Dealing with a Spouse with a “Mild Cognitive Impairment”

I don’t think as parents we ever stop wanting to protect our children, regardless of their age, of the harsh realities of the not so pretty parts of our daily lives when we live with dementia. Even though they are adamant about wanting to be there for us, and help anyway they can, we still find it hard to share the realities of our days. Our daughter left yesterday to enjoy a nice vacation trip… there is no way I would tell when I talked with her that her dad left home yesterday, drove into town, saw a couple of policeman parked on the side of the road, and stopped to ask for help because people have a hit out on him. He experiences delusions. This was a first for him, but it may have also been a blessing in disguise because I have been trying to stop his driving completely and now thanks to his actions yesterday I may be able to. He even ask me this morning about selling his truck. I have not shared this with any of our three children. They live busy lives and have teenagers to keep up with, there is nothing they can do. As long as I can handle my husband’s day to day on my own I will.

I can tell you that i have cried so many "silent tears" where no one is aware. It is very lonely and hard place to imagine being in. I have been through all the stages of grieving even though my sweet husband is still alive. The MCD is not severe at this point but i see it increasing daily. It is scary, tramautizing, and i feel that nobody understands the impact it has on me or him. Although my husband seems ok with the circumstance to a certain degree. His biggest complaint would be not being able to walk due to parkinsons. He doesnt recognize that he has cognitive decline. I go to counseling a few times a month to vent and woe is me. It helps get things off my mind. I feel like the world is a different place now. My perception of life is different than it was before. I have little support from family and i have to pay counselors for support. I find myself being more cynical than i used to be.

It's so easy to be angry and become cynical. In fact, I believe it's an inevitable part of this journey we're all on (I hate that use of "journey" but needs must). The thing is, you can't live for long, certainly not happily, if you carry that around with you all the time. Life is different now and the challenges are read and increasing, but we, as caregivers, still have our own lives to live and enjoy. It's so important to have a support team. This site is invaluable, but it's good to have real people you can speak to honestly and openly. It's not courageous to keep your feelings to yourself; it's self-destruction. Seeing a therapist is a good idea and a good starting point. Can you find support groups in your area that meet in person? Can you find other caregivers who might be in a similar situation to yours? No one, even a therapist, really understands unless they're dealing with this overwhelming, day-in, day-out new reality. I know of many folks who are caring for declining spouses. Sharing our stories, even at secondhand is really helpful and it keeps things in perspective. Someone's always worse off than you are. Find joy where you can and don't let it slip away.

Please feel free to use this as a "woe is me" site if you need to vent some steam. We're all human, and we've all been there.
My husband seems to be in the same general state as yours with MCI. He has few memories of our lives together, is relatively independent but gets lost, can't work his phone, etc. I'm handling it so far by trying to maintain my other relationships while I'm still free to do so. I know that when his dementia worsens I'll be a lot more limited. I intend to care for him at home as long as possible. So, I walk a few miles a day, exercise a bit with weights at home, and do stretching exercises. Endorphins are good. I try to befriend new people so I'm not so lonely and maintain good relationships with family, but we don't have many relatives nearby. Basically, I suggest exercise and friendships...and this site.

There may not be anything your kids can do, but I think you owe it to them to tell them what's going on. Dementia affects the whole family and that certainly includes children, especially adult children. My son-in-law's mother died of Alzheimer's a couple of years ago after seven years of decline. My daughter and her whole family visited often, though it meant a long drive, and they always took their two boys, who were about ten and fourteen when the whole thing started. Now that my husband has Alzheimer's, my two adult children and my grandsons (16 and 20) know exactly what's going on, how to deal with it and be compassionate and unafraid. Someone on this list mentioned telling the neighbors so they won't be spooked by any strangeness and also so they can help keep an eye on the dementia sufferer. If they see him wandering off, they might be able to intervene or let someone know. My husband doesn't seem to fully realize or accept what's happening, but everyone who knows him knows exactly what's happening and are able to lend support, even if it's just moral support, which is what we mostly need.

There may not be anything your kids can do, but I think you owe it to them to tell them what's going on. Dementia affects the whole family and that certainly includes children, especially adult children. My son-in-law's mother died of Alzheimer's a couple of years ago after seven years of decline. My daughter and her whole family visited often, though it meant a long drive, and they always took their two boys, who were about ten and fourteen when the whole thing started. Now that my husband has Alzheimer's, my two adult children and my grandsons (16 and 20) know exactly what's going on, how to deal with it and be compassionate and unafraid. Someone on this list mentioned telling the neighbors so they won't be spooked by any strangeness and also so they can help keep an eye on the dementia sufferer. If they see him wandering off, they might be able to intervene or let someone know. My husband doesn't seem to fully realize or accept what's happening, but everyone who knows him knows exactly what's happening and are able to lend support, even if it's just moral support, which is what we mostly need.

I am having a hard time adjusting my attitude. My husband is very smart, a writer and editor, very funny, and usually charming in a number of ways. He loves to tell stories and our guests/friends/family don't see any real difference in him except a lost word or name or in one case only, telling the same story twice on the same occasion. I'm having trouble relating to this new person and making connections with him. I find myself being angry that he can't remember the third time I answer a question within an hour, which is of course absurd, and the only way around it is humor, which actually works well but I can't always stop my immediate reaction that of course he knows... Then I feel I'm being cruel and I always apologize but that makes HIM feel bad. And if I'm calculating every response that seems like a very inauthentic way to relate to someone you love.
I also struggle with letting him continue to be useful in his old way of always doing the dishes and putting them away, putting away groceries, making the bed (that one is fine and easy to fix), taking out garbage, bringing in the mail, making coffee (in our expensive but extremely simple machine, and at least every week there's one disaster but so far not unfixable), etc. But that can mean vegetables going into the bread box where they're not seen for days, since I almost never eat bread. It can take hours for me to find something I use everyday. He loses his glasses at least ten times a day and gets frantic, yet never puts them in the appointed places and complains when he finds them that they don't let him see better than he does without them - he is legally blind and has been losing vision dramatically in the last year. There's nothing to be done about that. He's also quite deaf, and refuses to get hearing aids (I did convince him to be tested a few years ago when it was "mild" and optional, but that was then), so I am often shouting at him or over-articulating my endlessly repeated answers in a way that sounds sarcastic, which grieves me. We are both in our late 80s and fairly active. Having lost two of his senses and now much of his sense of taste is also very hard on him. He's very brave and usually doesn't complain or acknowledge any of it.
I have my own problems including low vision and I'm not very organized but have been trying to set up systems for medicines and other important things. I now hand him the crucial meds and we use Alexa constantly - she never tires of telling him the time, unlike me. He has Meta glasses which are terrific but will wear them only outdoors when he goes for walks. I have medical issues that keep me from coming along on these walks in our little town. I console myself that he has a very large brain and can afford to lose some of it and still be himself. At least for a while. He still makes me laugh several times a day, which is our usual way of dealing with the world. But this is not the same world.