Feeling lost(4)

Family is forever

I have been reading everyone's post for a few days now and have finally gained the strength to write my own . For the last year my family has notice some memory issues with my mother, my best friend. At first we thought it was just signs of aging since it did not drastically impact her daily life and she is 75 yrs. old. On June 29th, my parent's 54th wedding anniversary, I went over to wish them a happy anniversary. That is when my whole word came crashing down. 

My sweet mother pulled me aside and with a look of sheer panic told me that she had no idea who she just went to dinner with (my father/her DH) and was scared that he knew so much about her life. We immediately rushed her to the hospital to determine if she had a stroke or brain bleed. All of her tests came back normal, but it has been a downward spiral since then. After many discussions with her we have learned that she feels like she is living a different reality. She knows her husband's name and all three of her children but she does not recognize us. She has convinced herself that there are two versions of each of us and her real family has abandoned her. 

What is particularly troubling is that she no longer feels comfortable in her own home with her husband of 54 years because she does not recognize him and thinks that she is being unfaithful to my father. We have set up a separate bedroom for her and reassure her that my father will not hug or kiss her unless she would like him to. I am also staying at the house as much as possible, but I am on the verge of breakdown. I began seeing a counselor to help process all of this but we are all breaking inside. 

This has all happened so suddenly and my family is learning and adapting every single day to make sure we use the names that mom feels most comfortable with. In a cruel twist of fate my mother's dog of 17.5 years is dying and I am petrified what that will do to her. Lacey has been her buddy for over 17 years and the one constant that she has been able to recognize through all of this. 

I guess I just needed to vent before I lose my mind. We have our first neurologist appointment tomorrow. 

Ed1937

Family, welcome to the forum. I'm sorry things have so dramatically declined. Whenever things take a sudden turn for the worse, we automatically look for a possible UTI. When people get older, they often have a UTI, but show no typical symptoms. If there is a UTI, when the infection is cleared up, things can return to baseline. It would be worth having a test dome for a UTI, and please ask for a culture with it. That will give them the needed information on how to best treat the infection if there is one.

Quilting brings calm

Hopefully some of the  medically knowledgeable like M1 will see your post soon.  It sounds like Capgras syndrome. 

 https://www.webmd.com/mental-health/impostor-syndrome-capgras

M1

Hi Family, welcome to the forum.  Sounds like you all did the right thing to have her medically evaluated--and the bad news is that they found nothing reversible.

If it helps at all, my first suspicion would be that while this seems sudden to you, it's probably been building for a long time.  I just wrote on another thread how all of us tend to underestimate the degree of dementia our loved ones have:  maybe because we live with it so closely, it's hard to see the gradual changes.  In your mother's case, I would also suspect that your dad has been "propping her up" if you will--scaffolding, others call it--the caregiver provides so much support to keep the PWD functioning, that when that's removed, the deficits are even more obvious.  Doesn't really matter, but if you get a chance to talk to your dad, it wouldn't be surprising to find that he's been aware of more progression than he's let you know of.  If she's not recognizing family--and by the way, Quilting is spot on, Capgras syndrome is the persistent delusion of imposters--that's a pretty advanced sign.   There are lots of other threads here about how devastating it is when our LO's don't recognize family any more.  Excruciatingly painful, happened to me too.  

Glad you have the neurology appointment.  You might benefit from looking up Tam Cummings' stages of dementia to get a feel for what other behaviors go with the various stages and where she might fit.  But it matters what type of dementia she may have--Lewy Body and Parkinson's can have more delusions than Alzheimer's, for example, and maybe at an earlier stage.

 Good luck, I'm so sorry this is hitting you out of the blue.  Keep us posted how it goes.  This forum has been a lifesaver for me, I hope you and your family can find it helpful too.  

M1

One more thought or suggestion by the way: stop discussing this with her, it won't help and will just frustrate all of you. She is beyond responding to rational arguments. Best to just redirect or be noncommittal.

Family is forever

Thank you all for your thoughts, suggestions, and well wishes. I feel like such a terrible daughter (and I know that is irrational) for not doing something sooner. I know that there is no cure or way to reverse the disease, but I feel like I did my mother a dis-service for waiting so long. 

I see my parents several times throughout the week and I feel like I should have pushed her more. Dementia is an extremely sensitive topic in my family and I think that we all were just too afraid to acknowledge what was happening. 

My mother received her diagnosis today and I can honestly say that this has been the worst day of my life. 

quartlow2

Family is forever wrote:

"Thank you all for your thoughts, suggestions, and well wishes. I feel like such a terrible daughter (and I know that is irrational) for not doing something sooner. I know that there is no cure or way to reverse the disease, but I feel like I did my mother a dis-service for waiting so long. 

I see my parents several times throughout the week and I feel like I should have pushed her more. Dementia is an extremely sensitive topic in my family and I think that we all were just too afraid to acknowledge what was happening. 

My mother received her diagnosis today and I can honestly say that this has been the worst day of my life. "

As you said, you are thinking irrationally. It's hit you suddenly and hard. But you need to recognize that you could not have changed a thing. And this kind of negative thinking is a distraction from how you are now needed. I agree that families ARE forever. This mortal body is not going to last forever before the resurrection. The brain is an organ like any other in the body. It is amazing! But things happen to it. And when it is damaged, it is very confusing for everyone. Pray for wisdom in how to go from here. It's a daily challenge. God knows you and your family.  Mom called me her "helper" at times. I asked her who Dad was. She knew his name but didn't think they were married. She got to where she locked their bedroom door when she went to bed so that he would have to sleep in the recliner in the living room. (He didn't want to tell us that.) It's normal to grieve the loss of your mom as you've always known her. Seek all the support you need to get through this. We were blessed with a close family who became closer during our parent's aging issues. My mom had aphasia and dementia and Dad developed heart failure. They did their best to care for each other but we finally got them to accept moving to a care facility near my brother. Dad needed AL. Mom needed MC. At first they were separated by a hallway and a locked MC door. But Mom escaped to look for Dad a couple times. So the facility suggested he move in with her; which he did. If a facility is not your solution right now, talk to their PCP about Home Health care. It's nowhere near the fulltime help that she needs. But weekly nurse, OT and ST visits are extra sets of educated eyes that gave me reassurance and may help your Dad understand more about her condition. I also agree with the person who mentioned testing for a UTI. When deciding on a Home Health agency, ask if they can do labs when ordered by the PCP. You're in my heart and prayers.

GothicGremlin

I am so sorry, Family is forever. I know that feeling of shock. 

There's a lot of good advice so far, but I'll add in my own two cents. Please don't beat yourself up over not doing something sooner. There was probably nothing that you could ever have done. Your mom probably went through a mild cognitive impairment phase, which can last many years. It's possible that whenever it began for her, she probably didn't notice it much.  I say this because my sister was diagnosed with early onset Alzheimer's in 2018, and when I quizzed a couple of her close friends and work colleagues, I found out that she was struggling at work as far back as 2011.  I couldn't believe it. And Peggy (my sister) herself didn't notice anything wrong until around 2016 when her visual perception got weird. But I think that's how mild cognitive impairment is.

M1 is right -- take a look at Tam Cummings stages of dementia to get an idea of where your mom is. I still use those stages. I think you'll find your counselor invaluable. I know I've found my therapist to be worth her weight in gold.  Like others, I've also benefited hugely from this site, so much good advice.