Sundowners and seeing things

McPheniusOctober 4, 2005

Back on June 17th, I found this group and posted a message about sundowning. Starting to see my mom with symptoms. However, the past 10 days have been very hard.

My mom lives with my wife and I, along with our 8 year old son and 19 month old son. She suffers from Parkinsons and has bad bouts with Dimentia.

About three weeks ago, my wife saw her acting confused, unlike ever before. She was putting mayonaise onto some papers and trying to put tea bags into a calender. After a few days, she became more confused to the point she was waking in the middle of the night and coming into our room accusing us of shining lights around her room. One night, she looked possesed and was very determined to accuse us of trying to make her think she was crazy.

We ended up taking her to the ER a couple days later due to the confusion and aggressiveness. She was diagnosed with a UT (Urinary Tract)infection. They kept her over night and relased her the next day. That was one week ago.

For the past week, she has not shown too many signs of hallucinating, but has acted confused at times. I began reading up on sundowners and found UTs can increase the symptoms.

Last night though, she woke up in the middle of the night and tied her bra around our dog's collar to "walk her" in the house. My mom also insisted that there were "little kids" on the back patio and cars parked in our backyard. Of course, none of this existed. She went on to say our house was a "witches cavern" which I had never heard that term before. After an hour, she went back to bed.

This morning, she was very apologetic about what happened and "promised" it would not happen again, but I know she can't control it.

My wife are thinking about hiring a live in nanny since my mom's condition can occur at a moments notice and other times she is fine for hours or days. It would be too expensive to hire hourly care and she does not need nursing skills.

But my wife and I are concerned about our kids and it is starting to impact or peaceful home life.

Has anyone else been experiencing this and what did you find helpful? We figured if we hired a live in nanny, she would be more for helping my wife with the kids, cleaning and cooking. That way my mom could continue to help my mom when needed and take restful naps during the day with a nanny's help.

My mom's Parkinson's Dr. will not prescribe a sleep aide at night because he wants to regulate her new schedule of meds before doing that. I guess her schedule has to change after her UT. But I really think she needs something to knock her out at night so she doesn't get up and see things.

I did read about Sundowners where it is linked to lack of sleep and overtired from the day. I can see where this would be true for my mom. She is going and going and going during the day trying to do everything. We constantly tell her to sit and rest and she complains she won't be able to move if she does.

Thanks for any information!

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The nanny will help for now but unfortunately, your mother's condition may continue to decline. And although she is "fine" for days at a time, all is not really well because you don't know when another episode will this correct? So you're all living under some enormous stress.

I would start your search first by contacting Elder Services in your area. You can call just for information. Those wonderful people are a wealth of knowledge and compassion, and they are hooked into more commuity resources than we can imagine. Your mother is probably eligible to receive some in-home assistance, particularly if both of you work. Does she have any kind of an outside social life? What about an adult day care center? That would be a few hours a day, and would give you both a break, plus she would have outside stimulation. They have programs that specifically deal with dementia patients, and they usually provide transportation also. Again, the Elder Services folks would have info on that. They may also have support groups you and your wife can connect with.

UTIs can wreak havoc on the elderly, and often the only symtom is confusion. So add that to your mother's Parkinsons and dementia, and you've got quite a cocktail. I think her doctor is wise and being cautious when he hesitates to prescribe a sleep aide right now. The elderly are often more susceptible to drug interactions than younger people -- I'm sure you've heard of elders who have been overmedicated.

    Bookmark   October 4, 2005 at 9:52PM
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Thanks lasershow! I agree with what you are saying and that is helpful.

One thing about my mom that I should add to the "cocktail" is that she has always worried extensively. My dad used to say "if your mom didn't have anything to worry about, she would worry about that." And the Dr. has said her worrying causes her Parkinson's meds to fail. So she is on Paxil too, but she still worries and panics. But not as much over the past 10 days, since becoming more paranoid.

However, she never wanted to do anything other than be with my wife. Such as going to Dr., to lunch or shopping. She never wanted to do any of those group type things, even at our urging. She paniced when my wife wasn't around.

I will check with some type of Elder Services. I think we have a group here in South Florida called "Senior Connection."

I understand what you say about the Dr. hesitating on a sleep aide, but in the meantime, my wife and I are concerned about my mom and most importantly about our two young children. One night, my wife slept in the baby's room just to make sure my mom didn't come in there and do anything crazy. On a side note, her bedroom is now downstairs and we have gates on our staircase (for the baby) that we would hear opening at night.

Right now, my wife takes care of my mom so she does not work. I am the only one working in the household. So I am not sure how much at home my mom would qualify for. But the live in nanny would be more for my wife. So she could help my mom as needed and the nanny could do other tasks like helping with the kids, cooking and cleaning. That way when my mom is fine (mainly during the daytime), my wife can have a break.

