I wonder if I am seeing things not there

djtcoll

My wonderful husband of 49 years was diagnosed 2 years ago with MCI, he is slipping more (forgetting conversations that just occurred, throwing out items we need, personality changes, etc.) and I anticipate at our appointment with his neurologist later this month, he will "upgrade" his diagnosis. All of this being said, my husband does not recognize that there is anything wrong (anosognosia) which makes me feel like I am crazy sometimes. I re-answer questions several times a day that he forgets that he asked and yet he has many very normal conversations as well. I guess in these early stages things go like this but then I start asking myself, does he really have anything wrong with him or is it just him getting older? His PET scan was the only abnormal test 2 years ago, with much lower uptake to his temporal lobes along with behavior, memory and driving issues as reported by our adult children and me to his physician and then neurologist. Anyway, I'm sorry for what feels like rambling. Its just been a hard week. I am reading a lot of books on caregiving and have made some changes that have helped both of us but boy its already hard losing the bits he has lost, I feel like I am in constant grief and I know its getting worse. Ok, that's about it, thanks for listening.

charley0419

I feel your pain as my wife diagnosed 3 yrs ago and has really been too bad stopped driving over a yr. That being said I find short memory has gotten real bad in last couple of months. Will ask same question about a certain things multiple times. Hast cooked in 3 yrs either. I see some changes happening now more frequently

trottingalong

It’s all so very normal and confusing. The brain is an amazing organ. So much my husband cannot remember or comprehend during different times of the day. Then he seems normal and clear headed and then…not. Now that the forgetfulness has become more the norm, I question myself less.

djtcoll

https://alzconnected.org/discussion/comment/253032#Comment_253032

thank you for sharing. Not that I want anyone in this boat with me but sometimes it just feels better knowing others are trying to navigate the rough waters as well. Take care.

djtcoll

I think that is where we are heading, as I'm noticing it more and more. If I am truthful, I am trying to remember a day when it did not happen and none come to mind so I probably don't have to keep questioning myself as much. Thank you for being there.

BPS

The first things that I noticed other then short-term memory was that she could have a conversation as long as it wasn't too long or too detailed. the longer we talked the harder it was. she would say something happened and then say it didn't and then it did and she couldn't see that both statements could not be true (her brain got tired) and her vision was affected. She lost peripheral vision and depth perception (she had two small car accident and that is when she stopped driving). Then one small thing after another. I was able to pick up all the pieces until one day I realized all the things she couldn't do any more. I think we tend to compensate more then we realize.

SDianeL

it’s very common for them to seem normal one minute and not the next. They also seem normal talking to others or at doctor visits. It’s called showtiming. They can for short periods of time. Another term is scaffolding by the caregiver meaning that we help them to seem normal. The last thing is denial. I didn’t want to believe he was progressing. I wanted to blame something else. Human nature. It helped me to see how he was progressing to keep a running list of his behaviors. I did not let him see the list. It helped me realize he was progressing and helped me communicate with his doctors. I sent the list to all his doctors at least monthly and more often if something major came up. We understand completely how you feel. Hugs. 💜

PattiRN2

Your story is all too familiar to me including the part of doubting yourself. It wasn’t until my husband’s cognitive tests and an MRI proved he had Alzheimer’s disease that I allowed myself to believe my gut instincts were right.
Now I keep a diary in the Notes app with dates and changes and no one else can access it.

I recently witnessed my husband having a seizure and thought it was his first, but when I read older entries in the Notes app, I see I am describing seizure activity (Staring, sudden confusion) and I didn’t recognize it. It was confirmed as focal epilepsy in an EEG. Alzheimer’s disease and seizures , especially silent seizures, can be indistinguishable. Glad I had my notes.

JulietteBee

I am so sorry to say that I can totally relate.

I have cameras set up in my mom's IL apartment. I "drop-in" throughout the day if I'm not able to stop and make a call to her.

Most times, she is overheard on the phone talking with friends. She sounds so absolutely lucid, even asking them questions such as "How did it go at the event you were going to?" "How was work? Did you talk to your boss about x,y,z?" Etc.

I am often left dumbfounded as to how lucid she is and how she remembers details of their previous conversations to follow up on.

For me, she can't remember her doctor's appt is not this week, but next. She can't remember I had to take the dog to the vet for a surgical follow up.

It often causes me to wonder if I am the one with a problem. Sometimes, it annoys me as I wonder if she is being difficult, just because she can be.

At her apartment, she is able to introduce the staff and residents to me, by name. Shortly thereafter,, she can't remember I just answered the same question three times in the past 10 mins.

💔

djtcoll

https://alzconnected.org/discussion/comment/253059#Comment_253059

Thank you for sharing. I was just listening to a podcast yesterday that talked about using technology to track things I notice. I had been waiting until just before his 6 month neurology appt to try to write down what I remembered him doing. It seems lacking. I have heard a lot about seizures now that I have been reading more about it. So far, so good with my husband. Thank you again, all of this input makes me feel so not alone.

djtcoll

https://alzconnected.org/discussion/comment/253049#Comment_253049

I am learning so much on this site. Thank you so much!

djtcoll

https://alzconnected.org/discussion/comment/253064#Comment_253064

All of these responses are helping me feel less insane. It does not help previously sweet, loving husband lashes out with "you are just looking for problems that aren't there?" I am learning not only techniques to help prevent these moments but also coping mechanisms when my heart breaks that I no longer have my best friend to talk to about anything. Thank you for sharing.

