Dementia: Just diagnosed and scared

Several of you have shared about recently or some time ago getting a dementia diagnosis for yourself or a loved one, or wondering about a possible diagnosis. I wanted to check in with some of you. I believe your responses will be beneficial to all in this discussion.

@adah - I know you were feeling frustrated with getting to the real issue of what’s wrong with your son, with his weight loss and confusion. Have you gotten any further answers? What did the MRI you mentioned he was getting reveal?

@barbbie - how is your husband doing? Sounded like from what you shared here before he has an Alzheimer's diagnosis?

@1977lizzy - Sounds as though your husband underwent a lot of testing to arrive at his diagnosis of Alzheimer's. Wondering how your husband is lately?

Hi, @adah - glad you are starting to get some answers about your son's condition through the MRI about the sinus inflammation, and you will be meeting with a genetics doctor coming up. How is he doing currently? Are you still seeing the confusion you mentioned previously?

@barbbie - sorry to hear your husband is having a difficult time and has gotten dehydrated and fallen. Glad to hear he's not gotten injured. Sounds like you are doing everything possible to keep up on researching his disease and assisted living options to help him and offer him everything possible. I am so glad that amidst the challenges, you have a neurologist who is supporting you and really on your side.

If you'd like to talk with other caregivers of those who have Alzheimer's or other forms of dementia at any point, here are a couple of Connect discussions in the Caregivers group you may want to check out:

- Dementia and anxiety https://connect.mayoclinic.org/discussion/dementia-drugs-to-ease-anxiety/

- Caring for someone who has dementia/Alzheimer's https://connect.mayoclinic.org/discussion/caregiving-for-dementia-sufferers/

I can imagine it would be heartbreaking to not have your husband recognize you. How do you respond to him, @barbbie, when he appears to not know you as you?

When he doesn't recognize me as me, I have often felt a very deep pain in my heart. My therapist says it's grieving the loss. I have a tough time responding not knowing who he thinks he's talking to. If he mentions my name and asks where I am I can respond with she's upstairs or outside gardening. Several times when we have to go somewhere he has asked what car are we using and do I know how to get there.. We only have one car! I tell him we will use the car in the garage. Yes, I know the way.
With PTs and OTs coming in, he is very confused about who is who, yet he is very social with them. He can tell them anything and they don't know he isn't telling things as they actually happened. Only I know and I don't correct him. If it is something they need to know I walk them to their cars and make corrections then.
Thanks for the new sites..

@1977lizzy Do you have a Power of Attorney document? If so, his doctors would make recommendations that would invoke Power of Attorney so you can handle everything without question. You don't have to convince him. I know it's hard. You'll have to hide your doings to keep him from interfering. My father in law had ALZ and had angry outbursts. The best thing to do was just change the direction of the conversation and distract him with something else. He had been against updating the kitchen for many years (even just new wallpaper), and we got him to go along with it by complimenting him for picking out the new wall paper and it made him feel good to think he was in charge and getting attention for it. We did that over and over and he really was happy about it and the 30 year old wall paper was gone.

@barbbie I feel for you. That is hard to accept. I was wondering if when he asks you where you are, if you could tell him that you'll go get her, then step away and come right back and say " You were asking for me? Here I am! " That would let him think that he's OK and hadn't made a mistake. I think for him, it must be traumatic if he realized he's made a mistake, or if someone tries to correct him, and he doesn't understand. To him, it probably doesn't matter how you respond as far as your identity. I remember visiting my father in law in a dementia ward of a nursing home, and the staff was having him sing Jingle Bells. They asked him, and he sang Jingle Bells for us by himself. That is a good memory and it was fun. It's not something he would have normally done, but he was able to freely enjoy it. He was kind of like a little kid at that point enjoying the attention, and I always looked for ways to make him feel good and like he was still in control of his life.

There is a lot of support available. Our local Alzheimer's Association has EASE classes which my husband and I took four years ago. From that class they started a support group for patients and caregivers. We first meet together and then we split up. We have made some very fine friends. My husband doesn't like to go out but he does like to go to the support group where he feels comfortable being with others with similar problems. They have an opportunity to discuss how they are managing plus the leader is able to give helpful info. For caregivers we get to learn what help is available and to help each other on this journey. I am sure the diagnosis must be devastating at first. I pray you will be able to find help from your regional Alzheimer's Association.

How long did it take before you were diagnosed? I can’t get anyone to diagnose my son, who I believe has dementia. As soon as we can get seen is September

Hello, @cathy514 - I know you were feeling sad and scared after your diagnosis of dementia last month. Wondering how you are feeling and how things are going lately?