MCI: Trying to find our best path and what to do next

Posted by ann59 @ann59, Oct 1 11:58am

Just needing to talk with someone who will understand. My husband (age 79) has been diagnosed with MCI. He has a terrible Essential Tremor; received his first Deep Brain Stimulator (DBS) in 2016. At that time he received a neuropsychological evaluation by a PsyD in neuropsychology at the UC Neuroscience Institute. The result was MCI. I didn't see it as he was on an extremely high does of primidone; I thought that had effected his behavior. He was recently retested after receiving his second stimulator and the results were conclusive for MCI with some decline since the first test. After reading everything I can get my hands on, I believe that he has the type of MCI that leads to Alzheimer's. More than his memory is effected. His mother had AD. Thankfully he is still very independent, capable of daily activities and still able to maintain his work on the farm-preparing the fields, planting alfalfa, maintaining barns, equipment, etc. I do notice slight changes in judgement. Gradually he has accepted the diagnosis of MCI. We have discussed it with his PC Doc and she has prescribed medication. Although what I have read, medication is of little to no value. I have talked with him about the HABIT program at Mayo and think that we might explore that this winter when the farm is not as demanding. If we could arrange to do it on line-we are not going anywhere due to COVID. Actually at this point the tremor is more a handicap than the MCI. I just wonder how quickly the MCI could progress. Yesterday he did not remember the last four digits of his SS #. Am I getting paranoid? Are we doing all that we can to slow the progression? Should we be seeing a Dr. who specializes in dementia? Reaching out for help and understanding.

Hi @ann59 and welcome to the Caregivers: Dementia group. I can imagine that you're worried. You're not alone. @debbraw @janeejane @jimmyj1216 @virginianaeve @victorkach @pattyinal all have experience caring for a partner or loved one with mild cognitive impairment.

@debbraw can also give you first hand knowledge about the HABIT program at Mayo Clinic. Some of it has moved to an online setting due to COVID. You can learn more about it and follow the blog written by the directors of HABIT in AZ, FL and MN here: https://connect.mayoclinic.org/page/living-with-mild-cognitive-impairment-mci/

Ann, how is your husband reacting or accepting the diagnosis of MCI? It sounds like you're able to talk openly about it. Has he shared his concerns about progression with you too?

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It has been a process. He is marvelous, in our relationship we have always been a team. Luckily we have been able to discuss the MCI and of course, he is aware that his mother had AD which could impact his long term prognosis. He has read the report from the neurologist and openly discussed the MCI with the Primary Care Dr. As well as things I have found on line from Mayo. I'm not worried exactly. Mostly concerned that we do everything possible to help him stay at this stage for as long as possible. It's a confusing disease. I asked the neurologist if there was a way to estimate how it could progress. She said, It doesn't work that way. So we will go day by day and enjoy the days we have. Who knows-he may stay where he is for some time, although there has been slippage from the 2016 to 2020 test. There doesn't seem to be anyway to judge a timeline. My biggest concern is that we will do all we can toward his health, make wise decisions and I can stay strong and in good health. I think we will look into the HABIT program this winter. That seems to be the best thing to do right now, unless you have other suggestions. I have read that studies in Sweden have indicated positive outcomes from such programs. Right now, he is busy winding up things on the farm for winter. We know that at this time there is no cure.

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Hi @ann59. I want to add my Welcome to Colleen's. I am so sorry to hear about your husband’s diagnosis. I know from experience how unsettling the news about MCI can be. My husband was diagnosed in 2015 with Mild Cognitive Impairment. At this point it has progressed substantially, He is probably in the moderate/late stage of dementia. Everyone's journey is different, but I can share with you several things that have brought me a huge amount of comfort.