    Bookmark   October 4, 2005 at 10:05PM
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Don't be silly about this. Your first responsibility is the safety of your wife and children. Your mother deserves respect and care but cannot be allowed to threaten the safety and wellbeing of your household -- which she clearly is.

You must get her out of there and into some other place that can deal with her better without these risks. The time has come.

    Bookmark   October 4, 2005 at 10:38PM
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What a frightening thing it is for adult children to see the deterioration of our parents. Your 8 year old must be terrified, even the little guy will react to the tension and worry in the household. Try your idea of a nanny and see if it is the right change to make this situation easier for all of you. It may not be the answer for the long run, but your family needs help now!

    Bookmark   October 5, 2005 at 9:34AM
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My Mother lived with us for 12 years, through our kids' teenage years. She was fine then. When her dementia began, it was frightening to all of us, grown kids included. It's horrifying to see our loved ones this way; if it's difficult for US as adults even with our understanding of what's happening, but can you imagine how terrifying it is for children to witness?!

Please place your Mother in a facility. People here know what I went through with my decision, just as Mimi is now, so I'm not being flippant when I say that.

YOUR first priority as a Father is to provide care for your children and your Wife, and if you want to try a nanny first, then so be it. But that won't keep your children from seeing their beloved Grandmother taken away from them bit by bit as those insidious diseases remove her from their lives. I caught my Mother one day, leaning over the stove and trying to manipulate the buttons: what if she burned herself? Or our home? How would I have felt then? There is no way to keep an eye on them 24/7, yet that is what you are asking your Wife and nanny to do.

There are worse days to follow, I'm sorry to say. Your Mother needs the care of a facility, their constant monitoring, their recreation times, a more stimulating environment, a SAFE environment, a doctor on call...You'll have much more pleasant visits with her, you can take her to lunches, dinners, to your home for holidays...your visits will take on a more precious tone, as all the mundane duties will be performed by others. Would your Mother really want you to sacrifice the well-being of her grandchildren for the sake of her living with you?

And you need to care for your number one priority: YOUR family.

Just my two cents...


    Bookmark   October 5, 2005 at 11:00AM
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McPhinius, if your wife is a stay-at-home mom, she basically is caring for 3 children full-time. You must realize that your mother is like a child. She can't be left alone. If you instruct her on basic safety, such as not touching the stove, she is not able to remember it. So she really is a child.

My mother never wanted to do anything with anyone but me, either (after my father died). I loved her deeply and profoundly, but sometimes I felt like I was under enormous pressure to be her one-person entertainment committee. She never held me back from doing the things I wanted to do, and traveling, but I always felt an obligation to her. And it was an obligation I freely embraced, even though sometimes I got frustrated. My point is that sometimes, like with a child, you have to make the hard decisions with a parent. Your wife needs a break. Your mother needs some sort of services now, either adult day care or a home health aide. I urge you to at least call Elder Services and get some information, to get the ball rolling.

    Bookmark   October 5, 2005 at 11:25AM
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After I put my mother into the NH, I told my college age children that I did not want them to go see her. She would not have known who they were. She never asked about them. I wanted them to remember her as she was when she was able to take them places, carry on conversations with them, not as a pitiful shell that she became. I remember her as she became. They remember her as she was.

    Bookmark   October 5, 2005 at 12:21PM
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Such a difficult place to be....Lack of sleep makes everything worse for all concerned. We had some of this with my mother, but she was not mobile, so that was a difference. I say give it some time; get the UTI cleared sure they do a repeat urinalysis and culture as a "test of cure" since many do not have the classic symptoms. Get the Parkinsons doctor to adjust the meds...dementia is a big part of PD for many, if not all. IF the neurologist is not experienced in dementia, look for a geriatric psychiatrist (ask the Senior Connections or the ALZ assoc.) They can be very, very helpful in managing the "demons". If your Mom has been in your home a while and is comfortable there, moving her will likely exacerbate the problems. Also, have the docotr take a very close look at her medicines, including over the counter stuff. Lots of meds have deleterious effects on the aging brain...even things like benedryl and antihistamines that don't bother the rest of us.
Good luck with all this. Help for the wife seems like a good idea, or maybe a nightime sitter for your Mom. DerryW

    Bookmark   October 5, 2005 at 4:36PM
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I appreciate all the suggestions. So far in two weeks, my mom has had two major hallucination episodes. The first ever, was a day or two before she went into the hospital with the UTI. The second was three nights ago when she said she saw "little kids" on our patio at night. The last two nights, she has slept and not woken anyone up.

This morning though, she was depressed that she has her Parkinson's, etc. And said she feels bad for what we have to go through.

