Just Stares

[Indiana-Girl]

Good morning, everyone!

My husband was diagnosed with CBD in 2018. Since then, as you all know, it has been a long downward slide. He is now bedridden and can barely speak. He is in hospice and has been for over two years. While he does choke, it is not yet out of control. He does have trouble drinking now as he spits the liquid out instead of drinking it. Three weeks ago he had double pneumonia in the lower lobes and a UTI. His fever was up to 102.6. Every time he gets sick we take a giant step backwards. Now all he does is stare at the ceiling. Unless a new person comes in, he just is in his own little world. He wants the TV on but just stares at the ceiling when even his favorite shows are on. He absolutely refuses to look down at his hands to use them in any way. Has anyone else experienced this? It is so frustrating and difficult to watch.

[Perrywrinkle]

Dear Indiana Girl,

I lost my husband the end of September. He also was diagnosed with CBD in 2018. If your husband is not eating or drinking, unless he's being tube fed, it sounds like the end is near. My husband was also on hospice and he was heavily sedated toward the end. His passing was calm, peaceful and without pain. I would encourage you to do everything possible to avoid any regrets: Talk to him, even though there is no response. Read to him, tell him what a wonderful husband and or father he has been. Bring up special memories of things he said or did that made you proud of him. Nuzzle his neck or lay beside him if that's possible. If you're sleep deprived and exhausted as I was, these suggestions might seem hard but try to cherish the moments with him now.

I'm so sorry for this unspeakably hard time for you both.

[peli]

Hi Sandi,

I think, unfortunately, that Periwrinkle's thoughts are correct .... my wife who also battled CBD very courageously, suddenly started staring at the ceiling just before Christmas 2022 and from there spent the next 9 or 10 days hardly eating or drinking at first and not at all for the last few days of her life and died on New Year's Eve. She was at home with me and I had help from a carer a couple of hours each day. A very sad time but I must say that my wife did not seem to suffer at all, those last days were very peaceful. I hope you spend as much time with your husband as you possibly can over the next few days just in case he is ready to let go.

You and your husband are in my thoughts.

David

[Jodi999]

Hi,

Reading your story I think we're in the same situation with my mother in law. She also had pneumonia in the beginning of the year and as a result she no longer speaks and eats small bits of soft food. End of life care has been put in place but she seems to have stabilised a bit for now. She's also bedridden and only either has eyes closed or just stares.

It's very difficult to watch, the doctors advised against a peg tube as she's too weak and it would not improve her quality of life. I suppose this is the last stage before the end stage and they've almost fully lost control of their muscles. It must be incredibly hard mentally for them (also for loved ones).

I've read lots of stories on here which helps be a bit more prepared but every decline still feels sudden.