For those who care for someone with Parkinson's disease
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Topic Anyone else at this stage? Go to previous topic Go to next topic Go to higher level

By parkinit On 2013.04.14 16:28
My spouse is immobile at night. He needs assistance to roll over, get up, and wears an external catheter at night. A "good night" is one in which he awakens 7 times or less at night. Sometimes he is very restless, though and in the span of an hour may ask to get up for a drink, roll over, roll back over, get up for another drink, or simply to ask "Is it time for my pills yet?"

He then requires assistance to get up in the morning, his ADLs, and then he is on/off throughout the day - so much that at times he cannot even hold an eating utensil or pen.

He insists that I sleep in the same room (around 3x per week) at times even though we have caregivers at night 7 days a week. I am exhausted the following day as I'm aware of every wakeful period and at times awaken to find him simply staring at me during his lack of sleep periods.

I can barely function the next day after these nights with him yet I am expected to cook all meals, clean up his messes (and there are many and occur frequently), run our nonprofit (which takes around 30 hours a week), keep all the payroll for our caregivers, pay all the bills, etc.

After listening to those with kids continue on, I feel a bit whiny, but I do wonder - is anyone else at this stage with their spouse? I'm trying to keep him at home as long as possible, but lately he's been complaining about the cost of our daily expenses. The majority of the expenses are his drugs, caregivers, or general medical expenses. He can afford to pay any and all these expenses. He could live at a facility for free due to his VA status. However, he doesn't want to do this and I don't want to put him in a facility, yet I'm tired of having to justify our expenses to him.

P.S. - He is also experiencing some memory issues, too.

By Freespirit On 2013.04.15 08:40
Good morning, Parkinit

I can relate to some of the things you describe, but not all. All I can say is it's okay to feel "whiney." You're entitled. :) I'm glad you are here sharing because it helps me to know that I am not alone in this journey.

By lurkingforacure On 2013.04.15 08:56
I can't imagine how hard this must be, we get up lots of times every night too but I gave up sleeping with him long ago, now I sneak into our youngest's room after everyone is asleep and sleep on the extra bed there...otherwise I wouldn't get any sleep and would be useless (and cranky) the next day.

If it were me, when he asked about the expenses, I would explain the choices are either to pay them or move into the VA facility. Perhaps keep a monthly log of how much all of it costs, so that he can see at a glance the totals, and if he is not willing to pay that, then he knows what the choice is. I would keep it as simple as possible, for you, mainly, since it is one more thing to have to do.

By Rempt2 On 2013.04.15 14:20
My husband is pretty much at the stage you describe. He also has a catheter. I have had some nights like that when he yells out but mostly he has such requests during the day time (back and forth to sleep, turning over). We sleep in the same bed still. It's easier than running from the living room. He has problems with memory also and executive functioning. He tries to go on quicken and update our investments like he used to but has difficulty; likewise the internet. I can probably have a conversation with him about 4 or so hours through out the day. The rest of the time he is dealing with the Parkinson's symptoms. The room spins and his temors. His neurologist referred him to a parkinson's clinic in Boston. I am working full time but have 2 aides coming in during the day. Hope things turn out better.

By VioletV On 2013.04.15 15:59
Some of these features seem familiar. I wanted to PM you about this but couldn't figure out how, so I'm putting this offer here. I made a couple of relaxation/meditation CDs for my husband. They are somewhat specific to PD-- they don't say "find a comfortable position" but instead "settle as well as you can in to a position that you will be in for the next several minutes..." and such. It made a difference and over several months, makes it easier for him to fall asleep and to stay asleep -- a real blessing.
I can burn one and snail mail it to you if you think it would help.

By parkinit On 2013.04.16 20:49
Violet - How sweet of you!

I neglected to mention that he usually falls asleep very quickly, but then may be quite restless and wakes up an hour later. I could try the CD with him. We've tried massaging his feet with essential oils as well.

A few nights ago, his caregiver said he was up until 5:00 a.m. in the morning! She said he got up and snacked at midnight and then didn't really settle into a deep sleep until after he had a dose of pills (yes, he wakes up in the middle of the night to take pills).

I've recently set up a temp e-mail as we are trying to hire more help, so please use this: hirecaregivers at aol dot com. I'll happily reimburse you for any expenses.

Thank you all for your kind words and commiserating with me.

By Imtired2 On 2013.04.17 21:21
Hi Violet,
I am caregiver for my 65 yr old brother. He also has colon cancer and was left with an ileostomy bag after surgery, two years ago. The tumor has grown back over these two years and it is now considered too large to be removed surgically. And, the surgery has left him unable to urinate on his own.

