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 questions from a newbi 
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Joined: Wed Mar 16, 2011 11:41 pm
Posts: 8
Post questions from a newbi
my dad has lewy, my mom has some health issues (burning hands and feet that make it hard to sleep at night) and is getting worn out caring for dad even though most of the caring is not hard yet (ie physical stuff, he is can pretty much take care of bathroom and bath needs with small assistance).

(how do you deal with this stuff)
"Don't you think you had better start lunch" asked immediately after breakfast and kept up until breakfast, same thing with dinner. same with has she paid the bills, locked the doors, gotten the mail etc.....it wears my mom down until she finally snaps, how do you re direct the ?'s or just ignore them or what?

Getting her up at 4 in the morning so they have time enough to get to the doctor in the afternoon

Last week he had two days straight of delusions/hallcinations where he thought his grandsons wedding party was at their house and the house would never hold all the people. My mom tried to tell him it wasn't happening but he insisted he was talking to the people and was all stressed out.

I guess my big ? is, how do you answer when they keep obsessing on one question.

I am staying with my dad for 5 days in May while my mom goes to grandson's wedding and need to know for myself too.


Thu Mar 17, 2011 4:41 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: questions from a newbi
When my husband was home he did the same things and I found no way to redirect him when he was on an obsessive rant [apparently, redirection works in Alzheimer's]. There is no dissuading them from their delusions so you needn't try to correct them. Seroquel can help with their hallucinations and perhaps your father's neurologist might consider it.

Your mother is going through an awful time and is probably getting very little sleep. If she hasn't arranged for some respite hours to get out of the house or just to rest on a regular basis, maybe you can help her obtain some. It made a world of difference to me. It's nice that you are staying with him so she can get away for the wedding. God bless you!

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Thu Mar 17, 2011 9:50 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: questions from a newbi
Laurie,

I've just posted something which may help with the repeat questions part of your post:
viewtopic.php?f=13&t=2846

About the doctor's appointments, no mention should be made of a doctor's appointment until the day of the appointment -- a couple of hours before you leave.

You can't talk someone out of a delusion. It's not worth the effort to try. The key is redirection.

There are lots of classes in our area at senior centers and adult day care centers where they teach caregivers tricks for dealing with dementia-related behavior. Can you find out if there's such a class in your area?

Robin


Thu Mar 17, 2011 11:03 am
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Joined: Sun Oct 04, 2009 10:18 am
Posts: 276
Location: Washington State
Post Re: questions from a newbi
Laurie, does your Dad have a neurologist with a good background in LBD? In my LO's case, getting medications balanced helps with anxiety and hallucinations (but not delusions). If you Dad is a veteran, Dr. Leverenz at the VA hospital in Seattle is excellent.

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Annie, daughter of brave Marie, dx 2007 and in ALF


Thu Mar 17, 2011 11:09 am
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: questions from a newbi
If your Mom is having burning hands and feet, she may have back - spinal - problems. Has she talked with her doctor or a neurologist? There are some non-surgical things they can try right away if indicated, but if your Mom is doing some lifting, even helping your Dad to stand, she could be making her situation worse. If she hasn't already, urge her to talk with her doctor. (These were some of the symptoms I had before I had back surgery.) And a family doctor might not take it as seriously as a neurologist. So be sure she tells the doctor about her caregiving activities and detail the physical things she does for your Dad. Even the "simple" things.

Kate

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Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]


Thu Mar 17, 2011 1:08 pm
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: questions from a newbi
robin wrote:
You can't talk someone out of a delusion. It's not worth the effort to try. The key is redirection.
Dale's primary symptom in the earliest days was delusions, often in the middle of the night. With Dale, what worked was getting someone else involved. A male neighbor would walk him around the house until he was calm, I also called my sister on the phone who would talk with Dale and let Dale 'talk it out.'

We also used Seroquel 25 mg. on occasion.

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Thu Mar 17, 2011 2:24 pm
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Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post Re: questions from a newbi
With my Dad, we don't tell him of anything that will be a change in his routine, until the last minute. That way he doesn't have time to dwell on it and get upset. This is in regard to doctors appts. or even visitors.

Dad also gets obsessed about dinner immediately after breakfast, etc, and I just say, 'sure, no problem Dad, I'm doing that now'. I think when he thinks I am doing what he feels 'needs' to be done immediately, he relaxes. Dad is not very mobile, so he doesn't know if I am doing as he says, but he believes I am doing it and it works. Just agree with everything - difficult at times, I know, but it works for me.

As regards to his getting worried about all the guests, what we would do in that situation, is think to ourselves, what would we do if this was actually happening, and come up with a solution. For example, say the neighbours have offered to help feed some of the guests, or they can stay at the neighbours house, or some of the guests have RVs and will sleep in them. I find the next day that my Dad will have completely forgotten about the whole thing, but the idea is that he relaxes because the situation is resolved in his mind. When I did this kind of thing in the beginning, I used to be afraid he would remember, or felt bad for lying, but it was actually in his best interest as he would calm down when he thought his imaginary problem was solved. Dad is also on seroquel, and I find them great when he is having a bad day.
I wish you well on this very difficult journey.

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cared for Dad who passed away on January 28th 2013 R.I.P.


