View unanswered posts | View active topics It is currently Sun Aug 31, 2014 2:23 am



Reply to topic  [ 18 posts ]  Go to page 1, 2  Next
 Trying to sort out the state of Coy's health 
Author Message

Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Trying to sort out the state of Coy's health
I don’t know exactly what I want to ask, but maybe someone will have some advice or just some encouragement.

Coy has, I think, lost some ground recently. He is still highly functional, but he dozes off more, and seems to be generally less alert. We still have perfectly sensible conversations, but every now and then Lewy joins us and doesn’t make much sense! (Sample. Me: How are you this morning? Coy: Better than yesterday! Me: Oh, I thought you were doing quite well yesterday. Coy: Hot tamale.)

He still eats well. (We went to a Mexican restaurant tonight.) But his appetite seems smaller and he’s lost 7-8 pounds this summer.

More Parkinsonisms seem evident. He asked me if there is anything we could do about drooling. This is new. He hasn’t fallen in a few years, and he has fallen 4 times this summer. For a while he was coughing/choking more when eating, but now it seems to have subsided a bit.

The current annoying symptom is hiccups. He has had them on and off (more on than off) for about 10 days. It tires me out just to hear them – maybe they are a contributing factor to his fatigue. They are very close together, loud, and vigorous. The bed shakes about every 5 seconds! In the past hiccups often accompanied an illness, usually as an early warning. Other than the fatigue and a little more confusion, I’m not seeing other symptoms of an illness emerge.

Yesterday he asked me what it meant that his mouth felt dry and his saliva was frothy. I told him it sounded like rabies to me, and he'd better not bit me. He laughed.

Maybe this is our new normal, or maybe he is coming down with/fighting off some illness.

Sigh. It’s always hard, isn’t it?

_________________
Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Thu Sep 08, 2011 3:25 am
Profile

Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: Trying to sort out the state of Coy's health
Jeanne, I've always felt you and Coy were so fortunate to be able to do things and enjoy life. I've given up trying to figure out this Lewy thing. Frank is much further along than Coy and seems to be loosing ground daily. He does, occasionally, gets the hiccups and they are loud and deep but I don't think anything accompanied them.

I don't know how many times I've said, "This is our new normal". Today my goal is to keep Frank clean, dry and fed. Transfers are becoming a challenge but once I get him to bed or his recliner he stays for hours. I've started to take his meals to the recliner and feed him most of the time.

I hope Coy's decline is temporary and you both continue to enjoy life.

Fondly,
Gerry

_________________
Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.


Thu Sep 08, 2011 6:52 am
Profile

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3339
Location: Vermont
Post Re: Trying to sort out the state of Coy's health
Jeanne - for your own sake, you may want to sleep in another bed or get a Tempurpedic mattress, which does eliminate a lot of motion transfer. I am a very light sleeper and trying to sleep with another person who is twitching wakes me up. Even with my Tempurpedic it's sometimes necessary to move into another room. You need your sleep and to keep up your own health and strength so do what you need to to keep yourself healthy.
Sorry to hear about his decline. 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 Sep 08, 2011 9:26 am
Profile

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Trying to sort out the state of Coy's health
I don't remember which medications Coy is on. It could be that he needs his carbidopa-levodopa increased, which would most surely help his PD symptoms, including the drooling and even hiccups but be prepared for an increase in agitation and possibly delusions and hallucinations.

It's frustrating and puzzling that their secretions can be both so copious and so thick and tenacious at the same time. Derek is currently at a high level of Sinemet and still has drooling, although it was much worse before the medication increase and he at least has some upper body mobility which he would not, otherwise. Always, there are trade-offs. Hope Coy can get back to baseline but Lewy is, of course, a progressive disease. :cry:

