<p>Since we are talking about cognitive capacities, I think I’ll mention again the neuropsych testing that we had done on mom. It helped not only to quantify stuff for us, as in the areas she has most trouble with (learning and understanding new tasks, executive functions…) and to also have her get a good, realistic glimpse of her weaknesses. It helped a bit with the denial. and we will do the test again in a year to determine how fast things are progressing. I find it hard to tease out personality from the dementia. Mom was ALWAYS and airhead, so how much is just that and how much is truly dementia! And no matter how much i explain that the Aricept is supposed to maybe help the disease to not progress as fast, she still seems to think it will just make everything better…</p>
<p>Thanks travelnut, worknprogreess2, lasMa, eso and all. </p>
<p>my3gr8boys-
To answer your question, its feels weird, still, even after 2 years. Maybe because I still have to do some final paperwork/bills etc to get the estate closed (taxes, etc). I visited with our old neighbors in their winter place in FL when I was down there recently, and they told me a bit about their new neighbors. Then, in the mail came a few things that the new occupants found when they removed some bookcases. Was a weird flashback to my childhood! And writing them a thank you note, addressing it to different people at “my” address was weird. </p>
<p>Glad you found your mom’s neuropsych helpful, my3gr8boys. Makes it worthwhile when its appreciated :)</p>
<p>my3gr8boyz: My mother doesn’t complain about aches, pains, or medical issues every time I see her. In fact, most of the time, she says she’s fine, so when she does complain I’m assuming it’s real and signficant. She just doesn’t tell the staff, even though she communicates with them about needing to use the bathroom, not having her hearing aid, etc.</p>
<p>Seeing her less frequently isn’t really an option either. At a nursing home, no matter how good the facility, the staff needs to see you, have contact with you, and know that you will follow-up with them on whatever may be going on. There are good, and some great, staff at the nursing home, but some are less than stellar. Some take more interest in the well-being of the residents, while others are just going through the motions. And like alot of institutions that receive state/federal monies, they’re sometimes more concerned with looking good on paper or following government guidelines than with the residents’ best interests.</p>
<p>Hugs to jym. You are a wonderful daughter.</p>
<p>my3gr8tboyz - I am intrigued by the neuropsych testing, especially the executive functioning part. My mother is showing some signs of decline, although she still looks and acts like she knows what she’s doing. The only thing I know about executive functioning is what I’ve read on other threads regarding our students. How does it manifest itself in senior citizens? Sometimes I feel like I’m dealing with an elementary school child who is still stubbornly holding on to adult responsibilities. Its a little scary.</p>
<p>Thanks, Mansfield.
And you did a good job of describing executive functioning. I describe it as the way we plan our work and work our plan. In older adults, impairment can effect judgment, planning, problem-solving, and can manifest in behavioral changes that can make the person less diplomatic, more impulsive, or childlike. They may make bad decisions, act inappropriately or do something that you find embarassing or uncomfortable. Its like their filter has been removed. Does that help?</p>
<p>How or who do you see to get a neuropsych eval? Mom was finally released from the hospital today and is now in rehab. I still can’t tell how much she’s lost cognitively due to her stint in icu vs a natural decline. She’s also one of those that won’t ask for any medicine or will wait until the pain is beyond controlling.</p>
<p>You see a neuropsychologist to get a thorough evaluation done</p>
<p>Mom’s primary, who had been following her for years and could see the decline, referred her to a neurologist first, to look for biological issues (apparently she has had a mild stroke before, showing up as something I cannot remember the name of on the MRI. shoot. it’ll come to me some time when I am away from the computer!) So the neurologist had a good medical study as reason to have the neuropsych done. He also ordered doppler testing on her carotids, just to make sure there was enough oxygen flowing to brain. I think that was mentioned above that lack of oxygen to brain contributes to the dementia. </p>
<p>I need to get another copy of the full neuropsych test, which took about 4 hours by the way, the first hour and a 1/2 of which is interview with a family member present. She asked mom all sorts of questions about her life, and I was ‘allowed’ to correct her when necessary. (I even called the doc after the whole thing to fill in a few more details that I didn’t want to say in front of mom). Then I was out of the room for the rest of the time while she performed all sorts of oral and written tests, the results of which were normed against other 81-85 year olds. So when mom is in the 8th percentile for something, she might have thought it was because she was getting old, but it’s actually the 8th percentile when compared to age peers! (she doesn’t really understand the results) And for some odd reason, “impairment” is only defined as the first percentile! She had several <20 percentiles and two first percentiles, both in areas related to driving, so that was essentially when she stopped driving. Driving involves too many of the things that jym mentioned, like judgement, planning, speed of noticing things, etc. They also do a basic IQ test (hers was 106 and I do wonder if it really would’ve been that same number when she was younger… I’m a bit spoiled with my kids IQ’s, percentiles, etc. When I was a kid, I thought everyone got 99 percentiles on everything! 
