Lloyd has been final stages for quite a while now. There have been things going on that make me wonder how much longer he can hang on. He is still ambulatory, but that is the Irish fight still in him. He has always been a fighter. He is more incontinent, although I have been taking him to the bathroom for a couple years now. He seems more jumpy lately...doesn't want to sit still at all. He is not really interested in eating and sometimes has to be told to chew and swallow. He has been confrontational for almost a week now and has been knocking things off the walls and furniture. He gets up later and later every day and wants me to stay with him. Well, actually he wants me with him all the time. His breathing has been shallow and labored at times. There is a ghost in our house. His name is Bill and he died in our bedroom. When we bought this house and started changing things, he showed up. He would make noises in the attic, turn lights off and on, and make the roll-up blinds fly up in our/his bedroom. We replaced those with mini-blinds. He always favored our grandson Alex who was 3 when we came here. I think Alex was more receptive to him. If Alex was home sick, Bill was with him and Alex would have conversations with him. After we added the third floor in 2010, Bill was dormant. It was the joke that when the roof was torn off, Bill flew away. Now that Lloyd is this bad, Bill is back. Lloyd was the first to see Bill. Now Bill has been making noises all over the house, more so during the day when Alex is at school and Maria is at work. If I talk to him, he will calm down or stop. Now I know that there are those of you who do not believe in ghosts. I didn't either. I realize that some of your loved ones were at home until the end. I guess I just want to know what to look for. I have every intention of keeping Lloyd here with me until he is gone. I have been telling him it is ok, but I cannot bring myself yet to tell him it is ok to go and that I will be alright. Some part of me wants him to stay while another part of me wants him to be at peace. It was the same with my mom and when I was able to tell her, she was gone in a few hours.
I'm not a nurse or any type of medical professional, however could you have your doctor ask Hospice to come and evaluate your dh? It is unbelievable how strong the human body is and how hard it is to die. My dh seemed to have TIA's during the last couple of weeks. He was never incontinent. The one thing I noticed that I haven't seen mentioned on here is the change in my dh's skin. I could see his arms turning a different color. It was like he had very tiny dots on his arms. When I mentioned it to the hospice nurse, she said she didn't see anything.
Do you take his blood pressure and has he lost weight? I kept records of these things for weeks and I could also see a change in his blood pressure. It would go really high...then really low and he kept losing weight. And...it seemed like all he wanted to do was sleep. Of course, remember....everyone is different.
Lloyd was twitching this morning, nothing like the myoclonus he used to have. Lloyd's skin is ashy and the skin has changed on his hands and arms. I attributed that to his not really using his hands or arms anymore. The last time he was weighed, he was 119#. He used to weigh 155, but that has been a while...maybe 2 years. The lowest he has ever gone is 115. His appetite is pretty much gone. He seems to tire more easily which means he paces and power naps all day long. I can't even take him in the shower without him lying down after for a bit. He comprehends less than he ever has and has not been able to carry on a conversation for almost 2 years so I can't ask him anything. I will call the doctor today and ask him to get Hospice to do an evaluation, but that is all I need from them at this time. I will have to check his BP, but it was always lower than what was considered normal. Can't find the BP cuff. Of course, we had to get it for Maria when she was sick so I will have to wait for her to get home. Thanks.
If you get approved for Hospice, they can offer you lots of help. You really might want to think about that. They will send someone to shower him 3 times a week. They will provide you with supplies you need. And, the most important thing I liked was I knew I had someone to call 24/7 if I didn't know how to handle something or I just needed to ask them a question. You might change your mind if they think he qualifies and take whatever they have to offer. It is such a comfort and a help. I could have not kept my dh at home until the end if it hadn't been for hospice. He resisted a little bit in the beginning, but in a matter of weeks he loved the gals that came to care for him. He would joke with them and they were so kind to him.
I am not really having a problem showering him. I just get in with him. I would not have been able to do the 24/7 if my youngest daughter hadn't moved back home with her 2 boys. Sebastian is 19 and left for the Navy in May and Alex is 18 and graduates high school this year and will be going to college after. Sebastian was such a help when he was still here. He could pick his Grandpa up and carry him to bed if it was needed. I guess I will check out Hospice and see what they have.
Hospice has end of life signs listed on their web site.One of the signs I seen is of all things the hic-ups...often.I never knew that but I know my Mom had them before she passed.
Ann, you just scared the "living H..." out of me! My husband just started having hiccups. It happens at dinnertime almost every night. I will have to check further on this scary development.
My Mom's hiccups came at the very end of life - within the last few days, when she was bedridden and not eating or drinking. It was combined with her irregular/shallow breathing patterns.
Loved your ghost story, Maybe Bill came back and is hanging around to help lead Lloyd to the other side . . . ? Does Alex remeber Bill? or can he still talk to him?
If he's confrontational, you may find yourself getting slugged in the shower. DO establish a connection with a Hospice. The doctor has to do it, though some hospice might come interview you and if you like them then ask your doctor to order it. That's what I did. The first one we had, through a visiting nurse service we'd had before, was not really interested in doing dementia hospice. The next one was. It's a very different approach since they can be pretty strong or heavy even if on hospice. But you have someone you can call in an emergency who will know him, will arrange to have ativan or seroquel if you need it, who checks on him at home from time to time, and who is paid for by medicare. In fact,you may have heard that medicare will agree to fund hospice longer than a year if necessary if it's dementia you're dealing with. They can also order medical equipment as needed.
M-mman, Bill actually showed himself to Lloyd first many years ago. I'm not sure how instrumental Bill will be in helping Lloyd to the other side. Oh, Alex remembers Bill, but I don't think he talks to him anymore. But Bill did scare the hell out of one of the boys' friends who slept on the couch last week. Bill actually stood in the doorway to the living room. Stacee saw him, stood up and he was gone. Then Stacee heard footsteps in the kitchen, went to check, no one there, heard footsteps in the living room, went back in, and no one there either. About 10 years ago, one of my daughters friends was staying in our basement and was sitting at the vanity and looked in the mirror and there he was. Needless to say, she was gone! Briegill, if I get slugged in the shower, he will need a hospital not Hospice. Just kidding. I just do not tolerate getting hit by a man. Can't happen. Don't care why. I will call Hospice and see what exactly Medicare will cover. I'm not too keen on ativan or seroquel, but if he needs it..... He did have to have a couple doses of ativan when he went to the ER because of seizures. It was only a total of 4 mg. I try to steer clear of sedatives and he only gets 50mg of Trazadone (half a pill). I actually gave him a fourth for a while. I just don't want medication to impair him any further. I'd like to get something around the toilet for him to hang onto. It is absolutely amazing how long that man's hiney can hover over that commode without sitting down!
Well, I went to the Fisher/Alz site. I was just curious where we stood on that chart. I guess the doctor was being kind when he said final stages, but Lloyd is definitely stage 7. I guess he is still getting around because I am so careful what medications he takes, but it is with more difficulty lately.