Another thing I did not mention and weighs heavy on us in deciding when is the exact time for a nursing home is that she just turned 66 years old. So she is not really that far up there! And as my wife said yesterday, normally she only spends about 10% of her day caring for my mom. Yesterday, my mom baked brownies, cleaned up the kitchen and wanted to sweep the patio outside.

Now she does require more care than before... She also contributes to our household in the way of paying for groceries, our vehicle which we bought larger to accomodate her as a extra person, and other expenses. I don't mean to sound cruel, but if we put her in a home, we may have to look for another place to live as it is tough to live in South Florida with housing costs.

If she was older, had the hallucinations regularly, etc. Then I would have to make that decission. But as DerryW said, I want to make sure the UTI is cleared up. She is having another analysis done in a few days. Her Parkinson's Dr. is still trying to regulate her meds, etc.

    Bookmark   October 6, 2005 at 6:03AM
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Okay...sounds like she's at the very beginning of her episodes (as was my Mom), so you still may have a good several months or a year with her in that condition. It certainly depends on the individual. Is she on Aricept? It stalls the onset of alzeimers and she could be fine for MANY more years to come! Certainly, 'Google' it here and check into it with her doctor.

Yes, by all means, take it slow, but be observant of your wife and most of all, your children. They could be thinking what if that happens to Mom and Dad? What would happen to us? A good sit-down is warranted here, I believe.

Do you have Power of Attorney for her health and her finances? Best do that now before she may question your intentions later. If she does go into a nursing home, you must have a way of paying for any appliances she may need, etc, when she can no longer make those decisions for herself.
Discuss a 'living-will' with her regarding the measures she wants taken in the event know....

Best wishes, always with your decisions....I sincerely hope it was just the UTI that was causing her such distress...(yes...66 sure seems young from MY perspective!)
Keep in touch with us...We're just the proverbial fountain of knowledge! ;-D


    Bookmark   October 6, 2005 at 6:58AM
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There is a specific Parkinson's dementia. DHs aunt and uncle are both Parkinson's patients, and Aunt Peggy has really deteriorated in the past year. DH's cousin told him that the other day she was telling her how to fix Thanksgiving dinner, as if they were sitting in the kitchen in November, and not in the nursing home. Peggy was seeing the oven the pans, everything.

There is a distinction between Parkinson's dementia and Parkinson's plus AZ.

Here is a link that might be useful: Parkinson's dementia

    Bookmark   October 6, 2005 at 11:00AM
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Go ahead an make sure you have both power of attorney and medical power of attorney now. If you wait until her dementia progresses, you will have to go to court and have her declared unfit. We did this with my dad before his Alzheimer's got bad while he still understood why it would be necessary someday. Another thing we did was help him pick his own NH before he needed one. If it will stress your mom too much, don't include her. But you have to go ahead and start looking. Now you can take your time and make sure you pick the right place for her. Some crisis could make a NH immediately necessary, and you don't want to have to scramble at the last minute. I second that your should contact the elder services in your area. There may well be viable, in-home care options that could delay or eliminate the need for a NH. Now is the time to do your research, not when your mom builds a campfire in the living room or is being released from the hospital in three days and needs more care than you can provide.

You might also want to start keeping a journal to track her episodes. that will tell you when things start to get worse. An episode a week isn't so much, but it may increase gradually and you might not notice. It may also be possible that certain types of events or stress trigger her episodes (This is a guess on my part, so everyone tell me if I'm off-base here.)

66 isn't that old, but her condition and not her age should be the driving force behind your decisions.

Often when my dad is having a good day, he gets depressed because he knows he's slipping and can do nothing to stop it. As hard as it is for me, I try to remember that it's harder for him.

The problem with the hallucinations your mom is having is that you never know when they're going to happen. And you never know what she's going to do. So far, her episodes have been harmless, but tonight she may unwittingly do something that isn't. She may need constant supervision (or "companionship" if that will make her feel better).

    Bookmark   October 6, 2005 at 5:31PM
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Good info above. I have a feeling that she will do OK for a while, and these night episodes will be an occasional event, nonetheless disturbing and disruptive...kinda like nighmares. Sounds like she can be "tuned up". I hope so. DW