First, the HABIT program. HABIT stands for Healthy Actions to Benefit Independence and Thinking. I feel like from the way you have described your husband's cognitive abilities, he would be perfect for it. As you probably know from your reading, it’s a two week program that helps the person diagnosed AND the partner learn how to deal with the “new normal.” I can’t even tell you how valuable this program was to us as a couple and to our extended family. If you haven't watched this already, here’s a link so you can watch a video about the program.
https://www.mayoclinic.org/departments-centers/psychiatry/services/habit-program
With COVID in the picture, they are doing this remotely now. If there is any way you can get involved with HABIT, I highly recommend it.

Second, I explored all the services available from our local Council on Aging. One of the excellent services they provide is a Caregivers Support Group. With the virus rampant now, they even offer support services on line. Also, they provide amazingly helpful classes. Some of the best information I ever got was from a 6-week class they offered free called The Savvy Caregiver. Like you, I wanted to know about the timeline, and like you, I soon realized its different for everyone. However, there are clear stages for dementia just like other diseases and this program helped in identifying prominent changes in each stage of the process. The program was originally developed by a group from the University of Minnesota. It offers advice for all the stages of dementia. It begins with the time right after diagnosis and goes through all the way to end-stage dementia. It gave me as a caretaker information on how to assess risks, how to relieve stress and many many other important topics. You can get the manual at this address:
https://www.hcinteractive.com/files/pdf/SavvyCaregiverManual.pdf
It's 176 pages but its packed with down-to-earth guidance for day to day life! If you can't take the course, I would download the manual. In fact, I've taken the course and I still downloaded the manual for reference.

Third, I found an understanding, compassionate therapist for ME. It is such a relief to have someone looking out for me while I am caring for my husband. I value the communication I have with my husband and our children, but there are things about how I am feeling that I don't always want to share with them – or with friends. My therapist is my best sounding board and sometimes biggest cheerleader! The HABIT program, my support group and my therapist have brought me tremendous peace of mind. Through them, I have learned that you CANNOT do this alone. Looking into options as you are doing now will help you immensely when and if you see the kind of decline many of us have experienced.

I'm wishing you the best on this difficult journey and I'm happy to answer whatever questions you may have about what I've shared. I hope you will check into the HABIT program and see if it’s a fit for you. Also, would you check out the Savvy Caregiver website and let me know what you think of that?

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Hi @ann59, I wanted to check back in and see if you received @debbraw's message to you in this discussion. She offers a lot of useful and helpful information. I'd also like to invite @carollc @gvurta6 @mmp into this discussion.

Ann, you mentioned elsewhere that your husband doesn't accept the diagnosis of MCI. Does he not accept it or does he prefer to ignore it? How are you doing these days?

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He accepts it, just doesn't like to confront it. I can't tell if that's the disease talking or his attitude. He's always been good at denial. He says he agrees that we need to make changes. We have an appointment with our lawyer and financial advisor in a few weeks, after that we are talking about contacting a realtor. I think that is our first step in disposing of real estate. We have talked about just selling the farm and staying here-but he said he doesn't want to watch someone else take over the farm. It would be too hard. I'm just concerned that when the time comes to look for smaller property, he will be resistant to execute. For now, I've decided not to borrow trouble from the future and just move on day by day to the eventual end of moving. I know that is best. We are about 50 minutes out of Cincinnati, Ohio our preferred health care providers-and 45 minutes from our daughter who is my main support. That with the weight of a large two story home-5 acre lot and 400 acre farm makes it impractical to stay here. Also, it is difficult to get help in the country and services are not as readily available as they are in Northern Ky. And yes I did connect with debbraw and she has been incredibly helpful. I down loaded the Savey Caretaker guide as she suggested and have read it once. I'm sure I'll revisit it time after time. Also made some other contacts that she suggested as being helpful. I find Alz.org offers great information; I have attended several of their webinars which have been useful. Be glad when COVID is over so I can attend some in person. But for now, feel fortunate to have the virtual sites. Our situation is slightly different due to my husband's essential tremor combined with the MCI. We move on step by step, making each day the best day possible, sharing our journey; planning for the worst, hoping for the best. Thanks for checking on us. I will contact the other people as soon as possible.

