Dealing with a Spouse with a “Mild Cognitive Impairment”

@IndianaScott
Good morning. My husband who is 80 yrs old was first told he had metabolic encephylopathy after his back fusion in late January. He is recovering well from that surgery but mentally is suffering from what they said was baseline dementia. He has had some improvement over time with the cognitive test, but very recently began having episodes where he does not know who I am. He remembers everything and everyone else, except me. He thinks I am an evil twin and it is extremely upsetting as we have a wonderful and loving marriage. I am writing because I do have no idea what I should be doing or feeling. I am having a very difficult time during these episodes. I am looking for some guidance on what questions I should be asking, how I should be responding to get me through these difficult periods, and if there is someone I can talk to to help me get through these times.

Additional relevant information is that my husband is being treated for prostate cancer which has metastacized and he takes Zytiga+prednisone as his treatment plan. The neurologist specifically calls attention to the prednisone as if that could be the issue but since it is prescribed by the oncologist at Mayo, she doesn't change it. Should I be reaching out to the oncologist for a change in medication. He has been on it since October 2024 and since that time is when we began to notice some mental confusion.

I'm sorry if I sound like I an rambling, but at the moment I am just beside myself. Someone told me maybe I should contact palliative care or a service that can give me a break once or twice a week. As I said, this is relatively new, and I am just trying to reach out to others who have more experience with such things. Thanks for listening.

Patricia

@IndianaScott
Good morning. My husband who is 80 yrs old was first told he had metabolic encephylopathy after his back fusion in late January. He is recovering well from that surgery but mentally is suffering from what they said was baseline dementia. He has had some improvement over time with the cognitive test, but very recently began having episodes where he does not know who I am. He remembers everything and everyone else, except me. He thinks I am an evil twin and it is extremely upsetting as we have a wonderful and loving marriage. I am writing because I do have no idea what I should be doing or feeling. I am having a very difficult time during these episodes. I am looking for some guidance on what questions I should be asking, how I should be responding to get me through these difficult periods, and if there is someone I can talk to to help me get through these times.

Additional relevant information is that my husband is being treated for prostate cancer which has metastacized and he takes Zytiga+prednisone as his treatment plan. The neurologist specifically calls attention to the prednisone as if that could be the issue but since it is prescribed by the oncologist at Mayo, she doesn't change it. Should I be reaching out to the oncologist for a change in medication. He has been on it since October 2024 and since that time is when we began to notice some mental confusion.

I'm sorry if I sound like I an rambling, but at the moment I am just beside myself. Someone told me maybe I should contact palliative care or a service that can give me a break once or twice a week. As I said, this is relatively new, and I am just trying to reach out to others who have more experience with such things. Thanks for listening.

Patricia

Well, it's nice to know I'm not alone!
We are both 90, my Bride and I, and together for over 70 years. She was diagnosed with dementia in 2023, and we have Long Term Care insurance, and we've had a care giver five days a week, so I can do things, and not worry. The driving is a big problem. She will not go back to the Geriatrician, as she says the Dr. is in league with the Life Plan Community, to get people to sign up, and she constantly berates me for taking her to the geriatrician, in the first place. Her PCP made the referral. I have told her she would have to go through an assessment, in order to drive, but she doesn't want to do that. The last time she started in on me, about her driving, I lost it, and shouted at her. I really felt bad, after that. So far she hasn't brought it up again. Her PCP has said he would rat her out to the State and have her license revoked, but I held him off, for now. She is the smartest person I've ever known, and it is crushing to see her fading away.

Tom

Hi, @islanders1952 Sorry for my delay in responding to your important post. I'll try to give some feedback based on what worked for both my wife and me.

I'm sorry you and your husband are having to endure this journey. It's a tough one for sure, and for both of you.

Early in my wife's journey, her oncologist told me a couple truisms that I constantly had to remind myself about. First was that change is a constant with brain illnesses. My wife's cognitive and/or emotional abilities frequently changed, and sometimes it was a daily event. Second, he said that with any 'broken brain', logic is neither present in the patient nor something that caregivers can expect to work most of the time. Third, he told me I must remember that my wife, due to her illness, was now a different person, just as I should be aware that I too was a changed person after that instant when I became a caregiver. Finally, he told me there are no 'right or wrong' feelings along this journey -- that we can only do our best and then try to bury any regrets that will inevitably rear their ugly heads.

I'd also say, from our experiences, I know when cancer metastasizes, it can cause impacts in the body in some strange and unexpected ways and areas.

As to who to talk with, I found using a therapist helped me tremendously. (I found a great MSW who was just about my age.) I also fully confided in my wife's Mayo doctors and used Connect to reach out for wonderful real-world experiences and help from fellow patients and caregivers. Connect truly became a lifeline for me! This said, I also kept an old pillow on our sofa, which I frequently used as a punching bag to take out many of my late-night frustrations.

Please feel free to ask anything, if you'd like.

Strength, Courage, & Peace

Well, it's nice to know I'm not alone!
We are both 90, my Bride and I, and together for over 70 years. She was diagnosed with dementia in 2023, and we have Long Term Care insurance, and we've had a care giver five days a week, so I can do things, and not worry. The driving is a big problem. She will not go back to the Geriatrician, as she says the Dr. is in league with the Life Plan Community, to get people to sign up, and she constantly berates me for taking her to the geriatrician, in the first place. Her PCP made the referral. I have told her she would have to go through an assessment, in order to drive, but she doesn't want to do that. The last time she started in on me, about her driving, I lost it, and shouted at her. I really felt bad, after that. So far she hasn't brought it up again. Her PCP has said he would rat her out to the State and have her license revoked, but I held him off, for now. She is the smartest person I've ever known, and it is crushing to see her fading away.

Tom

@IndianaScott
Thank you for taking the time to share your journey with me. Where would I look for a therapist to speak with?

@n82821 No you are not alone, in this journey. First up, congrats on 70 years. WOW, that's amazing. and double congrats on long term care insurance. that gives me some assurance. As for the driving, I wouldn't feel bad about shouting about driving - you did it out of love. The driving is a big thing, because I see it in my own husband, his reflexes/judgement just arent' the same, so I'm doing all the highway driving. Even with that, they could have an accident and cause a death, a follow on lawsuit, and then a cascade of issues over someone driving who's been diagnosed with dementia. Without insurance, it could wipe your financial out, even with a personal umbrella policy or whatever, just the stress associated with lawyers and the like at our age. My husband is smart too, but "not smart" when it comes to wanting to give up his independence with driving. Best, Karla