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Final stretch in this Marathon
Posted: Saturday, August 17, 2019 8:06 PM
Joined: 12/10/2011
Posts: 428

So, DH is back on hospice and drinking and eating very very little. Only a few spoonfuls of water and ice cream today. Same story yesterday and for a week now.

Last night I called the nurse at midnight because his breathing disturbed me. He seemed to stop breathing for what felt like a long time and then start up again. She told me to give him morphine next time I see the same symptom and she hooked him up to an oxygen machine. It felt reassuring to have another person in the house.

Now that the time appears to be getting near, it is obvious I'm not emotionally prepared for what comes next. It's so hard to see him refuse food. He is completely non-verbal. He just shuts his mouth and refuses to open it. I spend all day going back again and again trying to get him to take a little water and ice cream. I made him a nutritional shake, too, but nothing would go down.

I called his closest relatives (his sister, mainly) to come and see him now. She will be here in a couple of days (she lives in another State). It will help to have others here, for sure.


Posted: Saturday, August 17, 2019 8:20 PM
Joined: 5/8/2018
Posts: 50

YS...It hurt my heart reading your post and I so wish I had some comforting words for you.  I can’t even imagine what you are going through and how you feel.  Just know those who have gone before us and those, like me, who are facing this same situation are thinking about you and I will be praying comfort and peace for you and your DH.
Posted: Saturday, August 17, 2019 8:28 PM
Joined: 4/2/2018
Posts: 2266

This is a very hard time. Thoughts and prayers coming your way.
Posted: Saturday, August 17, 2019 10:05 PM
Joined: 9/7/2014
Posts: 38

I truly feel your pain.  My DH has taken a real dive in the last few days and I don't know if we're nearing the end or if this is just another temporary fluctuation of LBD.  He was placed on Hospice about 6 weeks ago but he was still quite lucid and able to transfer from his wheel chair with help.  Then, about 3 weeks ago the hallucinations became quite active and led to several falls when he would try to get out of bed by himself during the night.  Now he's become so weak he can't stand at all and seems unable to control his limbs.  He's mostly in his own world, muttering about the computer program he's building in his mind.  Periodically he'll say something understandable but it's completely from within the current hallucination he's having.  The last couple of days we've had to feed him and really work to get him to swallow.  He'll take the food but then just hold it in his mouth.  I've started running his food through the blender but when I tell him to swallow, he just makes a chewing motion and then quits again.  It takes several minutes to complete each bite.  He managed to get down about 15 or 20 bites before he became too tired.  The other thing I'm really concerned about is the drainage that comes with the LBD and he just makes little hacking coughs in his throat and sounds as if he's drowning.  He was hospitalized in June with aspiration pneumonia that went septic.  I wonder how long he can breathe this way before it happens again. 

Anyway, I just wanted to say I can imagine how worried and overwhelmed your feeling and to know your not alone in this.  We are here with you and for you.

Lori H

Keep It 100
Posted: Sunday, August 18, 2019 6:38 AM
Joined: 2/26/2017
Posts: 514

Sometimes we get caught up in the small trivial things in life... then I see a post like this and am yanked back to reality. The pain and anguish felt by both you and Lori is quite palpable and in reading your posts I am left with a lump in my throat. Thank you for sharing and I wish you both peace in this difficult time.
Posted: Sunday, August 18, 2019 9:44 AM
Joined: 4/12/2019
Posts: 142

Dear YS, 

Victoria2020 has marvelous wisdom and suggestions.

You would find comfort from company (family or friends) in this very stressful time.

Can someone come just to sit with you awhile?  This is the hardest time.

Regards, ElaineD

Posted: Monday, August 19, 2019 9:57 PM
Joined: 7/10/2017
Posts: 645


Regarding sleep apnea (long periods of not breathing, then breathing again), my wife used to have that and it really bothered me, especially when she would go for a minute or more not breathing.

Surprisingly, I found a simple solution.  I put her sleeping on her side (rather than her back), and got a "wedge" (or raise the head of the hospital bed) so her head was slightly raised when she sleeps.  No more sleep apnea at all. None.  And she's a lot more comfortable.

I'm not sure it will work for everyone, but it's a lot easier than morphine if it works.