How grateful am I to get a response like this so appreciative. I haven't had the anger set in. For me it's this incredible fear, "I don't know what I don't know" and my mind, just keeps predicting the worse outcome. Which is odd since I"m usually so, so positive. Yes, the problem solving skills are an issue for my husband. Last night's disappearance where he was angrily sitting at the community pool alone and I didn't know where he was. I had to take the car out to find him. Hearing that the changes happen slower, is a positive for me to have faith, and hope, that whatever will be, will be. Keeping things on an even keel is right. And I think you are great about the disagreeing on unimportant things, I think I'm so frustrated, that I just blurt out stuff that really isn't right....My husband is very mild mannered too, I wish I could say the same for me, especially going through this. But reaching out to this group, I knew was the right thing. Thank you for you, today. Your words mean so much to me. Thank you for sharing.
We are glad you are here. This group has been so wonderfully supportive. I wanted to mention, please don’t be hard on yourself when you “just blurt out stuff”. Sometimes we are just so surprised at what is happening to our loved one that things just come out. I know that is the case with me…so I’m hoping that by reading people’s advice here, in time, I’ll figure it out and be calmer in my responses also. When you’ve lived with a person (in my case 51 years) you come to know them and when they begin to change from who they’ve always been, it takes awhile to adjust. Take good care of yourself.
Those feelings of fear and loneliness are familiar to most of us. After the diagnosis, anger set in and then, depression...those feelings come and go for me. On the positive side, changes have not happened as quickly as I feared. The memory lapses have worsened over the course of a year. He doesn't have the skills of problem solving as he once did...he still is driving although I see that changing soon. there have been a couple of episodes of angry outbursts that scared me..unexpected, unreasonable. My response was not good...I got over it. Traveling is a challenge but since we are snowbirds, I need to figure it out. Each trip is different and I try to anticipate how I can make everything go more smoothly. Everyone is different...you'll hear that a million times...but for us the changes happen slower than I feared they would. We are 2 years in from the formal diagnosis, and he is still able to share in social events...difficulty following conversations... putters in his garage every day. As long as I keep things on an even keel he does ok...I avoid disagreeing on unimportant matters. Keep the peace if it is a matter of simply pointing out he is misremembering. It doesn't matter. Let it go. I am trying to prepare for the next outburst and be prepared to not react. My husband is a very mild mannered man and he never had angry outbursts so this behavior, for me, it the most difficult.
I see our situation in much of what you wrote. My husband is also very mild-mannered, and I recently saw an outburst directed at a family member. That is rare, and as a result, very surprising. Pointing out misremembering is something I need to work on in myself…I am a work in progress. 😊 Also, thankfully, the changes in my husband have been slow and gradual…I like to remember that not everyone diagnosed with MCI advances to Alzheimer’s, but his older sister passed away from Alzheimer’s 2 years ago. We were snowbirds also, but as of last year, that has stopped. We will stay in the northeast, near family. I find being out of familiar surroundings is stressful for him. And your words “Let it go” are so very important. Thank you again, for your post! Be well.
Those feelings of fear and loneliness are familiar to most of us. After the diagnosis, anger set in and then, depression...those feelings come and go for me. On the positive side, changes have not happened as quickly as I feared. The memory lapses have worsened over the course of a year. He doesn't have the skills of problem solving as he once did...he still is driving although I see that changing soon. there have been a couple of episodes of angry outbursts that scared me..unexpected, unreasonable. My response was not good...I got over it. Traveling is a challenge but since we are snowbirds, I need to figure it out. Each trip is different and I try to anticipate how I can make everything go more smoothly. Everyone is different...you'll hear that a million times...but for us the changes happen slower than I feared they would. We are 2 years in from the formal diagnosis, and he is still able to share in social events...difficulty following conversations... putters in his garage every day. As long as I keep things on an even keel he does ok...I avoid disagreeing on unimportant matters. Keep the peace if it is a matter of simply pointing out he is misremembering. It doesn't matter. Let it go. I am trying to prepare for the next outburst and be prepared to not react. My husband is a very mild mannered man and he never had angry outbursts so this behavior, for me, it the most difficult.
