Eye1

[3chinchin]

I have ipf and I am bringing up my 4 grandchildren and am finding it hard being on oxygen all the time and looking after them .my husband is in his 70 and does not want to talk about my illness .it's very lonely not being able to talk to him.

[Hidden]

What is ipf ??

[sassy59 in reply to Hidden]

Idiopathic pulmonary fibrosis. X

[Hidden in reply to sassy59]

Oh wow

I've got Copd and a menichial valve and pacemaker

Don't u have no. 1 to help.u out with the children? X

[sassy59]

You can talk to us 3chinchin as we are very good listeners. Your husband is probably afraid of what he doesn't understand.

Bringing up your grandchildren is a wonderful thing to do but very tiring. How old are they? I hope you can get help with everything and glad you have found this site.

Take care. Xxx

[casper99]

I don't have your disease 3chin, but there are plenty on here who do and the whole forum are here to listen to anything you want to talk about so, please don't feel alone.

I felt very much the same when I was diagnosed with Emphysema, I didn't want to burden my son's or my brother's with it. They would get too upset. Coming on here was a god send.

I don't doubt your husband is fully aware of the pressure you are both under with your illness and grandchildren too but, he just doesn't know what to say or do, except plod on.

The ages of your grandchildren would have the most bearing on what options you have because 70 year olds, even fit ones, would find it very difficult to rear 4 kids. , especially if they were very young.

It sounds as if you both need professional help, even if it's just to get advice on what help there is out there for your situation or for the future. You both really can't do this on your own.

Is there no other younger family members to help care for the kids?

Or, what about your docter? Maybe he/she can point you in the right direction?

I really feel for you and your husband 3chin, having once being in your position with 4 siblings when my mother died. It was very hard work then but, I was young enough and healthy enough to cope, your not.

Keep coming on here and maybe between us, we can come up with something for you. You don't have to do this alone xx

[Hidden]

HI , your post is what were hear for, we are good listeners anything you need to unload eh please do so,, your grandkids I myself applaud u on that and being a oxygen user as well shows to me how strong a will power u have,, I don't no there ages but happen you can get the eldest two , to one side nd have a chat how to help you out , that way you all stay together, or a health worker to come and see on a bit of help for u so u can all stay together,

[Hidden]

Try and talk a bit more to the guys on this forum. .I think you need a lot of help...I can only imagine what it must feel like for you.

The children need help if they going to have any kind of chance in life.

As hard as you yourself is doing I just can't see that been enough with all the difficulties you have.

I hope for you and your family that you will stay with us.

Take it easy and take care.

Andy xx.

[peege]

Hello, welcome to the forum.

There are several people here with IPF or PF who will understand exactly your lung problems.

How brave and wonderful that you're bringing up your grandchildren, how old are they? Goodness, I get exhausted when I have mine, 2 & 4, for a couple of days and I'm no where near needing oxygen.

If I were you I would do my best to get stronger & fitter. I hope other members with IPF/PF (I don't) will join this thread soon to share the ways they keep strong.

It must be a very scary situation at times.

Would you ring or email the BLF, they have several leaflets they can send for your husband to read. It may help him understand. I really hope so.

If you don't want to contact them you will find the information somewhere on this site, perhaps you could print it off for him and the kids to read.

All the very best to you. Peege

[bayleyray-uk]

Hallo 3chinchin,

You have got a lot on your plate. I know how it feels to feel all alone with no body to confide in but you can always chat to us.

I have a hubby who tries to stick his head in the sand and feels if you don't talk about it everything is alright. When I was officially diagnosed and started to see a consultant I made sure that John comes with me to every hospital appointment. I also get him to set up my nebuliser and how to sterilise the equipment and he now looks after the oxygen tanks as my muscles are not what they were, get food out of the oven that sort of stuff. It's just to remind him that I can't always do things. Let's say he is a work in progress.

I am in awe of you bring up your grandchildren, you must get absolutely shattered. We look after our two grandkids 3 days a week and by Friday evening I am zombie like.

Try to look after yourself and get hubby involved more.

Cheers,

Sue

[3chinchin in reply to bayleyray-uk]

Thanks the children are a gift of love from my dead daughter they keep me going

[onamission]

Hello and welcome to this friendly site I have COPD and a granddaughter { not living with me } but I know how difficult it is looking after children with this condition.

Also my husband doesn't like to talk about my illness and thinks I will be ok and out live him but this is because I have always been independent and done everything in the house and work a full time job, my husbands job takes him away from home.

We are always hear to talk or help or just listen