The end may be near

[susantigner]

I have written infrequently here but appreciate all comments. My husband was diagnosed with unspecified dementia and eventually FTD AND PSP With CBD on the spectrum. He is sleeping more, pocketing food and now drinks thickened liquids but apparently can't swallow food as he spits it out. He is non verbal. I think the end is near but I wish I knew if he is choosing not to eat or he can't.

[Hidden]

Think everyone on here knows how you feel. I was there a number of times. How much longer will this go on ran through my head a lot. I finally stopped trying to figure it out.

[Dadshelper]

Is your husband able to communicate in any form, thumps up, hand squeeze, eye blinks etc? If he can... ask him what you asked here. Only he knows why he is spitting out the food or pocketing it.

Ron

[SewBears]

Is your husband still in the care facility? Is he on hospice? It would seem like the professionals would be able to tell you why he isn’t swallowing but that’s just me, being optimistic. Maybe you’re right and the end is near. Who knows with this disease? Did you have a chance to put his wishes in place before he lost the ability to communicate? I know that my husband doesn’t want to be force fed. He has requested that if he can’t communicate, eat, or know who I am, then his wish is to be kept pain free so that he can let go. It won’t be easy but I hope to be strong enough for him. I think that you have probably answered your own questions but you aren’t ready for this phase yet. I don’t think any of us are ever ready. I’m so sorry.

❤️ I SewBears

[salem16]

My husband lasted approximately a little over 3 years. He got aspirational pneumonia. From when he went in hospital he lasted 8 days no food or water or enough pain meds in Canada. It was extremely hard. I took pictures of his last days maybe that why I depressed as I text you it’s approx 4 1/2 months I am still crying. I don’t sleep yet. He never got in time the feeding tube. I believe it better he went he suffering and so I and my daughters. It a horrible disease. I believe he is at peace . The end is coming when he can’t swallow only so long it lasts. I saw the suctioning the chocking my daughters saw little of this. I can’t begin to tell you how helpless I felt. Emergency personnel trying to clear his airways, how adrien felt choking fighting for breathe of life. It’s not something anyone to witness it’s heart wrenching tore me to pieces. His brothers and sister seldom visited not good they afraid. If god grants he go on his sleep you are lucky. My husband was skin and bones before he died.

[susantigner]

Thank you all. I was able to communicate a bit with him last night and he ate some ice cream. He is in a wonderful facility and hospice is with us. Yesterday he was unable to sit in his chair he kept sliding out so he is in bed now. With our pastor there I told him he was dying as all have confirmed he is moving towards that place. I did not want him to not know and just be scared of what was happening to him. We'll see how each day goes. It is uncanny that my father, of 89, passed in 48 hours from Dec 5 until Dec 7. He was a consummate teacher and showed us the way. We decided a long time ago not to take any active steps to prevent death. I am grateful for you all and I hope by sharing others may learn something and not feel alone.

[susantigner]

Dear Salem16, breathe and feel God's peace. All was done that could be done and as you said your husband is at peace so please accept God's peace for yourself.

[salem16]

He probably can’t eat.