My husband has metastatic lung cancer with underlying copd. He is now on the palliative care pathway, at home with me . We still share a bed which is lovely in terms of emotional closeness, however his chest congestion keeps me awake. He no longer attempts to clear his chest with a good cough, and gets irritated if i prompt him to do so, says theres no point, although if he does have a good cough it will stay clear for maybe 30 minutes .
I find myself just lying awake listening to him apparently drowning, its frightening , tiring, and breaking my heart. Hes already on a whole load of medication including things to thin the mucus etc, and propped up as best we can in the bed.
This issue doesnt seem to bother him, i do feel a bit selfish but im so tired and upset. I suspect i just have to accept it, i dont want to spend our last time together squabbling about it.
Any useful thoughts? If i cant change the situation how can think differently about it?
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The whole situation is heartbreaking, but you need your sleep!
Has he tried sleeping in a reclining chair?
Thanks for suggestion- no he hasnt tried that, we talked about it, also a profiling hospital bed which could position him better, however its really important to him to feel me next to him by night. I get that. I do distract myself some of the time listening to podcasts through earbuds. I would not want to use ear plugs though in case he really does need to wake me.
Things dont seem so bad in daylight but the wee small hours are tough when your worries run riot! I appreciate being able to share this.
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Maybe, instead of focusing on trying to fix the situation, it might help to focus on the quiet moments you can still share together, even if it’s just holding his hand or being close. It’s hard to feel like you’re not in control, but being there with him, even through these difficult times, probably means the world to him.
@Teasel BIG hugs, it sounds harrowing for you
My dad had congestive heart failure and sometimes had fluid in his lungs. I felt the same when I watched over him in his chair on in bed.
There are some good pillows with arms/wings that are better ‘props’ Like this: Bedding Home Anti Allergy Back Rest Lumbar Support Reading Pillow, Soft Neck Pillow Back Support Cushion Orthopedic Pillow, Backrest Batwing Triangle Pillow : Amazon.co.uk: Home & Kitchen
Something that’s NOT just a V shaped but has a base bit. We used a ‘V’ pillow with wings, and 2 pillows to prop Dad up enough to find a comfortable position to get off to sleep
There may be a time when you need to consider getting an overnight watching/wake call or have a friend/carer watch over him while you get a good nights sleep.
I’m sorry to suggest this, but you’ll get to a point where you are sleep deprived and the racing-brain thing is even worse…Your ‘worries running riot’ is a sign of this already happening
I completely understand his fear of being alone, needing you, and you both wanting to feel close - that’s how it was for my parents
So, you may need to figure out a routine where you can get enough sleep, so that you can stay next to him most nights, Plus better support to optimise his breathing, plus a profiling bed and scheduling in an overnight support/carer monitoring.
I hope something there helps
Thank you , you are so right about feeling unable to ‘fix’ things- all the love in the world can’t do that, which i guess is a big part of my distress. I’m sure some acceptance on my part will help us both, as you say, to appreciate those close times together. Very helpful to have a different angle on this, thanks again.
Thanks so much for sharing your experience and understanding. I was so exhausted the other day , i slept right through the following night despite his noisy breathing. Nothing bad happened without my vigilance, in fact i felt rested and we had a relatively good day. That demonstrates your point about importance of my getting sleep. It’s hard to think ahead to inevitable decline, but as you say i do have a chance to prepare to some degree, the palliative care nurse said they will provide support in time so i can ’ just be his wife’.
This is all very hard and it may sound ridiculous to say, but we are hugely fortunate really , in that we have a (generally!) good relationship and some very kind professionals, friends, and now you generous folk on this supportive forum.
I will certainly follow up on suggestions, thanks again
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@Teasel You’re very welcome!
It’s So good to hear that the palliative care nurse said they can provide support. I wonder if they can give you some hours/a day/night here and there to start easing into support. A crescendo is better than an abrupt shift PLUS quality time as ‘just being his wife’ is so precious!
NONE of this is ridiculous! We’re all entitled to being human! I was really blessed that I could resign from my ‘big’ job to support Mum to care for Dad and Dad was ok enough for us to spend quality time BUT it was ALSO a horrific and traumatic nightmare in places AND I’m also grateful I could be here and care for Dad and now Mum BUT still we’re humans, not superheroes!
All to say, everyone here understands and there’s no judgement just a lot of concerned folks.
One of my favourite words was paradoxical
Bittersweet, piercing joy in darkest moments, dark dark humour with biggest laughs…
HUGS!
Have you tried a pillow or wedge to prop him up more? I get why he might not want to cough, but it must be hard hearing him struggle. It’s okay to take breaks too, you can’t pour from an empty cup.
Thanks yes we have tried a prop up metal bed frame, and now switched to a system of modular foam wedges and blocks. He can only lie on his back which is part of the difficulty, and despite best efforts , wriggles and slips down in the bed after a while. It is tricky trying to maintain a good position for the breathing and also keeping pressure off base of spine and heels. May need a profiling bed eventually. However, thank God, the last couple of nights his chest seems improved, or at least he is clearing it more effectively. No idea why but appreciating it! The world looks very different after a decent sleep.
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The most comfortable hospital bed I ever slept in was in ICU after I had my kidney removed.
Not only was the backrest adjustable but the section under my knees came up so it was impossible to slide down the bed. I had to try to sleep on my back after knee ops, always uncomfortable.