Don’t know what to do anymore.

careaboutmom

Mom’s symptoms are getting progressively worse every day. 

Current medications:

900 MG Lithium 

300 MG Seroquel at bedtime 

50 MG Seroquel as needed 

50 MG Trazodone

This all started in March of 2020.  Mom contracted Covid-19 and it alerted us to a blood clot. She was hospitalized and initially the doctors believed she would die and that it looked like liver disease. However, they soon discovered that she had Paroxysmal nocturnal hemoglobinuria (PNH) a rare acquired, life-threatening disease of the blood. The disease is characterized by destruction of red blood cells (hemolytic anemia), blood clots (thrombosis), and impaired bone marrow function (not making enough of the three blood components. 

While we were initially very frightened of the diagnosis, we were hopeful that she would be able to receive treatment. She was started in a drug called Soliris, which is infused every two weeks and costs over $400,000 a year. She has been keeping up to date with the treatment for the majority of the last few years. 

Unfortunately Mom decided after the diagnosis in May 2020 she was going to stop taking her lithium medication. This resulted in a manic episode and lasted until February 2021. We couldn’t get her to take her medications and it wasn’t until November of 2021 that we finally were able to get her to take her lithium again and the doctors added Seroquel and trazodone. Mom was previously on liquid risperidone and injection however showed no improvement. We also tried olanzipine but it caused tremors. Both were stopped. 

Today, mom is living with me, her son and my brother and sister. We are in our 30s. Because mom had a manic episode in 2020 my father abandoned her and left us to care for her. 

Every day is a struggle. We cannot get care in the home due to financing issues and the government only covers 1 hour every two days to help with hygiene care. Mom cannot be left alone. I’ve had to take a leave from work because she needs to be around one of her kids at all times from morning until night. If we leave her, she will call our cellphones 40 times in a row. I also received 55 text messages from her in a single hour lately when I go to the grocery store. Even though my sister watches mom when I’m grocery shopping, she will message. She will do this if any of us leaves and someone watches her.  

She makes repetitive statements all day such as:

- I am going to get stuck during the night. 

- I don’t have perception of time 

- I don’t have any clothes, I’m going to be nude soon

- Do you believe me 

- I’m not going to sleep during the night 

- Should I rest

These statements seem to cycle and last for a few weeks then a new statement comes in. Or an old statement comes back from months ago. 

We just don’t know what to do anymore. The medications do not seem to be working and we cannot get any psychiatrist to properly assess due to Covid restrictions all appointments are on the phone not in person. Further, in the last two years she was admitted to psychiatrist inpatient care 7 times but was discharged with no real diagnosis or support. They basically just gave us the prescription and sent us on our way.  

I don’t know how to help mom more than I am already doing. I have no social life. I cannot leave her. No friends anymore and probably going to lose my job if I don’t go back at some point or will face reduced benefit payments.  I just need help and don’t know how I can make the situation better for her. 

LicketyGlitz

careabout, I don't have advice to offer as we did not battle additional mental health issues besides our mom's dementia. So I just wanted to say I've heard you, I totally feel for you, and I hope someone else will respond with a suggestion, a tip, a anything that might give you, your mom, and your siblings some relief.

harshedbuzz

The intersection of mental illness and dementia is especially challenging. Managing it all as a 30-something when the spouse has gone MIA is all kinds of unfair.

In your shoes, I would be looking to a CELA to investigate spousal support to fund placement. 

The phone behavior is a common dementia issue. Some people have the calls/texts go to a burner phone set up with a reassuring personalized message. Others set aside a time of day in which they called their PWD that is convenient for them. Others have to disappear the phone entirely.

Joyiat

As I read your story, it becomes apparent that you’ve emptied yourself to care for your mom. Some advice I’ve been given along the way is that an empty teapot can’t fill anyone’s cup.  You first need to find a space in each day where you can take care of yourself.  Even a few minutes can help.  Sit alone somewhere quiet. Journal your thoughts.  Breathe more deeply and slowly, and imagine yourself wrapped in the love of all of us here in this place.  

Some practical things to consider: Mom’s finances - can she afford residential care?  If not, what steps need to be taken to acquire funding-perhaps public funding?  My mom sold off everything before she moved to residential care, and the selling and moving were her decision.  Knowing how hard it was even with her cooperation, I send extra strength to you for your journey.  Power of Attorney, Will, etc. - having these items in place sooner rather than later can really help ease your mind.  I recently lost my little brother to pancreatic cancer.  Having the necessary structures in place before things went really bad helped me better support him until he passed, and made managing his estate so much easier.  Not easy…but easier.