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@ann59

He accepts it, just doesn't like to confront it. I can't tell if that's the disease talking or his attitude. He's always been good at denial. He says he agrees that we need to make changes. We have an appointment with our lawyer and financial advisor in a few weeks, after that we are talking about contacting a realtor. I think that is our first step in disposing of real estate. We have talked about just selling the farm and staying here-but he said he doesn't want to watch someone else take over the farm. It would be too hard. I'm just concerned that when the time comes to look for smaller property, he will be resistant to execute. For now, I've decided not to borrow trouble from the future and just move on day by day to the eventual end of moving. I know that is best. We are about 50 minutes out of Cincinnati, Ohio our preferred health care providers-and 45 minutes from our daughter who is my main support. That with the weight of a large two story home-5 acre lot and 400 acre farm makes it impractical to stay here. Also, it is difficult to get help in the country and services are not as readily available as they are in Northern Ky. And yes I did connect with debbraw and she has been incredibly helpful. I down loaded the Savey Caretaker guide as she suggested and have read it once. I'm sure I'll revisit it time after time. Also made some other contacts that she suggested as being helpful. I find Alz.org offers great information; I have attended several of their webinars which have been useful. Be glad when COVID is over so I can attend some in person. But for now, feel fortunate to have the virtual sites. Our situation is slightly different due to my husband's essential tremor combined with the MCI. We move on step by step, making each day the best day possible, sharing our journey; planning for the worst, hoping for the best. Thanks for checking on us. I will contact the other people as soon as possible.

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@ann59, I love that phrase "I've decided not to borrow trouble from the future and just move on day by day." – so wise, but often a challenge to do. The criteria for the decisions today will be different when the time comes for you to have to make the decisions. I'm confident that you will cross that bridge when the time comes. I'm glad to hear that you have solid support from your daughter. That is so important.

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Thanks for your comment and concern. I'm a planner, so with the help of my husband and daughter there is a long term plan developing-those often have to be adjusted as time moves on. I can do that and hopefully will be able to bring my husband along in the process. At this point, we are on the same page, hope that will continue as we move along. Just concerned about the move-want him to adjust well, I worry about that, but he tells me he will be o.k. It's going to be a big change for both of us. I don't like chaos, so will be happy to have this part over and be settled in our new little nest which I hope to have accomplished by fall of 2021. Our first goal is to be together as long as possible. I think he has had the beginnings of this disease for at least 10 years. The first Diagnosis was is 2016. At that time, he chose to deny it. Now he accepts it. The disease is so cunning; I wish I could figure out a time line, but I've been told repeatedly there is none. One a positive note, he is still functioning well, just notice small changes in memory, decision making, flexibility. His mother had essential tremor and Alzheimer's, I have a good idea of what the future can bring. We live about 1 1/2 hour from the Sander's Brown Center at the University of Ky. They do an incredible amount of research. It's on my list to look into them as a resource-I know there is no cure, but want to take advantage of every resource that I can find. I'm hoping we can enroll in the HABIT course sometime over the winter, if it is offered on line. As always-Lots to do. Take care and stay safe. Ann59

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My physically healthy wife retired in 2012 because of problems with her memory in a high pressure environment. In 2014 she had a memory test given by a psychologist. This psychologist then recommended she take a number of medications with multiple dangerous side effects. My wife and I agreed that she should not take the medications. Her ability to remember has gotten only worse. In 2020 she saw a Neurologist, went through a MRI, blood tests, was examined by an ENT doctor and the neurologist diagnosed her with MCI. the Neurologist stated that there are no current medications that are successful stopping, slowing or curing MCI and the best we can do are (we heard this all before).stay active, limit alcohol, etc . We've had issues with the gas stove being left on, forgetting to take a pill, forgetting names of friends. My question for anyone or eveyone is WHAT CAN I EXPECT FOR THE FUTURE? Any timeframe would be great because the neurologist said he cannot give us any timeframe or progression. He also could not give us any ideas as to what to expect. I'm looking for any help. Thanks in advance

