Early stage memory loss and MCI lack of medical attention

My 92 year old husband was diagnosed with MCI in 2019. It has progressed to moderate Alzheimer's. We declined neuropsych testing because his neurologist got a bit rattled when I asked if the testing was for research or to help the patient. Our primary physician referred him to a geriatrician and all the good stuff has come from that practice. He never took Aricept, but for several years has been using the daily transdermal patch rivastigmine and I, and others in my caregiver support group whose spouses use it, believe it has slowed down decline. He is content and most happy listening to classical music and talking to or being with our sons and their families ( and me!). Ask about the patch - can't hurt to ask . No side effects at all for my husband.

Good Morning. I just read this string of posts and felt I could have been the author of them all. At 86, I am the caregiver to my 94-year-old husband. By now others on these forums might recognize me by that descriptor. Somehow dementia distillates us down to those bare essentials, but we have been and continue to be so much more. It has turned out that the long battles with many, many health issues for us both were training sessions for dementia. I have always been a strong proponent of being proactive with health care, and I am sure there are a few doctors who think I am a bossy woman. But, I am not interested in a Miss Congeniality award, I want information that will help me do my job. Before doctor appointments, make sure you have done your part. Be informed by reading, using forums such as this, and researching for a layman's understanding of those mysterious medical terms that are being tossed at you. If you don't understand something, speak up, and write things down. Then, after doing all your homework, you will come up against the hardest fact of all. Dementia is a mystery medicine has yet to solve. -- As the caregiver you will be the one who best understands what your loved one has lost on becoming their new selves. To be effective, call on those same skills that allowed you to run a well-functioning household, keep a difficult job or be an entrepreneur. Think ahead and put into place systems that will make your lives easier and safer before they are needed. Trust me you will need the extra time saved by such efficiencies. We get Meals-on-Wheels. If our community did not provide such a wonderful service, our freezer would be stocked with frozen dinners. As our loved ones are called on daily to tackle a new reality, we cannot afford to hang onto old ways of doing things. Survival means invention and then reinvention. -- When I started posting on this forum, it was easy to think of myself as a lone warrior, and, although the altruistic side of myself wishes that was true, I take comfort from knowing there are such caring people who give everything they have to those they love. I have come to rely on your posts as another stratagem against this foe, who we wish did not exist. GloRo

I don’t think they really have anything available they CAN do. I have mild neurocognitive disorder- the new term for MCI i believe. I pursued the neuropsych testing because I believe it’s one of the few ways to understand where we likely are on the disease path. It may not tell you anything you haven't observed but it might indicate where his memory and learning functions are compared to others. Just a thought.

I also see minor changes in my husband. I think I have been in denial but I have noticed lately things get put in the wrong places, he repeats the same thing and asks me the same questions several times. I spend a lot of time looking for things. I find life is easier if I just agree my girlfriend said just say “okay” which helps.
I cry thinking I am losing the man I love so much. Although he is still functioning well, he just gets a little angry at me which he has never done. He fractured his back in December and had to wear a brace for 6 months which to give him credit he did wear because as he said I want to get better. That was hard because the doctor told me “BLT” no bending, lifting or twisting 😁 which didn’t help as I was watching him every minute of the day, he seems to love picking things up off he floor for some reason so I was constantly checking the floor everyday. This has really affected his posture because he looks down all the time so he doesn’t trip. By the way he is 85 and I am 76. I can go out for walks and to lunch on the rare occasion with my girlfriends. We have no family other than me. We had a wellness test this year but all the doctor asked him how he was and he said okay. When I went to my oncologist she asked how I was and I mentioned my husband had some memory loss she said to enroll him in brain boosters when I mentioned this to my husband he said he didn’t need it. Doctor had an oncologist social worker call me she asked what I needed I said I didn’t know exactly she did she said she normally gives info on referrals? I’m still stumped at the end of the conversation she said she learned a lot from me. Just crazy. My husband still showers and dresses himself although the other day I noticed he put his dirty tee shirt back in his clean draw. I don’t know what to expect. This started a few years ago but very slowly.
What does one do? do we go to our drs? How do they approach this he knows he is forgetting things is that a good sign that he does? I’m so tired of doing everything although he does the dishes! Takes the garbage out,fills the Keurig,napkins, paper towels and lots of other things. I’m trying to keep him on a schedule. I now have a handyman etc that was hard for him since he was a carpenter and did everything. Sorry to go on so much.
Any advice would be appreciated as I move forward. In many ways I feel I am lucky as he appears to be okay in so many ways.

Thank you. Your post was very helpful. I also posted my side of our story. I like the idea as one thing one could do meals on wheels, although right now we get take out 3 times a week. The only problem is take out food is not necessarily healthy? We try to pick up salads but not always. I don’t want to die of a heart attack from to much salt, fat etc. any other ideas to make life easier would be appreciated.

