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 Weird "projects." Is this a form of hallucination? 
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Joined: Fri May 28, 2010 4:46 pm
Posts: 119
Location: Salem, Oregon
Post Re: Weird "projects." Is this a form of hallucination?
I think my dad is in a bit of denial, but I do see him facing reality a little more all the time. He has always been so proud of my mom's accomplishments as a nurse, and I think he is having trouble letting go of that identity for her. He is also very concerned about preserving her dignity, so he's afraid to treat her like a child. I told him that allowing her to be in control of her medications, though, makes as much sense as me allowing my 9-year-old to be in charge of his, especially if he took that many!

She only took Ambien for a short time when adjusting to her CPAP machine. At that time, we didn't know she had dementia yet. We were still hoping it was only sleep apnea causing the symptoms we saw. That was almost 2 years ago. I do go to most of their doctor appointments with them. It's been hard because they count against my sick days at work, and I went over last month so lost some pay.

The last time I brought up a caregiver to my dad, his response was to hire someone to clean the bathrooms. Not exactly what I had in mind, but it's one step closer to getting adequate help. My sister and her 2 teenage daughters just moved in with my parents for 2 weeks while their house is being renovated. After that, I'll talk with him some more about hiring an actual caregiver to come in. Meanwhile, I'm a teacher, and my last day was yesterday so I can help him for the next 2 months.


Tue Jun 21, 2011 1:44 pm
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Joined: Thu Apr 21, 2011 9:07 pm
Posts: 247
Post Re: Weird "projects." Is this a form of hallucination?
Hi Sandwich Mom,
You are definitely earning your sign-on! Not to mention the caring role as a teacher. Glad you have a two-month stretch to catch up and, maybe, catch your breath?

I'm on faculty at the med school (PhD, not MD); the downside is that I don't get that summer break. On the positive side, they don't count the time I spend carting my folks around to doctors at the med school as "vacation". Partly because I'm here so much of the time anyway, and partly because even when my mom was in the hospital and I was supposedly helping her, the various fellows and junior faculty who needed me would just find me in the hospital and come ask their questions. They are all extremely kind and helpful to my parents, but every time one of them gets a new doctor, I get another couple of proteges to mentor. But it really has been helpful to go to all the doctor appointments. I also have electronic access to the medical record forms and appointment and contact information they provide for patients, plus direct access to doctors as a colleague. And it is STILL an adventure trying to keep track of it all.

My dad is, like yours, trying to keep my mom's identity alive as a thoughtful, professional, grown-up person (she was a speech and hearing therapist/ pathologist). You can still have a conversation with her about her work, her memories, and her interests over the years. She will tell me why it's important for people with hearing aids to wear them, and she can make a persuasive case on medical and social grounds. But then she doesn't put her own hearing aids in! (She laughs about this and shrugs her shoulders, and says she knows she should do it, but somehow "I just didn't get to it".) Drives my dad cuckoo.
Laurel

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Laurel - mother (97) diagnosed April, 2011, with LBD; died May, 2014.


Tue Jun 21, 2011 9:27 pm
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Joined: Fri May 28, 2010 4:46 pm
Posts: 119
Location: Salem, Oregon
Post Re: Weird "projects." Is this a form of hallucination?
I invited my parents, sister, and nieces over for dinner tonight. My sister showed up first, and told me that my mom has fallen every day so far that she's been staying there while her house is renovated. She has an ugly scrape on her forehead and nose, and her glasses are terribly scratched from falling on her face. She said Mom is getting up repeatedly in the night, and keeps getting her bedtime medication out as if to take it. Dad can't get a clear answer out of her about whether she forgot at bedtime or not. My sister said she's up several times during the night for various reasons but seems fixated on that one medication right now. She said that my dad checks her medications each day to see if she organized them correctly in the daily cases, but that they're always wrong. Her medications are within Mom's reach, and he told my sister that he knows he should lock them away from her, but he's afraid it will upset her. When they left tonight, Mom headed out the door without waiting for anyone to help her and began to fall just stepping over the threshhold onto the porch. I had to grab her, and then my husband helped her down the stairs. It's so scary and frustrating. I am afraid she's going to kill herself with a fall down the stairs or by overdosing. I really hope my dad will make some decisions soon that will be a help to both of them. I don't know how forceful to be. I'm afraid of alienating my dad.


Tue Jun 21, 2011 11:33 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Weird "projects." Is this a form of hallucination?
Sigh. Poor, poor Dad. Poor Mom. Poor SandwichMom. What a very painful web this disease weaves! Do you go to any local support group meetings, SM? Is there some way you can expose your dad to more information about ol' Lewy? About the new role caregivers have to take on, whether they want to or not, whether they're ready or not?

