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 New Symptoms for us 
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Joined: Wed Feb 15, 2012 11:39 am
Posts: 98
Location: Victorville, CA
Post New Symptoms for us
June 11th and our appointment at UCLA can't come soon enough. Last Monday, I heard John moving about in the bedroom. This at 6:30 a.m. when he usually gets up at 9:00. We had a physical therapy appointment and sometimes when he has an appointment, he gets up early thinking he's got to go right away. He woke up this particular morning and didn't know where he was. He moved about our bedroom knowing it, but mentally, he thought he was somewhere else. I told him he didn't have to get up yet and he said someone called us for breakfast. I told him that it was ok, and he could go back to bed if he wanted. He said he heard it on the loud speaker. Again, I reassured him and after about 15 minutes, he went back to bed. When he got up later, he still thought he was somewhere else. Getting ready to take a shower, he asked me if we were hooked up. I said, "what?" and he said are we hooked up to water? (Thinking we were in the motorhome, I guess, yet moving about the room as usual.) Then Tuesday evening, while in Vegas for my bowling sweeps, he sat on the bed in our hotel room and set out his money. A stack (small) of 20's, 5's, and 1's and stared at them awhile. Finally, he told me he couldn't count the money. I sat and counted it for him. These two situations are new to us. More for my log and to share when we go to our appointment.

My sister did meet us in Las Vegas and took him home during my bowling on Wednesday. I went on alone to Laughlin, NV. She stayed with him the night, then my son stayed with him until I got home. He did well in Las Vegas, other than what I mentioned above, but he was kind of in a daze. I stayed by his side always and we had fun at the old penny machines.

Thank you all for reading. I just needed to get this off my chest.

Terri (64, wife of John, 76)

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Terri, spouse of John, officially DX dementia with Lewy Bodies, June, 2012, cognitive symptoms since 2007, active dreams for years before that.


Sun May 27, 2012 9:15 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: New Symptoms for us
Terri, I'm glad you got to go. Hope you enjoyed your trip despite the uneasiness about his condition.

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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.


Sun May 27, 2012 9:47 am
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: New Symptoms for us
Terri, it's great that the bowling tournament trip went smoothly!

Do put those behaviors on the list for your appointment. I think they are very common. I remember the days when Coy never knew where he was. Usually our house was a train station or a motel or a school. Now this only happens once in a while, especially when he has been sick. I remember how hard it was not for me to panic and try to convince him of where he was. Now I think it is much more comforting to just go along with it. "Yes, the water is hooked up and the shower is working well." Stay calm!

I think that I have an advantage in that Coy understands and accepts that he has a disease of the brain. If he was frustrated in counting his money I could say, "Oh, you are a good counter and probably will be again tomorrow. Lewy is just playing tricks on you tonight. But look what a good job you did sorting the bills! I guess Lewy isn't completely in charge! I'll help you count the bills now and any time you need me to."

Even now, after 9 years, it is hard for me to see Coy disoriented to time and place. And I kind of keep track of the episodes to try to guage if he is getting worse. But mostly I'm able now to be matter-of-fact about it without panic.

The Lewy world is not what we signed up for, but it is where we live. We both try to make the best of it.

I certainly hope your appointment goes well and you get some answers.

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


Sun May 27, 2012 3:05 pm
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Joined: Sun Jun 24, 2007 5:35 pm
Posts: 344
Post Re: New Symptoms for us
Jeanne, you and I seem to use similar approaches. If I get upset it just drains my energy and makes John worse, so I try to keep an even keel emotionally, too, and John and I are matter of fact about the bad days like you and Coy seem to be. We face Lewy together as the enemy and use calmness, laughter, and trying to stay ahead of any symptoms we can as our tools to fight the monster.
And, yes, I am well aware that we are still early stage and this is easier to do at this point. I am leaving the rest up to God and will deal with it as it comes.

Terri, you are wise to keep track of things so you can give a full report to the new doctor. My prayers are with you for the appointment and the right match for you and John. If you can take family members with you to help cover all the bases and give support, I encourage you to do that. It made all the difference for me.

Take care,
Pat

_________________
Pat Snyder, husband John, dx LBD 2007
Author of [i]Treasures in the Darkness: Extending Early Stage of LBD...[i][/i] [url]http://www.amazon.com/Treasures-Darkness-Extending-Alzheimers-Parkinsons/dp/1466428228/ref=sr_1_1?ie=UTF8&qid=1334092686&sr=8-1[/url]


Sun May 27, 2012 10:23 pm
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Joined: Wed Feb 15, 2012 11:39 am
Posts: 98
Location: Victorville, CA
Post Re: New Symptoms for us
Thanks so much for the kind words and the advice. Right now, his condition is like the elephant in the room. He really doesn't want to confront it yet. Right now, we're dealing with constipation. I know how dangerous it can be. I finally got him a bottle of magnesium citrate. He took that and we are playing the waiting game now. I had to go hunting and grabbed some, but he just can't pass it. I'm hoping the magnesium citrate will do its job and force his body to expel the stool. If not, he'll have no choice but to go to the hospital. Right now, he refuses. I know this is too much information. Thanks for listening.

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Terri, spouse of John, officially DX dementia with Lewy Bodies, June, 2012, cognitive symptoms since 2007, active dreams for years before that.