Happy Sunday! We have been invited to a BBQ at my husband's son's house, and I don't want to go because I am exhausted, but we will. I think somewhere in the caregiver manual is the suggestion to stay engaged. (That is me being sarcastic.) In her post, Jeanadair123 asked for more specific suggestions. Until I saw for myself that my husband no longer understood the working end of an electric drill, I would have said impossible. But, it was definitely a signal not to involve him in projects. To avoid circular conversations and the possibility of injuries, I have gone directly to the handyman when tools are involved. I think part of the dilemma when dealing with someone who is diminished cognitively is that we are reticent to take charge. Firstly, who wants all that responsibility, and secondly, it goes against ingrained rules. But, as caregivers we are the ones who must step up to the plate. It is hard to be specific since the relationships established before dementia are all different and how someone will react is not predictable and ever-changing. The one true thing is if you think something is a problem, it is a problem, and you must figure out a solution. Along with dementia, my husband has a colostomy. If you think you have few people willing to talk about dementia, I can assure you that no one wants to talk about a colostomy. I am grateful my dear boy still rinses out his colostomy bag between a change which is my job. However, as his dementia worsens and his eyesight diminishes, he is not aware that he creates a great deal of work for me. What I mean by thinking a head, specifically for this situation unique for us, is that there are Lysol wipes in every bathroom. And, even though my back no longer allows me to bend and I cannot use a mop, I make sure there is a clean hand towel-size rag ready in those bathrooms. I dampen the rag, toss it on the floor, step on it, and drag it over the mishaps several times a day. It keeps our home from becoming a petri dish culturing new types of diseases between weekly cleanings from the young woman who does what I can no longer do. That young woman's efforts are also part of the plan to remain independent. While dealing with health issues for two, I could not take care of my husband without the cleaner, the lawn and snow removal people, the handymen, the window washers, etc, etc, etc. Still, this afternoon before that BBQ, using my walker to get to the lawn, I am going to do some weeding. I found a nifty tool on Amazon that does not require you to bend and has an ejector feature. It will not be pretty. My back will hurt. But even if it is only half an hour, there will be fewer weeds. GloRo

Hello,
I think that sometimes we are not specific enough when we tell the Dr. What is happening. I know I wasn't. One of the biggest indicators that it could be a form of dementia and not just memory loss, is the loss of functionality of things. For my sister these were some examples: she spent a half hour in distress because she wanted to know what day it was, even though there was an 8 x 10 calender right next to her. She forgot what the calendar was for. She didn't know what time it was even though she was wearing a watch . Her hands were freezing when we were outside in the winter because she forgot that the mittens in her pocket would keep her hands warm. She burnt her hand on a pot handle because she forgot that the hot MIT right in front of her would protect her hand when she picked up her pot. She would make notes to remind her of things, but forget where she put them, or that they meant something. Often , my sister would seem perfectly fine for an hour or so, then she would turn into a six year old. So, if she was good with answering the drs screening questions, I would remind him of the fluctions in her daily clarity. Keep a log. I took notes on my phone every day, of the "off" statements she would say so I could give specific examples, then read them to the Dr . at her appointment. "Where am I", "Who are you", " Someone came in and stole all my underware". " "The doctors are doing things to make me crazy on purpose." Etc. Once I started giving the doctor these examples, along with no short term memory, and a Rollercoaster of emotions and clarity, they looked at her very differently and she got the dementia diagnosis, prescribed memantine to help slow the progression and she was placed in an assisted living facility. She has since been given an anti anxiety to help with paranoia associated with her memory loss.

I actually continue to keep notes on comments and behavior, so I can accurately describe to the Dr what is happening, to show her progression as she continues to decline.

I don't know if this helps you at all, but once I got more specific, it made it easier for the Dr. to see the big picture of her overall condition and not just how she was in the 20 minutes of her appointment .
ML

Hi All, I just read M1318's post. This is exactly what I mean by thinking ahead. Whether we like it or not, we are now micro-managers of another person's life.
On a recent visit with my daughter and great-granddaughter, who live in another state, they were amused and amazed that my husband still makes coffee in the morning. But it is only for two. He was unable to process the next function during the entire visit. Also, without leaving my chair, and my back to him, from the noises coming from the kitchen, I was able to give him directions to the proper drawer and cupboard. With a lot of trial and error, I now understand the dilemma at hand and can guide him. It takes patience as well as an organization level I never thought possible. It also keeps him feeling that he is contributing. In our household, there was never a Honey-Do-List where projects languished unattended. Even if I can't promise the same rate of clearance, I try my best. Our best. That is all we can ask of ourselves.

Meals on Wheels delivers 7 days a week where I live and are prepared under supervision of a
licensed dietitian and special diets are available.

You could check where you live what Meals on Wheels availability might be.

Oh wow 😮. You have an amazing and humorous attitude in the midst of your “situation “. We are moving in the same direction as you and I want and desperately need help but my husband goes ballistic at the suggestion of hiring help with the issues you cited. And he’s paranoid I’ve been hiring contractors behind his back. I have tried to take control on these issues and I’m exhausted from trying. Am letting things fall apart a bit while I gain some strength 🙃