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@tunared

My physically healthy wife retired in 2012 because of problems with her memory in a high pressure environment. In 2014 she had a memory test given by a psychologist. This psychologist then recommended she take a number of medications with multiple dangerous side effects. My wife and I agreed that she should not take the medications. Her ability to remember has gotten only worse. In 2020 she saw a Neurologist, went through a MRI, blood tests, was examined by an ENT doctor and the neurologist diagnosed her with MCI. the Neurologist stated that there are no current medications that are successful stopping, slowing or curing MCI and the best we can do are (we heard this all before).stay active, limit alcohol, etc . We've had issues with the gas stove being left on, forgetting to take a pill, forgetting names of friends. My question for anyone or eveyone is WHAT CAN I EXPECT FOR THE FUTURE? Any timeframe would be great because the neurologist said he cannot give us any timeframe or progression. He also could not give us any ideas as to what to expect. I'm looking for any help. Thanks in advance

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Hi @tunared, welcome to Mayo Clinic Connect. You'll notice that I moved your message to this existing discussion called "MCI: Trying to find our best path and what to do next." I did this so you can connect with other members like @debbraw @virginianaeve @jodeej @joancampy @sueinmn and more who have been where you are now. Click VIEW & REPLY to scroll through the past messages.

Like you, @ann59 is also trying to understand and prepare for what to expect in the future when your spouse has been diagnosed with mild cognitive impairment (MCI). A timeframe is literally impossible to offer. Every person progresses at their own rate. I know that is frustrating. The unknown is so scary. But you're not alone and there are ways you can prepare. Connecting with people here is a good first step to help with coping.

Tunared/Dan, is your wife aware of her diagnosis? Are you able to talk about it openly?

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@tunared

My physically healthy wife retired in 2012 because of problems with her memory in a high pressure environment. In 2014 she had a memory test given by a psychologist. This psychologist then recommended she take a number of medications with multiple dangerous side effects. My wife and I agreed that she should not take the medications. Her ability to remember has gotten only worse. In 2020 she saw a Neurologist, went through a MRI, blood tests, was examined by an ENT doctor and the neurologist diagnosed her with MCI. the Neurologist stated that there are no current medications that are successful stopping, slowing or curing MCI and the best we can do are (we heard this all before).stay active, limit alcohol, etc . We've had issues with the gas stove being left on, forgetting to take a pill, forgetting names of friends. My question for anyone or eveyone is WHAT CAN I EXPECT FOR THE FUTURE? Any timeframe would be great because the neurologist said he cannot give us any timeframe or progression. He also could not give us any ideas as to what to expect. I'm looking for any help. Thanks in advance

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Hi Dan – If any of us could predict the future, we would be famous! Right now my husband is resisting getting a formal diagnosis, but MCI is apparent to family and close friends. My daughters are gently trying to get him to recognize it, but when I suggest it, I get anger – so I just work on adjusting right now. Has your wife shared, or allowed you to share, her diagnosis with family and friends?

Like you we are seeing doors left unlocked, missed pills, difficulty with words and computer tasks, and forgetting the steps in mildly complex operations like getting a simple meal ready. He even joked the other day about "being Alice" (my Mom) when he set the timer for 40 seconds instead of 40 minutes and was surprised how quickly the time passed.

This pattern is familiar to me, I was caretaker for my Mom who had MCI for about 7 years, and hers did not really progress much before her death. My father-in-law progressed over about 10 years to relatively severe dementia in his 80's. On the other hand, my son-in-law's Mom progressed from MCI to death from complications of dementia at 71 in only 8 short years. One of our best friends is about 3 years ahead of us on this journey, and we are able to talk often and support each other. In winter we usually spend time together, and it is easy to see the pattern of "good days, bad days" – are you seeing it?

