View unanswered posts | View active topics It is currently Sat Apr 19, 2014 4:31 pm



Reply to topic  [ 5 posts ] 
 Rough week with my Daddy 
Author Message

Joined: Sat Nov 02, 2013 8:44 pm
Posts: 6
Post Rough week with my Daddy
We have had a very tough time this past week with Daddy. It started Saturday when he fell at the nursing home and cut his head near the crown. Had to be sent to ER at our local hospital for staples. He was awake although fought us quite a bit when staples were put in. He just doesn't understand why we are hurting him :cry: . Sunday and Monday were quite uneventful expect he is not eating very well and he no longer walks very much. He usually just sits in his recliner and sleeps. Tuesday night he fell again and tore the skin on his left arm. Momma called me all upset because she thinks the nursing home is partly blaming her. The nurse told her when she called to report the fall that "we need to make sure that the bed alarm is on him." Momma thinks she was including her in the "we" and explained to them that she tells them every time she is leaving and they need to fix the alarm. It has been stepped on and she cannot get the clasp to hook good so she leaves it up to them. It really doesn't do any good since he unclasps it himself when he is trying to get up. It is amazing the things they can do even when they are in the condition he is in. I went over and stayed with him for about an hour and just watched him sleep. Yesterday afternoon the nursing home called to ask me could they send him for a CT scan of his head. He had been in a deep sleep since I had left him the night before and they were concerned it may have been due to the fall from Saturday night. I asked them what would be the point in doing a CT scan because even if something was found, there is not a lot we could do about it. He cannot be put to sleep again, he is a No CPR, and I have had the paper work in place since Feb. of 2012 that he is a comfort measure status only. They said it would help them to at least understand why he might be sleeping so much. I told them I felt it was the progression of the disease but finally consented to allowing them to send him to the hospital. I was unable to go over there immediately so I sent Momma. She called me after about 30 minutes very upset that the doctor was wanting to do all these tests and possibly admit him. I told her to let me get someone over to the house to take care of my grandson and I would be there as soon as possible. When I arrived I talked to the doctor and it amazes me how they seem to know everything and yet do not know anything when you mention Lewy-body dementia to them. Momma would not let him do anything to daddy until I arrived and so he wanted to know exactly what I expected him to do. He proceeded to tell me how expensive CT scans were, how costly to insurance, how it runs up other people's insurance, etc... By this time I am one aggravated and tired daughter. I told him that I was not the reason Daddy was here in the first place. I explained to him the concerns of the nursing home and told him why they sent him over. I also proceeded to tell him that Daddy's care and treatment are more for comfort measures than for life sustaining ones. Every time I give this speech I can't help but feel that people just look at me like I am not going to do anything to help him but just let him die when that is not the case at all. If he has an infection or is dehydrated of course I want him treated. In my mind that is a comfort measure and a treatment that is needed. If they find bleeding on his brain from the CT then it would be transfer to another hospital, putting him to sleep, boring a hole in his head and draining the blood and no that is not something I am agreeable to. I finally made the doctor understand these things (I think) and told him I agreed with him completely about ordering the CT scan because even if he found something, they chances were very great that we would do nothing about it. He did end up ordering the scan because he felt the nursing home would continue playing "cat and mouse" (his words) until the scan was done and he hated for Daddy to continually be sent back and forth until it was. He felt it was more infection related although I told him I thought it was just the course of Daddy's disease. He then told me that dementia did not cause a person to sleep that deeply for that long of a period. I wanted so bad to ask him if he had even researched this disease because that is one of its unique traits especially getting closer to end of life but I was to tired and irritated to even proceed with that discussion. Surprise, Surprise all tests came back clear and negative. We went back to the nursing home and Daddy slept all night. I just called Momma to check on him a few minutes ago and he is up in his wheelchair and sitting at the table waiting to eat. He has already drank a glass of tea and a glass of water and is waiting on his food. He is pulling at his clothes and trying to "repair" everything which has become his routine when he is lucid. I just wish people would consider how much we have researched this disease to the point of exhaustion because our loved ones are the ones with it and actually think we might know what we are talking about :evil: So sorry for the long vent but I just needed to talk to people who know what it is like!

_________________
Athalia. Father diagnosed with dementia with probable Lewy-Body in Feb. 2012.


Thu Dec 12, 2013 1:50 pm
Profile

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3113
Location: Vermont
Post Re: Rough week with my Daddy
Do you have literature from the LBDA that you can take with you and hand out to medical professionals who know little or nothing about this disease so they can understand his needs better? I know dozens of people who've had LBD or have LOs with LBD and sleeping a lot, especially towards the end of life is definitely what happens.

Has your LO been evaluated by hospice? It sounds like that might be appropriate at this point, and perhaps you can get support with not allowing expensive testing and treatment that is unnecessary and might prolong suffering?

