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Sleeping all the time

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User
Posted 02 Aug 2017 at 21:15
As the title says, my dad for the past week or so has been sleeping for about 16-20 hours in a 24 hour period. He barely moves out of his chair and is definitely a lot quieter than usual. His meds haven't been increased by a huge amount and he seems content when he wakes but I'm worried about this amount of sleep....

Thanks

Bee

User
Posted 03 Aug 2017 at 07:50
He had swelling from steroids or radiotherapy but it's reduced over the past week. This goes hand in hand with his appetite disappearing. He's drinking less too because he's just asleep so much. His face is really swollen still and it's just heartbreaking to see. Our Macmillan nurse is on holiday so I might give the other nurses a call today.

Thanks Lyn x

User
Posted 05 Aug 2017 at 18:50

Hi Bee

So tough for you Bee but I think that Lyn might well be right... the combination of sleepiness, loss of appetite and cold hands and feet (as the blood goes to the vital organs) is mentioned on the cancer research site as signs of death approaching: http://www.cancerresearchuk.org/about-cancer/coping/dying-with-cancer/last-few-weeks-and-days/final-days. The site also tells you how to respond to these symptoms to ensure that your dad is kept comfortable.

Is there a local hospice you can call to get their advice while your Macmillan nurse is away? Or another Macmillan nurse / out-of-hours GP? Since your siblings will need to come from abroad to get home it would be good to get an expert opinion rather than you doing all the worrying.

Take care

Ruth

x

User
Posted 05 Aug 2017 at 22:30

I'm so sorry Bee. There's only one ending possible once this disease gets a hold but knowing that doesn't make it any easier to deal with does it? But if your dad is able to remain calm and sleepy, and isn't in pain or distress, that will eventually be such a comfort. Do hope things stay peaceful for all of you. 

My thoughts are with you.

Hugs

Ruth

xxx

User
Posted 10 Aug 2017 at 19:34
Thanks Lyn, I really do appreciate it. We've lowered the MST and he seems to be coming back to us albeit slowly. Still very immobile and still sleeping a lot but not to the extent he was. His kidney results came back fine so we don't know why this happened. Still no appetite but he's having bits of toast and ice cream.

He's starting to feel pain now so I guess we nee to discuss with Macmillan what we can have that won't cause that to happen again. It's his 67th birthday next week and I didn't think we would make it.

Thank you for thinking of me - this board has been a lifeline to me during the past 12 months x

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User
Posted 02 Aug 2017 at 22:45

Speak to the Macmillan nurses again Bee. It may be that he is coming to the final stages (nature has an amazing ability to protect the body from pain and distress by increasing sleepiness) or it could simply be the impact of the high doses of morphine - unfortunately it is extremely difficult to get a balance between pain killing and being knocked out.

Is he still eating proper food? Drinking plenty of fluids? Any signs of lymphodema?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 03 Aug 2017 at 07:50
He had swelling from steroids or radiotherapy but it's reduced over the past week. This goes hand in hand with his appetite disappearing. He's drinking less too because he's just asleep so much. His face is really swollen still and it's just heartbreaking to see. Our Macmillan nurse is on holiday so I might give the other nurses a call today.

Thanks Lyn x

User
Posted 05 Aug 2017 at 13:43
The district nurses said to stop the Oramorph but it's made no difference. He's barely eating or drinking, his hands and feet are like ice and he can't stay awake.

I have siblings who live abroad and have told them they may need to come home.

I don't know if I've been too hasty. Will he be like this for weeks?

Bee 😔

User
Posted 05 Aug 2017 at 18:50

Hi Bee

So tough for you Bee but I think that Lyn might well be right... the combination of sleepiness, loss of appetite and cold hands and feet (as the blood goes to the vital organs) is mentioned on the cancer research site as signs of death approaching: http://www.cancerresearchuk.org/about-cancer/coping/dying-with-cancer/last-few-weeks-and-days/final-days. The site also tells you how to respond to these symptoms to ensure that your dad is kept comfortable.