He is probably in stage 4 of Parkinson's, and he does not have the dexterity to empty or replace his ileostomy bag, so I do it for him. I also catheterize him. This is done at least three times a day and once or twice at night.

He sleeps in front of the television most of the day, then can't sleep at night. Like other's have written, he has to have night lights on in every room, drinks 4 to 5 bottles of water during the night, complains that he can't breathe some nights, and nightmares wake him at times.

What is wearing me out is not just getting up with him 1 or 2 times a night, it's trying to get back to sleep. Then tending to his needs during the day. I'm exhausted every day. It is very difficult to run my home business, take care of all our animals, and bookkeep for my husband's business too.

I have tried to keep him awake during the day but that doesn't work for long.

I recently bought him a CD player and a CD called Dreamtime. It is scientifically enhanced music for sleep. He doesn't like it. I can't afford to pay someone to sit with him during the night.

I would like to try to put my brother to sleep with your CD. I will gladly pay for it and shipping. If you could please contact me at TCCARRIAGE@AOL.COM, I will trade addresses with you and get a check in the mail.

Thank you,

By carman96 On 2013.04.17 22:30
So many of these things are very familiar to me. Right now I am about as tired as I've ever been.We just got back from a vacation in Kauai. We took our friend Steve who is living with us and he helped immensely. But Steve doesn't change his diaper or help him get up at night. Or change the sheets because my PWP sometimes refuses to wear the depends.
I will never ever go on a big trip with my husband again! Even though I rented a wheelchair and some other stuff it was so exhausting. He is getting less and less ambulatory every day. So sad because six months ago he barely needed a cane. Now he has a walker. I think I will need to get him a wheelchair at home now.
I really really need to get some sleep.
damn this disease!!!

By lurkingforacure On 2013.04.17 23:04
I am so sorry so many are not getting the sleep they need, I don't know how you do it.

I also don't know if this will help, but it might be worth a try, and it's free on youtube although you can probably buy the CD with the waves on it if you find it helps your loved one...just go to youtube and type in "brainwave" or more specifically, "binaural beat" and it will get you the video with the sound. It's about a 16 minute session and I have read it is best to listen to it with headphones (note: it gets louder so I wouldn't start with the volume too loud!).

I know from the few yoga sessions I have been to in my life that if they used that gong at the end of the class, it put me out like a light, it was so weird. And it worked on the whole class-we all fell asleep! Perhaps it realigns the brain, or relaxes it, I don't know, but that gong was magic! Too bad we can't run out and buy a 36" diameter gong to hang by the bed:)

Post if this helps or doesn't help your loved one, so others will know. Personally, my husband was not patient enough to make it through the entire video, so I have no idea if it would help him. But it might help some of you.

By mylove On 2013.04.18 09:05
I bought several of the brainwave 'songs' and they work for me! I just can't get him to settle long enough to use them, because they're designed to be listened to with headphones in order for the binaural beats to work correctly. There's something odd about how fast they can put you to sleep... The only other time I went out like that was when I'd taken a sleeping pill.

Lurking's right, you have to adjust for the volume. But they are cheap enough that they're easy to try. If you go to the Brainwave site they offer buy two get one free. And you can start with their two or three freebies just to see if you like them. There are two types: with subliminals, and with just the binaural beats. Either one seem to work well. In fact, when you buy a song file it usually comes with both versions. :).

Not a sales job, just reporting my experience.

By parkinit On 2013.04.18 19:46
I tried it and it relaxed me. Had spouse listen and he is very hard of hearing and couldn't hear the audio on the youtube music. :(

Good idea, though!

By VioletV On 2013.04.19 02:37
Hi there,
sorry to be slow to reply. I'll burn a few of these home-grown relaxation sessions and be happy to send them via snail mail to you. I'll email for addresses tomorrow.


By Imtired2 On 2013.04.19 10:51
Thank you for the information on Brainwave, Mylove. I am looking into those. And, thank you VioletV, I'll watch for your email.

By makrivah On 2013.04.19 14:55
I played the deep brain meditation last night via ipad on night stand. I'm not sure if it worked for my husband, but I was out like a light in no time! Very relaxing. Thank you for the link.

oh, I found a simple solution for the "night light runway"... I wear a simple eye mask. It comes off in a second if you i need to get up or look around. For a couple of bucks, I sleep much more soundly.

just a thought.

By parkinit On 2013.04.22 22:49
A CNA who is familiar with dementia/Alzheimer's said this night time restless is quite common with dementia patients. This is the first I had heard of this. I knew it was in the evening hours, but didn't realize it went on throughout the night.

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