View unanswered posts | View active topics It is currently Wed Nov 26, 2014 2:32 pm



Reply to topic  [ 31 posts ]  Go to page 1, 2, 3  Next
 My Dad's rapid decline. 
Author Message

Joined: Thu Jun 10, 2010 11:18 pm
Posts: 9
Post My Dad's rapid decline.
Hi everyone:
I've been reading this board now for months, feeling lucky that my Dad was still living at home, able to talk, feed himself, walk, still have coherent conversations, etc...that totally changed two weeks ago. He woke up one morning and told my mom that he simply could not get out of bed. Somehow, she managed to get him up and dressed, but he barely ate or drank all day and seemed to be slurring his words. She took him to his doctor who had him immediately sent to the ER, thinking perhaps he had a stroke. While in the hospital being observed, he switched from coherent and answering all the doctor's questions correctly to almost catatonic. He was mostly sleeping or having disturbing hallucinations, swinging his arms and yelling. Awful as you all know. No sign of stroke or anything else, just that damn Lewy finally really taking over...

Now my Dad, my once vibrant, athletic, and outgoing Dad is in an assisted-living facility with hospice care. He is on a low dose of ativan to help control his almost violent actions. Without it, they are unable to clean him or change him, he swings his arms and kicks and he's still strong. (at least there's that!) I am very concerned because all he seems to do now is sleep. He is barely eating and some days all he has is an Ensure. I am glad he seems calm and not being tormented by scary hallucinations like he was in the hospital, but it's like he's gone...when he opens his eyes he seems confused and his voice is very quiet and very rarely are any words understandable. He did say, when I asked "How are you?", "I'm fine." That's basically all I've been able to understand him say in two weeks. It's devastating. His grandchildren (my kids) miss him, my Mom misses him, and it's just awful to see him this way. He's only 73 and always young for his age. He was a very successful businessman and only retired two years ago, almost right before his diagnosis. Aricept and Namenda helped for awhile, but his doctor has since stopped both. They hadn't been working all that great recently, but he still always knew us, etc...This rapid decline has been horrific.

I guess I don't really have a question per se, but I do like to read everyone's story. So similar to what we are going through and so tragic. I am only 37 and I thought I had so many good years left with both of my parents. Now I worry about my Dad and also my Mom, she seems so frail all of a sudden, too. Thank you everyone who shares their experiences, it really does help!

Hoping for the best, but expecting the worst.
Jill


Wed Jun 23, 2010 5:27 pm
Profile

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post 
About a year and a half ago, my husband had such a similar sudden decline that he was near death. Unable to get out of bed, talk or eat. But it was due to the Risperdal [Risperidone] that he had been taking. I did not know about this forum and it was not until I found some British medical journal articles on the internet that alerted me to the dangers of Risperdal in PD/LBD that I was able to connect the dots between it and neuroleptic malignant syndrome [NMS]. Anyway, he recovered to baseline--which does not always happen--when it was discontinued.

Is your father taking any kind of neuroleptic drugs?

_________________
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.


Wed Jun 23, 2010 7:27 pm
Profile

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3432
Location: Vermont
Post 
Hi Jill - so sorry for what you're going through. I know how hard it is when they have these sudden, precipitous declines. My dad did come back a little after his last summer, but then he just kept getting worse after he got out of rehab. His body is almost non-functional unless he's really angry. Then his left arm, which usually just hangs, has enough strength to smash his hand into the wall. His hands are constantly bruised and often split open. I hate what he is going through. Interesting, he always recognizes his family and friends and some of his CGs.
It's amazing that your dad has met Hospice criteria. I've been trying to get Hospice for 3 months and my dad hasn't "passed the test" yet, despite his deplorable condition. Are you happy that you have Hospice services? Lynn


Wed Jun 23, 2010 7:58 pm
Profile

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post 
Jill,

Sorry to hear about this. I would certainly review any medications. The sudden onset of extreme rigidity (or immobility) is often a sign of medication or infection.

This has been known to happen before in LBD. I'm sorry to say that often the patient dies, but sometimes they revert back to their old selves.

I suggest you make arrangements for your father's brain donation, if that's of interest to the family.

It sounds like you are doing the best you can.

