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Has your MCI progressed?
SBL83
Posted: Sunday, May 29, 2016 9:41 AM
Joined: 5/15/2016
Posts: 173


Hello all,
I apologize to those who have already read my similar posts about this.  A brief background....My husband is 63, and was diagnosed with MCI in January, and has had to go out on long term disability/ early retirement at the determination of his neuropsychologist (who did the hours of testing), and his neurologist and PCP.  He is also a type 2 diabetic.  He has had a sleep study, but will have a second one soon.  Posdible sleep apnea, but not found at first sleep study.  

 I am just curious if there are those of you who were first diagnosed with MCI and then told it was EOAD or something similar.  The neuropsychologist wrote that he is at great risk of developing Alz or another dementia.

It is hard to know what will happen, especially when much of the time, things seem "normal". Not everyone notices.  Those close to him, and those who he had worked with see/saw the short term memory issues and the executive function problems etc.  Learning new things, especially technology is next to impossible.  He sleeps soooo much, and I have a hard time knowing if that is related to the MCI.

 We were told the standard, "Hope for the best, prepare for the worst, get the POA and all affairs in order etc.". We are working on all of that.  Sometimes I wonder if they could be wrong, yet I see daily examples that the tests and doctors are not wrong.  I just wonder how many people get worse, and how many people get better etc.  I've read the statistics, but they vary, depending on where you read them.  

If anyone has any experience with whether the excessive sleep was part of your MCI or information to share about what happened in the years after the MCI diagnosis, I would appreciate it.

Thank you and blessings and good luck to you all.

SBL83


jfkoc
Posted: Sunday, May 29, 2016 10:46 AM
Joined: 12/4/2011
Posts: 21242


My husband's first diagnosis was MCI. It progressed very slowly and after a period of years the diagnosis changed to Parkinson's...then LBD. Yes, I can look back and one of my first concerns was the amount of time he slept.
SBL83
Posted: Sunday, May 29, 2016 11:04 AM
Joined: 5/15/2016
Posts: 173


Thank you so much for your helpful reply.  Sometimes I feel he has had MCI for several years already, as some of these symptoms have been around a while.  How is your husband doing now that he has progressed?
jfkoc
Posted: Sunday, May 29, 2016 12:17 PM
Joined: 12/4/2011
Posts: 21242


Sadly he died last October. His was a very gentle journey. Most of what could happen did not!
SBL83
Posted: Sunday, May 29, 2016 12:29 PM
Joined: 5/15/2016
Posts: 173


I am so sorry to hear that he died.  I am glad he did not have some of those terrible things happen.  I'm sure you were wonderful to him, and I'm sure you miss him.

Blessings to you!

SBL83


jfkoc
Posted: Sunday, May 29, 2016 12:43 PM
Joined: 12/4/2011
Posts: 21242


I tired...lol. I have a lot of info...glad to share
TayB4
Posted: Sunday, May 29, 2016 6:21 PM
Joined: 8/8/2014
Posts: 886


My husband received a diagnosis of MCI 1 1/2 years ago. He is now 49 and has been unable to work since 9/13, and collects SSDI. I have seen his symptoms progress (worsening memory, can't keep up with the day's plans, moody), and he will receive a repeat neuropsych exam in November.
SBL83
Posted: Sunday, May 29, 2016 6:50 PM
Joined: 5/15/2016
Posts: 173


I bet you are tired jfkoc.   Thank you for sharing.  I'm sure I'll ask more questions.
SBL83
Posted: Sunday, May 29, 2016 7:00 PM
Joined: 5/15/2016
Posts: 173


TayB4,
I see the moodiness in my husband too.  I'm sure it is frustrating to have a hard time remembering and to know this quite possibly will be a long, difficult disease.  That has to be depressing to them.  Does your husband sleep a lot?  Mine sleeps so much lately.
Good luck with the next neuropschy testing.

jfkoc
Posted: Sunday, May 29, 2016 8:34 PM
Joined: 12/4/2011
Posts: 21242


I am tired but meant to say tried....
TayB4
Posted: Monday, May 30, 2016 7:20 AM
Joined: 8/8/2014
Posts: 886


My husband has always been someone who falls asleep easily. He has sleep apnea (has for the whole time I have known him) and uses a CPAP machine. Now he can fall asleep just by sitting down. He usually goes to bed around 8:30pm and gets up around 7:00 am. He sometimes naps during the day.
eaglemom
Posted: Monday, May 30, 2016 9:43 AM
Joined: 3/7/2012
Posts: 2774


I always think its best to remember each person is unique. And consequently their reaction / behavior will be their 'normal.' Then you have to factor in certain circumstances - if its a gray rainy overcast day more napping certainly is reasonable. Some people require more sleep than others, that's just a fact. Toss in having a good day vs having a rough day, these all are part of the whole picture.