howhale

I find this thread very interesting because I have experienced this situation with family members. Often family would come to visit my dear wife, having heard the status of her condition and cautioned about what they might experience. Frequently following their visit they would either share with me or with others how they were surprised and that my dear wife seemed fine or "normal" and they did not understand why I thought she was ill or had worsened. This happened often. I understood why they felt as they did and how it can happen, having seen it before. Their comments did not concern me but it is frustrating that they are not calibrated with the reality because my dear wife could "perform" during their visit, collapsing immediately after. As time passed and her condition worsened, she was less able to "perform" and the relatives saw a more accurate status. This, however, was alarming to the because they assumed she had taken a dramatic and sudden change for the worse. That was not the case, they were just seeing her when she had the strength and faculties to engage versus her normal behaviors. This can be disturbing for one who is not confident of the status of their loved one and if they are doing what they should. I questioned myself every day if I did the "right" thing for her that day. Others questioning if we have assessed the condition correctly or have we gone too far can make someone further question themself. I think it is important for those caring for a loved one to direct others, family more especially, to a resource such as this to learn how this difference can happen and be expected. We question ourselves constantly, since there is no simple playbook to follow. Having others question if we are off base can be too much. I encouraged all of my family and close friends to signup here and learn about the reality of this condition. Ask questions, search for posting related to whatever it is your are questioning. It can be helpful to all.

worob40

I have been putting off checking out ALZCONNECTED because I thought I could deal with my wife's progression with Alzheimer's. The last couple of days has opened my eyes to "I don't know what I'm dealing with." Yesterday we talked at length about family and friends only to be told last evening she was talking to someone else and didn't remember I was her husband. She is having delusions of other people being in our house when it's only us. She got up last night and got a knife to "Hurt the Overweight woman that was in our bed." I am now concerned if she needs a better medication than Memantine or something else added. Not sure how to proceed.

jgreen

https://alzconnected.org/discussion/comment/257993#Comment_257993

Hi worob40 and all

I watched a video by Teepa Snow the other day she was describing a patient who was telling her husband about ‘those girls in the garage’. Teepa made a home visit and went to the garage with the husband and when they turned on the lights, saw their reflections in the car windows that were rolled up! The husband put all the windows down since the car was in the locked garage and that ended the case of ‘those girls in the garage’. They also found some blankets and towels to cover some of the mirrors in the house. Evidently the wife was seeing her reflection and not recognizing herself. If you have a mirror in the bedroom or something that reflects your image, maybe remove or cover it. Just a thought.

howhale

My wife reacted strongly to reflections of herself and others in windows, mirrors, television screen. I finally put a window covering over windows, sliding glass doors, windows in doors and removed all mirrors I could. Once they see the flections or shadow, there may be no convincing them it is a reflection. It was only when I masked every possible surface of a reflection did the problem become reduced. Not gone completely but, at least manageable. We have to put ourselves exactly in their place with open eyes and minds to "see what they see" and then understand better why they are so agitated and upset. Also, all knives and scissors were secured, not because she threatened me or the caregivers but because of her though to defend herself. Medications can help but likely not eliminate these behaviors.

Denise1847

https://alzconnected.org/discussion/74041/i-wonder-if-i-am-seeing-things-not-there

The behaviors you described are evidence that he has some sort of cognitive decline. It is NOT you. What you see is shocking and sometimes we want to believe this isn't happening and hoping things will get better. I am so very sorry. Please seek out a therapist who specializes in grief, depression and some experience with dementia/caregivers. Take good care of your health: diet, exercise, socialization and mental stimulation. It is very easy to neglect yourself and fall into a downward spiral to depression and poor health.

sandwichone123

Covering windows and windows may help, but make sure you hide/lock up anything that could be used as a weapon. You can use those baby latches on the cupboard doors and drawers. If your spouse notices they don't open you just say they're stuck and you'll have a look in a minute.

I got a safe to put anything of value, and I hid it up high in a closet in a part of the house dh didn't usually go. That kept military papers, jewelry, spare keys, etc.

JTP2025

Hi. I understand your situation, ad your feelings, completely. I am experiencing the very same things with my wife of 50 years. It is the reason I am here. (And this is my very first reply / post.) You are not imagining anything. Our minds like to make us think that so it doesn't seem so traumatic. You'll get through it. We all do, eventually. All my best.

Maru

https://alzconnected.org/discussion/74041/i-wonder-if-i-am-seeing-things-not-there

I suspect that most of we caretakers have felt that we are the crazy ones, at one point or another. DH can go weeks and seem perfectly normal, and I wonder if I am making a mountain out of a molehill. Am I being a drama queen? Then, all of a sudden Alz is back. That is the nature of the beast, Be grateful that your LO is mostly lucid. That may not always be the case. Hang in there.

WIGO23

https://alzconnected.org/discussion/comment/258022#Comment_258022

I noticed this is your first post. I am sorry you are on this journey with all of us here. We are here to walk it with you when you need some understanding and advice. Welcome!

WIGO23

Being unsure how to deal with new behaviors is certainly something I understand. I prioritize safety first. If the new behavior can be unsafe for my LO or anyone else, I do the research to determine what can be done to meet the challenging behavior. I definitely come to this forum searching for the experience of other caregivers dealing with a similar issue. I wish you the very best in finding a coping strategy.