Brain Drain

Dementia with Behavioral Disturbance, unspecified dementia type

This is the Primary Diagnosis for my Mother in Law.

What does this mean?
According to the some articles Dementia is now considered a fatal disease. That said, let's not freak out. Let's look at it logically.
Our brain is an organ that controls the rest of our body. It controls all of our organs. Think of it as our hard drive.
If a segment of the hard drive gets 'corrupted' certain functions of our computer won't work.

Rich is the Financial POA for his mom. It may be a job he is not capable of in the long run. His sister who is 'second' on the POA forms will be moving to Utah in about 8 weeks.
She spent the last two weeks with MIL, seeing how she'd fare in her apartment.

Well, MIL can do most things but her memory is a huge issue. MIL recalls that Mondays at the nursing home are days that they take baths. Her weeks are foggy to her. Certain things from the week before get lost in the memory fog.
So she may not realize that a Monday has arrived and needs that help.
Details regarding medications do stick with her, but if the pill manufacturer changes in any way, she gets rather upset and positive that her meds are incorrect.

Sometimes she has trouble telling day from night.

I signed up for an 8 hour course at ALZ.org, if nothing else, I can learn a bit of how to deal with some of the day to day issues that arise with dementia. Communication is one of the biggest challenges. I need to modify my way of thinking and communicating. The course is free.

We've contacted an attorney and are getting some social workers to her apartment to conduct a Home Evaluation. MIL is sure she will get her 'mind back' and be done with the family invading her spaces. I get that as she has been a strong willed woman who is fierce about her independence.

I've contacted Helping Hands to come out and meet with the both of use also. This way she can have another set of eyes checking on her as I cannot be in two places at once.

We will be investigating Guardianship for mom too. That would allow the family to be family and not be the 'controllers' of her everyday life. 

Chronic Kidney Disease is closely linked to issues of behavioral disturbances, dementia, depression, and sleep issues.

Chronic Kidney Disease was her primary diagnosis but she has declined to the level of having 'Dementia' along with it. 
One wouldn't think that Kidney issues would affect the brain, right?

The kidneys take out toxins in our blood and dispose of them. However, when the kidneys can't do their job, those toxins reach the brain.

No one likes to think of their parent as infirm. MIL's decline to this present state was very slow, so slow as to be imperceptible except for the past 6 months. Her lack of self care was evident, however we could not force her to seek medical care. It wasn't until she had a fall and was taken to the hospital that we were able to finally get her the medical attention she needed.

To that end, she has done very well. Five weeks of Physical Therapy and socialization, walking, and being on a schedule all improved her physical appearance and the edema in her legs while she was in Rehab.

Since she has returned to her apartment, she has closed her door to the outside world and retreated to her chair and bed. 

I do look at the bright spots though. Some days she is the 'angry' upset woman, and then there are those days were she is sunny and happy. 

I will have to lean on Social Workers for assistance as I am already the CareGiver to Rich. I'm not sure how to navigate this new issue on my own.

One step at a time, just like our journey through cancer and stroke.

Navigation of the Health System

Last night in the mail I got a letter for a scheduled appointment that did not show up on the Myhealth.va site.

I've learned quickly that the site is slow to catch up to appointments that are made.  Yesterday's appointment has not shown up yet.  It makes me scratch my head a bit.

Now I see appointments popping up like crazy, yet yesterday's surgery is still not showing.  

So I called my new and best-est VA Hospital friend, Margarette.  She promised to have the Head Nurse from Oncology - Chemo call me.

This is only possible because Rich and I not only gave them a copy of our POA Health Care papers, but also because we made sure that we signed paperwork that allowed the VA to share medical information regarding my husband to me.

If I didn't have this paperwork already in place, I'd be sitting in the dark wondering and hoping that my husband who is not good at details would remember anything verbally told to him. 
I am my husband's medical secretary and health advocate. 


I am still going to trying to juggle part time work scheduling around his appointments,... more than likely I'll be doing weekend hours as long as I can handle it.

My job is trying to be accommodating which I really appreciate.  I've been scheduled for nearly 30 some hours a week for the next couple of weeks.  Since I couldn't give them dates for start of treatment, they scheduled me.

Dr. W. said that Rich could actually drive himself for the first week or so.  
Then the head nurse at the Rad department said they would not let him drive home because he has to take meds for relaxation during treatment.  
Hubby is very claustrophobic and they need him to be absolutely still for Tomo Therapy.

Today I am learning how to be an aggressive Caretaker. I made a spreadsheet of all the Social Workers and Care Coordinators with their phone numbers and their emails.

I've shared it with Rich's daughter ~ which reminds me that we need to add her to the list of people who can get medical information from the VA regarding her father.

She will be an important part of helping her Dad through this treatment, as well as her children who Grandpa Rich adores.

Onward.