Husband (43) showing signs of Mild Cognitive Impairment (MCI): Anyone?

Posted by uncertainsoyoung @uncertainsoyoung, Tue, Apr 7 4:59am

He can’t remember names of people he knows, not people super close to us but lots of whats his name etc. this happens daily and he mixes up words like calling the colander a cauldron and aluminum foil / styrofoam. He had a MRI during an emergency visit to ER blood pressure 247/145…in December that resulted in a week in hospital doing tests. The ER doc told us he had a “rare brain disease” because of the plaque on his brain but the neurologist told us he didn’t , that he thought there was an injury in the womb and his brain has always looked that way. In the hospital I picked up a pamphlet on signs of Alzheimer’s and it scared me because I realized how many of these signs he had been exhibiting for the past 6months to a year who knows. Since we have been getting the BP better regulated he still has memory loss and mood swings and I have been concerned about his depth perception and driving for some time. Recently I noticed he dumps alot of salad dressing or condiments on his food like he doesn’t notice it is covered. I feel like he notices there are changes but does not want to face it at all. His family says he is not the same person but they think/hope it is just alchohol consumption which thankfully he just quit. With the pandemic we wont be able to see our PCP in person for sometime. Our 8 year old is worried I know. It is hard to talk to him about what I see and I need help and support navigating talking to him and our very bright daughter. Does anyone have a loved one this young with MCI?

@uncertainsoyoung, welcome to the Mayo Clinic Connect community. This must be concerning for you, your daughter and family. No doubt for your husband too, despite the outward appearances of denial.

I'd like to introduce you to other members like @debbraw @jodeej @birdhouseclosed @janeejane @joancampy who are also caring for a spouse with MCI. While I'm not certain of the age of diagnosis in their situations, they may be able to offer insight on how to talk to him about what you changes in his behavior that you and your daughter see. And how you might support your daughter, too, who is still so young.

Uncertainsoyoung, does your husband still work? Do you know if his work colleagues have noticed changes too?

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@uncertainsoyoung my partner was diagnosed at age 64 however the symptoms were there a couple years earlier. I’m curious has he had neuropsych testing? Did he see a neurologist at Mayo? How old is your husband? It took me 2 years to ask Jan to get tested. It is such a difficult disease.

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Hi @uncertainsoyoung – I'm so glad you came to Connect to share and find others who are dealing with the same issue. My husband was diagnosed with MCI and went onto more serious dementia/Alzheimer's. In my support group, we have several members whose partners have had early-onset Alzheimer's. It doesn't sound like your husband has had this diagnosis, but his symptoms sound a lot like what I would associate with that. Even though you can't meet personally with his PCP, I wonder if you could talk to him/her by phone and share some of your concerns? For me, it was a huge relief when I talked to my husband's PCP. She recommended an MCI and a neuropsychological test. After getting both, it set us on a path of getting help. Truthfully, I wouldn't worry about how to talk to your husband about what your are observing. He may or may not understand or appreciate your efforts. I think the critical thing is getting him the help he needs so that you have information to arm yourself with a game plan that will ultimately result in taking the very best care of him, your daughter and yourself. Would you be comfortable calling his PCP?

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@colleenyoung

@uncertainsoyoung, welcome to the Mayo Clinic Connect community. This must be concerning for you, your daughter and family. No doubt for your husband too, despite the outward appearances of denial.

I'd like to introduce you to other members like @debbraw @jodeej @birdhouseclosed @janeejane @joancampy who are also caring for a spouse with MCI. While I'm not certain of the age of diagnosis in their situations, they may be able to offer insight on how to talk to him about what you changes in his behavior that you and your daughter see. And how you might support your daughter, too, who is still so young.

Uncertainsoyoung, does your husband still work? Do you know if his work colleagues have noticed changes too?

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Yes he still works. I am not sure about his colleagues, I have honestly been afraid to ask the people I know well. I have wondered if others notice.

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@joancampy

@uncertainsoyoung my partner was diagnosed at age 64 however the symptoms were there a couple years earlier. I’m curious has he had neuropsych testing? Did he see a neurologist at Mayo? How old is your husband? It took me 2 years to ask Jan to get tested. It is such a difficult disease.

