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 I Think Dad is Declining After Breaking Hip 
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Joined: Mon Sep 09, 2013 9:16 pm
Posts: 29
Location: Texas, USA
Post I Think Dad is Declining After Breaking Hip
Yesterday we visited around lunchtime. Dad 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. 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.

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 near. 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.


Sun Feb 02, 2014 1:28 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3432
Location: Vermont
Post Re: I Think Dad is Declining After Breaking Hip
Hi - I'm sorry to hear about your dad's decline, but after what he's just been through it is not at all surprising. It is possible that he could rally some for a while, so don't be surprised if he perks up a bit and the LBD symptoms lessen (like hallucinations, etc.). The fact that he is already on hospice, as you know, means that he was nearing the end, and that was before he broke his hip. So, hang in there, so glad you have him on hospice. It is a balancing act of knowing that one of these days he will no longer be suffering this horrible disease, you won't have to watch him suffer anymore, and then knowing that when the end comes, it is so final. Don't feel guilty about anything. I used to pray every day for months that my dad's suffering would end, and knowing what that meant. Empathic people don't want to see their LOs or anyone else suffer.

What do the hospice folks say about moving him home? I wanted to try to move my dad back home when he was obviously in his last weeks, but I was told that the move might do him in. He was so fragile, in constant pain if he didn't have morphine every few hours, and by then he really loved some of his CGs who were with him night and day. Moving him back home would have also meant a whole new fleet of hospice and other CGs and that would have been a big transition for him. Too big, we felt. So, he stayed at the ALF where he'd been for about 18 months. That would be an important conversation to have with hospice and other folks taking care of him.

Big hugs, I know how hard this end part is. It's so hard to lose a parent, even one who is suffering from LBD and you've been grieving their loss for a while already, Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Sun Feb 02, 2014 2:24 pm
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Joined: Mon Sep 09, 2013 9:16 pm
Posts: 29
Location: Texas, USA
Post Re: I Think Dad is Declining After Breaking Hip
Thanks, Lynn, for all of your kind words.

We haven't actually spoken with hospice yet about a possible move, but I have the same thoughts you mentioned as to whether it would be better for him to be in a place where he's comfortable, or put him through a move that might do more harm than good. The hospice nurse was called by the nursing home so it's possible we might see her when we head over there shortly. Whatever we do decide we'll discuss it thoroughly with all of the medical staff. I know Mom would give anything to have him at home when the end does come, but I also believe his own comfort outweighs that. He is in such a fragile state -- the fall, broken hip and surgery, extremely fragile skin that breaks so easily, bed sores, ankle sores, bad disk in his back. Not to mention the LBD. He was already having some slight swallowing problems before he broke the hip and I'm certain the anesthetic, tubes, etc. worsened that. He's down to 154 pounds; last year at this exact same time he weighed 186 pounds.

Dad had actually perked up for the first few days he was out of the hospital, eating well, sleeping well. His hallucinations haven't been that bad recently, but almost the moment he was lucid after surgery he was back to his delusions about going to work, etc. I guess the LBD doesn't stop for anything!

I don't really feel guilty about how we've handled Daddy and his illness. My Mom does feel guilt, though, and it will take some time for her to get over it. She said that she hopes Dad knows that she DID try to take care of him as best she could, and hopes he forgives her for the years he spent "driving her crazy" because she didn't understand what was happening to him and didn't realize anything was wrong with him. I try to reassure her, and I'm sure she slowly cope, but I know it's hard on her.

Thanks again for your hugs, and I'll let you know what happens.


Sun Feb 02, 2014 2:49 pm
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Joined: Mon Nov 25, 2013 7:33 pm
Posts: 47
Location: Pennsylvania
Post Re: I Think Dad is Declining After Breaking Hip
I will keep your dad and you and your mom in my prayers. I am sorry for the pain you are all experiencing. Hospice providers are wonderful resources and can offer great advice. Bringing your dad home with hospice is doable, but there are some considerations. When someone comes home with hospice the team professionals visit the home, but the majority of care is provided by the family. This includes providing medications and physical care. This can be overwhelming if you are not prepared for meeting these needs. In addition to home hospice, which is covered by Medicare, we also had a 24 hour live in nurses aide in our home. She was like a doula, and even though I am a nurse of 35 years, this person was invaluable to me and my family. I wish you the best as you consider your options, make your decision and continue your support of your dad on this difficult journey. And, your mom needs to be kind to herself. She loves your dad, and he knows that!

_________________
Marian, daughter of mom [82] diagnosed with LBD November 2013 after 7 years of a textbook course of this disease. Passed on January 26, 2014 following a week of home hospice care.


Sun Feb 02, 2014 3:44 pm
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Joined: Mon Sep 09, 2013 9:16 pm
Posts: 29
Location: Texas, USA
Post Re: I Think Dad is Declining After Breaking Hip
Thanks, md, for your kind words and your prayers. I'm now quite certain that, if and when the time comes, we'll keep Dad at the nursing home. Between the NH staff and the hospice folks he's been well cared for and loved, and I know that will continue.

We visited for about three hours this afternoon. Dad slept about 98% of the time. The nurse told us that he refused to eat anything at lunch, but did have some liquids. I got a cup of pudding from one of the nurses (he loves sweets) but he ate what amounted to about one bite, if that. He did have several sips of water. He continues to choke and cough when he swallows anything, and for a while afterward. Even though he didn't have his meds, which included the Seroquel, he wasn't agitated at all.

This might be an odd question, but does anyone know if sight diminishes as the dying process starts? Several times yesterday, and once today, when Dad asked for Mom or myself and we told him we were there (Mom was holding his hand) he asked "Where"? Mom asked him, "Here, don't you see me?" and he said no. He also seemed to have a hard time moving his eyes. Is this a normal occurrence?

Again, thanks for your thoughts, advice and prayers.


Sun Feb 02, 2014 9:19 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3432
Location: Vermont
Post Re: I Think Dad is Declining After Breaking Hip
Eyesight and hearing can both come and go with LBD, and not necessarily at the end of life. So it may just be that he has another LBD symptom which may not signal anything else. What do the hospice nurse or other medical personnel say? It is hard to go through this process. All the best. Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Sun Feb 02, 2014 9:46 pm
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Joined: Thu Apr 21, 2011 9:07 pm
Posts: 247
Post Re: I Think Dad is Declining After Breaking Hip
I am so sorry to hear that - you and your mother will be in my thoughts. As Quakers say, I will hold you in the Light during this difficult time.
I am glad, though, that you can be together and be with your dad.

_________________
Laurel - mother (97) diagnosed April, 2011, with LBD; died May, 2014.


Mon Feb 03, 2014 1:36 am
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