_________________
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.


Thu Sep 08, 2011 10:14 am
Profile

Joined: Mon Feb 14, 2011 10:22 pm
Posts: 190
Location: Portland, Or
Post Re: Trying to sort out the state of Coy's health
Jeanne- I can empathize so much with what you're going through. My mom has been having physical ailments, but for the most part has stayed pretty lucid through it all.
She was a little confused yesterday and this is going to sound strange (maybe not to you all), but we were watching Jackie Evanchko(sp?) on Great Performances last night and during one of her songs Mom just "checked out" suddenly and she's still gone. It was so strange because it was during the song " All I ask of you" from Phantom of the Opera, which is one of our favorite songs. I had goosebumps and I looked over at Mom and it looked like she was crying ( I have NEVER seen my mother cry in 56 years!). Since then she's had that blank look and has been trying to "go home". My sister got up with her at 3am and Mom had one shoe on, no socks , and was trying to put her other shoe on but couldn't because it's her bad leg. Chris helped her put both her shoes and socks on and just sat with her til she calmed downed and went back to sleep. (She sleeps in a recliner in the living room). Mom can't put her own shoes and socks on normally. Anyway, she's still confused and it was just so strange to watch her go from Mom to Lewy's in the blink of an eye like that.
It's so hard watching her go through this, and it has to be so much harder when it's your spouse. My heart goes out to all of you spouses who are now in this caregiver role.
I feel like it's kind of expected to have to care for an aging parent, but when it's a spouse it just has to more demanding emotionally, so here's a big hug for you, Jeanne and all the other spouses who are on this journey.
We're off to another doctor appt this morning, whoopee!! :roll:
Ellen

_________________
Ellen 59, caregiver for mom Marion 81,dx LBD Feb 2011


Thu Sep 08, 2011 10:16 am
Profile

Joined: Tue Sep 06, 2011 2:28 pm
Posts: 15
Post Re: Trying to sort out the state of Coy's health
I know meds can be an issue but you might see if baclofen would be an option for hiccups. I am certain that the hiccups contribute to his fatigue, I hope he is doing better!


Thu Sep 08, 2011 8:41 pm
Profile

Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Trying to sort out the state of Coy's health
Thank you all.

Liberty, baclofen used to help, but it hasn't for the last few episodes and I haven't even tired it this time. Thorazine is supposed to work, but of course that is a big no-no for LBD. I might look to see if we have any baclofen on hand that hasn't expired. I suppose it couldn't hurt to try it again.

Tuesday Coy was kind of wobbly wallking into the speech therapy clinic, and while we were standing at the reception desk his knees gave out on him -- I quickly stood behind him and grabbed him around the waist, holding him up. while someone slid a chair under him. They got him a wheelchair to go into therapy. (It is pretty hard to participate in speech therapy when you are hiccuping.) The therapist told me that she was standing next to a physical therapist as we walked up the sidewalk past the big windows. The PT said "Look how that man is walking! He should have a walker or a wheelchair. He is going to fall." It wasn't until tonight that I thought about that and realized that is always the way Coy looks. He is a little more wobbly now than usual, but even when he is "good" he looks like he is going to fall, or as if he is drunk. But until recently he hasn't fallen, for a few years. So I have gotten used to it. But I can see why it terrified the PT.

And then he did fall -- or would have if we weren't there to catch him and get him a chair. Ironically I don't think a walker would have helped him at all. His knees gave out and he couldn't keep standing. When he was falling several times a day (8 years ago) the walker just went crashing down with him. So if it turns out that he needs a mobility aid, at least when he is tired, I think it will be a wheelchair. I wish I could remember if he'd taken his pills before we left, or if we were in a hurry and saved them for our return. Specifically I wonder if he'd had his provigil that day. Maybe that should be increased -- or at least taken first thing in the morning without fail.

Pat I've been thinking of increasing his carbidopa-levodopa. What is a "high level"?

I've been sleeping in my recliner, Lynn, in a different room.

_________________
Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Thu Sep 08, 2011 10:27 pm
Profile

Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: Trying to sort out the state of Coy's health
Ah, Jeanne. I miss the days when Mom would say something - anything - in response to a question or comment from me. A lot of them were way off base, but I miss them now. Having been an adult, or an older teen, during my grandparents dementias, I was pretty much prepared to hear things that don't make sense from Mom. It didn't take long for me to enjoy even the way off things she said. Like "hot tamales," they were often kind of cute.