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My husband is only 43. We have never gone to the Mayo clinic I just found you all because I have felt so distressed and needing to talk with people who would understand. We had an initial diagnosis from an ER doc in our rural hometown that is not known for its medical care. They sent us to the city in a panic saying it was Amyloid Angiopathy. The neurologist in the renowned hospital said no that his brain must have always looked like that from an accident or perhaps Rubella in the womb because "he is too smart and he wouldn't be able to keep a wife if he had that." I think he had a stroke (they did not "detect" one) and possibly the prolonged high BP did some damage. Its confusing because alot of times he does seem ok but he has definatelly changed over time. Like his emotional capacity.

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@debbraw

Hi @uncertainsoyoung – I'm so glad you came to Connect to share and find others who are dealing with the same issue. My husband was diagnosed with MCI and went onto more serious dementia/Alzheimer's. In my support group, we have several members whose partners have had early-onset Alzheimer's. It doesn't sound like your husband has had this diagnosis, but his symptoms sound a lot like what I would associate with that. Even though you can't meet personally with his PCP, I wonder if you could talk to him/her by phone and share some of your concerns? For me, it was a huge relief when I talked to my husband's PCP. She recommended an MCI and a neuropsychological test. After getting both, it set us on a path of getting help. Truthfully, I wouldn't worry about how to talk to your husband about what your are observing. He may or may not understand or appreciate your efforts. I think the critical thing is getting him the help he needs so that you have information to arm yourself with a game plan that will ultimately result in taking the very best care of him, your daughter and yourself. Would you be comfortable calling his PCP?

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First I want to say thank you so much to everyone! Its weird because after I wrote the group, today he seems so good and I am questioning am I just freaking out but i know there have been some changes. I just hope he is one of the few who come out of MCI. He hasn't been diagnosed with anything except hypertensive heart disease. I did try to call our PCP. I left a message as she has been out on maternity leave but returns in May. She hasn't called back and I am wondering if she needs a release to talk to me?

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Be sure you keep a list/journal of things you are noticing that you can give to the dr. when you finally get an appointment or phone response. I did this with my husband so I didn't have to voice my concerns in front of him when we visited the Dr. He would have taken offense if I had given this information in front of him. He thought he was okay.
Take care of yourself. I know this is a difficult time.

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@uncertainsoyoung

First I want to say thank you so much to everyone! Its weird because after I wrote the group, today he seems so good and I am questioning am I just freaking out but i know there have been some changes. I just hope he is one of the few who come out of MCI. He hasn't been diagnosed with anything except hypertensive heart disease. I did try to call our PCP. I left a message as she has been out on maternity leave but returns in May. She hasn't called back and I am wondering if she needs a release to talk to me?

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Hi @uncertainsoyoung, We're here to listen and to offer a virtual shoulder any time. The conversation you want to have with your husband is a difficult one. As @joancampy said, it took her 2 years to have the conversation with her partner. I really like @rmftucker's idea of keeping a journal of the things you're noticing. There will be good days or good parts of days and there will be confusing times. Make note of it, for yourself and eventually for the doctor, and perhaps even with your husband.

At Mayo Clinic, we have a program called HABIT Healthy Action to Benefit Independence & Thinking® for people and their partners living with MCI. Both @debbraw and @joancampy have taken the program. I'm not trying to "sell" you on the program. I tell you this only because the 3 Directors of the HABIT program write a regular blog here on Connect. The blog posts are REALLY good. You might scroll through past blog posts to learn more about MCI and learn some helpful tips from self-care to dealing with tough stuff. Here's the link:

– Living with Mild Cognitive Impairment (MCI) blog https://connect.mayoclinic.org/page/living-with-mild-cognitive-impairment-mci/

How were things today? How are you?

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Things have declined as far as his ability to make good decisions, his driving and his social emotional skills. He sees me as the bad guy because I have to say the hard things. We had a terrible visit with an inattentive Neurologist who told him after 15 minutes that “he is fine and doesn’t need a follow up MRI” I have been waiting 7 months for this visit and he brushed us off with a wave of his hand. I described how he hit his moms car and drove off cause he was late for work and the Dr said he would order the MRI but don’t know if we can get it paid for. Not sure if Dr billed it as medically necessary. We have a nine year old living in the home with us. So stressed.