    Bookmark   October 6, 2005 at 11:20PM
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i am a caregiver for the elderly,i have been since the early 1980' first reason was, i was caring for my husbands uncle who's children wanted to put him in a NH when they found out he had terminal cancer.this man gave to his children,when they needed money they knew when and where to go,and of course this gentle man never complained and always said good things about them.i being only the neice-in-law to this man became close to him,and as he was dying in a coma i heard one of the brothers say,he always yhought of me as his daughter because he only had boys.after that experience i thought to myself i could get paid for doing work like this, i only have to become certified.and i did,throughout the years and experiences i have had even with my husband and children involved in one particular job(alzheimers),one of my hardest kids were young and all a part of the care routine.they are grown up now with their own children and are good kids,and are always willing to help an older person in need which to most kids these days don't give an elerly person the time of day.i remember being in a grocery store and there was this little old frail lady trying to get someone, anyones attention to reach and get something on a higher shelf she could not get herself,and you would not believe how many i watched either paid no mind or just shrugged away.whats the matter with most of us???? these are our elders,,they are good story tellers if only people will sit down and listen.we all have a past to be able to have a future,and who gives us that chance????.i am trying to be brief about this and it seems that i could go on and on.
anyhow i have been on this one job for approx.7 1/2 yrs. another alzheimers patient,and my experiences on the last several years is somewhat pretty see what this old person is going through with all of the inside bickkering within the family. i study this old person facial expressions and what i see from what i hear from the squabblings makes me wonder,how much does this person really understand and is only not able to communicate with words that can be understood????.we need to pay attention and be careful what we say.this job i was going to leave and did go on another job interview,but when i thought of the reason i was going to have to give was better pay.....thats when i realized that i was going to tough this job out even though it is very stressful for me....i didn't go on another job interview for more money,i guess i just wanred a break...i say to each his own every family situation is differnt and some good people who care more about this elderly people than the money could maybe work someting out with such families as to where these elderly people don't get sent to these homes and can remain in teir own homes...i know it's psossible because one of my jobs i compromised with the family and got paid a certain amount of money,no matter if i worked 80 hours or 10 hours.and i do have my husband to thank for this he stood behind me on whatever i decided,worked at his own job then helped out with other things when he could...i guess you can say god sent an angel 30 yrs. ago to me and i married him!!!!ha ha
my apologies for the words that are mis spelled,i am tired but thought i should post this,i am new in here by the way....

    Bookmark   April 2, 2006 at 10:00PM
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If you can afford a night time sitter it might be more advantageous than a nanny.


    Bookmark   April 3, 2006 at 5:07PM
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Oh Gosh, I am hoping that we are not headed down that road already. FIL has been totally with it mentally (he is 93) although physically he has kidney failure and has been pretty ill since December.

Last night before dinner he was sleeping in his chair while DH was downstairs working out in the gym. I had gone to take DS to hockey tryouts. FIL woke up and called 911 and told them that he had been sleeping for two days. DH had been downstairs for 45 minutes.

Imagine DH's surprise when he hears voices upstairs and comes up to find a police officer in the house and firetrucks and ambulances from 2 towns in the driveway.

DH thinks that they must have the wrong address since he did not call 911 - then checks FIL's room to see him sleeping peacefully in his chair just as he had been before. Maybe he was playing possum, because as DH was walking back down the hall with the Paramedic he calls out to him - and then tells the story about how it is Wednesday and he had been left in the chair to sleep since Monday.

Needless to say, Paramedics did their thing and FIL checks out with perfect vital signs - though they were tempted to take him to the ER because of the severe fatigue. Just what we don't want. (Every time FIL goes to the hospital he gets sicker/UTI's etc.)

I am hoping that we aren't seeing the early signs of sundowners. Up until now he has been VERY lucid.... although sometimes I sense some passive/aggressive behavior and wonder if he really knew what he was doing and wanted to make the point to DH that he was feeling neglected because I had left and DH was working out instead of paying attention to him. There have been other little incidences like that. Do any of you experience any of this passive/aggressive behavior? Any advice on how to address it?

    Bookmark   April 4, 2006 at 6:44AM
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One thing that a lot of dementia patients have in common is that they don't have a good grasp of Time. Yesterday, last week and five years ago, all seem to get jumbled together sometimes. It's so sad and it confuses and upsets them even more because they can't reason out exactly what is correct. The best thing to do is to just work around it somehow and ignore. There's no way you can straighten out their thinking.

    Bookmark   April 4, 2006 at 7:48AM
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my husband has Parkinsons with Dementia. He is only 63 and has been sympomatic for over 5 years. Most of his hallucinations and delusions were harmless, benign, children and small animals. Sometimes quite humorous and we all learned to roll with it. Our teens were rather matter of fact and played along. Then it became a serious issue, he became paranoid and aggressive. They adjusted several of his parkinsons meds and that helped immensely (requip, mirapex, and sinement). He is on Namenda for the dementia and it seems to hold some of it at bay. Its a constant med adjustment but working for now. No improvement lasts forever and most only seem to help for months. Adjust to what today is bringing BUT plan for the future. You will not be able to keep your mom there with your family for always, so work a plan a, plan b, etc. You'll need it.

    Bookmark   April 4, 2006 at 10:21AM
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