So confused and so tired

mathreader

First post here - My husband was diagnosed with Stage 4 Alzheimers last year from a neuropsychologist. Afterwards, we went to a neurologist who diagnosed MCI. We have had blood tests for B12, sleep studies, an MRI and more recently a PET scan done. The blood test and sleep study turned out fine. The MRI and PET scans were not definitive. However, if it isn't a more severe type of dementia or Alzheimers, I am really confused and exhausted. He can't remember things from one minute to the next, he can't follow a conversation at all, he is depressed and anxious, can't stand to be away from home, he needs me with him all of the time, and calls if I am out of the house for more than an hour. He needs help with everything, from picking out clothes, to making the bed, to taking his meds, and on and on. We were on a trip this week and I came home with a cold. He can't be nice about me not feeling well, even though my life is taking care of him. I'm tired. I don't know where to go next. We will be getting another evaluation by the neuropsychologist soon. Hopefully it will confirm the Alzheimer's diagnosis, because if it doesn't I may go crazy myself. Does anyone else feel lost? Today was the one day I could have used someone to take care of me, but that wasn't about to happen.

M1

Welcome to the forum, you have come to a good place for advice and support.

It definitely sounds like Alzheimer's or a re!ated dementia. No test is 100% definitive premortem. I do not understand why neurologists so frequently say mild cognitive impairment when it is clearly more than that. I think it's knee-jerk to say that on the first assessment.

IF you look to the right under Quick Links and groups, there is one for new members that collects a lot of frequently cited information. There's a staging tool there from Tam Cummings that is very useful. Also a lot of information about being sure your legal and financial issues are addressed, that needs to happen early if it hasn't already.

Loss of empathy is one of the very hard things about this disease. You lose the person you used to depend on, and it is so painful. All of us spouses have experienced it. It's also terrifying to have someone depend on you for everything, with no backup or respite. Many of us know how that feels too.

Hope you feel better quickly. Read a lot of threads and you will learn a lot. Many lovely and experienced people here.

nitebird

I'm pretty new here myself. I understand how you feel.

Sorry you are dealing with a cold on top of everything else. I hope you feel better soon.

ButterflyWings

https://alzconnected.org/discussion/69365/so-confused-and-so-tired

Here is the link to the Group M1 mentioned - the Tam Cummings Staging Tool may help you see where your DH is today. I am not sure that continued attempts to evaluate him is helpful. The initial diagnosis seems to be verified, by the things that are happening with your DH right now. Those are exactly the behaviors we dealt with in mid-stages of Alz.

Do read as much as you can here - this is the best information available and good people, in the same boat as you are. We get through these exhausting days together.

https://alzconnected.org/group/32-new-caregiver-help

harshedbuzz

@mathreader

Hi and welcome. I am sorry for your reason to be here, but pleased you found this place.

I can hear your frustration in every word; the process of getting to a firm diagnosis is not always straightforward. I've been down this road with dad and am now in the early phase with mom. Even though I know the limitations of testing, I find myself feeling as though there's a lot riding on her MRI Thursday.

A lot will ride on what the clinician is looking at— test results to rule out some other, possible treatable cause like sleep apnea or a vitamin/hormone deficiency or a pattern of skills deficits on pencil and paper tests. At the end of the day, as a 24/7 caregiver you are likely the one with the best sense of where he is in terms of progression. You know best.

My dad showtimed like he was vying for an Oscar. He was also freakishly good at the quick screenings doctors use to watch progression. I remember a visit with dad's geripsych in which dad was joking in Yiddish with the doctor (Dad was a lapsed Irish-Catholic) and then rocked a MoCA at the cut-off for MCI 6-9 months before he died from complication of aspiration pneumonia. On the way down to lobby, dad bragged about being "off the charts" and then toddled over to a car driven by a little old lady who was dropping off her car while my back was turned at the valet stand. Not a car similar to his and certainly not his wife at the wheel. Off the charts indeed. And of course, he said it was our faults because it wouldn't have happened if he were driving.

As M1 suggested, the loss of empathy is real and painful. So many people think of dementia solely in terms of memory loss, but there are so many losses and changes evident fairly early in the disease process. Apathy, lack of empathy, poor execution function and an inability to reason can have at least as critical an impact of quality of life as a poor memory.

