Husband With Slow Cognitive Decline: So sad & confused

I don't have a lot of time at the moment, but I do want to encourage you to make an appointment with a neurologist that understands MCI - and the many medical issues that can cause this devastating condition. My sweet hubby was diagnosed with Alzheimers, then severe anxiety, then depression, then PTSD, then MCI and the list of endless diagnoses goes on. However, a psychologist and a Nurse Practitioner, in separate appointments in different states recommended that we go to Mayo Clinic. That was the best advice we could have gotten. Mayo was VERY THOROUGH and sadly, decided that he has Lewy Body Dementia. However, they have helped both of us cope with this devastating, on-going destruction of a wonderful man with counseling, advice, compassion and a medication (Excelon patch) that has given us more quality time. They have encouraged us to put aside mundane tasks, hire help to do yard and housework, etc., to provide more quality time. Yes, this is depressing, it is sad, it is unfair, but the reality is - it is here and there are loving ways to deal with this to make life easier and more productive for all. It seems like I might have it all together, but believe me, I am a mess when I am alone and try to deal with these thoughts that constantly bombard my brain, but love carries a lot of strength and tears are a welcome relief for the heart, mind, and body. I want to encourage you to search for answers and solutions to make life a bit easier in this very hard journey.
Know that you are being prayed for as you go through each day....
God's blessings and strength.
Jan

My husband was referred for neuropsych testing in 2014, which resulted in a diagnosis of MCI. He slowly declined over the years, then had a significant precipitous decline, was re-tested and having the tests from 8 years ago as a baseline was really helpful to his PCP and neurologist, he is now diagnosed with vascular dementia with Alzheimer’s features.
Last March, I could no longer manage him at home as he was completely uncooperative with me around his diabetes care- crashed and was in the hospital for 2 weeks before they got him stabilized. He is in an assistive living now and accepts the staff care, but he doesn’t like to shower or change clothes, sleeps in his clothes, including shoes.At home, he would stay up very late on the computer, he still sleeps late and sleeps a lot. His short term memory is very poor- at home he would walk away from turned-on faucets, leave the fridge door open. I taped up reminder signs around the house but I don’t think he really understood their meaning. The watershed moment was when he left the house at night, a neighbor brought him home. It’s hard to accept that point when your spouse is no longer doing well at home- I felt like the frog in the boiling water, everyone has a wonderful story of they or someone they know caring for an elder in”their own home because I would never put them in a place”, well- he is at his most healthiest now than he’s been in a long time with the structure and social opportunities at the assistive living.
One suggestion- I bought a great clock on Amazon- has the date, time, and “area” of the day (“morning, afternoon, evening”), he refers to it often, seems to keep him oriented.
Best of luck to you, it’s a surprising diagnosis and a long road ahead.

Jean like you my husband was diagnosis with MCI about 11 years ago, not due to illness but maybe age and family history. The first 8- 10 years were very slow progress but now it's almost daily downward changes.
Your last few lines of your post pretty much sums up how I feel. Trouble sleeping, so sad and "I'M DISAPPEARING"!
Mayo Clinic and our doctors are wonderful but at the end of the day it's just the two of us trying to deal with this awful disease.

Dear Jean7ma,
Your story sounds so much like mine. And as I read the other responses to you, it’s clear that many of us can tell a similar story. I too wanted a clear diagnosis, much more than my partner did. Centre has a good point about having a baseline. It helps to mark changes later. My caution is to realize that neuropsych doctors can make mistakes, or dementia can change suddenly. Our first one told us that Ron absolutely did not have Alzheimer’s because of certain test results & comments Ron made in conversations. Well. six months later Ron had a special MRI & a spinal test & a memory researcher at our state’s university confirmed the diagnosis of Alzheimer Disease.Two years later, Ron has declined further & is refusing any more testing or therapy. It’s too discouraging for him. And I understand better so I won’t press for more testing. Dementia seems to be an uneven road with lots of curves & turns & stop signs. I wish you well in making decisions at each curve or sign. I hope you find at least one good doctor who can help you navigate your path.

Hi Jan,

Thank you for your response. I'm sorry for your husband's LBD diagnosis, that's a tough one. My friend's mother had LBD and I remember how difficult it was for her and her family. ...I think I need to work on my responses to my husband's repetitive questions. I'm patient enough but it wears thin after the 5th or 10th time he asks me the same thing. I do know it's going to be a long journey ahead and we are already almost 11 years in. Thank you again.
Jean

Hi - I appreciate your response. I'm sorry for all you've gone through, it sounds difficult to say the least. I usually call all of it "soul crushing" because that's what it feels like to me. My husband's cognitive decline is moving slowly but there's no doubt it's happening. This afternoon we met with our financial advisor for a usual periodic meeting and when my husband went to use the restroom, our advisor said, "Wow, he'd doing great - I'd never know he has a problem!" Right now he's in the other room having a conversation with my daughter about her car. It's a perfectly coherent conversation but he's forgotten that he already discussed this with her. This is what I mean by our normal/not normal life. I think you are right, I should schedule the neuropsych test. I guess I'm afraid of what they might see. I also think if it's a difficult diagnosis, it will change him drastically. And here's a HUGE fear of mine; What if they say he shouldn't be driving anymore? They can do that, can't they? Right now he drives fine and if that is taken away, I'll never forgive myself. The minute I start to question his driving I would immediately insist he no longer do it but I don't want that taken away from him, from us, until it makes sense to do so. Safety-wise, he probably drives better than I do. Thank you again, Jean

Hi Trisha, Thank you for responding. Your situation sounds so much like ours. I'm sorry you are feeling as I do, the disappearing thing. It's hard. I'm fortunate in that we have four daughters who are loving and supportive. And two baby grandsons and a granddaughter on the way. In so many ways life is good, but then there's always the elephant in the room. I'm terribly envious of my sisters and friends who don't have our problems, and very sad that I don't have that kind of independence. Although I'm probably missing a window right now when we likely could do some modest traveling. My husband is certainly game to do this! I guess I'm just fearful of something new happening when we are someplace other than home. I'm definitely letting fear win out here. ...You and others have mentioned how helpful Mayo Clinic has been. Do you know if they do telehealth? I don't believe there's a Mayo Clinic near me. Best of luck to you and thank you again, Jean

Hi Bonnie - I agree that an earlier diagnosis could well have changed by now. I keep thinking that things can be improved with enough exercise and a brain-centered diet. I know it's not a cure but I hope that we could stave things off for as long as possible. Have you or anyone else here had any good results with exercise? Again, we are 11 years in and I don't feel he'd be diagnosed with dementia at this point. But I'm not being naive - I knows things could change quickly. Then I lay awake at night worrying about the financial part of this and what will happen to me financially if it got to the point that he couldn't stay at home. I just want to wake up from this whole nightmare and have the retirement we planned. ...I apologize, I'm feeling sorry for myself. Thank you for responding, I appreciate your input. -Jean

About the driving-
You’ll know when the time comes, my husband began to be more distractible and drift over into other lanes. He became very annoyed with other drivers, which would also distract him. He began to limit himself to 3 nearby destinations (his PCP office, a hardware, and a grocery). A friend he was driving called me from the car to tell me he wasn’t driving safely, two neighbors called to say they had seen him driving unsafely and wanted me to know.
That kind of did it for me- I didn’t want him to kill or injure himself or somebody else.

Jean,
Ron’s doctor tells him the best thing he can do for himself is to exercise 30 minutes per day. No need to apologize to me, for sure. You & I are going through our own nightmares. And we can’t turn the into dreams where everything ends up fine. That’s incredibly hard to accept, I think.