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By lostdaughter On 2009.01.06 11:35
We see Mom's neurologist this afternoon & I will insist she be tested for dementia. She's been showing signs of improvement on a daily basis since being hospitalized right before Christmas. A lot of that has to do with the fact that she hasn't been left alone. We tried leaving her alone in a room while sister took a shower. As soon as she thought it was "safe" she was up sneaking to smoke a cigarette. We all know she smokes, understand that she doesn't want to do it in front of us & have told her we'd accomodate the situation. She'd rather sneak & lie about it. I struggle so much with the fact that she can carry on an intelligent conversation about most anything but can't remember that she promised not to be walking through the house without someone with her. She's one of those PD patients who can present herself in far better shape at the doctor's office than she is at home so the neuro isn't going to see the same person we deal with day in and day out. I hope we're able to get a clear understanding of her mental status once the dementia testing is done. I've been so sick the past couple of weeks from my nerves being shot. I hope so much that I'll come away from the appointment today with a little feeling that we can make some progress.

By Tara On 2009.01.06 18:59
I'm right with you, LD. My dad is going in to do the same on January 22. I am going to speak with the person administering it the day before to get an idea of what it will be like, and have a copy of the results sent to me. Dad is still at the stage where he goes in and out of coherence. I'm determined to not to let this catch me unprepared.

Stay strong, girl! And take a well-deserved mental break.

Please let us know how the test comes out.

By lostdaughter On 2009.01.08 13:52
Mom's neurologist gave her a short memory test that he assured us is very reliable. She passed with flying colors - missed one question. At the present time doc's opinion is that we're dealing with obstinance, which is what I already felt in my heart & mind. He told mom that he strongly suggests she try to cooperate with her family, that we're doing what we are because we're concerned for her safety. She just sat there. She takes 8 mg Requip XL in the AM & neuro added 8 mg later in the day. He hopes the extra meds will help with her balance issues. We have a sitter with her during the day right now but we can't afford to continue that long term. She's still trying to sneak to smoke with oxygen in the house in spite of our warnings & tales about what can happen. We may have no choice but to have the oxygen removed from the house. It makes breathing easier for her but it's not something she has to have to survive. Since she's so hell bent on doing what she wants she may have to wheeze so the rest of us can have a little peace of mind. I intend to document any behavior that sister & I feel might indicate dementia so we can present it to the neuro next visit (or before, if necessary).

By susger8 On 2009.01.09 09:59
That's interesting that she passed the test (I'm guessing it was the Mini-Mental Exam). My dad had some very obvious problems with some areas of the Mini-Mental, some that I was already aware of and some that surprised me. I think it is a pretty reliable test, as long as her mental status during the test was reflective of her usual abilities.

By rajenriver On 2009.01.10 11:01
Every time my FIL went to see a Dr, or went to the ER for his pain, they give him a version of this mini test. He always asks me what month it is or who the president is. He has had this test so many times that he prepares himself for it.

One time they told him to repeat three animals. He knew that later in the test, they would ask him to repeat them, again. He kept thinking about them during the test and was able to remember them when it came time to repeat. He was quite proud of himself.

Unfortunately that next night, he hallucinated the same animals parading through his living room!

By annwood On 2009.01.10 12:37
I have little faith in the mini mental exam and it is somewhat subjective. It is ok for a screening but does little to actually test processing. I know for a fact that they quickly learn what they will be asked and accomodate that. The neurologists are researchers first. My husband could have been urinating on the wall of the office (as he did a few times at home) and if there wasn't a blank asking that questions it would have been ignored. We all are familiar with the pts ability to "get up" for a physician appointment. They are always on their best behavior for that. Even in oncology I would see pts who were at deaths door, who had called me several times in a week to tell me how sick they were and then when the physician would ask them how they were doing they would smile and say that they were doing pretty well. There is a perception that we need to please our physician or he won't take care of us. Maddening if you are the caregiver or nurse who has been telling the physician otherwise.

I imagine that an individual's pre PD personality influences how they behave but I really don't think many of the PD pts are just being obstinate. I really think the dementia affects each individual differently but I also think it is real and that the caregiver is wasting time and energy in any attempt to modify the behavior. As I have said so many times, act as if you are dealing with a 2yr old.

By lostdaughter On 2009.01.10 14:02
I'm not convinced that what we're dealing with is 100% obstinance either. Mom's neuro made a passing remark that "it's part of the disease" & I've always felt he doesn't pay enough attention to the big picture. He is most concerned with mobility. That is important but sister & I are the ones who have to deal with her when she's able to walk well enough that she roams through the house but can't or won't tell us why. If we question what she's doing she gets defensive. I've realized this past week that she gets up & roams more every time she starts to feel better after one of her bad falls. I think many of her falls have happened when she was just roaming from one room to another with no purpose. We've had a sitter here the past 3 days & I was able to function at work so much better knowing mom was safe. We can't afford what we're currently paying for very long & that worries me a great deal. I wish we could find someone trustworthy without going through an agency. Sister is still doing most of the caregiving & I feel a certain amount of guilt with that. I constantly remind myself that this is her decision & I try to make it clear I'm willing to help as long as I'm not asked to sleep on the floor (which sister has been doing since Christmas). Mom has said several times recently that she wishes she'd planned for the day she'd need care but that she never thought about it. I did think about it & thought building my addition to her home would make caring for her possible. Where I failed was in not realizing how stressful & expensive this would be.

By annwood On 2009.01.10 20:16
Good caregivers are hard to find and the agency people are the most expensive route. I hope that you are able to get the same person each time because PD pts seem to not do well with different people. I was fortunate to find two ladies who had cared for a retired physician across the street for 8 yrs. I knew them and when he died it was just about the time I needed someone. Both were LPN's and alternated shifts for $15.00/hr. I would suggest that you talk to people who might have had a similiar situation. Check with Catholic Charities they often have sitters or the Council on Aging may also have names. Check for references before hiring someone.

Another idea for your sister - get one of the Aero inflatable beds. The new ones have a head board and they are fantastic.

Get used to the guilt - it just goes along with caregiving. Do what you can and realize when you can't do anymore.

By Tara On 2009.01.10 20:16
Thanks for the heads-up about the Mini Mental. I've seen the questions for that test, and at first I couldn't believe it. What state are we in? What year is it? I thought, "If someone doesn't know the answers to these questions, then they are -- or should be -- in an institution."

When I take Dad to get his test, I'll make sure that the assessment is more thorough than just to see whether or not he belongs in a nursing home immediately. Testing like this should be done while keeping in mind that just because someone knows, for example, what year it is does not mean they are not at some level of dementia.

(On a side note, since his test will be done two days after inauguration, I'll be surprised if he names Obama as president!)

Thanks, also, Carol, for reminding me of Catholic Charities. I've gotten very good help from them before, for other purposes, but I had forgotten about them. Very good, helpful people!

By Mary On 2009.01.19 16:20
Rajenriver, I had a giggle over hallucinating the animals parading through the living room. Sometimes that is all we can do but laugh and it feels very good to laugh...sorry it was at your expense!

I read through the responses on dementia and agree that my Dad prepares himself for the neurologists questions on what year? president? day? etc. I told the neurologist that Dad's short term memory is failing and he had no response for me. Does anyone know if dementia starts that way? His long term memory is still good.

Thank you, Mary

By lynn On 2009.01.19 22:11
Mary. You asked how to tell when dementia starts. I thought for sure my husband had the beginnings of dementia. He had a very thorough neuro-psychiatirc exam and they concluded he had mild deficits. I think major personality changes, aggression, and verbal attacks would indicate dementia. Short term memory loss wouldn't qualify.

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