Most of us have experienced fear and loneliness, anger, depression, resentment, the whole list. We took are snowbirds or at this point I should say I am. I took my husband with me for as many years as I could. The last time was three years ago. I drove to Key Largo and then flew home and flew back with him. At this point the challenges are just too great and I can no longer do it. He resides in nursing care since January. Disagreeing with him or correcting him only leads to anger and frustration for both of us. It took time to learn not to but you will get there. Just remember it isn't him it's the disease. Having a specific diagnosis also helps eliminate some of the fear by learning what to expect. It seems to me that a diagnosis of MCI just means he isn't far enough along for the actual diagnosis. It's like Parkinsonism. Waiting for things to get worse so you can figure out the name of the road you already know you are on.
Hello @birdhouseclosed Nice to e-meet you here on Mayo Connect! I am Scott and I am sorry to read of your spouse's healthcare journey. I am guessing by MCI you are referring to Mild Cognitive Impairment. If not I am sorry for the wrong guess -- and I know what they say about assuming 🙂
The caregiving journey is never an easy path, but one we often find ourselves on with little warning and even less training for it. I was my wife's primary caregiver for 14+ years and a secondary caregiver for my mother-in-law, when she had dementia.
One of the best aspects, at least to me, of Connect is what a sharing community we are! While each patient's journey with their disease is unique, as is the journey of their caregiver, there is much to be gain by looking for, and asking about, hints, tips, and ideas for how to navigate the world as a caregiver.
Acceptance of seeing our loved one with a chronic, fatal disease is very difficult and for me was a very 'up and down' thing. Accepting at times, dang mad at others, depressed for some of the time, and always confusing! I wish there was a magic potion for this aspect of caregiving, but I never found it. That said, the one thing I always tried to do was remind myself, as the times got more challenging and my wife's condition deteriorated, that I was dealing with what the disease was doing to her, not what she wanted to do, say, act, etc. I also kept an old pillow in another room where I frequently would cry into it, punch it, and at time even swear at it with quite a bit of gusto!
Please feel free to ask any questions as their are loads of helpful folks here! If I may ask, how long have you been caregiving? What do you find the most challenging about this new role?
Hi Scott I am new to group my husband was diagnosed with a progressive neurological disease that has a cognitive component to it. We are lucky he is still working right now but changes are coming up cognitively more than physically and although he is functional I am struggling with the changes and the change in demand on me. I am so happy to find this group
Hi Scott I am new to group my husband was diagnosed with a progressive neurological disease that has a cognitive component to it. We are lucky he is still working right now but changes are coming up cognitively more than physically and although he is functional I am struggling with the changes and the change in demand on me. I am so happy to find this group
Hello and good morning, @brendaa4boy It's nice to e-meet you here on Mayo Connect. I am sorry to read of your husband's healthcare journey. Tough for him, and caregiving is also a challenging journey all its own. I, too, am happy you found this group,
Changes during caregiving were always some of the most demanding aspects for me. It seemed there was never a groove that lasted long enough for me to feel grounded. My dad was a longtime alcoholic, and I found the AA mantra of "one day at a time" was a huge help to me. This enabled me to view each day as a separate event. At bedtime, I'd say to myself, 'Well, this day is in the books and now I need to sleep to fortify me for whatever different will come tomorrow.' It didn't always work, but I do think it helped many nights!
Throughout my early life, change was very difficult for me. Luckily, early in our marriage, my wife taught me to accept that changes in life are inevitable, should be embraced, and enjoyed.
Well, at least that helped me accept change, but caregiving changes were a whole different realm. Looking forward and never back did help me manage those many caregiving changes.
Most of us have experienced fear and loneliness, anger, depression, resentment, the whole list. We took are snowbirds or at this point I should say I am. I took my husband with me for as many years as I could. The last time was three years ago. I drove to Key Largo and then flew home and flew back with him. At this point the challenges are just too great and I can no longer do it. He resides in nursing care since January. Disagreeing with him or correcting him only leads to anger and frustration for both of us. It took time to learn not to but you will get there. Just remember it isn't him it's the disease. Having a specific diagnosis also helps eliminate some of the fear by learning what to expect. It seems to me that a diagnosis of MCI just means he isn't far enough along for the actual diagnosis. It's like Parkinsonism. Waiting for things to get worse so you can figure out the name of the road you already know you are on.
