Mom has Parkinson's dementia, new here. What can I expect? - AgingCare.com

Mom has Parkinson's dementia, new here. What can I expect?

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Hi everyone. Unlike most of you, I'm not full time caregiver...yet. I don't know which parent or if it will be both of them will be here with us when the time comes. My dad is 90, in relatively good health, and cares for my mom for the most part. Mom is 86, has Parkinson's, and yesterday we got the official word from her Neuro that she is in early Parkinson's dementia. We suspected it, as she has become very anxious, unreasonable, repetitive and paranoid. She is up at all hours of the night walking...and sometimes eating or moving things around. Some of this behavior is likely from the PD meds. Doctor is trying to pare the meds down. My poor dad tries his best, but I know it is wearing him down. I'm over there almost every day, she has a home health nurse, PT, OT, personal aide and social worker visiting once or twice a week each. I take her/ them to all doctor appointments, and am on the phone regularly with her nurse and all therapists, etc. my dad is still pretty independent, drives, cooks, and builds birdhouses! I have partial responsibility of 2 of my grandchildren as well as my hubby, who is my rock. Right now, I'm just trying to figure my life out. Do we sell the house we built 14 years ago and go into a one level? The house is very big, has all my mom would need on the main floor, but the temptation of the stairs scares me. I feel terrible having to reprimand her for stopping her potassium because it tastes bad, or not using the prescription cream on her legs for Neuropathy. But sometimes she is just going to do things her way! She CAN do a lot of things, but refuses to try. I know puzzle books, reading, etc., calms her...but she won't do it. Ok....that's the vent part. Now my question...does anyone else deal with PD dementia? What can I expect? I have read that it can actually lead to Alzheimer's in some cases. Anyone?

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Mom has had Parkinsons for over 10 yrs. She has some mild dementia and takes Aricept which seems to have helped at least in progression. She does pretty well when keeping her in familiar settings. She was having more and more falls and required me and helpers to stay with her. We had her stay with us temporarily and that has turned into full time for 2 yrs now. She did an eight week stint in a rehab/assisted living and though the place was beautiful it was not what we wanted for her forever....it was certainly hard for her to get her PD meds on schedule which was crucial for her improvement and care. Even though I got rest at night, I was there 2 times a day and had to constantly stay up with her meds since she regularly didn't get them as scheduled. The facility usually gave meds early morning and again at night and that varied from 8-11pm....not good for PD. I've had to plan ahead without making major decisions too quickly. PD and Dementia has many twists and turns. We too have a 2 story house and mom lives in our den. At first I felt bad, but she slept in her recliner at home for years because it was a lift chair and she had trouble getting in and out of her bed so she lived in her den at her home also. She has always been a home body, so she seems pretty satisifed for now in ours. I wish a group home was an option for her at times, but don't know of any in our area. Her assisted living rehab stint was lots of work for me unfortunately and she didn't progress alot due to them doing most things for her, (bathing twice a week, changing her clothes, briefs, etc.....they didn't have time to be with her and let her do anything on her own..) They flew in, changed a brief, got her out of bed, and flew out.....she became reliant on them doing her personal care. This is just how we felt and how things worked for our family. Like previously stated everyone is different and everyone's progression of PD and dementia are different. By the way, you will find that similiar if not same meds are used for PD, dementia and ALZ. Demetia with PD isn't uncommon. Wishing you the very best. Get help when you can, give your dad a regular day off by finding a sitter if possible even if it's for only 3 of 4 hrs, and lots of hugs. It's sometimes a day at the time, a week at the time, while being aware what could be in the future. You are not alone....
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Jeanne, the Neurological Institute has a sleep disorder clinic as well! I'm sure that will be on the agenda...
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My family is in same situation. Took a long time
But my mom is finally on board with selling beach
Home and moving on to assisted care with our
Dad. Tomorrow she will change her mind and
Say we are making all decisions. For me, DISTRACTION is key. If she is upset tell her to tell you stories of her past. Focus on good things,
Such as, yes you are moving but we will do fun
Family trips. This will be a daily task since the
Dementia reminds me of movie 50 first dates.
Keep positive for them it makes it for a much
Better day!!!
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PrettyGood it probably depends on where you are, perhaps even what country. I'm in Ontario, Canada. In the city the waiting list for a nursing home space can indeed be up to two years but in small towns and out in the country the wait time is less. I was able to place my mother in a wonderful NH in the country, an hour's drive from the city, in four weeks, however I was moving into the country myself and now live ten minutes from the NH so it worked well.
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Nana2eleven, try to track her night behavior in a lot of detail. Better yet, get her an appointment for a sleep study. RBD -- REM sleep Behavior Disorder -- is very common with Lewy bodies. With this sleep disturbance the sleeper has a consistent pattern to the dreams. They usually include being chased or threatened by a "bad guy" or bad animal, etc. When we dream our activity switch is turned to "off." But for people with RBD this temporary paralysis does not happen. When my husband swung his fist to fight off the bad guys he punched me hard in the chest. When he was running from the wild animal his legs were pumping like crazy under the covers. When he swung out to push his chaser away he threw himself out of bed! Obviously, this disorder can result in injuries to the person who has it and to bed partners! The wonderful news is that one little pill (Clonazepam) can completely eliminate this problem. When my husband took it before bedtime, no problem. If he forget one time, he acted out his dreams. If he took it the next night, back to calm sleeping. For him RBD came decades ahead of the dementia, but it can also come during the active dementia part of the syndrome.

