My father is in last stage dementia. What should I do? How long does he have?

If I were you, here is what I would do. I would call hospice to come in. (You may need a script which (with any luck) the hospitalist that saw him in the hospital will write). Hospice will come and (from what you describe) admit him into hospice. They will arrange for any equipment he may need. They will advise you on steps to take. And the ones near me, sent an aide five days a week, 2 hours a day to assist with bathing, cleaning etc. A nurse will come as needed but at least weekly. The professional manner in which they will handle your Dad will give you such comfort and they will give you all of the direction and assistance you need. Truly at this point, taking him to the hospital is unnecessary. good luck

I was with my mother when she died. She ended up hospitalized due to a broken leg but I fought to have her come home to be with her family at the end of life. Hospice was amazing when contacted as within hours they had completely remade the extra room in my house into a hospital room. We had a trapese bed, bed pans, a end of life drug kit which I never had to use, a little pamphlet on what to expect and they had come to visit. She arrived home less than 6 hours later. My sister and her two kids were home so for the next three days she was able to make memories with them and more importantly they were. My sister's oldest daughter sat on the bed showing her the tablet she had gotten for Christmas and all the games she had put on it already. My sister's youngest, he sat on the bed eating his snack with her. Two days before she died, we had new Years and the family was all heading home the next day. She sat and tried to drink egg nog but even with thickening agents she choked terribly. She had cancer so it was a bit different than dementia. She fought to eat but couldn't as her body was failing so badly being attacked from the inside out. She was so small and frail. I honestly hadn't noticed it until a nurse from hospice came in commenting on how terrible cancer is to a patient and how frail she really looked. For the first time in the 3 years she had been fighting cancer I truely saw her for a cancer patient and my heart broke. I still haven't forgiven hospice for that comment.

But anyway she was sent home unable to eat or drink or keep anything done. I too tried thickening powder but it did not help. I used sponges to keep her mouth wet as she would complain about that. We had an humidifier in her room to try to keep the coughing down to a minimum. We sat and looked at pictures and watched Halmark movies together (her favorite channel). She unlike a dementia patient was alert most of it but sleeping a lot. She would sleep about 20 of the 24 hours a day. She was dying and we all knew it so as soon as the family left, the hospice came in and offered morphine for pain relief but really to help with breathing. They assured me she had weeks left and that her breathing would be less coughfilled if I allowed morphine. My mom and me didnt know it at the time but it quickens death and would almost immediately cause a coma. Everyone said their goodbyes with my dad being the last one with her and then on the morphine drip, she fell asleep peacefully. Three hours after morphine was given, she fell asleep for the last time. That was the last time she was awake.

Hospice came the next day for a wash up. That was the day I was made to see her as a cancer patient by their comments. They left her in my care. I read to her. I sat and continued to watch movies not leaving her side. They said she had two weeks. I in my heart knew it was going to be days. The whole process that we were told would be a month after her return home from the hospital took a solid week. They told me what to expect when she was passing. The weekly time tables and they all had occured a daily events. So I sat with her and held her hand. Fell asleep by her side resting my head on her bed when I couldn't hold it up anymore. Talked to her constantly even though I knew she wasn't there. I reassured her I'd be fine but would miss her terribly. I assured her everyone loved her and would be ok. I told her I'd care for grandma so she didn't have to worry about her anymore and that all she needed to do was to go to Heaven and to adopt that cat she could never have on earth and to eat all the desserts she could as she was allergic to tree nuts and everything here has tree nut warnings on them.

The next morning her breathing was loud and labored. It was almost like a loud rattle. I turned up the humidifier but knew it wouldn't help. It was her body failing. It was still peaceful though going in and out again at a steady pace. I called hospice (I had to call hospice daily to give updates to get someone out to my house as I was given a nurse who was on vacation that week so did not have the support I should have.) and they told me to sit with her and they would send someone. No one came. The breathing continued to be like that throughout the day. The morphine drip continued and she slept on peacefully. I stayed with her through the night laying my head on her bed and holding her hand not leaving her side. I woke up, her breathing was normal but really really shallow. I had to in fact put my head against her chest to feel it but sure enough it was there slow and steady. It was so slow. I can remember staring at it willing the next breathe. I called up hospice told them I had an hour at most. They didn't believe me so no one came. I sat with her, talked more to her and waited. Sure enough 45 minutes later, her breathes were really slow. Her body was completely not moving other than these breathes.

To tell the whole story which won't be happening to you. I was caring for my grandma who was in the next room from me and my mom. The services in CT upped grandma's hours for the few weeks to give me time with my mom. The helper was in another room while grandma was next to me and she took in a deep breath and started choking unable to get her breathe. I had promised mom I'd be back and ran next door pounding on grandma's back to restart her breathing. Within a few minutes she was breathing and I rushed back to mom's side. Luckily for me she was still doing the really really slow breathing.

I started to count between breathes earlier and continued. They were so far apart I found myself holding my breath just to make sure her body could hold it that long too. I held her hand. Within two breaths of me saving grandma, mom took her last. She let out an extra puff of air after that last breath and that was it. She didn't move. I counted and held my breath but eventually had to let it out as she took no more breaths. I once again called hospice asking for them to come.