Our local MCI support group at the Senior Center is on hiatus because the director retired, and she was the leader, as soon as it resumes I will be encouraging "us" to join. In the mean time, I talk to my friend often, and we can even laugh sometimes at the parallels in our experiences.

One way I try to cope is by helping him to have everything he needs in sight & within reach. For example, he now has an office organizer sitting right near his computer on the kitchen table with basic supplies, current important papers, today's pills and other important stuff right at hand and clearly visible. It has already saved much time of the two of us searching for where he put things, and if I find misplaced items, I put them right there. Every shelf or tote in the laundry & his workroom are clearly marked with contents and I try to be diligent about getting things in the right places. Next stop – his garage!

I also place post-it notes where he sits to remind him of tasks, appointments, and my schedule for the day – one thing per post-it so when it is past, it is immediately discarded. If I leave the house, not only do I tell him when I go, I leave a post-it of where, when I expect to return, and I call if I am delayed.

Finally, instead of expecting him to do things he could easily manage in the past, I am telling him he can retire, and we hire things done (like installing a new door or changing light fixtures.) But other tasks I encourage him to do to stay active, like mowing & raking, pruning bushes, etc. Maybe with your wife, that might mean instead of you trying to do everything in the house as she progresses, you get a regular person to come in and do laundry and cleaning, find suitable microwave meals or order in – you get the idea. We also continue to try to play games with friends – hard right now, but we have even played a dice game on Zoom.

Do you or your wife have someone you can talk to about what you are experiencing? Either friends or family with experience, or a local MCI group? That is probably my biggest help. And it is SO important to take care of yourself. Also, do you have a trusted friend or family member who can give you breaks as life progresses? It is especially important to line up someone who can step in if you become ill or some other emergency arises. This is a marathon, not a sprint. Come back and visit usoften.
Sue

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@tunared

My physically healthy wife retired in 2012 because of problems with her memory in a high pressure environment. In 2014 she had a memory test given by a psychologist. This psychologist then recommended she take a number of medications with multiple dangerous side effects. My wife and I agreed that she should not take the medications. Her ability to remember has gotten only worse. In 2020 she saw a Neurologist, went through a MRI, blood tests, was examined by an ENT doctor and the neurologist diagnosed her with MCI. the Neurologist stated that there are no current medications that are successful stopping, slowing or curing MCI and the best we can do are (we heard this all before).stay active, limit alcohol, etc . We've had issues with the gas stove being left on, forgetting to take a pill, forgetting names of friends. My question for anyone or eveyone is WHAT CAN I EXPECT FOR THE FUTURE? Any timeframe would be great because the neurologist said he cannot give us any timeframe or progression. He also could not give us any ideas as to what to expect. I'm looking for any help. Thanks in advance

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I understand completely as my husband and I are traveling the same road. When I asked the neurologist for a time line she said, "It doesn't work that way". My husband was first diagnosed in 2016 before surgery for Deep Brain Stimulation surgery-he also has a terrible Essential Tremor. I had suspected cognitive decline several years before his test, but he wasn't open to accepting it at that time. He was tested again in 2019. The second test indicated significant decline in what is called "executive function"-decision making, problem solving, memory, flexibility of thinking etc. His mother had Alzheimer's, so it is likely he is on the same journey. After the second test, he began to accept the Diagnosis. However, it is nearly impossible for him to mentally connect the diagnosis with his behavior. From what I can gather, this is a day by day disease. His primary care physician has prescribed Donepezil, with the comment, it helps slow the progression in SOME people-there is no cure. In short, it appears, that every person's journey is somewhat different, somewhat the same. I'm a planner, so it makes it difficult not to have a time frame. In the meantime, there are things I know we need to do-the neurologist said to get out medical directives and financial affairs in order. I started there along with conditioning my husband to accept the Diagnosis so that he could participate as best he can in the decisions facing us. We need to relocate-my current challenge. Thankfully at this point he is basically independent, but his decision making capacity is declining rapidly which causes conflict. It's a frustrating situation. I've come to the conclusion that all I can do, is the best I can do from day to day. I would like for us to take the HABIT program this winter if it is offered virtually-if I can talk him into it. I've heard good things about it. Also, there are excellent resourses on Alz.org. I've attended several webinars there that have been helpful. We live mid way between the University of KY and the University of Cincinnati. His surgeries have been at UC, they connect with Mayo. UK is suppose to have a nationally recognized research program in dementia, so I want to explore that resource as well. Other than that, it looks as though you might explore getting rid of the gas range and begin building your support network-you will need it. It is important to take care of yourself too.

