Query

[SPARKY1988]

My Dad was diagnosed 3 years ago and is now on Oxygen from around 7months ago. Only at level 4, but struggling to move or walk far at all and just wanting to be sat currently. I am finding it hard watching my Dad not be able to do anything and my Mum has essentially become his carer when they should both be enjoying their retirement. This is a very cruel and heartbreaking disease.

I just wondered if there are any family members on here going through the same thing to connect too? I'm finding talking to my friends hard as they don't understand the circumstances to the same degree. Just wondering where my Dads IPF can go from here? I'm just trying to wrap my head around what may be coming and not burying my head in the sand.

Thank you for your responses (if any) in advance. SparkyK

[Caspiana]

Hi Sparky. I don't know the physical state of your dad so it is hard to say what he can and cannot do however, I have been on oxygen before I had my lung transplant and what I can say about it is it is VITAL he does not stop moving. With lung patients we get breathless and people think being breathless means it is bad and they should not move for fear of being breathless. The problem with that is the more deconditioned one becomes, the weaker the body becomes, the less we are able to cope and the lungs along with other organs go into decline. It becomes a vicious cycle. Breathlessness in itself is not bad. Your dad must walk even with oxygen. The only way to have a better prognosis is to work those lungs. The more he sits around the less his lungs will work. I know it is harsh but it is reality. Unless of course his doctor has told him he cannot do physical exercise. I would inquire about pulmonary rehabilitation groups he can attend. Have a daily routine where they go out for a walk. Start slow and build up. To be blunt spending the day in his chair will not help his condition it will in fact hasten his decline. I think your mother needs help too. Something to talk to social services about maybe.

Best wishes,

Cas xx 🙋‍♀️🐕

[Spacecat1]

There is a carers group you can contact they have people in similar situation. My hubby has been my carer for about 7 years. I am sure there are days when I can be a pain. We get on well we go out once a week have a meal out etc. My hubby is my carer. We do have a mobility car which does help. As I don't drive.

[Bingo88]

Good morning SPARKY1988. It is very difficult for you watching your dad suffer because you feel so helpless because you can't do anything to help him. What Caspiana said before is all correct. Perhaps get the respiratory clinic to check him over to make sure his meds are helping him as much as possible if they have not seen him recently and please take care of yourself and your Mom. Because this is a tough time for you all. But you both need each other for support during this difficult time. Take care and keep in touch. Brian

[Alberta56]

I'm in a rather similar position to your mum. My husband (81 years old) has dementia and some physical problems. He has become very inert and spends most of the day sitting on the sofa. I have become his carer, which is not ideal for someone with bronchiectasis. I really don't know what the answer is, except that I am trying to get a cleaner to help me with the housework. I did not find Social Services very helpful. They just told me to phone one organisation, who told me to phone another organisation, who told me guess what! I hope they are more helpful in your area, but round here (North Essex) they all seem hopelessly overstretched. Have you applied for Attendance Allowance for your dad? CAB could help with this. It might help in a small way for buying in help. Someone to help with showering, say, might ginger him up a bit, or a cleaner to help your mum. Perhaps there is a day centre which might offer your mum a bit of respite. You need to talk to Social Services. Lay it on as thick as you can. I hope you find a way to ease the strain. Let me know if you do. I need to be encouraged to push for some sort of help. Best wishes, Alberta. xxx

[SPARKY1988]

Thank you all for responding and your comments and replies. It has been lovely to hear from people with first hand experience. I have passed on comments about keeping going to my mum and dad and hopefully with a bit of encouragement he will get going again.... think he has just got himself in a rut! I will see who I can get in contact with to support my mum some more too, thank you for your suggestions! Sparky x