)</p>
<p>Shellfell - I think I got confused and thought your mom was in assisted living. Rehab/nursing homes are way different… I TOTALLY know what you mean about some people caring and trying and others just going through the motions, and some not even that! </p>
<p>Chuckle - does she seem worse now in rehab than before the original hospital stay? Sometimes events like these can sort of jump start the dementia. I thought my dad’s big problem at the end was his aphasia and anger because we couldn’t understand his words and he couldn’t understand ours, but the hospice nurse said it was mostly the dementia causing him to act that way, dementia that was suddenly increased with the stroke. </p>
<p>Someone, and I’m sorry I don’t remember, mentioned having a severely aphasic mother? or MIL? I’m wondering what approaches you use to communicate with her, and what kind of aphasia? Wernike’s? Brocca’s? Is she aware of it? Does she have speech therapy, and if yes, does it help at all?</p>
<p>Great info on the neuropsych evaluation. I think my mother should probably have one, but it would be a very hard sell to get her to go. Her planning skills stink; they’re practically non-existent. She has also become somewhat immature and childlike in her responses to challenges. At times she seems befuddled. Its like dealing with a disorganized, moody middle school girl. Some of this could be caused by the stress of dealing with my dad (who has late stage Parkinsons). However, we have a virtual army of helpers who deal with my dad. She keeps trying to step in and make decisions for him that aren’t well thought out. Then, the rest of us have to step in and tactfully “undo” everything.</p>
<p>The neuropsych evaluations are great but can still some pitfalls. When my Mom first went for her evaluation she went with my Dad … and somehow, they both managed to miss the diagnosis of Alzheimer’s … my sister, after talking to my Mom’s doc (who could not divulge specifics) had to convince my parents to talk to the doc again to clarify the situation. Then on later visits after they knew the evaluation process they would prep/practice for the exams so my Mom would “do better”. The whole path was pretty interesting as we dealt with my parent’s denial … thankfully we had my sister who kept my Mom’s path on track. PS - after the somewhat rocky start my parents bought into the evaluation and the neurologist who they liked and trusted … especially after they realized her suggestions and treatment were helping.</p>
<p>Are you sure your mom had a true neuropsych, 3togo? Some physicians do a cognitive screener (either a mini mental status exam or a computer based exam like neurotrax) that is different from a comprehensive neuropsych evaluation. One really cant “practice” for a complete neuropsych, but one could rehearse basic orientation and screening questions. If they are in the early stages of a dementia they may look ok on a screener.</p>
<p>HImom –</p>
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<p>You hit the nail on the head. This is what I’m going through with my mom. I keep telling her she needs to be assertive and pro-active with her doctors in order to get good care. I believe many from her generation don’t want to challenge or question their doctors.</p>
<p>I can’t go to appts with her because I live over 300 miles away. I have asked her to take a list of questions with her, take notes during the appt, and get copies of all lab work and test results. She refuses. She won’t even agree to have a relative accompany her to her appts. Sigh.</p>
<p>aquamarinesea- Will she agree to have a designated relative be allowed to speak with the drs.? That would help. If I were told no to this, I would contact the drs. office and ask if they are comfortable explaining release of information procedures to my relative and normalizing their wish to be able to contact a family member if indicated. The context may help her see the wisdom in it.</p>
<p>Good luck. It is so hard when all people want to do is help and elders are in so far over their heads. Not everyone can keep track of super-complex medical histories, meds and reactions, symptoms, etc. well into their 80’s.</p>