I certainly can't say that is what your Mom is experiencing, but I think it would be very worthwhile to sign her up for a sleep study.

Did you get to talk to her nurse? How did that go?
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ashlynne wrote ..."I would strongly suggest...getting your parents into an assisted living situation. Some facilities have an assisted living wing and a skilled care wing so when needed residents can just move to a greater level of care."
I would like to point out that yes, the AL may have a SNF or memory care section, BUT you can only move into it when there is an opening. If there is no opening when you need it, you might end up moving to another facility.
Just don't ASSUME that your wonderful AL with 10 units of ultra care, is going to have a unit ready for you, when you need it. This can be very difficult when it's a married couple and one has to move elsewhere.
The last AL I visited, was still being built and the hurried to finished off memory care unit (15 units) because it was already FULL. When we visited again, they made no mention of the unit, because there was already a 2-year wait list for just the memory care, and these were all outside people, so anybody who rented in the AL as of that date, would have to wait for the brand-new memory care unit's 2 year wait list to be gone thru, before they would have a spot, even thought they would have rented there for 2 yrs.
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That's how it appears. When she wakes up, there is evidence of her doing things.(eating, moving things around , etc)
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Valinda, what are her night episodes like? Does she appear to be acting out her dreams?
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Good morning, Jeanne....Seroquel is one that she was taken off of recently. She was having the night episodes with it , so I'm not sure if it was helping or not. She had been on Gabapentin for her legs, but that knocked her out...day and night. Also they were afraid it was compromising her already poor kidney function. Mom also has Afib and has a pacemaker, so meds are very tricky for her. I hope to talk more to her nurse today about it. I had her tweek her Xanax dosage last night ( Doctor said 1 or 2 at bedtime) since 1 did nothing and 2 made things worse. I had her take 1 and 1/4. Meds are very tricky...and just with her Parkinson's it's been trial and error since her diagnosis. Thanks for your help and advice. It is much appreciated! By the way, although many call me Nana, I also have a real name. It's Valinda :)
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Yes. It was Seroquel. It is not generally recommended for the elderly, but it is often prescribed by doctors who treat Lewy Body Dementias. Most of the people in my support group have tried it. For many it was successful. For others it was neutral, and for some it made things worse. That is true of pretty much everything tried for brain diseases. Each brain really is unique, and one drug does not work for everyone.

In our case, I learned not to give it to my husband until he was sitting on his bed in his pajamas. Its effect was very rapid. He really couldn't walk well after about 20 minutes. If he had to get up in a few hours he could walk to the bathroom just fine. But for those first couple of hours, he was better off in bed!

Some people took it a few times a day. That would never have worked for my husband, but it worked best for them.

This really is a trial-and-error process. We had good success with medications for most of hubby's symptoms so I personally think the process is worth it, if you have a doctor experienced in treating LBD, or very willing to research as each symptom comes up.

I can't promise that Seroquel will solve your Mom's problems, but I hope her doctor will be willing to work on finding something that will work. Always start on a small dose, try only ONE new drug at a time, monitor results closely, and gradually increase up to a therapeutic dose.

By the way, this is one of the drugs Hospice took my husband off at the end. We quickly reversed that decision when he once again was agitated through the night. Obviously that drug had continued to work the 9+ years he had been on it. It was the second drug he went on, because sleeping through the night was our most urgent early need.
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