Mon May 28, 2012 1:38 am
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Joined: Wed Apr 11, 2012 9:32 pm
Posts: 61
Post Re: New Symptoms for us
Terri....as for the constipation, it is a problem and will probably continue as it does for most of our LO's. Norris has been fighting it for most of the time since his diagnosis of PD many years ago, then right on into the Lewy time now. His doctor recommends Miralax daily, and we also supplement with a couple of prunes, as many veggies and fruits as I can coax him to eat....if we are "regular" with this he stays pretty "regular".....bet you never thought that you would have to have this discussion! Just one of the little pleasures of Lewy.

I also agree with what Pat and Jeanne said about staying calm, and agreeing with the dilusions. Our house is usually a conference center or hotel, and he is always concerned how he will pay the bill. And our "lewy" visitors are always sitting in all of our chairs so there is never a place for him to sit....so if I go sit in the chair I can usually "free" up a place for him.

As you continue to read other posts, you will be amazed at what you learn about lewy land, and how all of the strange things that it brings is happening to everyone else....who knew? And the amazing ups and downs. We are having a pretty good few days, when just a few days ago I was sure that he couldn't stay at home much longer.

Carol

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Carol (67) caring for husband Norris (78) diagnosed PD in 1998, dx cognitive changes 2009, dx PDD/LewyBody variant 2011, still at home.


Mon May 28, 2012 9:01 am
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Joined: Wed Feb 15, 2012 11:39 am
Posts: 98
Location: Victorville, CA
Post Re: New Symptoms for us
Thank you Carol. I have been giving him stool softeners twice/day, metamucil tablets, twice/day, and lately, Phillips tabs when he needs it. Every morning he drinks prune juice. Now the magnesium citrate. I was able to manually remove some stool, but he can't pass it. He had the bottle of magnesium citrate last night at about 8:00 p.m. and it still hasn't produced the "clean out" effect it does for most people I know. His delusions this morning (he's still asleep, but woke when I got up) are worse than usual and I'm thinking it's the constipation/stress. Wish I had a doctor to contact but our appointment at UCLA isn't until June 11th.

All the comments/suggestions I have received have been very helpful and so appreciated.

Fighting on,
Terri

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Terri, spouse of John, officially DX dementia with Lewy Bodies, June, 2012, cognitive symptoms since 2007, active dreams for years before that.


Mon May 28, 2012 9:13 am
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Joined: Wed Apr 11, 2012 9:32 pm
Posts: 61
Post Re: New Symptoms for us
Terri....we also keep several fleet enemas on hand, just in case. They seem to work better than some of the other things, and fast. Carol....ps don't worry there will be lots of other personal issues that you will have to either ask about, or just "vent" about!

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Carol (67) caring for husband Norris (78) diagnosed PD in 1998, dx cognitive changes 2009, dx PDD/LewyBody variant 2011, still at home.


Mon May 28, 2012 9:36 am
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Joined: Sun Jun 24, 2007 5:35 pm
Posts: 344
Post Re: New Symptoms for us
Terri, my John has had those bouts with constipation and they are rough. One of them almost sent me over the edge emotionally before I learned about how to approach this situation in a way that worked for me.

Here is what I have learned from John's experience. The key to preventing constipation for him is water, water, water. I set out 4 large glasses every morning on the kitchen counter where we will both see them throughout the day. The goal is for John to drink all 4 throughout the day. Each time he drinks one, the empty plastic glass is supposed to be put upside down next to the remaining full ones. That way I can see at a glance how much John has consumed as the day progresses.
Now, Lewy being Lewy, John often takes a glass or 2 to the den with him and they sit all day beside him full of water. Or he will drink some but leave 2 fulls in the den and 2 fulls in the kitchen and I have no clue what has really been consumed. So there is plenty of room for the Lewy chaos to have a little heyday with me, BUT in general this procedure helps John consume more water than he would on his own while giving me some idea that he is consuming more water.

And the good news is that John seldom has the constipation events anymore. What prompted this procedure was an ER visit for constipation that resulted in a sheet being given to us by ER staff as we returned home. The first item listed as a cause for constipation was a lack of sufficient intake of water.

The last time this happened our pharmacist told me that I could give John another bottle of magnesium citrate a few hours afterwards if the first bottle did not do the job. (Your pharmacist can advise you about how many hours later.) Also he said it was good to drink lots of water after taking the mag citrate. This is because the mag citrate causes the intestines to draw more water to loosen the stool, which is one of the reasons it helps in passing the stool. This did work for John and kept us out of the ER, which has become a major life goal for me in Lewy Land.

This is pretty graphic, but it may help someone, so here goes:
I placed towels and waterproof pads under John in bed (where he lay in considerable discomfort) and eventually his event ended with as minimum mess to clean up as possible. I had placed a trash-bag-lined trash can close to the bed to receive the mess, put on disposable latex gloves, and disposed of it quickly. Towels went straight into the washer in hot water. I had also laid a walkway of towels between his bed and the bathroom in case he got up to try to go and made a mess on the way. But it turned out that we did not need that.
I hope this helps you and that your event is over quickly and at minimum financial and emotional cost to you both.

Take care,
Pat

_________________
Pat Snyder, husband John, dx LBD 2007
Author of [i]Treasures in the Darkness: Extending Early Stage of LBD...[i][/i] [url]http://www.amazon.com/Treasures-Darkness-Extending-Alzheimers-Parkinsons/dp/1466428228/ref=sr_1_1?ie=UTF8&qid=1334092686&sr=8-1[/url]


Mon May 28, 2012 1:55 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: New Symptoms for us
Miralax worked well for my father.

You may have to resort to laxative suppositories.


Mon May 28, 2012 9:08 pm
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