Some medications make you sleepy, you may look into that. Or is he bored? Might there be some depression going on? Your the one whom best knows him and his routine. Low blood sugar can make you sleepy also.

As for MCI progressed, that is a hard one to know. Some days you think it has not, but the next day, your certain it has progressed. Enjoy one another, have some fun and when he needs to rest you take the opportunity to rest also.

eagle


a_step@a_time
Posted: Monday, May 30, 2016 11:13 PM
Joined: 11/21/2015
Posts: 237


Jfkoc, sorry for your loss.  thanks for coming back to the boards.

SBL83, eaglemom is correct - we are all unique but with some similarities.  I am not diagnosed.  I am frequently tired and my days differ.  I find I am highly sensitive to meds, especially sinus meds and even xanax.  I am moody and estrogen seems to help as antidepressent to some degree.  I guess journaling food and moods can help.  I changed to decaf coffee.  Stressful situations make me more cranky.  Glad you are searching for help. And sometimes coloring books help me focus and calm down, but the busy adult ones can sometimes be over stimuli. I have adult and child color books. 


SBL83
Posted: Tuesday, May 31, 2016 7:10 AM
Joined: 5/15/2016
Posts: 173


Thank you everyone for your replies,

I agree everyone is different, and from day to day, I think symptoms and habits etc can change with this.  Yes, like everyone, he has some good days, and some bad days.  Some days he has more energy and "get up and go", and other days, he literally can not get up and go and sleeps the majority of the day.  The neuropsychologist tested for depression, simply because that is part of that 6 hours of testing, and she said there was no clinical depression.   Obviously since getting the diagnosis from the testing etc of "MCI with very great risk of progression to ALZ etc" from the neuropsychologist he may have more of a reason to be depressed, but he will tell you he isn't depressed. He has always been an upbeat person , who makes the best of things.  As for the meds possibly making him tired, I don't think it would account for this amount of fatigue.  He has been on most of these drugs for his diabetes etc etc for years, and never has he been this fatigued.  Never.  The blood pressure drugs were introduced about 8 months ago, and they have changed those a couple of times.  He now takes Bystolic and benicar hct.  Those can cause some fatigue, but then again, not to this degree, and he has had a long time to adjust.  I know the fatigue could come from many sources, and I do make the most of getting things done when he is sleeping, but you reach a point where you can't relax when someone sleeps sometimes 18 hours a day, because you know there could be something very wrong.  Since he is a diabetic, I can't let him sleep too long and miss meds and eating.  

I wish I knew if all of this fatigue and sometimes apathy and lack of interest in his projects and things he used to enjoy etc was a symptom of the MCI or what it may be progressing to, or if he just isn't "trying". On the one hand, I think I should push him more because I think and know he would and does enjoy things once he does them, and on the other hand, I think it can be mean to push him if it truly is a struggle.  I'm not the one with MCI etc., so as hard as I try, there is no way I truly know what he is going through.  I just know that he has had so many medical tests and blood work etc., and there so far is not any diagnosis that would explain the amount of sleeping and extreme fatigue etc, so I have to think the MCI and all it entails is responsible.  I wish we didn't have to wait several more months to get into the memory center for the PET scan and/ or lumbar tap.  I think he (we) need to know more about what he is dealing with.  Thank you all for listening and for your comments and advice.  Best of luck to everyone and all that you are dealing with yourself or with your LO.

SBL83


llee08032
Posted: Tuesday, May 31, 2016 8:19 AM
Joined: 5/20/2014
Posts: 4408


I wish I knew if all of this fatigue and sometimes apathy and lack of interest in his projects and things he used to enjoy etc was a symptom of the MCI or what it may be progressing to, or if he just isn't "trying". On the one hand, I think I should push him more because I think and know he would and does enjoy things once he does them, and on the other hand, I think it can be mean to push him if it truly is a struggle.  I'm not the one with MCI etc., so as hard as I try, there is no way I truly know what he is going through.


Inertia and apathy are a big part of my struggle. I think I try hard enough so I just give in sometimes to the nothingness and allow myself to rest or afford myself the luxury of doing nothing. I do less and less in my home and depend more on my son during the weekends to help out around the house. I don't know when it happened but I stopped folding my laundry (small articles of clothing) and leave them in the basket all week. I stopped doing other things also. I take long naps on the weekends. I trimmed a hedge and planted some flowers and cooked on the grill this weekend and it was really a big deal! 


