Dad with Lewy Body Dementia seems to be declining since broken hip and surgery.

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Yesterday we visited Dad around lunchtime. He had been moved to a chair and had been able to sit for a few hours instead of lying in bed. We decided to let him have lunch in the dining room so he'd be among other people. He didn't say much as we sat with him. When the meal came he ate only about ten bites and had a lot of trouble swallowing, coughing after each bite. He then refused to eat anymore, turning his face away from the spoon (pureed food). He barely looked at us, but constantly stared into a corner of the room above the table. When I asked what he saw he said there was fog up there or that it was snowing. A while later, after he returned to his bed, he lay a while, again without looking at either Mom or me. He started talking about going back to the town they lived in when they were married. It finally became clear that he wanted to know where the man with the van was who was supposed to pick them up from a small town down the road and take them home. He also kept staring at a spot up above and was asking about a man, who he was and what he was doing. There was no one there.

Mom was silently crying and holding his hand. She kept asking him to turn his eyes and look at her so he'd know she was there. Once he asked "Where?" He would turn his eyes at times but still didn't seem to see us. I honestly believe he couldn't see us. Is that possible? He also asked where I was a couple of times. Then he asked for my Mom and began calling her name, something he did often while still at home. He called and called her name, would stop when she told him she was there holding his hand, then would start up again. He finally fell asleep.

Today around 9:30 AM the nurse at the NH called and said that Daddy seemed to be making another "decline". He only ate a couple bites of his breakfast and was just staring straight ahead. She said that his skin tone was also worsening. She had already called the hospice nurse. She also did not give Daddy his morning meds as she felt he might choke on them (powdered in pudding). We decided to try and get him up at lunch time to see if he "perks up". I don't think he will. She'll call me to let me know how he reacts. We've had sleet and snow all morning but it looks like its coming to an end. My husband (a Yankee who's used to the snow and ice!) is going to drive us to the NH in the early afternoon.

I know that the symptoms Daddy's showing indicate that the end is probably coming soon. I think the nurse feels that way also, she said it could be two days or two weeks. I don't know whether to be sad or happy. The last two weeks since Daddy broke his hip and had surgery have taken a toll on my Mom. She had just come to terms with him being in the NH. I think at this point that Dad's passing will be a relief for both of them. I know that sounds terrible.

Depending on what we find when we visit this afternoon we will probably decide to bring Daddy home and just have him on hospice services. They do such a wonderful job with him and I know Mom wants him to be at home when the time comes.

Please keep my Dad in your prayers.

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Thanks so much, Veronica. Husband and I will be driving Mom over to the NH in the morning as soon as the roads are passable again. She's going to stay as long as she wants and sit with Dad. I'll either get a time to pick her up or she can call me. After sitting five days and nights in the hospital with him, I don't want her to overdo and wear herself out by staying round the clock.

My father-in-law passed away several years ago suffering from B-Cell Lymphoma. He was in the hospital for about a week and a half as the dying process took place (still hospital care in a small town). I remember the staff giving him the sub-lingual morphine. At least one family member was in the room from early morning to late evening, but he passed at about 4 AM with no family there. It happens. He knew he was loved. And he had visits from everyone before his death so the family was okay with that. Mom often tells stories of her childhood when people passed at home and everyone was around them for a long time afterward, so death isn't new for her. It's just so hard when it's your spouse.

Thanks again for your prayers.
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I think you made the right decision about your father's surgery at least he had a good chance of being mobile whereas staying in bed with a fractured hip would have led to all kinds of unpleasant complications.
I think Dad will quietly slip into unconsciousness and pass peacefully. He is being kept comfortable and the nurses seem to be taking excellent care. if he does become agitated sedatives can easily be given rectally. Pain medication can also be given in the form of liquid morphine which is a very small volume of liquid that can be dripped into the mouth even if the patient can no longer swallow. This is of course going to be very hard on your mother as it has happened so suddenly. It is important that she be told the truth and not given false hope so she can say her goodbyes. Try and give her some time alone with your Dad,. even if he is unconscious he probably can hear her and just being close will be a comfort for both of them. sometimes, in fact quite frequently a dying person will rouse in the hours before death and it may seem as though they are getting better. If this happens enjoy the time and let him do whatever he wants no pressure on anyone. Some people want to be alone when they die so don't be upset if you have just left the bedside when he passes. He wanted it that way. Other times patients will wait till a certain loved one is there or a new baby is born and then quietly slip away. In many ways death is as wonderous as birth and it is a privilege to be part of it. May God bless you and make yours Dad's passing peaceful and give you mother strength.
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Thank you both so much for your comments, Eyerishlass and Veronica91.

