New to group(6)

mommabear for my mom

I'm new to the group and thought I would share my story in the hope it resonates with others so they know they are not alone, and get insight from others who have been on this journey much longer than me.

My mom was dx with early onset Alz. dementia in 2019 (age 71) and has advanced rather quickly. I would say we are in the moderate stages at this time. She was showing signs years before her dx but because I lived 7hrs away, it was not as obvious to me. She was able to live and drive independently after her dx but the neuropsychologist and gerontologist did suggest she downsize to senior living to help simplify her life. Fiercely independent and adamantly in denial of the situation, she refused, and stayed in her own home for the next 1.5 yrs. During this time her  odd and irrational behavior and decision making became a huge concern and detriment to her well being.  She also lost a significant amount of weight,  and became increasingly anxious and paranoid about things being stolen when she couldn't find them. The truth was, she was hiding coveted items and then forgot she did as much. This often led to calls to the police and/or family/friends in a complete panic, often necessitating a visit from one of these people. By Thanksgiving weekend 2020, mom 's calls to the police reached an all time high (12x over 3 days), and she didn't remember making any of them. The police had a rescue unit come to the house in an attempt to bring her into the hospital for evaluation for the odd behavior (r/o UTI, etc.) During her stay, she panicked and eloped on the third day at 2am without anyone noticing, and walked 3 miles to her home in frigid temps. She was eventually brought back to the hospital and evaluated by a neurologist. He indicated mom was a smart lady (and crafty, she placed pillows in hospital bed to look like a body and snuck out), but had SEVERE short term memory loss. They would not release her unless she had 24hr support. As her POA,  I had hard decisions to make in a short period of time during the peak of COVID. Because she was very alert to person and place, and having never left NYS, I decided it was in her best interest to be placed in a memory care facility locally. I did have several assisted-living facilities evaluate her before settling on Memory Care but they indicated that she would need to much oversight in their setting, and ultimately would not take her.  I figured family and friends could and would visit/take her out frequently and  I would make the 7hr trip in monthly to see her. We talked about this extensively while I stayed with her over the following 2wks before her apartment was ready. Though very sad about this, she understood in the moment but very quickly forgot-we talked daily about the impending move.  Her memory care stay was very turbulent as she was always packing up her apartment and was exit seeking. She even managed to get out once, and on another occasion refused to come back inside after a walk with staff. Her paranoia and anxiety heightened in this new space and her hiding tendencies continued. Unfortunately over the 13mo. of living there, her family and friends failed to visit as I had hoped. Perhaps it was too much to see their sister/friend in this state of being. My decision to keep her local was for her. I knew at some point I would need to have her closer to me as she would need me to actively advocate, but I thought this would be in the later stages of the disease when she didn't recognize her surroundings and potentially me.

At the end of December I made the decision to move her closer. I couldn't stand knowing she spent Christmas without her family taking her out for a few hours to share in the holiday, so I moved mom into a facility 10min from my home earlier this month. 

She has changed significantly since our extended visit this past Thanksgiving. Physically she shuffles now and has a hand tremor. She is not recognizing me as her daughter. She often thinks I am her sister or mother. When she does recognize me she is surprised to hear that I have been married for the last 23yrs and is mad she wasn't at the wedding (she was, and actually gave me away). I have to reintroduce her to my husband and her grandchildren when we visit. She has always sundowned but this is happening much earlier in the day (around 2pm) and now is sometimes having auditory and visual hallucinations. She becomes quite paranoid and agitated and anxious during this period. Her transition into the new memory facility has been challenging and we are only 1.5 wks in. Staff states she is constantly exit seeking and her behavior is ramping up the others. 

Mom is on a several medications since the dx in an effort to help but right now don't seem to be doing much good during the "bewitching hours". I understand there will be an adjustment period for her but it breaks my heart. I apologize this is so long. Just feeling alone and defeated by the disease. I want to bring her some sense of peace but it is always fleeting. Thanks for "listening". 

SusanB-dil

Hi mommabear - welcome to 'here'...  so sorry you are going through this.  Do know you are not alone!

your mom has anosognosia - it is not denial, but the total unawareness that there is a problem at all. This is more the norm than not.  

Hiding things, and then forgetting where - also very common.  And unfortunately, she may not have progressed as fast as thought, since she was more independent longer than most, so some of that earlier progression may have been hidden from you.

There are medications for the agitation, please do check with neurologist, and yes, that is crafty using the pillows!

Do check out the 'solutions' tab above.  and check out other posts. There is a lot of compassion here. even though each person is different, there is much expertise in similar circumstances, that i know I can relate to and get much helpful information from.

for more info on stages : https://www.alzheimers.net/stages-of-alzheimers-disease

 also: https://tamcummings.com/stages-of-dementia/

(will probably have to copy/paste)

editing to add: a lot of us have had friends and family scatter.  my thought is that they don't know what to do, or how to take this person whom they don't know any longer. or guess they just can't handle it.

LicketyGlitz

Hey mommabear, you have come to the right place! I've been through a lot of what you're experiencing, although we skipped the epic police tales. I do have a caregiver friend though who's dad would often call the police to lock him up as he felt he was not giving her dementia mom adequate care. The police were very kind even as the requests became weekly events in their workload.

This forum is an excellent place to vomit up your caregiver woes, and it might be cathartic for you to do so. There's also some excellent FB groups too, one being Dementia Through Daughters Eyes. 

Never feel weird about spilling your guts here. We get it. We do it too.

Iris L.

Welcome mommabear.  When you were a child did you ever spin yourself around until you were dizzy, then stumbled about for several moments after not spinning?  For PWDs, moving about and other changes are like getting dizzy.  But the confusion does not resolve quickly, indeed the confusion and other behaviors may persist for days, weeks or even months after precipitating changes.  

The solution, of a sort, is to reduce changes in the PWD's life.  Think of the movie Groundhog Day--try to keep everything the same, as much as is reasonable and sufficient for your LO (loved one).  

Medications may help but she needs consultation with a geriatric specialist.  Many commonly used meds used on older adults cause agitation.  Read the Beers list.   Also read about non-drug methods of stabilizing the PWD's environment.  Best wishes to you and your mom.

Iris L.