What no one tells is that you now have your deceased loved one in your house for however long it takes for someone to come pronounce dead. You don't want to call the hospital. They have to do CPR on them or so I was told so I had to depend on hospice. With no nurse on duty assigned to us no one came to declare her for 2 hours. Despite my time of 9:02, her passing was declared at 11:35 am. Meanwhile a nurse comes and cleans them up and you put on a clean nightgown. She was on a catheter which was removed. I had taken her morphine drip off her right after she passed. The only sound after she passed was the sound of that drip and it made me mad that she had passed and they were continuing to pump those awful meds into her so those were already removed by the time the nurse arrived. So the nurse pronounces her dead and makes a phone call to the funeral home of your choice. Once again you wait with your deceased loved one in the room. I sat with her for a while in tears. My dad then took a turn sitting with her. He had arrived home a few minutes after her passing but I think he was thankful he had missed it but was feeling guilty i had been alone for it. So he sat with her. Grandma kept asking what was happening as she didn't understand any of it having dementia. She kept asking for Carol and wanting to know where she was. 2 hours later the funeral home arrives. They ask us what we wanted her to wear. We gave her something then realized later on that we had given them pants and with her broken leg she had been wearing nightgowns. They probably removed her cast to put the pants on. She didn't need it anymore. They took her away leaving behind a simple red rose we had professionally dried and put in a frame with her picture in it. That was my mom's passing. It was very peaceful and in her case very fast.

My heart goes out to you. I was a natural caregiver to my 89-year-old mother, who had dementia, and had been very ill as a child. She refused all medical assistance based on her religion, until she passed peacefully at home last September. There were few, if any, answers on the internet for a similar situation with my Mom. My own experience is this: Last January, my mother did just what your father is doing, and I thought that the end was near. I didn't call emergency or hospice or anyone, I just spent time with her, held her, listened to music with her, all the while encouraging her to drink liquids, and readying myself for what I thought would be a quick passing. But the next morning after sleeping for a full 24-hours, she was up and asking for her favorite grapefruit juice. I was incredulous! As I look back, I see it was a 'dress rehearsal' for what was to come nine months later. In August, about a month before she died, she couldn't really eat anything as she had forgotten how to chew and swallow and would cough and inhale. I tried all sorts of things to get her to eat, the best was to keep her chin down while swallowing, and for a few days she lived on smoothies with a spoon and homemade lobster bisque that I bought from the local specialty market. But then, she refused that and choked horribly on liquids, so I got some of those little containers of water that are 'honey thick' and some special powder that you mix with soup and such to thicken it, and she had some of that. But eventually, she didn't want anything – not even water. The nurse I was in contact with said that at that point (when they refuse water or VSED), it would be about two weeks, so after a good cry, I put on my big-girl-panties and resolved that my only job was to give my mother a good passing. I got a air mattress from WalMart for $25 and diligently turned her this way and that to prevent sores. I moistened her mouth and continued to offer her water by a straw with my finger on the end, which she would refuse, but it took a while for it to sink in that she was aware of what was going on. I played beautiful music on my laptop, including hymns that she loved. I had people talk on the phone to her when she was occasionally awake. I held her as we looked at the photos I had scanned, and made comments just as if she was totally aware. I looked into her eyes and told her how much I loved her, and that although I would miss her like crazy, that I would be fine. I know she heard me. While she slept, I searched the internet for someone to tell me what it would be like, but there was not much out there that I found helpful in my situation - except that death is often exactly what a person expects it to be. So my 'duty' was to eliminate fear - both hers and mine. On the last day, there were many lovely signs that I truly believe were messages, or at least things that seemed to bring me comfort - like a ladybug that I found on my arm in the morning, and a clock-radio that hadn't worked starting up and playing "The New World Symphony." Well, that's for another discussion.... but on that last day, the last few hours, first Mom sounded like a locomotive. That was scary, but the nurse said it was normal. I rearranged her on the bed, fixed her covers, and the breathing became peaceful again. I laid on the bed beside her and we slept for a few hours. When I woke up, she was still breathing. I went into the bathroom wondering if she would 'leave' when I was out of the room, as my father had done, but when I returned, I saw the rise and fall of her chest. My sister called and Mom heard her voice. I put Mom's beloved Beethoven's Pastoral Symphony on, and I just knew it would be the last time she would hear it.Then went to fluff up her pillow, and as I held her, she took two short quick breaths and went limp. I looked at her because I couldn't believe she had departed - I wasn't sure because she seemed to exhale a few times. I held her and prayed and told her I loved her, and I didn't even cry because I knew that as far as human death is concerned, she had a peaceful and painless one. This is the first time I've written this in detail, and I hope it has helped rather than distressed readers.

That was very brave of you to go through all of that again as you wrote it, as well as the first time. I am very sorry for your loss.

You126, I'm sorry your dad is in such ill health. Does he have Home Health? Usually after a hospital stay, they get Home Health for a while. If so, ask them to advise you regarding Hospice care. They can recommend someone but a doctor will have to prescribe it. It can be any doctor he has seen recently. They will do an evaluation. If the first one doesn't "click" with you, call another.