Robin


Wed Jun 23, 2010 8:48 pm
Profile

Joined: Thu Jun 10, 2010 11:18 pm
Posts: 9
Post 
Medications had not changed at all before his decline...his doctor took him off Aricept and Namenda when he was in the hospital. He wasn't eating or drinking at all at first. Now, very little of either. He's still on his blood pressure medication and very low dose of ativan. It's sad, but easier to see him calm than suffering through those horrible hallucinations. Why is it fair that our loved ones spend their last days tormented by hallucinations? My poor Dad seemed like he was fighting or constantly swatting things away that were flying at him. It's something I will never forget, seeing him like that.

Does anyone else have just tons of guilt? I do. I could have called more, visited more, etc...while he was still with it. He had short term memory issues, but his long term memory was still in tact. He could defintely carry on coversations and follow the news, etc...He had grown more quiet but was still "there", if you know what I mean. Now I feel like I am already in mourning. My real Dad is gone. This is some other man that I feel terribly sorry for. Oh, if it could be three weeks ago...I would have my kids over there playing with Grandpa for sure. I am afraid his last memory of me is me yelling at him to drink more water as I was always afraid he was headed towards dehydration.

This board means so much to me. You are all wonderful. Those of you who are caregivers to your loved ones are saints in my book.

Hospice has been absolutely fabulous. I am not sure exactly how one qualifies or doesn't, but I do know they told my Mom that hospice for dementia patients isn't necessarily based on the "end" being near like for other illnesses. Sorry I don't have more info.


Wed Jun 23, 2010 9:58 pm
Profile

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post 
Many (most? all?) caregivers have caregiver guilt. There are probably some articles on the topic posted here.

Many neurologists I know continue Aricept and Namenda until the end of a dementia patient's life because it's hard to tell if these meds are doing any good and they often can be of great benefit.

Not everyone can handle Ativan. But if your father was handling it prior to this incident, then that would be a sign that he can probably handle it now.


Wed Jun 23, 2010 11:14 pm
Profile

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3432
Location: Vermont
Post 
Hi Jill - yes, we probably all have some degree of guilt over whatever. I think women are especially good at the "should haves/could haves" and beating ourselves up over various things, myself included. We have to figure out how to let that go and just keep doing the best we can do. We have so much to balance and none of us is superwoman or superman.
Just remind yourself that you are doing the best you can do given the circumstances and you can't be all things to everyone, and take care of yourself at the same time. There's a lot to fit into our busy lives.
This forum and the chat are good places to vent and get emotional support. We realize through connecting with others how similar our stories are, including how we are feeling about what we are going through. Somehow it eases the burden a little to know that others really DO know what you are going through.
Take care and know you are doing the best you can. Lynn


Thu Jun 24, 2010 8:48 am
Profile

Joined: Thu Jun 10, 2010 11:18 pm
Posts: 9
Post 
Lynn, thank you so much for your kind words. I wish I had been more of a caregiver, but it is/was hard as I have two children under the age of three! My mom did the best she could for my dad at home...it wasn't too bad except at night. She'd help him to the bathroom at least 4x/night. Also, he had a terrible time getting dressed and undressed. He would become very confused. Luckily, he hadn't started to have serious hallucinations or wandering episodes. Now in hospice care, I think he's either always sleeping or hallucinating. Very sad and I appreciate your kindness. I wish you the best.
Jill


Thu Jun 24, 2010 5:23 pm
Profile

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3432
Location: Vermont
Post 
Jill - you have a huge responsibility raising little kids. I guess I've been lucky that my kids are older, one launched and the other almost launched (still in college). No matter what, we feel guilty for what else we think we should be doing. Your mom's done the best she can too, I'm sure. At some point many of us cannot handle the level of care our LOs require, and we need assistance. Many times that means placing them in a facility where they can get the kind of care they need that we can't provide, for whatever reason.
Hang in there. It's hard, no matter what. This is a very debilitating disease with no cure, and we just have to deal with it as best we can. Lynn


Thu Jun 24, 2010 7:29 pm
Profile

Joined: Wed Jun 09, 2010 4:53 pm
Posts: 42
Location: Davis, CA
Post 
Dear Jill,

I am so sorry to hear about your dad's rapid decline. It's so hard and I send you support. My dad is currently in a nursing home, after two falls and a hospitalization. His LBD has gotten much worse in the last month with all of this. My dad was always a poor sleeper, and has hallucinated after every surgery or hospitalization, but usually got better. I think he has been hallucinating constantly for about four years, but mostly keeping quiet about it. I have a lot of guilt that I didn't try to force the issue of his decline with my mother or brother, who is the primary sibling caregiver. My brother is about to take my father and mother into his home. It's so hard for me not to be there, but my life is in another state, and yet I feel guilty about that. I've been out twice in the last month and plan to go again soon.