The week Coy was diagnosed with "confusion" I bought a lockable case for his drugs. I kept it out of sight. Yes, for Dad to control Mom's drugs will probably upset her. Not controlling them could kill her. Sounds like a no-brainer to me. But it is very, very painful and hard to have to start treating your equal like a child. Hugs (and a lockable case) to your Dad. I think letting Mom organize her pills might be a kindness, as long as he carefully re-organizes them correctly behind her back. I will say (from experience) if the pill list is extensive that is a very high risk practice. It is hard to identify all those pills once they are out of the bottles. But if there aren't so many it might help her maintain her dignity.

The falling is a huge concern, isn't it? Do you think it is because Lewy has messed with her depth perception? She can't really judge whether the separation between rooms is a step up or a step down or flat? Is it a balance issue? Does she suddenly lose muscle tone? Does she fall even when she is using a walker? All LBD falls are not created equal and don't respond to the same treatments. Someone should very carefully observe the exact nature of her falls, to report to her doctors. This is not easy when you are desperately trying to break the fall, I know, but perhaps when there happen to be two people present they can piece it together between them.

Many hugs to you dear SandwichMom. Both your mother and your dad are lucky to have you!

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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


Wed Jun 22, 2011 12:25 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Weird "projects." Is this a form of hallucination?
SandwichMom,
Perhaps you can speak to one of the MDs involved and see if a social worker from a home health agency can come over and SEE/HEAR what's going on. It often works best if an outside third party such as a social worker or MD tells the family and care recipients what needs to happen for everyone's safety.
Robin


Wed Jun 22, 2011 1:43 am
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: Weird "projects." Is this a form of hallucination?
Jeanne, I agree that trying to reorganize pills is very difficult, especially if there are a lot of them. While she was still at home, I organized my mother's pills for her, and once she dropped an organizer. It took me forever to figure out the pills. The only safe way seemed to be to sort them back into the pill bottles by matching them with the ones in the bottles, and it was very tedious. I'm sure it will be hard for Sandwichmom's dad to take this responsibility away from her mom, but it sure would be safer.

Robin, that's an excellent point about getting whatever professional in to see what is going on and make recommendations. The advice might be a lot easier to take if it comes from the doctor, SW, etc.

Sandwichmom, hang in there! Your parents are so lucky to have you helping them.

Julianne


Wed Jun 22, 2011 9:23 am
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Joined: Fri May 28, 2010 4:46 pm
Posts: 119
Location: Salem, Oregon
Post Re: Weird "projects." Is this a form of hallucination?
After our last doctor appointment, I thought the doctor had set it up for an "occupational therapist" to come into the house and do a safety check. Later, when I asked my dad about it, he said that he took her somewhere, but no one had come to the house yet. He thought maybe that was going to happen later, but I don't think it has. Or maybe it did happen and Dad didn't like what they had to say so hasn't told me about it. I need to follow up on that.

To make things worse with Mom mixing up her pills, my dad is color blind. My sister said she had to help him identify what one of the pills was because two of them were only distinguishable from each other by color. I am concerned, obviously, but every time I bring it up, my dad just says he'll do a better job of checking. He is a very intelligent man with his full mental capabilities, so it's more of an avoidance/denial thing for him.

My sister says he keeps deferring to Mom--whatever she wants, he'll do, even if it isn't the best idea. I think it's sweet, but it causes him extra problems. For example, for her birthday, she wanted a cake that served 100, but there were only 9 of us to eat it. He compromised with a cake that served 50 and tried to get me to take all the extra home. I refused to take it because I don't need that temptation in my house. I wapped it up and put it in their freezer (where it is likely to stay until it's no longer edible).

Her falls seem to be a balance issue. This was one of her earlier symptoms. They used to be once a month or so. Now it's more like once a day. Even the pressure of Dad drying her hair with a towel will make her fall. He has to remember to have her sit first. She won't use her walker, even though we got one for her. She'll take my arm when we are together, and that steadies her enough for now.

This all just makes me so sick at heart because she's only 67, and she was very smart and in great physical shape before this happened.


Thu Jun 23, 2011 7:49 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3406
Location: Vermont
Post Re: Weird "projects." Is this a form of hallucination?
I'm so sorry for what you all are going through. It is a very tough situation. Sending a big hug, 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 Jun 23, 2011 9:01 pm
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Joined: Fri May 28, 2010 4:46 pm
Posts: 119
Location: Salem, Oregon
Post Re: Weird "projects." Is this a form of hallucination?
Thank you, Lynne. Hugs back to you. We're all going through it in at least some way. It helps to know I'm not "alone", even if you all are only cyber pals. We do not have a LBD support group in my town. In fact, I've only heard of 2 other people with LBD in this area. I'm sure there are Alzheimer's support groups, and I'm sure I'd be welcome. I don't have time for that, though. I do go to counseling every other week to help me deal with my grief and anxiety about the future. I'm also surrounded by a large extended family who have been very supportive.


Fri Jun 24, 2011 2:19 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Weird "projects." Is this a form of hallucination?
Sandwich mom,
I am so glad that you have much family support and that you are trying to take care of you too !

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Irene Selak


Sat Jun 25, 2011 8:00 pm
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