Thu Mar 17, 2011 5:06 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: questions from a newbi
Good advice, Ger! Never tell them about an appointment, visitors or any other event [like leaving for a few hours of respite] ahead of time. Wait until the time is upon you. Otherwise they will stew about it for days or hours.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Thu Mar 17, 2011 6:56 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3432
Location: Vermont
Post Re: questions from a newbi
I think you've already been given some great advice by others. I too would sometimes make up answers so my dad would stop obsessing with the same questions. There were periods of time where he'd ask how his investments were doing (despite the stock market plummeting a couple of years ago) and I'd just say "you're really such an astute investor, your money is fine" even if it wasn't. It would not have done any good at all to give him a bunch of details or bad news. I might have to tell him that several times in one morning, but it would satisfy him for a while.

I made sure not to tell him about any work that was being done to his house because that would have been very upsetting to him, even though I was doing things to protect his investment in his house.

Sometimes he'd be delusional, like the time he thought my youngest son had been living down the hall from him in the ALF but hadn't visited him the whole time he was there. He was extremely upset about this, so I very calmly said "Dad, you are a little confused today. John has been working in Vermont all summer, except a few weeks ago when he was here to see you with me. He has not been living down the hall from you." He finally accepted that, but reluctantly.

I tried to avoid arguments at all cost, and when he just wouldn't give up on something that eventually wore me down, I'd either take a walk or leave for the day. Some days you just cannot win. Lynn

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Thu Mar 17, 2011 10:40 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: questions from a newbi
I find that with my husband it is helpful if I write down the schedule for the day if there is going to any thing out of the ordinary in it. If we are going to the doctor, the schedule shows when we will get up, whether we will eat before we leave and if so when, when we have to be in the car, and that we will eat out afterwards if that is part of the plan. I post this on the bathroom mirror before we go to bed. If he gets up in the night he can see it then, too, and not have to wonder if he is supposed to get up at a different time because of the appointment. But Coy is not at a point where knowing about an appointment is upsetting to him, so discussing it in advance is not a problem -- only remembering what we discussed is. The reminder schedule is helpful.

If this didn't work, I would simply not tell him in advance (and that is very good advice for many people with dementia -- you have to know what works for your own LO). If he doesn't know he has an appointment at 3 pm until 2 pm, he won't be waking me up at 4 am to get ready! :P

I like Ger's suggestion about agreeing to start lunch right after breakfast. No harm done! If your dad is more mobile and harder to redirect with this little creative solution, how about, "Yes, that is a good idea. We are going to have soup and tuna sandwiches. Come into the kitchen with me and I'll cut up the carrot sticks so they will be ready." When you are done. write a big note saying, 11:45, heat soup and make sandwiches. Ask him to remind you when it is that time. Next time he tells you to start lunch, say "hmmm ... let's see that note. Oh yes, I need to start lunch at 11:45. That is in 2 more hours. Can you help me remember?" Of course, you may have to repeat this 6 times before lunch. It may help to remember that this repetition is not harmful to him ... it just drives you (or your mother) up a wall! :roll: You can't control his questions, but you can try to control your reactions.

I like Ger's practical advice about "solving" the worry about guests. One wife in our local support group had to deal with her husband's frequent hallucinations and/or delusions of children in the house. She assured him that it was OK not to set places for them at the table because their parents were coming for them soon, or they were going to eat on trays in the family room because they were watching a nature show for homework, etc. She was quite imaginative in solving her husband's imaginary problems.

Once you understand and accept that you can't talk your LO out a delusion or an obession or a hallucination, reactions are a little easier to manage -- at least I think so.

Blessing on you for giving your mom the respite of the wedding. And don't worry, you'll do fine!

_________________
Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Thu Mar 17, 2011 11:04 pm
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Joined: Mon Jun 21, 2010 2:24 pm
Posts: 32
Post Re: questions from a newbi
Last night we had a similar experience. My husband woke me at 4:00am insisting there was a fish hook in the blanket. And just 2 weeks ago he woke me about the same time insisting there was a key in the same blanket. While looking for that key I had to cut the blanket open to show him there was no key.(But this lasted about and hour and a half, with everyone exhausted!) I learned my lesson the hard way! Last night, I went to where we keep the fishing tackle, found a small hook, found a pair of pliars, went back to the bedroom. I pretended to be searching for the fish hook, suddenly found it, (in my hand of course) used the pliars to pull it out of the blanket. Showed it to him, but said 'dont touch it, it might be rusty', and he went back to sleep in 5 minutes. Of course, it was 2 hours before I could get back to sleep. But the important thing was, HE WAS SATISFIED that the fish hook was gone and he could relax. Sometimes it is the simple way we handle things that mean the most. Not only for our loved ones, but for us too. I made up for my sleep by sleeping late, as he does every day!


Sun Mar 20, 2011 3:21 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: questions from a newbi
How clever of you, Misty! I love it!

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Sun Mar 20, 2011 3:56 pm
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: questions from a newbi
That is clever, Misty! I remember serving imaginary coffee... complete with sugar and cream... to imaginary visitors in the middle of the night. I'm sorry you are needing to be clever, however. That was a difficult time in our journey. I sympathize.

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Sun Mar 20, 2011 5:14 pm
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Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post Re: questions from a newbi
He, he, very clever Misty. We will all have earned imaginary degrees in imaginary lifestyles. :lol: I am glad to hear that I am not the only one to tell little white lies to make life easier for us all!!!

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cared for Dad who passed away on January 28th 2013 R.I.P.


Sun Mar 20, 2011 5:25 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3432
Location: Vermont
Post Re: questions from a newbi
Ya gotta do what you gotta do! Great ideas and I'm sure there will be others out there who can use your great ideas, whether white lies or not. Whatever works. Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Sun Mar 20, 2011 10:40 pm
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