<p>Just read in this morning’s paper about a new movie, Amour, which might resonate with many here about how suddenly things can change overnight, like many lives of those in this thread.</p>
<p>
It was this … they practiced simple questions like the date, siblings names, etc … and during the interview my Dad would help answer questions … nothing that faked out the Doc … it was more a comment on my parent’s behavior and trying to have “better” results instead of providing totally honest input … the Doc was great and worked around my parents.</p>
<p>PS - and the comment about my sister helping appeared short in the response above but was HUGE in providing care for my Mom. When my parents primary care physician retired my sister guided them to a GP who specialized in treating seniors and to this neurologist … and my Mom’s care immediately improved a ton … without my sister I hate to think of how the last 4 years or so would have gone for my Mom.</p>
<p>Our docs have known us for decades and have been willing to be flexible with HIPPA and speak with us. It’s best if you can get your loved one to sign a release of info, so that you can speak to clarify issues, but we have been very fortunate that our docs have been willing to explain things even without the written documents. Explain to your loved one that if they sign to allow you to communicate with your healthcare providers, it will make it easier to be sure billing and other things are done correctly as well. Good luck to all dealing with this.</p>
<p>OK… I just got off the phone with my mom and I blew up at her. Yep, I’m horrible. But it was a horrible afternoon with my husband and son, full of self-centeredness, immaturity, resentments, the works. I was crying for hours. I still had to call mom tonight to give her a phone number, and when, for the umpteenth time she went on about how the other patients in her physical therapy group “can’t do anything” and how the therapists are SO glad to have my mom in the group because of how well she does, I just lost it. Then she said, “But they really can’t do ANYthing” and I yelled “So WHAT?? Does that make them worse people? Does that make you a better person??” She (now yelling back) said “I’m not putting them down!” I said “How is what you said not putting them down?” to which she said “I’m not putting them down because you THINK I’m putting them down and I’m not” That was the point where I thought about all you guys, and the mutual understanding that our parents CANNOT understand. They’re not being stubborn. They just don’t understand reason and logic. I could explain it 12 different ways, and she still won’t get it. I apologized for my mood and my really bad day and said would be better in a few days. The last time I blew up like this was prob 5 months ago, and by the next day, she seemed to have forgotten about it… I’ll apologize again, but I’ll have to be stronger. I just couldn’t handle all the teens and adults acting like children today. But then again, I guess I acted like one, too…</p>
<p>mygr8 … HUGS! Love is the only thing big enough to cover the pain in the world.
Sounds like your day sucked. Except for the crying and yelling at my mom (yelled at H instead, happy V day not so much), your day sounded similar to mine.
Mom didn’t call to say she got her package, but USPS said it was delivered. She is trying to do OK, but finances are a big issue with us right now.
And my stomach hurts all the time.</p>
<p>And it is OK to cry somedays. It will get better (and worse) but you are doing a great job. You have to take yoga or yoga breaths and know you can get it done bit by bit.</p>
<p>I hate the phrase, but really I do feel your pain.</p>
<p>Don’t beat yourself up. You are trying to apply normal standards of behavior and expectations to a cognitively impaired mother and emotionally impaired husband/son. They are all wonderful and I know you love them, but right now its not working. You ARE strong, but you’re also human and not horrible. I’ve had days like yours. Cry away. Its okay.</p>