MCI: Trying to find our best path and what to do next
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.
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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.
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".
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
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:
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?
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.
Hi, Dan. My wife was diagnosed with MCI in 2011 and then had a comprehensive test in 2012 and was diagnosed with Alzheimer's Disease. The disease progressed very slowly, but steadily. I was able to take care of her in our home until this August when for her safety and mine she was admitted into a memory care facility. (She was frequently in danger of falling.) I thought you might benefit from some of the things that have been of great help to me over the past many years.
Like others have said "If you've seen one dementia patient, you've seen one dementia patient. Each situation is different." I gained a lot from attending every Alzheimer's Association class that was offered. Education and learning is very helpful for a caregiver. Our local hospital also has a Neurological Resource Center which has a library that has good material. It also has meeting rooms for classes but those aren't being used right now because of COVID.
A very important part of my learning process was to realize how important it is for a caregiver to take good care of himself, physically, mentally, emotionally, and spiritually. Very frequently the caregiver will die before their loved one. For her good, you must take good care of yourself. Develop a plan on how you are going to do that.
I benefit a great deal from a men's only support group that meets once a month (now it's a Zoom meeting but I'm looking forward to getting back to face-to-face meetings eventually.) The beauty of it is that I gain from the knowledge and caring support from others who have different types of experiences to share and to suggest possible solutions to my "crisis of the day". Also, as time goes on and new members join the group, I can share my knowledge and experience and support with them too. It's an important part of my support network.
We have a Aging and Long Term Care office in town. It's a state office that offers support for caregivers to help them care for their loved ones in their home as long as possible. (Your local community probably has a similar center, maybe under the name of Office of Aging and Adult Support or Aging and Disabilities, etc.) I was assigned a caseworker who had lots of information about other care resources in our area such as day care centers, in-home care services, counselors, etc. For low income clients it provides house cleaning and in-home care at little or no cost.
My income and assets are above their low income standards but even so they set me up with counseling service (as a military veteran) at no cost to me. I meet with him once a month and he helps me develop a plan of action for the latest challenge that I have at the time. Very helpful support. Also, for a while they did provide some light housekeeping services until I needed more skilled caregivers and they they had good information on in-home care resources. Sabrina came twice a week from 9am to noon to take care of Judy and do light housework so I could get away for appointments, errands, yardwork, etc. It was invaluable and at a very reasonable cost.
The Aging and Long Term Care office also coordinates a waiting list for a Powerful Tools for Caregivers class. I benefited from that class too. It also came with a useful book that I also frequently referred to. I highly recommend it if you can locate such a class. It is a practical class to help you to care for your wife and also to take care of yourself.
Of course the Mayo Clinic Connect is a great support group too. Many of us caregivers have found that part of our job is doing problem solving with the latest wrinkle that developed in the care. This group can often come up with many useful suggestions for anything that comes up, and maybe one of the suggestions will work very well for you.
Wishing the best for you and your wife!
Hi Dan @tunared – Here's one more thing that might help – any of us! This group puts out a series of webinars focused on caregiving. They are free. Here is the link. If you scroll down to see the link called "download calendar" you will get a list of all of their upcoming webinars. Some are focused on particular types of dementia, some focus on MCI. Could you check this out and see if something here might be a good fit?
mr. Wentz, thanks for you help. I'll look into some of your recommendations. Give your wife a hug from a friend you are helping. Dan
I hope you and your wife are moving along with whatever path you have chosen and are doing well. It is quite an adjustment in many ways. It sounds as though you two are able to talk and plan together which is such a blessing and wonderful. My husband and I are doing the same. Right now his diagnosis is early MCI. Sometimes I feel as though we are on a treadmill as we are trying to get as many plans in place as possible while he can participate. I'm very grateful that he is accepting, open and we can continue a team approach as we have our married life. Some parts of his thinking are not as sharp as they use to be, other parts I can see no difference. I have no idea how long this part of the disease will allow him to participate with me, but we plan to take advantage of each and every day. I agree with the person who wrote, "When you have seen one Alzheimer's patient, you've seen one Alzheimer's patient". It's a most perplexing disease; it seems that each person travels their own journey. Our outlook is to plan for the worse and hope for the best-along with enjoying each and every minute we have while being as pro-active as possible. I wish many enjoyable minutes for you and your wife as you plan for your future.