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@colleenyoung

Hi @tunared, welcome to Mayo Clinic Connect. You'll notice that I moved your message to this existing discussion called "MCI: Trying to find our best path and what to do next." I did this so you can connect with other members like @debbraw @virginianaeve @jodeej @joancampy @sueinmn and more who have been where you are now. Click VIEW & REPLY to scroll through the past messages.

Like you, @ann59 is also trying to understand and prepare for what to expect in the future when your spouse has been diagnosed with mild cognitive impairment (MCI). A timeframe is literally impossible to offer. Every person progresses at their own rate. I know that is frustrating. The unknown is so scary. But you're not alone and there are ways you can prepare. Connecting with people here is a good first step to help with coping.

Tunared/Dan, is your wife aware of her diagnosis? Are you able to talk about it openly?

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My wife is aware and we talk about the diagnosis. luckily, we have good communication between us and can discuss just about anything. her most common comment is "we live for each day because we don't know what tomorrow brings".

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@sueinmn

Hi Dan – If any of us could predict the future, we would be famous! Right now my husband is resisting getting a formal diagnosis, but MCI is apparent to family and close friends. My daughters are gently trying to get him to recognize it, but when I suggest it, I get anger – so I just work on adjusting right now. Has your wife shared, or allowed you to share, her diagnosis with family and friends?

Like you we are seeing doors left unlocked, missed pills, difficulty with words and computer tasks, and forgetting the steps in mildly complex operations like getting a simple meal ready. He even joked the other day about "being Alice" (my Mom) when he set the timer for 40 seconds instead of 40 minutes and was surprised how quickly the time passed.

This pattern is familiar to me, I was caretaker for my Mom who had MCI for about 7 years, and hers did not really progress much before her death. My father-in-law progressed over about 10 years to relatively severe dementia in his 80's. On the other hand, my son-in-law's Mom progressed from MCI to death from complications of dementia at 71 in only 8 short years. One of our best friends is about 3 years ahead of us on this journey, and we are able to talk often and support each other. In winter we usually spend time together, and it is easy to see the pattern of "good days, bad days" – are you seeing it?

Our local MCI support group at the Senior Center is on hiatus because the director retired, and she was the leader, as soon as it resumes I will be encouraging "us" to join. In the mean time, I talk to my friend often, and we can even laugh sometimes at the parallels in our experiences.

One way I try to cope is by helping him to have everything he needs in sight & within reach. For example, he now has an office organizer sitting right near his computer on the kitchen table with basic supplies, current important papers, today's pills and other important stuff right at hand and clearly visible. It has already saved much time of the two of us searching for where he put things, and if I find misplaced items, I put them right there. Every shelf or tote in the laundry & his workroom are clearly marked with contents and I try to be diligent about getting things in the right places. Next stop – his garage!

I also place post-it notes where he sits to remind him of tasks, appointments, and my schedule for the day – one thing per post-it so when it is past, it is immediately discarded. If I leave the house, not only do I tell him when I go, I leave a post-it of where, when I expect to return, and I call if I am delayed.