No one has ever said your words “MCI just means he isn’t far enough along for the actual diagnosis.” I can’t tell you what those words mean to me. I have lived for years seeing the changes but no one has really explained it to me like you did. Now I realize he is in the stages, to agree and have patience is my first priority to understand. He knows he can’t remember words etc but I just say everyone forgets. Thank you thank you again. Jean
My wife diagnosed with MCI 8 months ago seems to cycle through good days (weeks) and not good days. One minute everything seems fine we are getting along and then something changes and she retreats away from me. When the frustration rises, I apparently raise my voice and this pushes her away further. I am trying to recognize these are cycles and not get frustrated. I have to do better…. But yes this is hard on everyone.
It’s been a while since I commented. I’ve actually been in talk therapy every three weeks and that has helped me. My husband has a little more than mild cognitive impairment. It’s been about two years now all of our children recognize it not any friends or other relatives. he is quite brilliant. He does New York Times crossword puzzle Every Saturday but now he does it with our son who’s 27 who lives in Arizona they do it over the phone. through this journey. I’ve learned a lot about what to say, and what not to say I was told by not only his neurologist, but my therapist that we should never bring up MCI. when he asks questions over and over again or if it he forgets something, I just told him — we’re not supposed to say “I just told you that or remember we’ve been over that last week.?” No he doesn’t remember and it just gets them all anxious and upset. I learned that anxiety is a big part of this disease and so he takes some meds for anxiety, but the doctor wants him to go up 25 to 50 mg more to keep that under control and has recommended another medication like Aricept, but he doesn’t really wanna go on that either. He takes a number of supplements from our naturopathic doctor and walks outside 3-5 miles every day gets a lot of sun and pretty much takes a three hour nap every day. we cook together we eat dinner together we walk sometimes together we go out to lunch or dinner together and we visit our children who live around us as often as we can. I try to keep it light and as much Sameness as possible because I’ve learned that too much change is not at all good for MCI patients. I thought maybe we would take a ballroom dancing he agreed so let’s see if we can do that. We do love to travel but finances are very tight so for now we’ll do fun things around the house. We watch Netflix movies together the Yankees together, we play scrabble or otger board games And try to make things as normal as possible. As for me it’s very challenging because knowing how this man was for the last 35 years, a sharp intelligent, very good, looking dapper, kind, strong, compassionate man, a loving father and a loving husband, and to see these subtle changes happening to him Can be very emotional and disheartening as a caregiver. I’m a little bit scared as to where this is all gonna be going and what’s going to happen but I do take one day at a time. I pray a lot. I read I work part time and I’m grateful for any type of support therapy I can get so thank you for listening and I hope that this has helped someone to understand their situation a little bit better. Does anyone in this group recommend a medication that is helping their loved one? God Bless!
It’s been a while since I commented. I’ve actually been in talk therapy every three weeks and that has helped me. My husband has a little more than mild cognitive impairment. It’s been about two years now all of our children recognize it not any friends or other relatives. he is quite brilliant. He does New York Times crossword puzzle Every Saturday but now he does it with our son who’s 27 who lives in Arizona they do it over the phone. through this journey. I’ve learned a lot about what to say, and what not to say I was told by not only his neurologist, but my therapist that we should never bring up MCI. when he asks questions over and over again or if it he forgets something, I just told him — we’re not supposed to say “I just told you that or remember we’ve been over that last week.?” No he doesn’t remember and it just gets them all anxious and upset. I learned that anxiety is a big part of this disease and so he takes some meds for anxiety, but the doctor wants him to go up 25 to 50 mg more to keep that under control and has recommended another medication like Aricept, but he doesn’t really wanna go on that either. He takes a number of supplements from our naturopathic doctor and walks outside 3-5 miles every day gets a lot of sun and pretty much takes a three hour nap every day. we cook together we eat dinner together we walk sometimes together we go out to lunch or dinner together and we visit our children who live around us as often as we can. I try to keep it light and as much Sameness as possible because I’ve learned that too much change is not at all good for MCI patients. I thought maybe we would take a ballroom dancing he agreed so let’s see if we can do that. We do love to travel but finances are very tight so for now we’ll do fun things around the house. We watch Netflix movies together the Yankees together, we play scrabble or otger board games And try to make things as normal as possible. As for me it’s very challenging because knowing how this man was for the last 35 years, a sharp intelligent, very good, looking dapper, kind, strong, compassionate man, a loving father and a loving husband, and to see these subtle changes happening to him Can be very emotional and disheartening as a caregiver. I’m a little bit scared as to where this is all gonna be going and what’s going to happen but I do take one day at a time. I pray a lot. I read I work part time and I’m grateful for any type of support therapy I can get so thank you for listening and I hope that this has helped someone to understand their situation a little bit better. Does anyone in this group recommend a medication that is helping their loved one? God Bless!