I wouldn't allow life-prolonging measures for my test nor testing, nor being sent to the ER for minor falls. Some people didn't agree with that but I knew that is what my dad wanted and that's why he'd completed the necessary legal documents when he was of sound mind. Why anyone would want to prolong the suffering of someone with LBD is completely beyond my ability to comprehend. Quality of life is much more important than quantity to many of us. So, don't feel like you are alone in this - you are just having to fight a medical system whose philosophy is to "save" lives, even at the end of life that has no quality. Big hugs, 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.


Thu Dec 12, 2013 10:26 pm
Profile

Joined: Thu Apr 21, 2011 9:07 pm
Posts: 235
Post Re: Rough week with my Daddy
My heart goes out to you - but also a warm tribute and pat on the back for being your dad's staunch advocate through this. You are doing so much, as you try both to stick faithfully to your family's considered wishes for comfort care, and to explain his situation carefully to the nurses and doctors. It's exhausting but you sound like you are doing a great job.

I feel very lucky to have an established relationship with almost all my mom's medical caregivers - the head nurse and her deputy and most of the CNA's at the skilled care unit; her primary care doc, a thoughtful and sensitive guy with a lot of geriatric experience; and of course her neurologist, who is also a colleague of mine. Even as good as they are, we sometimes have to work at keeping everyone in communication. And the day-to-day caregivers sometimes want to do more or less than I think is appropriate. My mom has started having a little difficulty swallowing, and a couple of the CNA's were fussing at my dad, who comes over a couple of times a day from assisted living and feeds her grapes and a few Hershey's kisses. They told him it affected her appetite for meals. Had to point out that at this point, she has little appetite anyway, and I'm perfectly happy if she eats grapes and a few chocolates. Moreover, the tender care from my dad is of great comfort to both of them. She's 97, and if she wanted to live on grapes, chocolate and ice cream for however long she lasts, I would be fine with that. I happened to be in a research meeting with her neurologist colleague this morning and he asked about her, and I reported the onset of swallowing problems. He looked grave, and agreed that at this point, whatever she is comfortable eating is what she should eat. So now I have the Higher Authority to cite! On the other hand, I have to remind them to keep her nails very short and filed (they are much better at this than I) because she scratches her face and nose and the scratches are at risk of getting infected. All that said, they also come up with great ideas to help, and I am grateful for their kindness and patience.

So you just keep going, helping as best you can, and help the caregivers and doctors to understand where he is, and where he is going, and how you hope to help him best. As Lynn says, hospice may help to back you up, as might some of the literature on LBD. -
Laurel

_________________
Laurel - mother (97) diagnosed April, 2011, with LBD


Fri Dec 13, 2013 1:53 am
Profile

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3113
Location: Vermont
Post Re: Rough week with my Daddy
Laurel - that is so sweet that your dad is able to get to your mom and feed her grapes and Hershey kisses! I felt the same way about my dad's diet towards the end - I figured if it was a few calories that he really enjoyed, and he didn't want to eat anything else, so what? I think maybe the only thing he could taste in his final months was sweets, and if that's what he wanted to eat, fine. I didn't want him to be denied those few tiny pleasures. Some of his CGs would make him grilled cheese sandwiches and tomato soup late at night and he'd eat a few bites of that, and he still seemed to get some pleasure out of eating it. I was so grateful for their extra care of him. 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.


Fri Dec 13, 2013 8:31 am
Profile

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3176
Location: WA
Post Re: Rough week with my Daddy
It's always a difficult position to be in. Having caved so many times to doctors' dictates, I finally stiffened my spine on the matter. On the morning of November 2, I had my husband sent to the hospital from the SNF, where he had been for nearly three years, because his belly was distended and hard as a rock [from a paralytic ileus, as it turned out]. The ER doc wanted to run every test under the sun. I did agree to a CT scan on his abdomen but vetoed the cardiac workup, etc., which the symptoms simply did not indicate. After he was admitted for two days, the doctor who treated him asked me how I felt about Hospice, as there was nothing they could do other than keep him comfortable, as his systems were 'shutting down'. I will be eternally grateful for this physician as, on his advice and with his help, I was able to bring my husband home on Hospice where he died peacefully less than a week later.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Fri Dec 13, 2013 1:54 pm
Profile
Display posts from previous:  Sort by  
Reply to topic   [ 5 posts ] 

You cannot post new topics in this forum
You cannot reply to topics in this forum
You cannot edit your posts in this forum
You cannot delete your posts in this forum
You cannot post attachments in this forum

Search for:
Jump to:  
Powered by phpBB © 2000, 2002, 2005, 2007 phpBB Group.
Designed by STSoftware for PTF.
Localized by MaĆ«l Soucaze © 2010 phpBB.fr