With young children, I don't know what else you could be doing, and you need to give them attention and love.

Thinking of you,

amanda


Fri Jun 25, 2010 3:31 pm
Profile

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3432
Location: Vermont
Post 
Amanda - even if you did try to "force the issue" earlier, it may not have been very well received. You did and are doing the best you can given the circumstances. I wish I'd put together all the little changes in my dad that have happened over the past few years, and pushed his dr. to try to make a diagnosis. But, then I would have probably been arguing with my dad to move to assisted living or move in with me, and he would have been angry with me. So, I remind myself that I can't change the past and maybe it would have been worse than what it was. My dad had a few extra years in his house and more money to spend on ALF when he HAD to be there, and as you know, that is no small amount!
You are being a good role model for your kids - when they see you helping out with elderly parents that will help develop their sense of empathy & caring. And when they need you to be with them, you'll take care of them. It is hard to balance, especially at first, but hopefully you can get into a routine that makes it less stressful. Living far away is a drag, but that's life and we just have to deal with it. Have a good evening. Lynn


Fri Jun 25, 2010 5:12 pm
Profile

Joined: Thu Jun 10, 2010 11:18 pm
Posts: 9
Post 
Amanda,
Thank you so much for your kind words. I really needed to hear them today. My Dad seems to be barely hanging on these days, drinking Ensure, hallucinating, or sleeping. Awful...and to think three weeks ago, he was walking, talking, eating, etc...albeit none too gracefully, but still!

I am sorry to hear about your Dad as well. You sound like a wonderful, supportive daughter, and I am glad you have your Mom and brother! Hang in there. Let's check in on each other, our stories sound very similar.

Take care and hugs,
Jill


Fri Jun 25, 2010 5:13 pm
Profile

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post 
Amanda, I feel so sad for you, your father and the rest of your family! :( It's unusual to see such a precipitous decline. It's been hard enough living with my husband's slower slide into disability I can only imagine the shock you must be feeling. You will certainly be in my thoughts and prayers.

_________________
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 Jun 25, 2010 5:21 pm
Profile

Joined: Sat Jan 30, 2010 3:53 pm
Posts: 41
Post 
Hi Jill,

I'm so sorry. I know what you mean about feeling guilty. I live far away from my family and my dad and little brother have taken the brunt of my mom's care. My mom is only 55 and I feel guilty about not seeing her more often every day. But I bet your dad and my mom wouldn't want us to feel guilty, they would understand and tell us that we're doing the best we can. Hang in there.


Sun Jun 27, 2010 4:24 pm
Profile

Joined: Thu Jun 10, 2010 11:18 pm
Posts: 9
Post 
Thaks everyone. My Dad is hanging on, but seems like just barely. I hadn't seen him in a few days and I went to see him yesterday. He was as white as a sheet and his face is so sunken in. He had been thin already and now he's skin and bones. Not eating, except for one of those protein drinks here and there and sips of water. I don't know how much longer he can last. I am so upset and it's especially bad at night, when I'm trying to fall asleep. I keep seeing his thin, pale face and his glazed over eyes. It's awful. I know so many of you deal with much much worse, especially you angels that are primary caregivers. I honestly don't even want to go see him. It's too hard, it's not him, it just isn't. The other thing that is so sad is now his mouth is almost always open, but in such a way it looks like he has no teeth. (he does! he has all of his teeth!) It's just the way his lips are almost turning inward. Very disturbing. I am such a wimp. I am so terrified of him dying but I think it would also be such a blessing. I hope he's not in pain. He doesn't seem to be. Mostly he sleeps.

Thanks again everyone for your kind words. They mean more than you can know.


Mon Jun 28, 2010 6:29 pm
Profile
Display posts from previous:  Sort by  
Reply to topic   [ 31 posts ]  Go to page 1, 2, 3  Next

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 Maël Soucaze © 2010 phpBB.fr