Hiccups, huh? Mom never had a problem with them, or at least hasn't yet. But I know they are only funny if they go away quickly. It's kind of scary when you can't get rid of them - painful, too. I hope Coy gets past that soon.

Drooling? Mom only does a bit of that, but she has that constant runny nose. So I did something that was kind of special for her and is a bit of a signature thing for her now. Trails of used Kleenex is a real irritant for me. So I found Mom a couple dozen cotton hankies. As she's the only one using them at the SNF, so they always eventually come back to us. And I suspect there is something eco-friendly about washing the item you use on your nose as opposed to using dozens of tissues for what one hankie can do. I think a hankie you keep with you is a lot more sanitary than a trail of dirty tissues. You can get them fairly cheaply online. Just do a search on handkerchief.

I looked at my infant great-nephew's pacifier and the ribbon that attached it to his outfit the other day and now want to find a way to do this with Mom's hankies. I find lots of conveniences in baby stores that I adapt for Mom. Bibs may be next.

Those are my coping mechanisms.

Kate

_________________
Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]


Thu Sep 08, 2011 10:41 pm
Profile

Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: Trying to sort out the state of Coy's health
How many times do you think Coy would have fallen if you weren't right next to him? Times he was close to losing his balance and you steadied him? It sometimes takes another eye, or another caregiver, to notice things that we take as just another part of the day and suggest new ways of doing things. I used to tell people that Mom seldom fell. Of course she seldom fell. I walked behind her with my hands outstretched any chance I got.

I agree about the walker. It takes some strength to use them, especially upper body strength. Like a cane, I think its more for balance than support.

I'm sorry things are getting more difficult. It's hard to take and hard to admit, isn't it? I hope those hiccups go away. Ouch!

Kate

_________________
Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]


Thu Sep 08, 2011 10:49 pm
Profile

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Trying to sort out the state of Coy's health
Derek takes 25/100 of carbidopa/levodopa five times per day.

_________________
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.


Thu Sep 08, 2011 10:58 pm
Profile

Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Trying to sort out the state of Coy's health
How many times do I think Coy would have fallen if I wasn't right next to him? None. Well, the exception is if he takes his seroquel and isn't promptly off to bed. Then I do follow him into the bedroom and may sometimes prevent a fall. But in the ordinary course of the day, I work in my office. He watches tv or reads and gets up to get juice or go to the bathroom. I do not follow him around. He goes to adult day program. He walks into restuarants unaided. As I say, he looks like he is going to fall, but he doesn't -- or hasn't until recently.

He hasn't missed any bowling lately, and he hasn't fallen there.

_________________
Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Thu Sep 08, 2011 11:07 pm
Profile

Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Trying to sort out the state of Coy's health
Thanks Pat. Do you try to do it on an empty stomach? I think 5 times a day for that would be hard!

_________________
Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Thu Sep 08, 2011 11:08 pm
Profile

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Trying to sort out the state of Coy's health
He always gets a high-cal drink with his meds so they are never on an empty stomach, although virtually nothing ever upsets his stomach. Cast iron.

_________________
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.


Thu Sep 08, 2011 11:16 pm
Profile

Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: Trying to sort out the state of Coy's health
Sorry, Jeanne. I forget that Coy is still able to do so much.

_________________
Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]


Thu Sep 08, 2011 11:31 pm
Profile

Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Trying to sort out the state of Coy's health
Dr. Boeve told us to avoid taking sinemet with protein snacks, and in fact for best absorption to take it 45 minutes before a meal or snack with protein or at least 2 hours after such a meal. Hmmm. Finding 5 times like that in a day might be hard!

_________________
Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Thu Sep 08, 2011 11:42 pm
Profile
Display posts from previous:  Sort by  
Reply to topic   [ 18 posts ]  Go to page 1, 2  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