Finally, instead of expecting him to do things he could easily manage in the past, I am telling him he can retire, and we hire things done (like installing a new door or changing light fixtures.) But other tasks I encourage him to do to stay active, like mowing & raking, pruning bushes, etc. Maybe with your wife, that might mean instead of you trying to do everything in the house as she progresses, you get a regular person to come in and do laundry and cleaning, find suitable microwave meals or order in – you get the idea. We also continue to try to play games with friends – hard right now, but we have even played a dice game on Zoom.

Do you or your wife have someone you can talk to about what you are experiencing? Either friends or family with experience, or a local MCI group? That is probably my biggest help. And it is SO important to take care of yourself. Also, do you have a trusted friend or family member who can give you breaks as life progresses? It is especially important to line up someone who can step in if you become ill or some other emergency arises. This is a marathon, not a sprint. Come back and visit usoften.
Sue

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Hi Sue. My mother-in-law also had the full progression (MCI/Dementia/Alzheimer's) while she lived near us (about 18 years) so we have some experience. But because she kept to her self, I really didn’t know everything she went through. I regret not checking in with her more often now but I also never thought my wife would also go through the same disease.
We have two kids but they are in denial and say it’s just old age. I have a close friends we talk to but they live about 175 miles away. my wife pushes me to go for a bike (motorcycle) ride to take a break, which I do but I’m worrying when I am by myself. I never not of it as preparing for a marathon but I’m realizing it now. Thanks
Dan

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@tunared

My physically healthy wife retired in 2012 because of problems with her memory in a high pressure environment. In 2014 she had a memory test given by a psychologist. This psychologist then recommended she take a number of medications with multiple dangerous side effects. My wife and I agreed that she should not take the medications. Her ability to remember has gotten only worse. In 2020 she saw a Neurologist, went through a MRI, blood tests, was examined by an ENT doctor and the neurologist diagnosed her with MCI. the Neurologist stated that there are no current medications that are successful stopping, slowing or curing MCI and the best we can do are (we heard this all before).stay active, limit alcohol, etc . We've had issues with the gas stove being left on, forgetting to take a pill, forgetting names of friends. My question for anyone or eveyone is WHAT CAN I EXPECT FOR THE FUTURE? Any timeframe would be great because the neurologist said he cannot give us any timeframe or progression. He also could not give us any ideas as to what to expect. I'm looking for any help. Thanks in advance

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Hi DanL @tunared – Welcome to the Connect community. I know you'd probably rather not be here, but there is a ton of good information from the caring people who visit here and share their experiences. I am sorry to hear about your wife's diagnosis. My husband was diagnosed in 2015 with Mild Cognitive Impairment. In retrospect, I can see that he was exhibiting symptoms long before – as in your case, when you were seeing symptoms as early as 2012, but didn't get the "official" diagnosis until this year.

When you ask about the future, I have to say that everyone's journey is different, but I can let you know what ours has been like. Unfortunately, there is not a timeframe that fits all. In general, the experts say that life expectancy after diagnosis can range from 8 to 20 years. In our case, my husband has declined substantially in the 5 years since his diagnosis, He is probably in the moderate/late stage of dementia.

Information regarding the stages of dementia has been extremely helpful to me is. I'm attaching a staging chart from the Alzheimer's Association that might be helpful in answering some of your questions. I find it useful to document activities and behaviors as I observe them that help me determine where we are in the progression of the disease. For example, my husband used to prepare his own coffee & toast for breakfast then grab a sandwich or whatever for lunch. I made dinner. He had the "job" of putting dishes in the dishwasher and then unloading the dishwasher when it finished running. Nowadays, he can still make coffee, but he can't put together the simplest of meals. He even finds it frustrating if I ask him to put out the silverware and/or napkins. I prepare and serve every meal and I take care of the dishes. I jot it down when we move from one level of competence to another so that I have an objective timeline to share with his neurologist and primary care physician.

