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MCI: Trying to find our best path and what to do nextCaregivers: Dementia | Last Active: Oct 28, 2020 | Replies (29)
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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.
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.
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?
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?
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?