I've been considering what to do if we find out definitively that Daddy is nearing the end, and I've come up with the same scenario that both of you have brought up. If and when the time comes I think my Mom will understand that Dad needs to stay at the nursing home, especially since he already knows and is comfortable with the staff there. I don't think she realizes that she'd probably be facing more of a burden work-wise than she did prior to his move to the nursing home. And I don't think it would be good either physically or mentally to move Dad in the condition he's in. Dad was already admitted to hospice services this past November so they will be there for him regardless.

Eyerishlass -- The decision on whether to have surgery or not IS a difficult decision to have to make. In Dad's case it was either have the surgery, which ended up being a ball and socket replacement because of the way the hip was broken, or not have the surgery, which would have meant he'd have been bed-bound the rest of his life. He was a good candidate for surgery, and we knew the risks of the anesthesia, but we were between a rock and a hard place as they say -- give him a chance of some quality of life or have no quality of life at all. One of the staff at the nursing home told me today that when he started his nursing career a broken hip was basically a death sentence for an elderly person, especially one with dementia, and that most never left the hospital. That's changed today, but nothing is guaranteed. I personally am not waiting for his death, and thank you for your wonderful advice. I know the time will come and I've been prepared for it for a while. If he passes I'm ready for it, if he bounces back I'm ready for it. I just worry about my Mom. She's been losing him for four years, but this sudden downturn has really affected her. She says she doesn't understand how it could happen so fast, even through she's read several good books about LBD and Alzheimer's and has heard the stories of other folks. It just seems that there are so many "little deaths" with this disease.

We visited this afternoon for about three hours. The nurse told me Dad didn't eat any lunch. I got him some pudding while we were there and he ate about one spoonful total and had a few sips of water, but he was still coughing and having difficulty swallowing. He also slept 98% of the time.

Veronica91 -- thank you for your advice also. Dad's skin did seem more sallow when we visited today. And even through his morning meds were withheld, which included his Seroquel, he was not agitated at all. I ALSO believe he's been seeing spiritual visitors. So many people don't believe this is possible, but it is.

Thanks for all of your sage advice and prayers.
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It is certainly possible to bring your Dad home to die but do you and you mom have sufficient experience to provide the nursing care a dying man needs. one of you will have to be with him all the time and neither will sleep much. Are you physically strong enough to move him around. One or both of you can spend as much time with him in the NH as you want. they may give you a cot in his room and provide meals. the fact that the nurse with held his meds and said his skin color is changing is a sure indication that she thinks death is close. Of course he may rally again. I also think he is seeing spiritual visitors which is also a sign that death is near. God bless you all
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I'm so sorry that you and your mom are going through this. I know how painful, heartbreaking, and stressful it is.

Lewy Body dementia aside, when an elderly person breaks a hip the first thing that has to be done is to decide whether to have surgery to correct it. Elderly people don't do well with anesthesia. At all. But if it's decided that there will be no surgery then that person will spend the rest of their days in bed. It's a terrible decision to have to make, neither scenario is good.

Your sweet father may not have ever bounced back from the surgery and with the LBD it's difficult to tell which is the dementia and which is the after effects of the anesthesia. Probably both.

Hospice sounds like a good idea. It's perfect for this type of situation. No one will tell you how long your dad has but hospice will give you comprehensive information on death and dying and signs and symptoms.

I've been where you are and my one piece of advice is to not wait for his death. It's exhausting and stressful and a trap. When we are waiting for someone to die we are reluctant to go out to the store. We don't want to participate in our lives. We're absent from work. We neglect our families. And it could go on longer than you think and being in that limbo is hell on Earth. Do what you're doing now. Spend time with your dad. Tell him you love him. Talk to him. Be with him. But live your life as well. There's a difference between anticipating someone's death and waiting for it. Anticipate when you need to but don't sit around waiting.

You and your family are in my prayers. I've been through this with both of my parents and I also work hospice cases. What I've shared with you are some things that I've learned over the years.
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