How grateful am I to get a response like this so appreciative. I haven't had the anger set in. For me it's this incredible fear, "I don't know what I don't know" and my mind, just keeps predicting the worse outcome. Which is odd since I"m usually so, so positive. Yes, the problem solving skills are an issue for my husband. Last night's disappearance where he was angrily sitting at the community pool alone and I didn't know where he was. I had to take the car out to find him. Hearing that the changes happen slower, is a positive for me to have faith, and hope, that whatever will be, will be. Keeping things on an even keel is right. And I think you are great about the disagreeing on unimportant things, I think I'm so frustrated, that I just blurt out stuff that really isn't right....My husband is very mild mannered too, I wish I could say the same for me, especially going through this. But reaching out to this group, I knew was the right thing. Thank you for you, today. Your words mean so much to me. Thank you for sharing.
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We are glad you are here. This group has been so wonderfully supportive. I wanted to mention, please don’t be hard on yourself when you “just blurt out stuff”. Sometimes we are just so surprised at what is happening to our loved one that things just come out. I know that is the case with me…so I’m hoping that by reading people’s advice here, in time, I’ll figure it out and be calmer in my responses also. When you’ve lived with a person (in my case 51 years) you come to know them and when they begin to change from who they’ve always been, it takes awhile to adjust. Take good care of yourself.
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10 ReactionsI see our situation in much of what you wrote. My husband is also very mild-mannered, and I recently saw an outburst directed at a family member. That is rare, and as a result, very surprising. Pointing out misremembering is something I need to work on in myself…I am a work in progress. 😊 Also, thankfully, the changes in my husband have been slow and gradual…I like to remember that not everyone diagnosed with MCI advances to Alzheimer’s, but his older sister passed away from Alzheimer’s 2 years ago. We were snowbirds also, but as of last year, that has stopped. We will stay in the northeast, near family. I find being out of familiar surroundings is stressful for him. And your words “Let it go” are so very important. Thank you again, for your post! Be well.
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10 ReactionsMost of us have experienced fear and loneliness, anger, depression, resentment, the whole list. We took are snowbirds or at this point I should say I am. I took my husband with me for as many years as I could. The last time was three years ago. I drove to Key Largo and then flew home and flew back with him. At this point the challenges are just too great and I can no longer do it. He resides in nursing care since January. Disagreeing with him or correcting him only leads to anger and frustration for both of us. It took time to learn not to but you will get there. Just remember it isn't him it's the disease. Having a specific diagnosis also helps eliminate some of the fear by learning what to expect. It seems to me that a diagnosis of MCI just means he isn't far enough along for the actual diagnosis. It's like Parkinsonism. Waiting for things to get worse so you can figure out the name of the road you already know you are on.
