My wife forgetting: Diagnosed with MCI

Posted by jimmars51 @jimmars51, Nov 29, 2020

She has been diagnosed with M C I for 18 months. More and more lately she will ask if we ate anything today. She very rarely cooks now and if i don’t schedule and make meals she goes without. I am trying best to stay up with everything, but its getting tough. Just need to “unload” and ask for ideas to be able to keep up. Lots more going on also.

@providence1960

I can relate…my mom has the same issues…it is heartbreaking…I have no advice but to share my mantra with you….patience, compassion and love.

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I appreciate you sharing about your Mom and I am so sorry. I love your mantra, they are so deserving of all the patience, compassion and love we can give. Thank you!

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@orca59

I appreciate you sharing about your Mom and I am so sorry. I love your mantra, they are so deserving of all the patience, compassion and love we can give. Thank you!

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Thank you….I often put myself in her place…I can’t imagine how she feels and her fears and anxiety. I do my best…

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@orca59

Hi Dan, I can't tell you how much I appreciate your words of wisdom. Please feel free to be as long winded as you wish. I appreciate someone who is going through the same experience and has some wisdom and kindness to share. THANK YOU! I have also experienced my husband sitting in the drivers seat and just looking lost. He goes no where without me as he also forgets how to get places, and more importantly, how to get home. GPS is fine, but he also forgets how to turn it on so that is no longer an option. He also has no recollection of landmarks most days. He will have good days and bad which is confusing to me, but I appreciate the good days.

I find him now sitting at the kitchen table waiting for a meal, when we just had the meal some 30 minutes before. He will get a bowl of ice cream, and 30 minutes or so later go into the kitchen and get another bowl of ice cream. He no longer (some days) remembers that he ate.

I have also been contacted (sadly) by friends and neighbors stating that my husbands conversations are, at times, inappropriate. He will sometimes say things, he thinks are funny or have nothing to do with the conversation. I also share that he has MCI and he is in agreement (as is your wife) that I share this with close friends and family. My grown children try to understand, but even for them, they seem to have stopped texting him as much. (He is step dad x 30 years now).

I love that you shared you and your wife talk at night. We do this as well in a similar way. If my husband realizes he forgot a great deal, he will get very emotional and upset. So I try to just review the day as if I am remembering and sharing. This seems to not upset him as much. I completely agree with your views of "open and honest". So very important. I love him dearly and it breaks my heart. I feel our relationship has shifted. I take care of everything now and am thankful that I can. I may be small, but I am mighty! LOL
May I ask, does your wife remember everything from long ago? My husband remembers everything from his childhood. Nothing from the past recent years. He also cries often. Get's anxious and angry often. He also has horrible nightmares and many times will wake up kicking me and crying? Our neurologist put him on a medication for this, but it made him so tired. I believe it was some type of tranquilizer. So, we discontinued it. Our neurologist also stated there is no medication to stop/help this disease process.

Thank you again for your kind words and sharing your story with me. I hope that we may continue to share. It is a blessing to know there are other's living with a loved one with MCI. Thank you and blessings to you. Janice

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Has your husband been diagnosed with REM Sleep Behavior Disorder (Acting out dream state, talking in sleep etc). It is a major criteria for Lewy Body Dementia. Important to know that diagnosis as drugs such as Halperidol or similar for agitation are not recommended and can make symptoms worse.

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@tunes

Has your husband been diagnosed with REM Sleep Behavior Disorder (Acting out dream state, talking in sleep etc). It is a major criteria for Lewy Body Dementia. Important to know that diagnosis as drugs such as Halperidol or similar for agitation are not recommended and can make symptoms worse.

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Yes, actually they have diagnosed him with REM Sleep Behavior Disorder. He kicks violently sometimes and sometimes falls out of bed. I did not know that this was associated with Lewy Body Dementia. Thank you so much for this information. I will do some research on this. I wonder if that is why the medication they gave him made symptoms so much worse. That would make sense. Thank you all. I am very grateful for this group.

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@orca59

Hi Dan, I can't tell you how much I appreciate your words of wisdom. Please feel free to be as long winded as you wish. I appreciate someone who is going through the same experience and has some wisdom and kindness to share. THANK YOU! I have also experienced my husband sitting in the drivers seat and just looking lost. He goes no where without me as he also forgets how to get places, and more importantly, how to get home. GPS is fine, but he also forgets how to turn it on so that is no longer an option. He also has no recollection of landmarks most days. He will have good days and bad which is confusing to me, but I appreciate the good days.

I find him now sitting at the kitchen table waiting for a meal, when we just had the meal some 30 minutes before. He will get a bowl of ice cream, and 30 minutes or so later go into the kitchen and get another bowl of ice cream. He no longer (some days) remembers that he ate.

I have also been contacted (sadly) by friends and neighbors stating that my husbands conversations are, at times, inappropriate. He will sometimes say things, he thinks are funny or have nothing to do with the conversation. I also share that he has MCI and he is in agreement (as is your wife) that I share this with close friends and family. My grown children try to understand, but even for them, they seem to have stopped texting him as much. (He is step dad x 30 years now).

I love that you shared you and your wife talk at night. We do this as well in a similar way. If my husband realizes he forgot a great deal, he will get very emotional and upset. So I try to just review the day as if I am remembering and sharing. This seems to not upset him as much. I completely agree with your views of "open and honest". So very important. I love him dearly and it breaks my heart. I feel our relationship has shifted. I take care of everything now and am thankful that I can. I may be small, but I am mighty! LOL
May I ask, does your wife remember everything from long ago? My husband remembers everything from his childhood. Nothing from the past recent years. He also cries often. Get's anxious and angry often. He also has horrible nightmares and many times will wake up kicking me and crying? Our neurologist put him on a medication for this, but it made him so tired. I believe it was some type of tranquilizer. So, we discontinued it. Our neurologist also stated there is no medication to stop/help this disease process.

