New Member with questions

Yellow Lab Mom · April 12

Hello, My DH was diagnosed with mixed dementia and in moderate phase (start of stage 5 in the 7 phase model). I knew he had it and had to push his PCP to test him. 2 yrs later and they tell me something I already know. So frustrating. His neurologist prescribed donepezil, but he doesn't want to take it and the research I've seen, not much help anyway. He is sensitive to meds, so I am not pushing it. The thing that struck me is the total lack of compassion with doctors and the odd way they ask him questions, knowing he has dementia. I'm sitting in the room and they ask him if he has trouble with ADLs etc, he says no, obviously. They look to me and I say nothing. I am not going to be put in a position where I need to correct or mitigate his world. They should be asking me in a separate room on his daily issues. I am venting, sorry. It's been extremely difficult to manage not only his care, his world, but also other people. I'm just tired. Has anyone had experience with mixed dementia. ALZ with VD. He seems ok for days, then BAM, it's like he can't retain any short term answer, discussion etc for more than a few minutes. I have the usual things to help, whiteboard, labels, post it notes, the usual, but he still can't remember. I don't even know where I'm going with this post. I feel like I'm rambling.

M5M · April 12

Lab Mom, welcome to the group no one wants to be in….youll find lots of good information here, so come back often. I would offer one suggestion, others will chime in I’m sure… keep a running list of points you want to discuss with the doctor and then distill into a 1 or. 2 page note for doctors. Hand it to front desk when you arrive and say, “Please that Dr X sees this BEFORE our appointment”. The doctor was always pleased to have the information and didn’t quiz hubby.

overall, PCP doesn’t want to test because they know it’s a dramatic diagnosis either so many implications. Keep up advocating for your spouse.

Chance Rider · April 12

@Yellow Lab Mom

Welcome to our community, I’m glad you found us but sorry for your reason to be here. My husband was just diagnosed last August so I’m still new here myself.

I do exactly what M5M suggested and write a short note to my husband’s doctors outlining pertinent info. This is especially helpful since my husband has anosogosia- the inability to understand or recognize that he has ALZ and the effect it has on his physical and cognitive abilities.

I hope you’ll continue participating here, I’ve found this group to be more supportive and informative regarding my husband’s behaviors.

~ Eve, aka German Shepherd Dog mom

BPS · April 12

A lot of Dr's and others ask questions that PWD can't answer correctly and in the early and mid stages I was reluctant to correct my wife's answers or say things that I thought would embarrass her. Even now that she is in later stage I still try to be careful how I answer questions. She is in MC and when someone asks how long she has been there in front of her I give a month and year she moved there instead of saying 2 years. I don't know if she would understand what I was saying but she thinks she has only been there a week or two. I say she is there for therapy instead of saying Alzheimer's or dementia, I have found that even early on she didn't get upset when others were asking me or talking to me. I think then it is not her problem to answer so she just didn't pay attention to what is being said. It is hard to say things that might cause aggravation or embarrassment so the note or on portal sites is helpful.

Yellow Lab Mom · April 12

Thank you for replying all. I have used the patient portal and tried to call ahead of time, it doesn't seem to matter. Maybe it will get better. When we got the diagnosis, we were sent home with a copy of lifestyle changes, with the assumption we don't do any of it. We weren't provided any resources, no what's the next step, nothing. I just feel like if there isn't a cure, will he really need all these special appointments? I understand wellness checkups, for BP and such, but why go to all the other special appointments? To tell me what stage he is in? I can do that myself and change our home to suit his needs. Maybe I just need to go slow down. I am a planner by nature, so not being able to plan for what he needs to head off any unwanted angst, is hard for me. I'm still new to all of this, so I will be reading and researching. Thanks again!

Quilting brings calm · April 12

I have never been in a separate room to answer questions from any doctor except the neuropsychologist. That doctor was the one that did a 2.5 hour test from my step-dad and he says interview me separately. However that test was his only involvement.

With the other doctors, I would communicate any concerns by portal between appointments. In the actual appointment, I would let my parents answer ( they both had cognitive issues), but I would indeed correct the answer because the doctor needs to know the truth. My mom never really processed that I was correcting her and she never once acted as if she understood what the doctor said in terms of diagnosis. My step-dad didn’t like my correcting him but he couldn’t hear half of what was said and wouldn’t remember what the doctor said by the time he got home.

Here’s the doctors I found effective: PCP, psych residents at the clinic for medication to start, pulmonologist for mom, cancer doctor for step-dad. I didn’t find mom’s neurologist to be much help after the first few visits as there was nothing to be done ( and she punted mom over to psych for medications). Step/dad refused to go to neurologist.

At a certain point, I asked mom’s PCP to take over mom’s medications and I cut out the psych residents and neurologist because mom was frustrated at all the appointments and the PCP could handle everything they did.

Belle60 · April 12

I have had the same experience with the drs. In the beginning they would ask him questions and I would honor his responses even though they were not true. Now as he has progressed I think it is vital the dr know exactly what is going on. I either call ahead of time or just say it during the visit. As he has progressed, the dr will ask him the questions, look at him then nod to me as I am shaking my yes or no.

iowagirl1961 · April 13

our experience with the neurologist that diagnosed my dh was similar. Quick questions, quick in and out. No help. We switched to a psychiatric practice that includes practitioners that have geriatric training and experience. We see their medication specialist at least every three months and she spends at least an hour with us! (My dh takes donepezil, meantime and an anti-anxiety medication sertraline) She is so thoughtful with her questions and so helpful! I know you said you are able to avoid medication so far, but I have read others here that have also recommended geriatric psychiatrists.

