Dementia: Just diagnosed and scared

Posted by cathy514 @cathy514, Fri, Apr 19 12:42am

just diagnosed and scared

Liked by Dee, Leonard

@adah

Getting mri now

Jump to this post

Please do let us know how that MRI goes, @adah.

REPLY

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?

REPLY

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?

REPLY
@lisalucier

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?

Jump to this post

HE thinks he's just fine. Unfortunately, he has made serious financial errors, constant confusion and, for now, I've stood back because he doesn't want anyone to know he has ALZ. His next neurologist appt. is in June & I hope after hearing the doc urge him to allow me to handle business matters, he'll do so. If not, I'll have no choice but to become more aggressive which will make him very angry. I'm in an ALZ support group facilitated by professionals & have learned a lot. My mother lived with me for several years; she had ALZ but the dynamics were very different.

REPLY
@1977lizzy

HE thinks he's just fine. Unfortunately, he has made serious financial errors, constant confusion and, for now, I've stood back because he doesn't want anyone to know he has ALZ. His next neurologist appt. is in June & I hope after hearing the doc urge him to allow me to handle business matters, he'll do so. If not, I'll have no choice but to become more aggressive which will make him very angry. I'm in an ALZ support group facilitated by professionals & have learned a lot. My mother lived with me for several years; she had ALZ but the dynamics were very different.

Jump to this post

@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.

REPLY
@lisalucier

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?

Jump to this post

My son’s mri showed he had sinus inflammation. Took him today to Genectic Dr and they hopefully will be able to provide some answers.

REPLY

Thanks for asking about my husband. He has had a difficult time lately. He became dehydrated.I did some research and found that people with dementia often don't feel thirst so I have been trying to get more water, soups, ice bars, grapes, watermelon, etc.into him. I am not very successful. He has become very stubborn. He fell and spent two days in the hospital with a subdural hematoma which has really set him back. The doctor ordered nursing, PT, and OT at home. He has fallen twice in one day since then, thankfully without injury. Now he MUST use a walker everywhere. He often doesn't know me as me. I am never sure who he sees me as. He cannot be left alone anymore. I do have a grant for some outside help which is ever so helpful. He has several other serious physical problems that all seem to be screaming at the same time. He does not feel much, if any, pain – another thing that goes with some with dementia. I have looked into assisted living. The expense is way beyond our income. The new neurologist I have chosen for my husband believes in keeping people at home and is more than willing to support the caregiver. I didn't know that when I chose him. Very fortunate to have him on our side.

Liked by Dee

REPLY

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?

REPLY
@lisalucier

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?

Jump to this post

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..

Liked by Dee

REPLY
@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..

Jump to this post

@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.

REPLY
@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.

Jump to this post

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.

Liked by Dee, Jennifer Hunter

REPLY
@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.

Jump to this post

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.

Liked by Dee, Jennifer Hunter

REPLY
@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.

Jump to this post

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

Liked by Leonard

REPLY
@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

Jump to this post

over a year pet scan shows posterior cortical attropy

Liked by Leonard

REPLY
@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?

Jump to this post

very depressed sad and so lonely

Liked by Leonard

REPLY
Please login or register to post a reply.