First post - not sure where to start

BlueberryDog

My mother (75) has shown increasing signs of dementia over the past 2 years, but it was slow and sporadic. However, during the past 2 months, we have seen a rapid decline in her cognitive abilities. This is a woman who was a powerful top executive, sharp, in-control of all situations, and stubborn-stubborn-stubborn.

Both her mother and sister had Alzheimer's at this same age, so this is not out of the blue, but the events of the past 2 months have been extremely challenging, especially for my father, the primary caregiver. It started with her ceasing to do any cooking or cleaning (both my parents are clean freaks and until now have shared the cooking and cleaning tasks) and some days she skipped getting dressed or bathing.

I took her to a doctor's appt last month and brought my concerns up with her physician. He reluctantly ordered a mental test. She scored 23/30, and in our follow up visit, he said he didn't have concerns about the cognition, that it was likely connected to aging and mild depression. I noticed that in her chart however, it showed the score along with "Mild Dementia".

My father has thus far resisted the idea of having in-home help, but the past weeks have really brought the situation to a head. She had a UTI a few weeks ago, and that week she had episodes of delusions and paranoia, culminating in an episode where she struck my father. 

This week, she told my father that she will no longer take showers (in her mind the shower gave her the UTI) and was washing with bottled spring water. Her behavior the past few days has been completely erratic, with delusions of being trapped as a prisoner in the house, trying to pack a bag so that she could leave and rent an apartment and get a job, and destroying objects around the house. My father has become the villain in her story.

Because she is fully aware of the Alzheimers in her family, she is adamant that there is nothing wrong with her mind and accuses everyone of concocting stories. Getting her to the 2 doctors visits was a miracle, I don't know how we can get her back there just 3 weeks later, especially if we again fail to get a diagnosis.

We're at a loss at what do to next. There are days of calm and near-normal behavior followed by absolute chaos and delusion. Have begun reading the 36-hour day and so I feel like I have a better understanding of what her mind is going through. We want to move forward with getting in-home care, to change the dynamic in the household and also to give my poor father a break, because he is most definitely at the end of his rope.

It feels good to get this all down, thank you for any advice you can give...

SusanB-dil

Hello BlueberryD - sorry you have to be in our little corner of the world, but welcome

Wonder if she is fighting the same or another UTI?  Do you or dad have POA, or are either of you on her HIPAA 'ok' list?  Might want to give her doc a call and tell doc what is going on.

'The 36 Hour Day' - yes, good reading!

My Hero Called Home

So sorry to hear that you are in a far to familiar position. My father passed 11/6/21 at the age of 79. He was diagnosed roughly 5 years ago but the last year his condition rapidly declined. I knew very little about this disease prior to my own experience and when the hospice nurse said he was now at a 7 on a scale of 30 I really had no idea what that meant in real life terms. Shortly after that conversation my father began what would be his final decline. We accepted Hospice and it was explained as a way to assist us and give us access to resources not otherwise available. Do not let the stigma that Hospice has it was a blessing to have these talented people in and out of the house offering support, laughing with us, and giving us updates on my fathers situation. When we first began the hospice they assumed that my father may be gone from us at Christmas but at this point they were unsure. Take the help that is out there and give your loved one the care and attention they need. It's a hard progression to watch I describe it as stripping layer by layer away. My father was in business and very savvy in his trade and at the end it was difficult to watch what once was but this disease NEVER stole his sense of humor.  Just know many of us are like you whether in the beginning, the middle, or like myself the end of this journey. There is always alot to process and some second guessing along the way but in the end you are connected to a community now that has been there and watched that.

Iris L.

BlueberryDog wrote:

Because she is fully aware of the Alzheimers in her family, she is adamant that there is nothing wrong with her mind and accuses everyone of concocting stories. Getting her to the 2 doctors visits was a miracle, I don't know how we can get her back there just 3 weeks later, especially if we again fail to get a diagnosis.

We're at a loss at what do to next. 

Seventy percent of PWDs (persons with dementia) have anosognosia.  This is a characteristic of the brain damage that causes them to truly believe they are fine.  If you try to make them see reality, they will resist and become upset.  It has nothing to do with family members having AD.  You will have to learn work-arounds which the members will tell you about.  Read a lot of threads and post a lot.  The members will help you.

Make the doctor follow up on the UTI--they can be inadequately treated or recurrent.  There are many threads on recurrent utis.  

Iris L.

ATK1

Hello, I'm new to this, too, and have found so much good advice and support from this forum!

I will focus on your comment about the doctor reluctantly performing the mental test. My mom isn't having the same issues as yours, but her memory is certainly failing and she recently moved in with me and my family.  I do find her PCP not very interested in her cognitive state, does not believe in medication for dementia, and in general mostly focuses on her physical status. I am considering changing doctors to a geriatric specialist or exploring clinical trials. Perhaps that may be helpful in your situation , too, to help explain/manage her sudden decline,

Making sure the UTI is cleared up is important, too. I work in a nursing home and see first hand what infections can do to someone, especially those with impaired cognition. If she won't go to the doctor, can you at least call and tell him/her the symptoms? Maybe another round of antibiotics may be needed.

Your parents are lucky to have you watching over both of them!

jfkoc

Good for you for being persistant about getting to the cause of your mother's behavior.

Please go to the top of the page and select ALZ.com where there is excellent information for you. Take a good look at the diagnosis process. You want to go through the steps in order to rule out treatable conditions that may well be causing what you are seeing.

Do make certain that the UTI is gone...another test but you can easilly get it done at an Urgent Care,

Household help...I love your statement about itchanging the household dynamic. That is what it did here.....very positive.

MarLee92

I really hope you take your mom to another PC doctor.  I found with my mil her regular didn't take it serious and when she finally got to the right doctor, she was already at the moderate stage. So much time wasted. Ask friends , family who they have used for older family members. As far as the UTI, that was the worse experience i had and that was with my mom, who doesnt have dementia. She was sure she was going to die, cried that we couldnt leave her , basically acted crazy and was rude and insulting (not at all normal). The doctor at the hospital said they actually have to grow a culture of the bacteria to know what antibiotic will work - it's not one type fits all.

Good luck and you are at the right place. I recently joined and it's been such a blessing.