Dementia: Just diagnosed and scared

Posted by cathy514 @cathy514, Apr 19, 2019

just diagnosed and scared

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@barbbie

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..

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@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.

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@jenniferhunter

@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.

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Thank you so much for your thoughtful response. Yes, I do have Power of Attorney. But……my husband is an attorney so I'm having to be very cautious. I'm taking things very slowly and not reacting to things he says/does…when I can Haaaa. He is now taking Zoloft for "impulse control" and it has taken the edge off his anger…unless I provoke him which I'm trying to be very careful about. After his next neurology appt. in four weeks, I feel I'm going to have no choice but to use my P of Atty. As everyone is, I'm balancing his issues with my own health concerns.

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@jenniferhunter

@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.

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Thanks for the suggestions. I will try them out. The PT asked him about being in control. Oh no, I don't want to do that. Then he told her he had a chance to move to a managerial position in his job but he wanted nothing to do with it. Too much responsibility. Likes others helping him at this point and making decisions for him.

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@barbbie

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.

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what state ad
re you in I can't find any groups near me I am in Belleville michigan

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@adah

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

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over a year pet scan shows posterior cortical attropy

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@lisalucier

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?

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very depressed sad and so lonely

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@1977lizzy

Cathy, Bless your heart; of course you're scared. SO many people are dealing with this. I would find a good neurologist, female therapist you can talk with, and share with all your girlfriends. You need a loving support system; don't isolate yourself. Live your life and have FUN.

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thank you so much, I am embarrassed for my friends neighbors to see me struggle as I also have tremors I am so alone

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I want to move to Florida my favorite vacation place but I don't know if I can sell my house and find a place in Florida I can afford I love ft lauderdale but ca Nt afford it. looking at Zeffirelli hills

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my best friend of 40 years doesn't understand why I don't drive more then 5 miles and thinks i am just looking for rides to save gas money yet I pay anyone who drives me. I have trouble writing my name was so embarrasedat the bank boca and my hand woulnt finish I had to tell teller I couldn't do it she said just scribble but bring someone with yo next time so embarassed

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@remi54

Mayo diagnosed my husband with pca in 2014. If you can get in there they will find an answer for you.

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got a sooner appt pet scan shows pca

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@cathy514

thank you so much, I am embarrassed for my friends neighbors to see me struggle as I also have tremors I am so alone

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@cathy514
Hi Cathy,
Embarrassed? Why? Not everyone fits into the idealistic definition of normal or perfection. Even if your friends are making comments about your tremors, so what. Why should you care. YOU have nothing to be embarrassed or ashamed about, NOTHING!! I’ve had Epilepsy for over a half century and I could tell you things that happened to me that would curl your hair, make you blush and cry but I’ll spare you and those incidents are insignificant compared to others I’ve known and read about. I wrote on Epilepsy forums for many years and it’s amazing how many people are unable to come to terms with an illness. For a very short time I too was one of those people, my condition happened so suddenly and severely I couldn’t cope but I soon realized “It is what it is.” But I wanted to live my life and be healthy and happy but the healthy part took nearly 50 years. I have a condition that I have no control over and even though I heard many people make cruel comments, hopefully it was ignorance but I’m afraid some of it was stupidity but regardless there was no reason to be embarrassed or ashamed.
Always accept and love yourself as you are. Never be embarrassed or ashamed.
Health and happiness,
Jake

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@cathy514

what state ad
re you in I can't find any groups near me I am in Belleville michigan

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I am in New York. I will call and check and see what's available in your area.

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