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@uncertainsoyoung

Things have declined as far as his ability to make good decisions, his driving and his social emotional skills. He sees me as the bad guy because I have to say the hard things. We had a terrible visit with an inattentive Neurologist who told him after 15 minutes that “he is fine and doesn’t need a follow up MRI” I have been waiting 7 months for this visit and he brushed us off with a wave of his hand. I described how he hit his moms car and drove off cause he was late for work and the Dr said he would order the MRI but don’t know if we can get it paid for. Not sure if Dr billed it as medically necessary. We have a nine year old living in the home with us. So stressed.

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Hi @uncertainsoyoung – I can just imagine how frustrating that visit with the neurologist must have been. Also, I think most of us caregivers spent a good portion of our time being "the bad guy" – so I can relate to that too. I'll share something I learned that has been very helpful in terms of doctor visits. Many times I don't want to elaborate on my husbands decline out loud in front of him. Now I summarize my observations and I write my questions out and send them to the doctor thru the portal in advance. That keeps me from having to ask the questions in front of my husband and it helps the doctor prepare. I also take an extra copy of the observations/questions to the visit so I can hand them to him if for any reason he doesn't have them on the screen. I have also written to the doctor thru the portal that I'd like to have some time alone with him before or after the visit. That's dicey because of privacy. One of our doctors allowed it – another didn't. Have you tried communicating through your portal in any way? Also, i'm interested in how you are handling your 9 year olds questions and concerns?

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Yes. Our regular doc and I communicate through my health , we finally got that set up this month. With the neurologist that was the most frustrating piece. I had sent him numerous messages and called before this visit to share concerns and he was not going to even address me or any of this, had I not gotten irate. This was just too much. Our daughter knows something is not right of course. “Why does dad always get his way? Is it sexism?” Lol she’s a smart one. “Why don’t you argue with him anymore?” I have told her yes something is going on with dad, he is not able to communicate as well and it’s not because he wants to be mean.. I’m not sure he can help it. His mom visited recently and confirmed the changes and our doctor referred to the damage that has been done in a message so I am ready to tell our daughter that he has some cognitive impairment and we are hoping he can heal from it but hopefully this will lend itself to a discussion of why there’s no use fighting with him and not to egg him on or mess with him. Ideas needed please???? Also the neurologist is the one we saw briefly in the hospital 7 months ago. My husband has plaques On the front of his brain. The ER doc that sent us to hospital in SF was in a state of alarm at what he saw. He thought it was Amyloid. The neurologist in SF at that time said, no his brain has always looked like this. 7 months later he says your fine without responding to me or acknowledging me. He also “mentioned” that usually damage from BP shows up on the back of the brain. Isn’t there clearly some factors and exploration missing here? I have been seeing symptoms for well over a year and his BP has been under control for 7 months , mostly. Except when he tried to cut meds and didn’t monitor didn’t tell me cause my dad just past and it spiked high. What do folks think about this neurologist, seemed like he did not care nor did not take the time to know my husbands case. He told us most people don’t take patients outside of the city… I guess we should be grateful for some half assed care and he actually caused harm because my husband is in denial and now he is like “this amazing smart neurologist says I’m fine.”

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@uncertainsoyoung – Does your husband's PCP notice a difference? It sounds as if you are doing everything you can – but you need some support. Getting a therapist for myself has been a godsend for me. Do you have a counselor or therapist?

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@debbraw

@uncertainsoyoung – Does your husband's PCP notice a difference? It sounds as if you are doing everything you can – but you need some support. Getting a therapist for myself has been a godsend for me. Do you have a counselor or therapist?

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Yes I have a counselor who is great. Amy recommendations for online support for kids?

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@uncertainsoyoung

Yes I have a counselor who is great. Amy recommendations for online support for kids?

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Here are some resources about talking to kids and teenagers about early-onset dementia or young onset dementia of a parent. Your daughter seems to be wise beyond her years, so I included some info for teems too. Please let me know if you find one or more of the resources particularly useful.

– Telling Children https://www.youngdementiauk.org/telling-
– Helping Children https://alzheimer.ca/en/Home/Living-with-dementia/Staying-connected/Helping-children
– Just for Kids https://alzheimer.ca/sites/default/files/files/national/focus-brochures/just%20for%20kids-en-final-md.pdf
– Helping Teens https://alzheimer.ca/en/Home/Living-with-dementia/Staying-connected/Helping-teens
– Young Carers Project https://youngcarersproject.wordpress.com/

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Thank you very much for these resources!

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