SBL83
Posted: Tuesday, May 31, 2016 8:30 AM
Joined: 5/15/2016
Posts: 173


Thank you for your reply.  That sounds a lot like my husband.  I do think sometimes he "just gives into the nothingness" as you say. As frustrating as it can be for me to watch that, I also have no idea exactly what he is going through, and feel he should be allowed to do that some.    He has stopped doing many of the routine things he used to do, and I do them for him.  I'm glad you had a productive, and hopefully fun weekend.  I'm sure it felt good to do that.  My husband did some planting too (with my help and encouragement), and I can tell he felt good about it, but it was tiring.  Good luck, and thank you for the response.
BillBRNC
Posted: Tuesday, May 31, 2016 9:48 AM
Joined: 12/2/2015
Posts: 1018


SBL, I mean this in the nicest way possible, but you are whistling in the wind if you think you can compel, push, or whatever to get your husband to "try harder" to do the things you think he should be able to do. Not only will you fail, but you very likely will incite an explosive response at some point in time. Alzheimer's is a terrible thing, but the person who has it has very little ability to control anything at all, much less plan and execute anything, or follow someone's instructions. The only person who can adapt inside the Alzheimer household is the caregiver spouse. Regardless of what the Pet Scan shows, the fact is from what you describe your husband has progressive neurodegenerative disease of some type. It don't matter what type, because they all stink. A specific diagnosis might help one or both of your mental or emotionally, but it won't make any real difference on the ground in your life. I truly think you need to get that solidly planted in your mind if you want to have a shot a less terrible journey. The fact your husband seems normal some of the time don't mean nothing. Just my two cents. You and my wife have much in common, and you both could benefit from always keeping in mind what disease you are dealing with. It is a disease. His brain is dying, very slowly, and every day is different day, as are all of the minutes in between. He is and isn't the same person. Good luck, and I really mean that.
Iris L.
Posted: Tuesday, May 31, 2016 11:05 AM
Joined: 12/15/2011
Posts: 18508


It would be beneficial if the patient with MCI/early AD join this board and participate in communication with others like himself.  This board is where we learn what to do for ourselves.  


The PWD needs to know that life is not over just because he has a diagnosis.  He can have many fulfilling years.    We follow Best Practices to help ourselves and to prolong the early stages.   


I have been successful after seven years of Best Practices.  What helps me is not giving in to the depressing and pessimistic future that other people have laid out for me.


Iris L.


BillBRNC
Posted: Tuesday, May 31, 2016 11:46 AM
Joined: 12/2/2015
Posts: 1018


Iris keeps us focused on the important things. How to improve out lives, even though we have this health problem. I think having a safe, comfortable, pleasant and peaceful home environment is the signal most important thing for me. Home is my refuge. The single most important thing to achieving this type of home environment is the relationship between the spouse and PWD, in this case me and my wife. Being on the same page helps a great deal. I've been married for I think 36 years, plus lived in sin for a few years before that, so my wife and I have been together for a long time. Without her help, I would be nowhere good that's for sure.
SBL83
Posted: Tuesday, May 31, 2016 5:19 PM
Joined: 5/15/2016
Posts: 173


Thank you for your responses.  I really do put very few demands on him right now, but I just don't want to jump on the bandwagon, assuming he can't do much of anything, and consequently add to the downward spiral.  Whatever chronic/terminal illness that someone has, a definite diagnosis with valid information on the possibilities of how it will progress is beneficial to that person, their spouse family etc.  I also think it is beneficial for those around a person with any of these degenerative   neurocognitive diseases to maintain a positive attitude and to remind the PWD about what they still can do, and encourage them to stay active and follow these "best practices " you all speak of.  That is really what I am trying to do.  I wish he would get on these boards and read and respond, but for now, he will not.  I love technology.  He does not.  It is also one of the biggest things he has trouble doing.  It is frustrating to him, so I don't push it, but will gently keep urging him to get on the boards and read like I am doing.  

As for the fatigue, the reason I keep trying to ask those of you with a similar diagnosis if this extreme fatigue is part of EOAD or Lewy Body dementia or MCI etc., is because it is so bad, and I want to make sure the doctors have not missed a medical cause for the fatigue.  That being said, I can't believe they would have missed anything, because he has had so many tests the last few months.  I hope the PET scan etc will be the last for a while.  I just hate we have to wait so long.

Anyways, Bill you mention that your home is your refuge where you feel at peace etc.  I feel the same way for my husband and me, and sometimes there is just no place like home.  I have tried to make the back yard very peaceful with plants, shade, a place to stretch out and lay down and decompress.  I have made places inside the home like that for him also.  We have been together almost as long as you and your wife, and have been married almost 33 years.  I am thankful everyday for him.  I'm  trying to get rid of clutter etc. so that " so much stuff" doesn't  add to the confusion in his head.  It's a work in progress , but I'm trying.  Thanks ,as always, for the input!  

SBL


jfkoc
Posted: Tuesday, May 31, 2016 7:21 PM
Joined: 12/4/2011
Posts: 21242


SBL...please I encourage you to join us on the Spouse/Partner forum.

Now re your husband saying he is not depressed...I think it is possible that he is depressed and not recognize it.

I so agree with Bill. Keep on with what seems beneficial and drop the rest like a sack of hot potatoes. To do this you need to listen and watch carefully but it is possible to do this.