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10 ReactionsHi Scott I am new to group my husband was diagnosed with a progressive neurological disease that has a cognitive component to it. We are lucky he is still working right now but changes are coming up cognitively more than physically and although he is functional I am struggling with the changes and the change in demand on me. I am so happy to find this group
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3 ReactionsHello and good morning, @brendaa4boy It's nice to e-meet you here on Mayo Connect. I am sorry to read of your husband's healthcare journey. Tough for him, and caregiving is also a challenging journey all its own. I, too, am happy you found this group,
Changes during caregiving were always some of the most demanding aspects for me. It seemed there was never a groove that lasted long enough for me to feel grounded. My dad was a longtime alcoholic, and I found the AA mantra of "one day at a time" was a huge help to me. This enabled me to view each day as a separate event. At bedtime, I'd say to myself, 'Well, this day is in the books and now I need to sleep to fortify me for whatever different will come tomorrow.' It didn't always work, but I do think it helped many nights!
Throughout my early life, change was very difficult for me. Luckily, early in our marriage, my wife taught me to accept that changes in life are inevitable, should be embraced, and enjoyed.
Well, at least that helped me accept change, but caregiving changes were a whole different realm. Looking forward and never back did help me manage those many caregiving changes.
I'm here and happy to answer any questions.
Strength, Courage, & Peace
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5 ReactionsNo one has ever said your words “MCI just means he isn’t far enough along for the actual diagnosis.” I can’t tell you what those words mean to me. I have lived for years seeing the changes but no one has really explained it to me like you did. Now I realize he is in the stages, to agree and have patience is my first priority to understand. He knows he can’t remember words etc but I just say everyone forgets. Thank you thank you again. Jean
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3 ReactionsMy wife diagnosed with MCI 8 months ago seems to cycle through good days (weeks) and not good days. One minute everything seems fine we are getting along and then something changes and she retreats away from me. When the frustration rises, I apparently raise my voice and this pushes her away further. I am trying to recognize these are cycles and not get frustrated. I have to do better…. But yes this is hard on everyone.
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6 ReactionsIt’s been a while since I commented. I’ve actually been in talk therapy every three weeks and that has helped me. My husband has a little more than mild cognitive impairment. It’s been about two years now all of our children recognize it not any friends or other relatives. he is quite brilliant. He does New York Times crossword puzzle Every Saturday but now he does it with our son who’s 27 who lives in Arizona they do it over the phone. through this journey. I’ve learned a lot about what to say, and what not to say I was told by not only his neurologist, but my therapist that we should never bring up MCI. when he asks questions over and over again or if it he forgets something, I just told him — we’re not supposed to say “I just told you that or remember we’ve been over that last week.?” No he doesn’t remember and it just gets them all anxious and upset. I learned that anxiety is a big part of this disease and so he takes some meds for anxiety, but the doctor wants him to go up 25 to 50 mg more to keep that under control and has recommended another medication like Aricept, but he doesn’t really wanna go on that either. He takes a number of supplements from our naturopathic doctor and walks outside 3-5 miles every day gets a lot of sun and pretty much takes a three hour nap every day. we cook together we eat dinner together we walk sometimes together we go out to lunch or dinner together and we visit our children who live around us as often as we can. I try to keep it light and as much Sameness as possible because I’ve learned that too much change is not at all good for MCI patients. I thought maybe we would take a ballroom dancing he agreed so let’s see if we can do that. We do love to travel but finances are very tight so for now we’ll do fun things around the house. We watch Netflix movies together the Yankees together, we play scrabble or otger board games And try to make things as normal as possible. As for me it’s very challenging because knowing how this man was for the last 35 years, a sharp intelligent, very good, looking dapper, kind, strong, compassionate man, a loving father and a loving husband, and to see these subtle changes happening to him Can be very emotional and disheartening as a caregiver. I’m a little bit scared as to where this is all gonna be going and what’s going to happen but I do take one day at a time. I pray a lot. I read I work part time and I’m grateful for any type of support therapy I can get so thank you for listening and I hope that this has helped someone to understand their situation a little bit better. Does anyone in this group recommend a medication that is helping their loved one? God Bless!
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10 ReactionsThank you. 😮
@kjc48 there are very helpful videos on YouTube I believe you will find helpful.
One is anything from Dementia Careblazers. The woman who produces the videos offers many tips when carding for someone with dementia and MCI.
A woman named Teepa Snow has videos that ard terrific.
I really like “Answers About Alzheimer’s” the woman and her “mother” role play different situations. Each video is educational.
Hope you find this helpful.
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