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Topic Is episodic confusion and 24 hrs sleep PD? Go to previous topic Go to next topic Go to higher level

By Kalispell Kathy On 2009.08.19 01:57
My first post asked if fluid retention could be related to dementia. Dr. Ahlskog's "The Parkinson's Disease Treatment Book" recommended on this forum answered many questions for me, and I determined that the two aren't related, in my husband, at least.

Since then, he has had two episodes, three weeks apart, when within a day he becomes very confused, seems to hallucinate, and is weaker than usual. (His PD is advanced.) After a couple of days of this, he becomes impossible to waken, sleeps for 15-20 hours, then wakens much less confused, bright-eyed, and almost his normal again. He loses a little more each time this happens, though. He has dementia, and was on Sinemet 50/200 tid, Namenda, and Aricept. During these episodes he wouldn't or couldn't take his meds, so this time I left him off the sinemet until he started drooling again (96 hrs), just in case these episodes are drug side effects. I restarted him on 25/100 tid, and the drooling stopped. He has no tremors, and walks the same without the drug as with it. All the neurologist said is "there may be something else going on".

I'm asking whether this is typical PD symptoms? I've talked with another caregiver who said her husband also has uncontrollable need for 24 hrs of sleep at times, but he doesn't have the dementia component.

It's so nerve-wracking trying to figure out what to do! The first time it happened, I called the kids and tried to get Hospice started, so I could get some support and help. Three hours later he staggers out to get a bowl of cereal! The second time it happened I just waited hopefully, knowing he's my Lazarus man. By the time Home Health came he was having some wonderful days.

It's nice to know you are here for support. I realize not all questions are answerable, nor all causes knowable, but the accumulated wisdom of this group is awesome. And it helps to have a place to ventilate. Thank you.

By bandido1 On 2009.08.19 13:39
Kathy: I'll submit a couple observations relating to your post. My daily meds include Aricept,Namenda,RequipXL, and Stalevo for my PD. I have never slept more than 10 hours at one time. In fact I'm usually awake every 2 hours during the day or night. Additionally, I have swelling in my right ankle as well as the right calf. My heart Dr. Tells me it is fluid buildup related to congestive heart failure and I take Lasix to deal with that. Nevertheless, I noted many patients on other forums have leg swelling problems. Personally, I feel the swelling is related to parkinson's. Let your Dr. Take a shot at it and then ignore it if you don't agree. Bob C

By annwood On 2009.08.19 17:00
Hi, Kathy

I would certainly run all of this by the physician. I will say that in the later stages my husband would have periods of prolonged sleep and this would be followed by days of no sleep. When he was sleeping he did not get his meds and I saw no difference in his symptoms. His neurolgist told me that PD reaches a point where the meds are no longer effective and to not worry about it. Every case is so different.

I would go ahead with the Hospice if at all possible. The criteria is just a progressive disease with no possibility of recovery. They were so supportive and wonderful to my husband and to me.

Good luck and keep us updated.

By WitsEnd On 2009.08.19 18:17
I'm not sure everybody would agree on "typical", but based on my experience, this was what I saw with dad in the later months. Be prepared for days when things go really good and days when they don't and a downward spiral. I would encourage you to talk with the neurologist and hospice. Hospice can assist with pain and anti-anxiety medicines. The hospice drugs are liquid, can dissolve or are suppositories so swallowing isn't required. They can also help be an advocate if hallucinations or other problems are preventing him from being comfortable.

It wasn't until the last couple of months that dad couldn't walk. Then there were days he would sit up and days he wouldn't and couldn't even be roused to even wake up. I called my relatives and said we are near the end on a Tuesday because he wasn't swallowing and was unresponsive. Two days later he was sitting up and eating Cheese Whiz and talking some. The hospice folks were amazed. We lost him the following week. The roller coaster ride of never knowing what to expect or how to react to the crisis of the moment is very, very hard on the caregiver. PD is a horrible disease.

God will be in my prayers.

