What to do when doctors disagree on next steps for an MCI patient

My first post too. A year ago my husband ,was diagnosed with MCI by our family doctor . I asked for a referral to a Memory Clinic because I knew there are long wait times. We are in Canada too. After a recent geriatric assessment the diagnosis is now "Early mixed dementia " Luckily he is not upset by this and is very cooperative with all suggestions. He still drives and is quite independent.
However, I feel it’s better to get in the queue for services and not to wait until his condition deteriorates and we become desperate for support or medical advice.
( As for emotional problems, your counsellor is probably the best route )
Good luck.

Welcome @marketlink and @4goakley. I'm tagging a few other members like @tsc @s18 @maryvc @randywhite @meitsjustme @civvy @scupper @judimahoney and @ihanrath who live with someone living with mild cognitive impairment (MCI).

Your questions reminded me of this earlier discussion that is somewhat related:
- Why diagnose obvious MCI?
https://connect.mayoclinic.org/discussion/why-diagnose-obvious-mci/
@marketlink, I certainly empathize with your situation. Knowing that wait times for a psychiatrist can be long, might it be an option to put in a referral in a few months times to be seen in a year or so? It sounds like your husband has a counsellor, which is a great asset. Since you have permission from both your husband and his counsellor to reach out to her, I might suggest starting there. She will navigate carefully between support you and respecting your husband's privacy and autonomy.

Hi @marketlink. I empathize, too. Deciding to step out of one's traditional role in the marriage and into more of a caregiver role is rough. You see the need to do it but want to be careful not to overstep. Add to that your husband's mood swings and his family doctor's upsetting advice, and it's a tough situation at the moment. It won't always be this way.
It's important to continue seeing your loved one as a person deserving of respect, admiration, and love. I thought my marriage was in trouble, too. We had a wonderful marriage for decades, so it was hard to accept that things were going off-kilter. My husband's personality changes were hard to accept. I remind myself to be thankful it's not worse. People whose loved ones have a Lewey Body diagnosis are the real sufferers.
Here's one thing that really helps. Dementia patients are emotional "mirrors". They reflect and amplify the emotions of the people they are around. They can pick up the slightest cues from us, their life partners, and send them back twice as hard. For example, if I'm getting a bit frustrated, my husband gets angry quickly even if I didn't realize I expressed my frustration in the least. But, it works the other way, too. If I smile lovingly, I get the best husband ever.
As I said at the start, it's hard to take the leap from partner to caregiver. It's especially hard in the beginning when the loved one is still so independent. Try to think of it as a care partner instead of a caregiver. That's what Teepa Snow calls it. As things progress you might find helpful ideas in Teepa Snows videos and books.
Know you're not alone. Reach out to that counselor and ask for direction. I'm glad you found this site. It's a life saver.

Thank you so much for this insightful message. I love the information about emotional mirroring and can see how it’s true. I had a wonderful chat with my husbands Counsellor. She has set me up with her partner who also specializes in geriatric dementia. That way I can get support, share information and learn more about the disease and best coping skills. I’m learning that taking deep breath’s, daily baths and reaching deep for patience is helping. We are doing a house refresh right now. My hubby is handy and wants to do a lot of the projects himself, even though is causing a lot of stress, cursing and returns at the hardware store. I did have a big win and he agreed to hire a painter ( who is also a handyman if I need him). I’m taking it day by day and telling myself it can all be fixed if necessary. In saying that, some days are a lot harder than others.

I so appreciate this site. Hearing stories from others going through similar experiences make me realize I’m not losing my sanity and that so many symptoms are MCI. Thank you.

Hi Colleen,

Thanks so much for your response. The information in the thread above did help. I've had the chance to speak to my hubby's counsellor and she's agreed to guide us on this. She's also connected me with her partner who also specializes in geriatrics & dementia. I'll be able to get the support I need and communicate any critical information through her partner. I think it's a good solution for now.
It is hard to know when to take control and when to let go. The counsellor told me that it's important to keep life simple right now since stress, worry and lack of sleep can make the MCI symptoms worse. Unfortunately we had just started a house refresh that is very stressful but I'm trying to navigate through it one day at a time and realize that it will all be over in a month or so.
I appreciate the support and empathy. It's nice to know I'm not alone when all the thoughts come crashing in during the middle of the night.

Hi @4goakley. Thanks for posting and sharing your experience as well. My hubby still drives, volunteers and is really independent as well so there are some days when I feel like I am making this all up. Then we have a bad day with lots of emotions and I know that it's more than just a mood swing. His counsellor has her PHD is neuro psychology and specializes in dementia so I'm going to let her guide us and hope the family doctor doesn't do too much damage. I understand the idea that a label can change your life but I also think it's important to get information so we both can plan for the future. Good luck to you as well!

I knew something was amiss with my husband in 2017 when I retired. It was difficult to face our new reality. He was diagnosed with Alzheimer's in 2019, following memory testing, after an MRI of his brain and almost a full day of neuropsychological testing. His diagnosis was evidence based. He was driving, not alone, but with me in the car, until he couldn't draw 10 past 11 on a clock, and his neurologist told me he should no longer drive. My husband took the news with grace. I think he was relieved. I've taken over management of our home, healthcare, finances. It was unimaginable to me eight years ago, but here we are.

Our geratrician told me that the behavior of the caregiver impacts the behavior of the person with dementia. So the mantra I repeat to myself anytime something is amiss is "He's not doing this to vex me, it's his brain." My husband is appreciative and generally content. He loves our home, still listens to me and does not wander.

The diagnosis was difficult to face, but as his symptoms have progressed, the "label" is useful. Alzheimer's Disease is a disability under the Americans with Disabilities Act and also the Canadian Human Right Codes. (I worked in Ontario as a Human Rights Coordinator, prior to moving to the US, then as a County ADA Coordiantor). Now, prior to a medical or other appointment, I request accommodations for my husband, based on his disability. Also, I've read that there are drugs now which may be helpfull in slowing the progression of dementia in early stages. They may not be available without the "label."

I wish the best to everyone who's posted here. It's a tough road we travel, but with resilience, use of available resources, and sharing information, we can navigate this difficult and heartbreaking journey.

Meitsjustme- Boy, this really speaks to me! You make such good sense! We are at the point where I’m not sure of my role…my husband is diagnosed with MCI, but I feel it has progressed a bit since the early stages. MCI must be a fairly big umbrella term, given what we’re experiencing and have experienced the past year or two. I have to follow up on some things that slip through the cracks, yet not sure how much to do without overstepping. My husband watched his sister decline and then die from Alzheimer’s so he is aware. I love your advice; have read things from you before. I have no advice or help to offer here…but please know I read most posts and am learning from all of you.

@2me Thanks for posting those uplifting words. I hope my experiences can help others and it's good to know somebody's getting something out of my posts. This is a long lonely road we're on, but there are a lot of us travelling together. That helps sometimes. Good luck with your own journey.
When I began menopause way back when, and noticed hair sprouting on my chin, and my lips retreating to heaven only knows where, I used to say that at least every day was an adventure. I never knew what tomorrow would bring. Talking about the changes with humor made them easier to accept. But, boy, what I hadn't known about adventures would fill a book. But, I still think humor is a good tool.

Thank you. This group has helped me immensely.