Thank you again for your kind words and sharing your story with me. I hope that we may continue to share. It is a blessing to know there are other's living with a loved one with MCI. Thank you and blessings to you. Janice

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Orca59
My wife can remember minute details from many years ago but not so much from the last few years. She has never been great with technology but I forget that sometimes, like today when I was driving and asked her to text our granddaughter that we were on our way to pick her up. She couldn't remember how to use the phone or which icon to tap on to start a text message. Then she started getting upset, calling herself stupid and other names. I apologized for asking her to send the text message and tried to calm her down before we got to our granddaughter’s house. It was my fault that she was upset because I forgot she has MCI. We took our granddaughter to lunch at a restaurant that we have been to about 3-4 times over the last few years. My wife told our granddaughter we had never been to the restaurant before. I never corrected her because I knew she would get upset. I find it difficult sometimes to remember that my beautiful wife of 51 years is having a problem with her memory but that’s my problem and I will work on fixing it.

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This might be a good place to start. His symptoms are fairly classic for LBD, but obviously PET scans etc. would be valuable in a real diagnosis. https://www.mayoclinic.org/diseases-conditions/lewy-body-dementia/symptoms-causes/syc-20352025

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When my mom says she has never been to a place before I learned not to correct. I also learned not to say do you remember. What I say now is that I recall….and she then will say yes I remember or I think so…it’s easier on her. When she asks about her parents or my dad…I learned not to say they died…I distract by saying tell me something about them….I learned that from this group…it works.
My mantra: Patience, compassion and love.

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Hi all, I thought you might appreciate this blog post by Dr. Chandler
– Who Else Besides Family Should I Tell About My MCI? https://connect.mayoclinic.org/page/living-with-mild-cognitive-impairment-mci/newsfeed-post/who-else-besides-family-should-i-tell-about-my-mci/

I like some of the questions she asks in the post, but reframe them here for the caregiver:
– What if the shoe was on the other foot? Would you welcome knowing about it if your friend or neighbor or their partner had a diagnosis of MCI?
– Will they look at your partner differently? Treat them differently? Will they still want to be around you?

I also like the practical advice "Teach them how to act around your partner. Tell them what is ok and not ok to say, or what they like to discuss. So often people don't know how to help. They just speak louder or leave.

Any tips that you find useful from the article?

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@tunared

Orca59
My wife can remember minute details from many years ago but not so much from the last few years. She has never been great with technology but I forget that sometimes, like today when I was driving and asked her to text our granddaughter that we were on our way to pick her up. She couldn't remember how to use the phone or which icon to tap on to start a text message. Then she started getting upset, calling herself stupid and other names. I apologized for asking her to send the text message and tried to calm her down before we got to our granddaughter’s house. It was my fault that she was upset because I forgot she has MCI. We took our granddaughter to lunch at a restaurant that we have been to about 3-4 times over the last few years. My wife told our granddaughter we had never been to the restaurant before. I never corrected her because I knew she would get upset. I find it difficult sometimes to remember that my beautiful wife of 51 years is having a problem with her memory but that’s my problem and I will work on fixing it.

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DanL You are an amazing caregiver. Good for you.

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@tunared

Orca59
My wife can remember minute details from many years ago but not so much from the last few years. She has never been great with technology but I forget that sometimes, like today when I was driving and asked her to text our granddaughter that we were on our way to pick her up. She couldn't remember how to use the phone or which icon to tap on to start a text message. Then she started getting upset, calling herself stupid and other names. I apologized for asking her to send the text message and tried to calm her down before we got to our granddaughter’s house. It was my fault that she was upset because I forgot she has MCI. We took our granddaughter to lunch at a restaurant that we have been to about 3-4 times over the last few years. My wife told our granddaughter we had never been to the restaurant before. I never corrected her because I knew she would get upset. I find it difficult sometimes to remember that my beautiful wife of 51 years is having a problem with her memory but that’s my problem and I will work on fixing it.

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Bless your heart, it sounds like you are so very patient and kind. My husband also brings me his phone and says things like, "Can you fix this on my phone, I have never seen this before". And, there is nothing at all different on the phone. He just forgets how to navigate through it. So I understand your dear wife not being able to find the text button. This morning my husband asked me what month we were in and he thought it was June. He also seems to be nervous if I am away for any length of time such as the store, or visiting family for a few hours. He is reluctant to let me drive too far and fears something will happen to me. I have started to stay home more and sometimes feel so sad. I need to find a way to balance seeing other members of my family. Both families live an hour away. I work on patience too. Especially the repetitive nature of his questions. You are correct, these are small things in the scheme of things, and I too need to work on fixing that part of myself. May I ask how old your dear wife is? My husband is 71, but I saw glimpses of the changes years ago.

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@tunes

This might be a good place to start. His symptoms are fairly classic for LBD, but obviously PET scans etc. would be valuable in a real diagnosis. https://www.mayoclinic.org/diseases-conditions/lewy-body-dementia/symptoms-causes/syc-20352025

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Thank you so much. He had one in 2017 when we first went to visit the neurologist. Possibly time to request another scan. Thank you so much.

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Here's a recognizable list of providers with creditable neurology depts, treating as well as researching Brain Tangle diseases. Hopefully you will find one reasonably near you. Mayo was our choice and where the diagnosis took place. The next step is to have a GP/or neurologist in your home town that is willing to work with this remote medical resource, as just that, a resource, a team member for treating your spouse.

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