SDianeL · April 13

I kept a list of behaviors and sent it monthly via the portal to all doctors. I sent behaviors more often as the disease progressed. At the appointment I would sit back and bit and nod yes or no if the doctor asked him questions. The Geriatric Psychiatrist was the most helpful and they are the best type of doctor to manage meds for anxiety, depression or agitation for dementia.

harshedbuzz · April 13

@Yellow Lab Mom said:

I have used the patient portal and tried to call ahead of time, it doesn't seem to matter.

I'm sorry this has been a challenge for you. Mom and Dad's PCP did take the time to read portal messages, from me. But at the end of the day, ethically he is there to care for them— not me. Dad's MC Clinic did provide a chance to discuss symptoms and behaviors while dad was out of the room testing. But to be honest, they had little to offer in the way of help or support.

Sometimes the questions about ADLs is about respecting the PWD autonomy (DS's pedi started asking him questions by the time he was 10 for comparison) and other times it's more about getting a sense of how the PWD believes themselves to be functioning. What I do in those scenarios is to sit in the chair next to my parent (both are/were terrible reporters— dad because of dementia and mom because "she doesn't want to be a bother") in the doctor's sightline. This allows me to provide the doc with nonverbal feedback as to the veracity of the answers being given.

Maybe it will get better. When we got the diagnosis, we were sent home with a copy of lifestyle changes, with the assumption we don't do any of it. We weren't provided any resources, no what's the next step, nothing.

I think a lot of us have had that experience. TBH, much of the prescribed lifestyle changes don't have any rigorous scientific data to back them up, but they don't have much else to offer.

I just feel like if there isn't a cure, will he really need all these special appointments? I understand wellness checkups, for BP and such, but why go to all the other special appointments? To tell me what stage he is in? I can do that myself and change our home to suit his needs.

I'm here with you. Once you've had the comprehensive workup to rule out conditions that mimic dementia but are potentially reversible, I didn't see much value. Visits to the Memory Center were all-day productions with an ugly hour+-long drive each way and doctors that agitated dad. TBH, we started seeing a geriatric psychiatrist for medications (behavioral disturbance) instead and that was much better. Dad even liked that doc.

Maybe I just need to go slow down. I am a planner by nature, so not being able to plan for what he needs to head off any unwanted angst, is hard for me. I'm still new to all of this, so I will be reading and researching.

This disease is hard for a lot of reasons. For planners, the unknowns around what to expect and managing assets to provide care when you don't know what acre or how long can be maddening.

One thing planners can do is create a Plan B. Once the legal pieces are taken care of, it's a good idea to flesh out what you would do if you couldn't provide care in the home. To that end, it's worth touring a couple of MCF in case something happens to you and also a few SNFs in case he needs rehab after a hospitalization.

HB

Yellow Lab Mom · April 13

All very helpful! I think I will look for a geriatric doctor as a PCP and go from there. I am sure medicine will be needed as he progresses, but I and he, don't feel comfortable just taking a pill and hoping for the best. Thank you all so much for taking the time to read and respond.

Timmyd · April 13

My whole life I have been pleasant and agreeable with doctors. That all changed since getting DW's diagnosis of early onset ALZ. I have learned to speak up, question the doctors and at times disagree with recommendations.

If I don't feel we are getting anything of value from the appointment I politely but clearly express that concern. If they ask DW questions that distress her or that she cannot accurately answer, I speak up, pull them aside and try to reset.

So many people we have encountered in the medical profession don't seem to get dementia or maybe don't care enough to figure it out. Some of what was recommended was nonsense. I am the expert on my wife's condition and I trust my gut as to what should be done or not done.

We have encountered some wonderful people (doctors, nurses, etc) during this journey and others who we will not visit again. I have not seen any clear pattern as to which type of doctors are better or worse at working with DW's condition.

Lgb35 · April 15

I have started sending physicians updates about what has been happening at home so I don’t have to say anything in front of DH that he will be mad about or feel less than

howhale · April 17

This is such a common problem that I see on here and I certainly experienced it with my DW throughout. Appointments with her neurologist became a joke and irritating for her as he asked questions I knew would trigger a reaction once we left. Once we were in the car heading home, she would would unload her annoyance on me. Toward the end I needed some guidance about what to expect as I tried to get things in order. My DW would no longer go to a doctor appointment so I went to her neurologist appointment simply to ask him for some insight on what to expect. They refused to allow me to see him without her present even though I provided them her POA and Health Care POA providing me permission. I asked how they expected me to have this conversation with her present and they said she could just sit out side the exam room while we talked!! I then offered to pay out of pocket for an appointment and they refused and handed me her complete file as they discharged her from the practice. All I wanted was his advice and experience. Her cardiologist was helpful in talking to me by phone and advising I contact hospice. He felt she had advanced to that level. I did and they were very helpful. This issue with doctors and this disease is so common it is a disgrace. I know all are not this way but far too many are. So, I found this site and all of you as my best resource for help.

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