.

Surprisingly his infection has improved and they're discharging him today. He is still very frail.

They did get a dietitian in who gave him the compact fortisips, the ones he has at home are the normal sachets though.

He's had a couple of sessions with a physio in hospital, is that likely to continue once he's out? He could definitely do with it to build his strength up.

I just really hope it's not going to be a case of send him home with no support to get better, otherwise he will end up having a fall and back in hospital.

Try and speak with the nurse in charge re discharge plans. Physio can be done in the community but resources are limited. If you think its helpful and you can afford it pay for it privately

Even a little exercise plan - just like deep breaths, moving ankles, sitting up out of bed for increasing spells and appropriate chair to do that in - makes a big difference. Get a high backed chair beside his bed if possible.

If a physiotherapist has seem him he should have exercises to do on discharge, and they may refer him on to community treatment. Definitely ask on discharge. Self refer now if in an area where that's available. Or ask if he can do even the basics at home - preferably not while alone there

www.csp.org.uk/public-patient/keeping-active-and-healthy/staying-healthy-you-age/staying-strong-you-age/strength

If you can afford it and can't get it any other way, I think paying for some home visits would be worthwhile.

I can’t help directly but my dad was in a similar situation, early 70s, had leukaemia but after chemo got pneumonia, was very very poorly and in ICU for some time. I thought he was giving up too.

he got better though and is pretty healthy now about 7 years later.

I hope your dad has a similar outcome. What I will say is the recovery from pneumonia is very very slow. It knocked my dad out for about 6 months. Hopefully there is some concrete improvement soon.

And yes physio is very important. The nhs was less stretched back then but my dad did not get discharged until the physio was happy- I think he was in for about 2 months. In your shoes I’d def consider paying for physio if that is a possibility.

A BMT takes a long time to recover from. My DD had one when she was 10 and took a good 18 months to get any sort of health back and she had youth on her side. Keep encouraging and I'm sure he will get there.