By annwood On 2009.08.19 19:58
You are so right, Witsend. It is a rollercoaster right up until the end. I hope you are well and catching up on your rest. Thanks for staying with us. I have found it helps.

By Kalispell Kathy On 2009.08.19 23:46
I feel we get more help from his long time internist, who sees the whole picture better than the neurologist at this point. We saw his internist this morning, and to my relief, he encouraged Hospice instead of Home Health and all the therapies they wanted to try.

Now it's just a matter of contacting hospice, and I find myself reluctant to do so. It's such an admission that the end is in sight--such a letting go! Up until now that fact has seemed only theoretical. Silly, I know. We go to such lengths to protect our psyches!

We are really fortunate that my husband sleeps all night (except to urinate), then naps during the day. Sleep seems to help him stay rational and oriented during the waking hours. I rigged up a do-it-yourself condom cath to use at night, so he never gets up, and now hardly wakens, and neither do I! We used to be up many times at night, often with bed changes. Now he's virtually always dry. That's been a huge help in coping.

Thank you all for sharing your experience and insights. It is remarkably helpful and comforting!

By susger8 On 2009.08.20 08:38
Please don't feel reluctant to contact hospice. They offer so much help and support, to the family as well as the patient. I can't say enough good things about them.

By WitsEnd On 2009.08.20 09:08
Annwood, thanks for the thoughts. I, like you, hope that by staying involved that I can help others. There were so many things I didn't know at the beginning that I found out through this forum. Things I wish I had known sooner. The comfort and support...just being able to vent with somebody who understands...meant the world to me. I was so grateful. Thanks to you to for staying with the forum. I appreciate your posts as well.

I agree with Sugar8. Don't be afraid to contact hospice. I know how you feel. I cried as I was signing the papers. You know things are going bad, but in the back of your mind you have this little bit of denial that things really aren't THAT bad. Agreeing to hospice cuts into that defense. Even when everyone--including you--says it's time to let go--there's always this little part that hangs in there. Don't worry about that. When you're ready you will know and even that little part will let you accept what you need to accept and do what you need to do.

For now remember hospice doesn't have to be a final decision. It means a doctor thinks the patient has 6 months or less. Some people have been on hospice for years. You can go on and off hospice. You can still have home health care come in if there is another diagnosis. We did that with mom. We had hospice with COPD and home health care with her heart and circulatory issues. That allowed her to receive care above what the hospice provided.

For now, you can just think of hospice as an additional tool to help the PWP, you and your family through this time if that helps.

God bless.

By lynn On 2009.08.20 20:18
kalispell kathy- Explain the catheter you rigged up. We had a heck of a time keeping it on.

By Kalispell Kathy On 2009.08.21 01:46
I use a Trojan ENZ condom, flexible suction tubing (more on that later), a gallon milk jug and a rubber band. Wipe the lubricant off the condom, and cut a tiny hole in the end for the tubing to get pushed through. Push one end of the tubing through the hole toward the inside of the condom and secure the edges of the condom to the tubing with the rubber band. Only 1/4 inch or so of tubing should end up inside the condom. Using a narrow knife blade, cut an X in the milk bottle top and push the other end of the tubing through the X. It forms a pretty tight seal-- enough to hold the tubing in place. That's it.

The tubing has to run "downhill" the whole length, or it will leak around the condom and the condom will slide off. I run the tubing under my husband's knee and he doesn't even know it's there. Put the end of the tubing right on his meatus (urine opening), gently pull on his penis, and roll on the condom. Make sure it doesn't twist closed at the end, position your tubing and jug, and go to bed!

The problem part of this is getting tubing that will work. It needs to be flexible, light weight, and large enough in diameter to handle urine flow. The tubing I have is from the hospital, is used for their suction equipment, and has adapters on either end. It's about 5 feet long, and about 1/4" internal diameter. I can't find anything equivalent retail in Kalispell. Tomorrow I'm buying a box of the stuff from the hospital, then I'll see if there's a site online where it can be obtained at a reasonable price. Let me know if you can't find anything that works.

