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<p>I did exactly the same, oldmom. It has cut down on the confusion.</p>
<p>Oldmom - yes, my plan is to change the number for their doctor visits to come to me. And yes, I think she was anxious about going because it was at a large hospital and concerned about getting lost. I think part of her subconscious remembers that I am available on Thursdays and fantasized about getting it switched to Thursday when I can help. After all, it would not be acceptable for her to complain or ask for help. She just doesn’t do that. I have thought about Lewy Body Dementia with her tremors getting so much worse. But when I look it up, she only has tremors and not the balance problems. I think they are the result of the Alzheimers affecting the Cerebellum. But I could be wrong. But, maybe these falls are the beginning of balance issues. </p>
<p>Thanks Dharmawheel. Can you tell me your thread?</p>
<p>tough times GTalum. sympathies!</p>
<p>My mom is declining, too. Although she works hard to not “be sad”. Her AL place is opening a Memory Care unit in the spring. I need to find out more about it, and I know I asked before and got some great advice on the differences. My worry is that the patients will be more crazy than she sees now. There are lots of people that are truly just living independently with assistance. My mom benefits from their social activities. I would like the staff to be better trained how to help her when she “loses” things, but I am not sure the trade off will be worth it. </p>
<p>esobay, my mother who has dementia one year ago was in an assisted living memory unit for one month- really not a good fit- they were very confused- not sure they knew their own name and were wandering in her room that she could not lock. she went home for a year with assistance with daily care givers. then back now in a regular personal care assisted living at the same place for 3 months. fits her much better- stage mild to moderate dementia but she is better off there for now. yes there are some nurses that get irritated with her when she repeats questions, etc. but the other unit was too far advanced for her at this stage.</p>
<p>esobay, I understand your concerns, but your mother is likely to be more “crazy” in the spring than she is now. Alas, it’s a one-way street she’s on.</p>
<p>Can you wait and see?</p>
<p>rockymtn, that is exactly what I am afraid of. Mom is still active and social and just forgetful, but not crazy. But I’d like the people taking care of her to have more training and more time to help her out.</p>
<p>oldmom, I can wait and see, especially since they won’t even open until March or April. In the past year of her being in the place she hasn’t gotten more agitated or anything, just more forgetful of current events and is sleeping more. She seems to have gotten over the “they are stealing my things” stage. … and she HAS lost all her towels. I think she puts them in the laundry and forgets to go get them for days . So she is right, someone took them, just not from her apartment. They haven’t changed her drugs for more than a year, too, so that makes me think she is pretty stable. I hate to upset the apple cart too. </p>
<p>We’re making a little progress. In that my sister who lives up there has now officially been wrung out too. Mom called her tonight, told her she wasn’t up to cooking and asked she go to a specific restaurant and get her a hamburger. Sis understandably worked all day and has officially been run ragged. I told her seize the day, tell mom this is too much. So she actually did it. She went over everything that has happened the last 10 days and told her essentially taking care of her was her full time job and everything still wasn’t being taken care of. She felt frazzled and overwhelmed. And importantly what she wants is a relationship with her, not a job. That her in laws were going to assisted living because they were tired of cooking and wanted some more support. And they’re still playing tennis! And mom agreed. </p>
<p>So next week I believe me and my other sister will go up there and look at a few places and figure out how to get this done asap. Hoping against hope mom doesn’t put the brakes on it again.</p>
<p>The visiting nurse finally showed up and mom’s meds were a complete confusing mess. Nothing was being taken properly, wrong meds, etc. Sister said she was so frazzled she said she needed to go figure all this out and come back Friday. </p>
<p>Hang in there eyemanmon. So glad that your sister told your mom what she did and that your mom agreed, (today). </p>
<p>Eyeamom- this sounds like the necessary opportunity to get your mother situated. And not a moment too soon. Hopefully sis keeps her resolve. Good for you for encouraging your sister to speak up. Beautifully stated: “I want a relationship, not a job”. </p>
<p>That’s awesome! It always helps when it is more than one “kid” that levels with the aging parent about how things are NOT working and that change is NEEDED. Great!</p>
<p>Huge step forward, eyeamom.</p>
<p>So great your sister is on board. If she can’t the others, like you, she will have to use the “tough love” approach. </p>
<p>Excellent article on end of life issues and mortality: [9</a> lessons Atul Gawande taught me about dying](<a href=“9 lessons a physician learned about dying - Vox”>9 lessons a physician learned about dying - Vox)</p>
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<p>When my nearly 98 yr. old aunt was in rehab after a terrible bout with C-dif, I had a ridiculous time convincing them to give her whole milk, salt, and butter. Her PCP and Cardiologist have now agreed with me to discontinue the routine EKG’s, (she refused a pacemaker), and labs unless a new problem develops. Next conversation is to discontinue some of her medications. She just wants to sleep and wishes that God would call her home!</p>
<p>My mom needs a new cardiologist to do her pacemaker checks. NONE of the heart people in her small town are taking new patients. Her primary care Doc isn’t “comfortable” with doing it. So they want me to have her go 75 or 90 miles away to a stranger for the first one. The rest can be done by phone. I am going up to riot in person next week since phone calls have born no fruit. But I really want to say we are just going to ignor it then, because I am not “comfortable” with her having to be carted over to strange cardiologists. Her battery was replaced about 2 years ago, should be good for another 8 years. Lets worry about it then, right? If they DID find something wrong with the pacemaker, I’d really be between a rock and a hard place for what to do. AND I want her off the statins for Cholesterol. I think her brain needs more fat, seriously. But I do not want someone saying that I am not properly caring for her health either. But balancing physical health vs mental health (which is going down faster this last few months) is t.r.i.c.k.y. </p>
<p>Esobay- sounds awful and sorry for this circumstance. Re-visiting your goals and priorities clarifies everything. If there are no current issues, I’d be weighing the challenge of the trip against the possible benefits. If you are out of the active treatment phase, perhaps there are other ways to ground her care that will emerge after your visit. I think there is a phase of letting go of follow up with specialists, especially when you realize you wouldn’t treat most things due to general health status. Few bring this up and families have to decide what is best. </p>
<p>Hang in there! You are doing right by looking into options. That travel time alone would wipe out many elders. </p>
<p>Oh gosh, eso. So sorry. Why is she needing a new cardiologist? Whats up with the current one?</p>
<p>And did her present cardio or primary place calls to see if local docs would take her, based on his/her request? Sometimes works. When we make the calls we usually just get as far as the person who answers the phone and their canned response. </p>
<p>Jym . her old one retired and no one in his office will step up and take any new patients. </p>
<p>lookingF … her old one sent out a letter of references to docs in other towns, 75 to 90 miles away. When I called the office, they were not too helpful, but the nurse was protecting the doc I expect. Mom’s primary care wasn’t much help either, but I am not too good on the phone. </p>
<p>I plan to go up and do puppy eyes in person. </p>
<p>I often found with my dad that showing up in person got me farther than a phone call. It shouldn’t be that way, but it is. Good luck.</p>