HB

mathreader

Thank you so much for your response. Knowing there are others who "get it" is very helpful. Yes, it's amazing how well he can act in front of others. At the doctor's, however, he needs me to answer every question. I try to stay out of the conversation so the doctor can see how he really is, but even the doctor looks to me for answers.

We were away on vacation and that is so hard for him that I think we will not go away again. After a couple of days he just wanted to go home. He usually sticks closely to me, but this time we were in the dining room and he took off to our hotel room to get something. He never found our room, and then ended up in a lobby of a hotel across the street. Thankfully he called me and I went to retrieve him. This is the first time he has gotten lost, but, as I said, he really doesn't go anywhere without me.

I really think he was upset that I was sick more because he was worried about what he would do if I couldn't be there to help with his every move during the day. My most commonly used words these days are "I can help you". Exhausting sometimes, but I'm ok about it. I often wonder if I am doing too much and enabling him, but helping often hurries the process of what is being done: finding glasses, picking out clothes, helping with medications, finding the orange juice in the refrigerator, for goodness sake! You get the point.

I really want to stop the testing and to move on. I wish we hadn't gone to a neurologist, to be honest, and I'm not sure what I expect of him. He seems incredibly nice and knowledgeable, but I feel like we are spinning our wheels. I guess I'm hoping for some medication that can help more.

I wish there was a support group near me, but I haven't found one yet. I'm just happy to have written and to have had some feedback from those of you who have responded.

Thanks again for helping me out.

M1

what you are doing for your DH is called “scaffolding “-he is dependent on you to function, and it is definitely exhausting. It can also lead to “shadowing,” when he doesn’t want you to be out of sight. At some point you need to start thinking about getting help so that you don’t implode.

Yes, travel becomes too disruptive beyond a certain point and it definitely sounds like you’re there. He’s clearly not safe to be on his own in an unfamiliar environment.

We never went to a neurologist. Once the diagnosis is established, they are not much help-unless he is a candidate for one of the newer drugs, and honestly it sounds like his disease is too advanced. You may get more help from a geriatric psychiatrist than a neurologist, especially if he develops anxiety or behavioral problems. You might ask for a referral, as there can be a long wait.

mathreader

The suggestion of a geriatric psychiatrist sounds perfect. He has high anxiety and is certainly depressed. His neurologist has mentioned a psychiatrist in the past couple of visits, but hasn't referred him to one yet. I think I will ask for a referral right away. That is a great suggestion! Thank you so much

dancsfo

As selfish as it may sound, I recommend you find a way to give yourself some relief — perhaps find a way to give yourself some time off or respite, if there are some who can assist. If you fall ill, or get exhausted and cannot function well, your husband and yourself will both suffer.

/STEVE

" My most commonly used words these days are "I can help you". Exhausting sometimes, but I'm ok about it. I often wonder if I am doing too much and enabling him, but helping often hurries the process of what is being done: finding glasses, picking out clothes, helping with medications, finding the orange juice in the refrigerator, for goodness sake! You get the point."

Welcome to the site. I read the site more then posting. Lots of good information.

I have just the opposite, I wonder if I am not helping soon enough. I will let her look for her glass for 30 min before helping her. That is 30 min that she is not asking me what we are going to do today. She can not remember for more then 2 min. She is still doing the wash and about half the time it goes back in the wash for the next load. She still making the bed. A few months ago she was tearing the bed apart so she could wash the sheets and she did that 5 times in one week. I did not say anything to she, she was happy and it gave her something to do. She like reading and has been reading the the book "The Martian" for a year now. . When she gets close to the end I will move her book mark to the front of the book. She realty likes the book and she will tell me about it. DW will unload the disk washer, yes, I will spend more time looking for stuff, then if I had unload it. She will tell me she want Tea and ask if I want any and ( I gave up) I just now say yes. In ten minutes I will not have any thing and she will have tea or I will have a cup of coffee or it may be tea, or neither of us will have anything. ( and yes this is not the person) married ) When I need a time out and nothing is working. I will just ask her if she would go take a nap because I need time by myself.

It looks to me all our love one are different.

See if there is anything he will do by himself (who cares what it is), to get you some time to your self.

Get someone to come in for 4 hour a week, even if you do not leave the house, it is nice to take a long hot bath.

All the important stuff I do, make meals, meds, finance, drive,