I use the same condom for about a week, then it gets sticky and difficult to use. None has broken.

Rinse the system out in the AM and rig up a way to dry the condom. A bent and folded coat hanger works fine to keep the walls of the condom open to the air.

It's really a super simple system, despite all the words I just used to explain it. Cheap, too! Two requirements: a guy has to be able to wear a condom, and he can't be a restless sleeper or it will pull off. I don't know if there are different sizes of condoms available. I suppose that could be a factor in how well it stays on, too. It doesn't have to be a tight fit to work, though, as long as the urine doesn't back up.

I hope it works for you as well as it does for us. Let me know. If it doesn't and he can handle a urinal, you can rig up a self-draining urinal using a small dish soap bottle attached to the tubing. I'll leave that for a later post if anyone is interested.

By annwood On 2009.08.21 20:40
You can purchase the "condom like" devices at any medical supply house for about $2.00 each. They can be used over a few times. I think you will find they stay on better and they already have the attachment for the tubing built in to it. I found that an adult diaper over it at night held everything in place well and if there was any drainage the diaper caught it.

By Kalispell Kathy On 2009.08.21 23:13
The commercial condom caths that I've had prior experience with had stickem that made them difficult to use/re-use. And they failed often. That was many years ago, so they are probably much better now. Not nearly so much fun to create though! And more expensive. I think I'll get one and do a comparison test.

By pegk3548 On 2009.08.22 09:40
Kalispell Kathy
My husband also sleeps a great deal of the time. He will sleep usually until around 12:30 or 1. I will then get him dressed and he will come out to the living room and either sit in his chair or lie on the couch. I will fix him something to eat and alot of times he can hardly finish eating. He will keep falling forward closer and closer to his food. He will then have to lie back down and he will usually sleep until dinner time. Every once in a while he will have a good day when he will set in his chair for a while before dinner but more often then not he will not. Then usually after dinner he will have to lie back down for a while. Then he will watch T.V. for a while. Usually by 9 we are starting to get him ready for bed. He watches T.V. in bed for a while. It seems like he just requires so much sleep. We also have some days when he does not wake until 3P.M. On these days I can not even wake him at all. It seems like the meds don't make a whole lot of difference at this point. We just do the best we can. It is good to know I am not alone.

By Kalispell Kathy On 2009.09.04 08:32
My husband was doing so relatively well after his last episode that I put off calling Hospice "until I needed them". Then suddenly last Friday he got very confused, less able to help himself, and very difficult for me to move. It was a tough two days without Hospice to call for help because we weren't with them yet. My point? Big mistake to wait! We're set up now, and it's made life so much easier. I have lorazepam liquid to give when he's agitated and morphine liquid if he hurts or is short of breath. Unfortunately, the transfer chair they provided doesn't have removable arms. That means I have to lift him over those arms to get him into the bed since he can no longer comprehend standing. I think that was only a brief issue, though. He's going so fast now!

I thought I'd have more time with him. He's been like Lazarus so many times in the last couple of months that it's hard not to believe this episode will pass, too, and he'll rise again. It's like our lives are lived on bungie cords lately! My heart knows the end is near now. I can't ask him to stay. He's ready to go. I want to, though. Life looms pretty empty without him.

Thank you for all your support and the push to get into Hospice. You were so right.

Peg, about your husband: have you checked his blood pressure after meals? At least for the last few months my husband's would be 180/70 in the AM in bed and he'd be alert and downright frisky. By the end of breakfast it would be 90/50 and he'd be falling into his food. After 15 minutes horizontal, it'd be back up to 130/70. It's as described in Dr. Ahlskog's "The Parkinson's Disease Treatment Book", which I highly recommend. Adding salt to his food and increasing his water intake helped some, though he still had to lie down and sleep after breakfast. And a lot of other times. If he didn't sleep when he needed to, he'd get more confused, so I'd just tuck him in. In truth, the many sleeps made being his caregiver infinitely easier. The restless agitation of this last week is exhausting! My heart is with you. You are, indeed, not alone.

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