DW diagnosis of EO Alzheimers. First, new member post

KirkFrosty

Greetings,

DW diagnosis of EO Alzheimers after professional cognitive testing, May 2023. Still in denial and "covering" stage so it has been very difficult having a conversation about the illness. Refused to go to two neurologist appointments, latter was an initial consultation with state medical institute on aging (memory center) who has access to current and new medications.

Later in the day after our children and her and I had a brief chat she agreed to go but this has happened before. Anyway, DW and I have rescheduled this appointment.

At this time I have two questions : Any advice on keeping appointments when she doesn't want to go. I will point out for some of doctor appointments, especially to our PCP, where she has marked off of our calendar I'll wait until a day or two prior to the appointment and put it back on the calendar and the day of I keep positive my comments on when we need to leave the house and such and that has been somewhat successful but anything to do with cognitive issue is a battle.

Second question is what do you use as a daily, weekly activity checklist planner. We do have a large monthly paper calendar we use for appointments, activities and such but nothing for personal hygiene and such. Right now I just ask or tell her it's time to..........

I will continue to search and read postings within this group.

Thank you

Ed1937

Hi Kirk. It is likely that she does not think there is a problem, so why go to a doctor? She has anosognosia. It is not denial. Here is a link for a video. Why your loved one doesn't believe they have dementia- It's NOT denial. Or if you would rather read about it. https://www.agingcare.com/articles/anosognosia-dementia-patients-cant-recognize-impairment-210090.htm  

I'm assuming she is on Medicare. Since she had a scheduled appointment that she did not attend, tell her that if she misses another appointment, they will drop her coverage. You can use that even if she is not on Medicare, but another insurance. The goal is to get her to the appointments, and that might require a fiblet. Fiblets will become a very good friend to you during this illness. They make things easier for both of you.

Welcome to the forum, but sorry you need it. You will find it to be a great resource throughout your caregiving days.

M1

Hi kirk. To expand on what Ed said, i wouldn't tell her the appointments are about her dementia; i would not mention a diagnosis at all unless you have to, in which case, make up any other excuse you want. Dizziness, headaches, hearing loss, whatever. I would also endorse the insurance ruse and say this is required by Medicare or you'll lose your coverage. It also helps if you communicate with the office ahead of time and put all of your observations and concerns in writing, which can minimize the amount of discussion that has to go on in front of her.

We never used checklists. She may be able to follow one early on, but likely not for long. Ditto with pill boxes-useless once she couldn't remember the day of the week or the time of day. There comes a time when she may be able to read the words but won't comprehend what they mean. It's heartbreaking, and I'm sorry you are going through it. You've come to a good place though.

KirkFrosty

Thank you for the insight. I will continue to research, read, watch and learn how to better interact and care for my DW. So much information available. My attitude has already been changed for the good! Finding out about what Anosognosia and LEAP are is huge.

jfkoc

Another welcome...

Dementia 101 is an ongoing course. New things to learn every day but your journey will be a lot easier now that you are here!

Judith

jfkoc

SDianeL

Welcome Kirk to the place for info and support. If you haven't already, please read the book 'The 36 Hour Day" which helped me a lot. My DH was diagnosed 2 years ago but has had symptoms for 8 years that I didn't realize. He's now Stage 5 going into Stage 6. Here's a handout that will help you understand: https://tala.org/wp-content/uploads/2019/04/Tam-Cummings-LLC-Handouts.pdf I use this handout to make notes of my DH behaviors and I keep a list that I take to all doctor appts and I give them the list rather than discussing in front of my DH. As far as hygiene things, I've found that keeping it simple helps. Put the toothbrush or dental care stuff on the counter each morning and show her where it is. We shower on Wed & Sun, the days we go get him a newspaper. Yes, he still reads it. I get his shower all ready (body wash, wash cloths, towel, etc) and at first I even turned on the water for hm but he does that now). I tell him it's ready and he can take it when he's ready. No arguing anymore. Sometimes if he's not feeling well I let him slide until the next day. The reason they don't do hygiene is 2 fold. 1st. they don't remember how long it's been since they last did the task and 2. There are too many steps in the process to accomplish the task. Anything you can do to get things ready and reassure her, the better. I bought my DH a large digital clock that gives the day, date & time and a digital watch because he can no longer read a regular clock or watch. I keep all our doctor's appointments on my Yahoo calendar and it sends reminders. Each day, I make a to-do list on a post-it note just for that day. Gives me a sense of accomplishment and keeps me from getting overwhelmed. I make his doctor appts in the early afternoon, and use video or phone telehealth rather than in person appointments when I can. The more you can keep a routine the better. Start thinking about how to get some respite care for you. You will need it.

KirkFrosty

https://alzconnected.org/discussion/comment/185674#Comment_185674

Thank you for your informative reply. I'm still not sure how I'm going to explain the appointments and what they are for. And what would possibly happen when the doctor starts asking questions relating to EO Alzheimers and the ones for blood work and or testing. Am I overthinking this? Not sure about telling her if we cancel or don't go that medicare will cancel or??? to her coverage. Even so, there still has to be a reason we are going to memory division of elder care at the hospital.

M1

I wonder if it would work to tell her she's going to be in a research study. My other thought is to call the office to see if they have suggestions. She won't be the first they've dealt with with this issue. Keep us posted.

Waldorf

I solved the problem by using the same doctor for both of us. I scheduled back to back appointments and was able to tell her that it was for me and I wanted her to come with me. It worked most of the time,

Waldorf

FMK

https://alzconnected.org/discussion/comment/185732#Comment_185732

Hello there, Kirk,

I, too, am new to this group and have already read helpful informaiton. I needed some insight as to what to expect for financial planning purposes and called the social worker who works at my husband's neurologist's office. She spent over an hour with me on the phone and provided realistic picture of what my husband's healthcare future will likely demand. It was super helpful. Maybe your doctor's office has such a social worker, too. They are expert at handling sticky situations. My husband was diagnosed at age 60 after having MCI for about 5 years.

To confirm someone else's recommendation...If I have a concern about my husband that he will be sensitive about, I call ahead and speak to the nurse or send a messiage via the patient portal so that they know my concerns in advance. The provider typically will bring it up without my having to and then it comes from the doctor, not the wife. I become the supportive spouse instead of the bearer of bad news. One more thing. Pray for wisdom and compassion.

KirkFrosty

https://alzconnected.org/discussion/comment/185751#Comment_185751

We do that for cardiologist, primary care doctor, optometrist and other appointments.

KirkFrosty

https://alzconnected.org/discussion/comment/185764#Comment_185764

Thank you, unfortunately the first Neurology clinic we went to was Not a good experience at all. I asked on two different occasions for a referral for "Me" guidance and help. All I received was a yes. Two visits with doctor of approximately 10 minutes each were a joke, sorry. Doctor had not even read the test results. Fortunately I brought a copy and after a few second glance only repeated what the test results showed. On the plus side though, as required in so may instances, we were able to get the referral for the independent and very thorough cognitive test and subsequent one to State Medical Center which we have yet to visit. I am making a list of observations, concerns and questions for the doctor to have ahead of time.

I will ask the nurse when we talk Monday to schedule our visit for recommendations on how to handle the What is this appointment for? Question which I always get many times.

I'll also discuss "Me" help.