Is there a local hospice you can call to get their advice while your Macmillan nurse is away? Or another Macmillan nurse / out-of-hours GP? Since your siblings will need to come from abroad to get home it would be good to get an expert opinion rather than you doing all the worrying.

Take care

Ruth

x

User
Posted 05 Aug 2017 at 20:30
Thanks for the reply and the link.

We've got the district nurses ready to call but he's so peaceful, it doesn't seem necessary to call.

It's absolutely heartbreaking as his voice is changing and everything. I'm glad he seems to be pain free though.

Just feeling heartbroken x

User
Posted 05 Aug 2017 at 22:30

I'm so sorry Bee. There's only one ending possible once this disease gets a hold but knowing that doesn't make it any easier to deal with does it? But if your dad is able to remain calm and sleepy, and isn't in pain or distress, that will eventually be such a comfort. Do hope things stay peaceful for all of you. 

My thoughts are with you.

Hugs

Ruth

xxx

User
Posted 06 Aug 2017 at 06:19
He woke a short time ago and has been the loo 3 times (sorry if tmi) so maybe this could be a virus? Clutching at straws now but I guess we will see what today brings x
User
Posted 06 Aug 2017 at 21:33
Update: my dad showing more confusion, can't keep things in his grip on both hands, low temperature. Macmillan nurse came out and thinks he has morphine toxicity despite the fact his Oramorph has stopped completely and his last increase in meds was 25mg of pregablin 3 weeks ago.

After initial relief, wondering if this accounts for completely lack of food intake and minimal fluid (we keep giving him tiny sips of water).

Sorry if this is the wrong place to ask...

Bee

User
Posted 07 Aug 2017 at 15:18

I think it is natural to look for other explanations Bee but I suspect that in your heart you know you are running out of time. Sit and talk about the past, say any of the things in your heart that you might sometime in the future regret never having said, remember funny stories from your childhood, take joy in any moments that dad is awake, hold his hand. If he is taking only sips of water, the home care team should be able to give you the sponge lollipops to dab on his lips and stop them cracking. His brain is stopping him drinking to ease his journey; as we dehydrate, natural pain inhibitors are triggered in the brain and sleep becomes longer and deeper. If he fancies a little ice-cream or yoghurt - cool things are soothing to a dry mouth - then it certainly won't do any harm and may be more welcome than trying to make him have things his brain is telling him he doesn't need.

I hope the nurses are correct and dad does rally but I would hate for you to be over-hopeful and miss the opportunity to say goodbye in the way you would wish. I have been where you are a number of times now and there are a few things that have happened with every single person I have loved and sat with; twiddling their fingers, plucking at the bed covers, seeing someone who isn't there. The district nurse once told me that the finger twiddling and cover-plucking are indicators that the brain is closing down.

Be brave; we are with you in spirit x

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 07 Aug 2017 at 20:25
Thank you Lyn for such comforting advice. I will do exactly as you say and spend this time together.

Our nurse came back from hospital and said she thinks the morphine toxicity could be because his kidneys are failing and there is a backup of drugs in his system. We'll know by tomorrow xx

User
Posted 10 Aug 2017 at 12:35

Hi Bee, just to let you know that I am thinking about you and hoping you are all okay x

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 10 Aug 2017 at 19:34
Thanks Lyn, I really do appreciate it. We've lowered the MST and he seems to be coming back to us albeit slowly. Still very immobile and still sleeping a lot but not to the extent he was. His kidney results came back fine so we don't know why this happened. Still no appetite but he's having bits of toast and ice cream.

He's starting to feel pain now so I guess we nee to discuss with Macmillan what we can have that won't cause that to happen again. It's his 67th birthday next week and I didn't think we would make it.

Thank you for thinking of me - this board has been a lifeline to me during the past 12 months x

 
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