Does anyone have a problem getting their loved one with Parkinson's to go to bed at night and stay there? - AgingCare.com

Does anyone have a problem getting their loved one with Parkinson's to go to bed at night and stay there?

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I put mom to bed, and most nights she is up within 15 minutes and comes out of the bedroom.


Or, she has an issue with moving around in bed like she can't get comfortable. She moves her legs back and forth and moans. Sometimes this goes on for hours. Therefore, if she's not sleeping, neither am I because of all the noise.


Any ideas would be helpful. Thanks!

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Kro,
My husband was on Rapidflo. I think that med was a diuretic. He was living in the bathroom at night. He had to take it at night because it had a dizziness warning. I went to the Dr. and she took him off it. Bathroom trips became much less. Plus his falling got better.

Is there any med he’s on that could have a diuretic effect?
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The nocturia is very difficult to deal with. My husband has tried 3 different meds and no good outcomes have resulted. It is wearing me out with the unending trips to the toilet and more laundry due to overfull Depends resulting from difficulty getting out of the bed.
He goes more at night than during the day when he is actually taking in fluids. We haven't found a solution yet.
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Taking the last carbidopa at bedtime helps a great deal with leg issues. I wish they could stay asleep but the need to use the bathroom happens a lot also, but with the last pill taken late, they get there and back safer. Well, so far at least. Nothing stays the same with Parkinson’s.
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Almost all Parkinsons callers report that repositioning in bed is just as big a problem as getting in/out of bed. If you can't move around when uncomfortable you will not get quality sleep. Normally people wake up at night, roll over, and immediately go back to sleep- it doesn't work that way with PD. Also- 60% of people with PD will have
"nocturia"- urge to urinate multiple times a night- adding more discomfort. Many times the spouse/caregiver is waking up 5-10 times a night to help and are ready to crash. Bed mobility products can be very helpful in these situations- let me know if I can provide suggestions.
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My father does the same thing. He seems to constantly try to stretch and grunts while doing so. Last night was a very long night. I see through reading this that some people are prescribed various meds to help during the night. I'm going to ask his neurologist about some of the meds I've seen mentioned.
To complicate my dad's issue, he's diabetic and he really doesn't manage it. I live 100 miles away and come every weekend. My mother is also experiencing memory issues but is physically better than him. Together they almost make one good functioning person minus both their hearing loss which negates everything. While I would love to be enough to care for them both, I cannot.
I've attempted to adjust medication times to avoid wearing off through the night but the more carbidopa/levodopa (especially the timed release) the more vivid his dreams or the more confusion which also causes him to get up or to try. It's a toss up.
He fails to take his meds and recently the decision for long term care has been made, but unfortunately the process to get help from our state (NM) is tedious. They qualify on income but have in excess of $3000 in the bank which must be appropriately spent down or risk a penalty. I've begun to do this by hiring a FT caregiver and seeing that his meds are given to him 4x's a day and at bedtime including checking hs sugar levels and administering insulin. This care will break my parents in less than 3 months.
So, timely medication management, a night time anti anxiety or sedative may be an answer. Exercise through the day. A therapeutic massage with a muscle type rub, especially the legs can also help any soreness and help to relax.
If you are seriously considering long term care, the expense is enormous and research is lengthy. Income, assets, irrevocable trusts, facilities, availability of beds, ratings, social workers, admission screening, TB tests, Dr. certifications, visiting facilities, asking the right questions, the potential need for an Elder Care attorney, VA benefits are both a blessing and a curse. Often there is a need to fight the system to do what you wish you didn't have to do in the first place...it's exhausting. In all of this, in my case, multiply by 2. If doing this for one parent seems a huge task, try to find care for both in the same facility when they both need various levels of care.
And here we go, they are both up and pulling in different directions. This morning, I'm about ready to slit my wrists. Good luck everyone. A long life is not necessarily a blessing UNLESS you are healthy.
I apologize, did I mention it was a particularly long night?
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My husband was experiencing some of the same issues which complicated getting up to use the bathroom and made the risk of falling even greater. He takes one Carbidopa pill plus Entacapone and a few hours later, just before b ed the last Carrbidopa pill. It helps. Our Neurologist once told us that treating Parkinson's is not an exact science and it takes some trial and error to find the right combination of meds. Don't we know it!
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Most cramping or restless legs are coming from the wearing off of carbidopa. I went through this with my husband. I had to re-time his meds so that his last dose was at bedtime. And of course no food 45 mins before and after his meds.

The problem went away. Because he takes that late dose, he can use the restroom by himself. If you are already giving a bedtime dose, then an extra half pill at bedtime should keep them going through the night.

How active is your Mom during the day? Exercise is the key to keeping them moving by themselves and out of wheelchairs.
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You really should consider a nursing home.
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My mother passed from Parkinson's. Have you asked the Dr to prescribe a mild sedative? If Hospice is not involved then you need to contact them. Hospice was involved almost 4 yrs with my mom. Keep her at home as long as you can because she will get the best care from you. My mother was in a nursing home for 5 days for respite care to give my dad a break, this was set up by Hospice. After 4 days dad pulled her out because she fell twice while there. You have a hard difficult road ahead of you. Check into all resources available to you, you will need it. Parkinson's can be very exhausting on the family. My mother was able to die at home peacfully but it took me, my 89 yr old dad, brother who was also dying, Hospice and a care giver we hired for 3 to 4 hrs a day. So sorry for you have to go thru this.
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Thank you for your insight Diane316. My sister and I are considering a nursing home. I have started the Medicaid paperwork and will get it turned in shortly. We are going to see a place tomorrow. Pray that it goes well.
Thanks again!
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