I understand your concern regarding medication, but I would say that medication has been our friend. Neither of us were keen on having Ernie take any unnecessary meds, but ultimately we went with Aricept (which only works for 12 – 18 months). After that we added memantine (which gave us about another year). The most positive addition of meds we had was when his primary care doctor prescribed an anti-anxiety medication. It was so helpful in tamping down the feelings of frustration that inevitably accompany the loss of memory and independence.

You may have seen this in another post I wrote, but it bears repeating. Some of the best information I ever got was from a program developed by the University of Minnesota called "The Savvy Caregiver". It offers advice for all the stages of dementia – and it helps answer the question you are asking about "what can we expect?" It begins with the time right after diagnosis and goes all the way through to end-stage dementia. You can download the manual at this address:
https://www.hcinteractive.com/files/pdf/SavvyCaregiverManual.pdf
It's 176 pages but its packed with down-to-earth guidance for day to day life!

And with all that said, be sure to take care of yourself. I found an understanding, compassionate therapist for ME. I value the communication I have with my husband and our children, but there are things about how I am feeling right now that I don't always want to share with them – or with friends. My therapist is my best sounding board and sometimes my biggest cheerleader. And this Connect group is another great place to ask questions, chat with people have a similar experience, vent, and get support!

Looking for information and options as you are doing now will help you immensely in dealing with your current situation AND when or if you see the kind of decline many of us have experienced. Wishing you and your wife the very best. And I'm wondering if you could share more about the decline you've seen since 2012 when you first noticed the memory loss to now? Also, you know your wife's capabilities better than anyone. When you look at the staging chart, can you identify where you think you she fits in terms of progression?

Shared files

stages_of_alzheimers (stages_of_alzheimers.pdf)

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@ann59

I understand completely as my husband and I are traveling the same road. When I asked the neurologist for a time line she said, "It doesn't work that way". My husband was first diagnosed in 2016 before surgery for Deep Brain Stimulation surgery-he also has a terrible Essential Tremor. I had suspected cognitive decline several years before his test, but he wasn't open to accepting it at that time. He was tested again in 2019. The second test indicated significant decline in what is called "executive function"-decision making, problem solving, memory, flexibility of thinking etc. His mother had Alzheimer's, so it is likely he is on the same journey. After the second test, he began to accept the Diagnosis. However, it is nearly impossible for him to mentally connect the diagnosis with his behavior. From what I can gather, this is a day by day disease. His primary care physician has prescribed Donepezil, with the comment, it helps slow the progression in SOME people-there is no cure. In short, it appears, that every person's journey is somewhat different, somewhat the same. I'm a planner, so it makes it difficult not to have a time frame. In the meantime, there are things I know we need to do-the neurologist said to get out medical directives and financial affairs in order. I started there along with conditioning my husband to accept the Diagnosis so that he could participate as best he can in the decisions facing us. We need to relocate-my current challenge. Thankfully at this point he is basically independent, but his decision making capacity is declining rapidly which causes conflict. It's a frustrating situation. I've come to the conclusion that all I can do, is the best I can do from day to day. I would like for us to take the HABIT program this winter if it is offered virtually-if I can talk him into it. I've heard good things about it. Also, there are excellent resourses on Alz.org. I've attended several webinars there that have been helpful. We live mid way between the University of KY and the University of Cincinnati. His surgeries have been at UC, they connect with Mayo. UK is suppose to have a nationally recognized research program in dementia, so I want to explore that resource as well. Other than that, it looks as though you might explore getting rid of the gas range and begin building your support network-you will need it. It is important to take care of yourself too.

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hi Ann
It seems like my wife is not as far along as you husband and we are lucky in that my wife is very healthy in all other areas (no limitations, no medications) which I guess is unusual for a 71 year young lady. Because of our past careers, we are both VERY skeptical of pharmaceutical claims on the effectiveness of drugs and their side effects.
your comment about “declining rapidly” is kind of scary for both of us. not knowing how this disease progresses is very scary because it’s difficult to plan the future.
Dan

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