Advice welcome!: My husband has... - Lung Conditions C...

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Advice welcome!

Dens57 profile image
20 Replies

My husband has fibrosis of the lungs, advanced heart failure, sleep apnoea, and type2 diabetes. He's had all these for years and is on optimum meds. I know our time is limited as his health is deteriorating a little every month now. I'd like him to do things he wants to do while he still can (though he can't do much) but don't want to tell him "how Long" he likely has left as he doesn't seem to realise, or doesn't want to know. How can I help him best?

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Dens57 profile image
Dens57
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20 Replies
sassy59 profile image
sassy59

Hello Dens57, I too am carer to my husband who has COPD, sarcoidosis, heart problems and back problems. I personally like to spend each day with him pottering in the garden, going to garden centres, visiting local areas etc. Sometimes we go away on a Warner’s break but not since Pete had sepsis at the end of last year.

We have no idea how much longer we have together and tend not to dwell on that.

Enjoy each day for what it brings and make the most of your time together.

I wish you and your husband well. Xxxx

Dens57 profile image
Dens57 in reply to sassy59

Thank you. I'll take on board all you have said and try not to get my knickers in a twist!

Katinka46 profile image
Katinka46

Dear, wise, kind sassy59 has nailed it. One day at a time. Gratitude and affection. No pressure. No guilt. (And NO damn bucket lists.)

All the best to you both

Kate xx

Dens57 profile image
Dens57 in reply to Katinka46

I know the attitude should be "one day at a time, Sweet Jesus" and thank you for your words of help. I guess I had the BUCKET LIST thing going on at the back of my mind....maybe give it a miss unless he expresses a desire to do anything particular. Thanks again

Carnival567 profile image
Carnival567

If I am entirely honest I am in the same position as your husband, as I have multiple serious conditions for which I am basically receiving supportive care. My dear husband acknowledges this but we don’t dwell on it. We live our lives as normally as possible, enjoying the fact that I don’t have lung cancer, which was suspected but fortunately not after all, and I am not going blind from age related macular degeneration! Three years ago we moved to be near our grandchildren, which is a great joy. We go out for coffee nearly every morning, and I sit in the car while my husband walks the dog. We go to U3A and I run a poetry appreciation group. I am also a church goer. My husband has been seriously ill with prostate and bowel cancer but is in remission and has regained his strength. So I would say to you, encourage your husband to do what he can do, but don’t pressurise him. Enjoy your time together and live as you always have. We know the end for either of us may be next week, but could be next year, or the year after. Don’t be afraid to ask for help yourself. I am sure your husband knows about his situation but doesn’t want to admit it, but counselling may help you. With love and blessings to you both xxx

Dens57 profile image
Dens57 in reply to Carnival567

I am a born again believer and I know I shouldn't be worried about anything but the words come easily, the daily attitude of heart is harder. I'm sorry to hear of yours and your husband's problems and I will pray for you both. The Lord knows who you are and your needs better than anyone. May His will be done. God bless you both too, today and EVERY day. Amen

Carnival567 profile image
Carnival567 in reply to Dens57

And to you

Katinka46 profile image
Katinka46 in reply to Carnival567

Thanks Carnival. What a wonderful, gentle, loving, inspirational response. We don’t get out much but we live in a lovely spot.

Kate xxx 🦓💕💐

Dens57 profile image
Dens57 in reply to Katinka46

I too live I'm a beautiful area and even when I don't get out so much I can still marvel at the picturesque surroundings. I should be more appreciative of what I still have. Including the time left allotted to us. This forum has been an imitation to me. Thank you one and all

Dens57 profile image
Dens57 in reply to Dens57

# inspiration. I meant inspiration

Fleurbaby profile image
Fleurbaby

Hi Dens57,

Your husband is almost identical to me, in ailments!

I have no family, I have a few friends whom have gradually disappeared from reach, as I live day by day with these illnesses!

If I were you, l would just be with him, as much as you can!

I personally, would (DO) want company around me most of the time, at least 20hrs a day!

LOOK! My mother died from copd, plus other things no doubt, you have to be really, really patient, my mother used to get sick of having me around, she occasionally told me that! But, I knew what a 'bitch' my mother could be, this is the real reason a lot of the family didn't help.

When he is gone, believe me, it's hard, give all your love, kisses and cuddles!

I know that he will love that!!!

It is what I need! But I don't have anybody to share my days with. 😢🇳🇿🇳🇿👍💖💖🤗

Dens57 profile image
Dens57 in reply to Fleurbaby

I am so sorry to hear of your illneses and how you feel you have no one. That must be the hardest thing! I can't do much but I can and will pray for you. Message me any time of you want a natter, tho I'm not always online. I'll get back to you when I can. Isolation is awful. Thinking of you

Izb1 profile image
Izb1

Hi Denst57, just be there for him and as Sassy says, take one day at a time. I look back at the time when Mum was dying and am glad I had the time to talk, I held her hand and we talked about everything and I got to tell her just how much I loved her. I did the crosswords with her and we laughed at silly things. This has all helped with the grief and left me with good memories x

Dens57 profile image
Dens57 in reply to Izb1

I find it hard to be at home so much but I don't resent being with him, I just miss the company of others. Hubby is a tv fiend and I'm not. He's so quiet and never been talkative. But I know he is really tired. I'll try to take all the advice given. Thanks! Crosswords and card games, her we come

Meg52 profile image
Meg52

Just carry on being warm and loving. Do the little things he can enjoy doing and importantly, look after yourself. xx

Dens57 profile image
Dens57 in reply to Meg52

Yeh, too easy to neglect ourselves and be no earthly good to anyone. I guess I needed a moan as I was partially over tired. Thanks for your advice

micktheknife profile image
micktheknife

I had a little whine and a moan to someone on another forum many years ago about being upset by the short amount of time I had left statistically (Pulmonary Fibrosis/Sleep Apnoae/Hypersensitivity Pneumonitis) she pulled me up short and told me to have a look at the soles of my feet - I did so and told her I couldn't see anything untoward, "what! - no expiry date or best before?" she said. I realised what she meant and since have done what I can, when I can - no more and no less.

Bucket lists are pressurised to do lists, don't fall into that tyranny with your hub. He will be able to do some things but not others, so if he wants to have a go at something. let him (don't fall into the "you might hurt yourself" mindset, everything that he achieves will make him (and you) feel better.

Best of luck to both of you.

Dens57 profile image
Dens57 in reply to micktheknife

Ha ha! No expiry date of Best Before on his feet either.....Thanks for the insight

ledge profile image
ledge

Giving advice is easy, but taking it is another thing. The one thing that I have learnt through life with its ups and downs is that none of us know whether fit or not know how long we have. The only thing that we have is the moment. So if you make enough of the moments good ones, its a life worth lived. So as the very diagnosis of life in its essence is terminal. I try....I use the word try.. as its hard sometimes to value every moment I have both on my own and with company. Remember for us all quality should win over quantity in all things.

hugs to you and your husband. its not easy.

Dens57 profile image
Dens57

Thank you. Your reply was very helpful. I'll do my best with God's help to do the best I can for my hubby.

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