Elder Care Journey 3.0 - Dealing with Alzheimer’s Care

Many of you know that I have seen Alzheimer's creeping up on my mom since 2011. The following describes part of our journey since last summer.

The good news is that I think, we have finally straightened out mom Medicaid Assisted Living Fee Waiver.  Keep in mind that she has been living in the care facility since last June, then in December here is what we went through.

1.      Since June, I kept getting notices from the assisted living facility that she owed several thousand dollars more each month of which I was technically responsible. (Bad News)

2.      December 21 Montgomery Council On Aging called to let me know that she was approved for her Medicaid Assisted Living Fee Waiver (Good News)

3.      On December 24 I receive a letter from Montgomery County Office of Jobs and Family Service notifying me that she was not approved…even though Butler County had approved her one year ago. (Bad News)

4.      After which I immediately request a hearing. Not much else I could do about it since I got the letter on Christmas Eve. (Good News?)

5.      December 27, I call Montgomery County Office of Jobs and Family Service, stay on hold for 2 hours, only to be disconnected. (Bad News)

6.      In January I hear from Council on Aging, saying that she really is approved. (Good News?)

7.      In January, the assisted living facility lets me know that they have received payment (and now I have gone from owing them about $10,000 to having over a $5000 credit. Not sure how this happens, as it should have just zeroed out her balance, but you can only argue with someone for so long telling them that they can keep the money. (Good News?)

8.      If she has a $5000 credit, it will put her over the resource limit (she can only have a net worth of $2000 to qualify for the Medicaid Assisted Living Fee Waiver), so if she has this credit she will be bounced back off the Waiver program and I will go back to step 1. (BAD NEWS)

9.      Finally get a call back from Montgomery County Office of Jobs and Family Services Saying that they think she is approved. (Good News)

10.  For at least the third time, I ask both Montgomery County JFS and the Care Facility to confirm that she really has a credit, because if she does I have to spend it down on her care needs. They say she has a credit balance. (Good News)

I don’t know that anyone can really understand the emotional roller coaster a care giver goes through trying to ensure that your loved one's finances and care are in order. All along worrying if you will somehow be on the hook for the care and what will happen if the care she needs is denied. Add to this mom has absolutely no idea all this is going on, so it's not like I can ask her what she thinks.

Which brings me to how mom is, physically she is doing as well as can be expected. Over the past 6 months I have noticed that she sometimes walks with a little bit of a hunch, but other than that I think she is OK physically.

About 10 days ago we had a care conference at the facility and overall things were positive. The one thing they said was that they were going to be removing all the personal hygiene products (deodorant, toothpaste, shampoo, perfume, powder, etc.) from the resident’s bathrooms because they are on a memory unit and some residents may not use the products in the correct way. Mom did not like it, but said she understood. The bad news here is mom’s mental condition kind of reminds me of a toddler. Meaning, she knew that this care conference stood between her and a lunch at her favorite restaurant, Red Lobster, so I’m not so sure how focused she was or if she would remember that they would be removing her personal hygiene products.

We had a good lunch at Red Lobster and I took her back to her room. I did check to see that they had taken out the hygiene products. But....when I got home….it started, meaning mom was calling me telling me someone had come into her room and “stole” all of her hygiene products. (Mom was always kind of possessive of her things.) So now I have to try and remind her of what is going on. Sad to say, she really can’t recall the conversation during the care conference, so I tell her about the rule. She replies “that rule is stupid”. I ask her if when she was a nurse she always agreed with all of the rules the hospital came up with, she says “I guess not.” I ask if I patient did like the rule would she break it, she says “no”. Then we go back to “I want my stuff back.” Between Wednesday and Friday, I received at least 3 calls a day from mom. 

The calls finally stopped over the weekend, and we got back to the “regular” calls. Which always sound like this.

Me: Hello

Mom: Hello Tom, this is your mom

Me: How are you doing today?

Mom: Fine

Mom: Seth in School?

Me: yes

Mom: Joel still home schooled

Me: Yes, he’s doing his work

Mom: Cori?

Me: she has classes at Miami

Mom: Monica asleep?

Me: Yes, she worked second shift

Mom: How's Princess (This is mom's dog that we now must take care of. Don't get me started on how the dog thanked us for taking her in by pooping in every room of our house and if she got out the front door cause me to have to run a 5K before I could catch her.)

Me: She's fine, sleeping in front of the fire place. (dog has gotten better)

Mom: When you coming to see me?

Me: Sunday, I’ll come get you for church

Mom: then we go over to your house?

Me: Yes

Mom: I'm out of pop, chips, cookies, candy, can I have some more?

Me: Yes (I can only give her a couple, of each, otherwise she drinks/eats it all in a day, throws off her blood sugar. Which results in a call from the nurse saying mom fell the day after I gave her all of these snacks.)

Sometimes we will talk about her room and the things she likes in it like her chair, my grandma’s rocking chair, her TV, CD player)

Going back to the hygiene products issue, I asked the facility if they could put a note in her room along with a check sheet so that maybe she would read it and be reminded that she has brushed her teeth or used her deodorant. Not sure if it was done or if they took the time to explain it to her, but this past Wednesday, she once again realized that her hygiene products were missing. I called the head nurse hoping to head off problems, but never got a call back. 

Wednesday night I did get a call from a nurse, but it was to tell me that mom had broken into the locked box in her room that held her hygiene products. I thought, oh-well, guess I’ll be buying a new box, but then the nurse said that when she went into mom’s room and discovered the products on the floor as she started to pick them up mom started fighting with her and……bit her. Good news is that the nurse was VERY understanding and nothing bad is going to happen to mom because of this.

Since then, mom has called two or three times a day and our conversations tend to be a combination of, they took my stuff, where is Seth, Joel, Cori, Moncia and her dog and when will I see you again. I try planting the “remember when you were a nurse” seed hoping this helps her remember. Today I tried asking her how she would have handled this with one of her patients, but she can only give me the “I don’t know answer.”

I will get through all of this, writing it out tends to help me process things. I keep hoping to find something I may have overlooked here, but I find nothing. I’m appreciative of my great family that is helping me through all of this. Honestly, I’m a bit scared that this will be my future someday, and every time I can’t remember a student’s name, or walk into our pantry and forget why I walked in there I’m wonder if this is a precursor to what is to come. (Yes I know I’m busy and have a lot on my plate, so it’s just life, but….)

My last thoughts are this. 

• Currently there are 5 Million people with Alzheimers or other Memory related illnesses
• One out of Three seniors are projected to die from Alzheimers or related illnesses
• Next year we will spend about $1 Billion on Alzheimer’s research (and some want to Spend $12 Billion on a wall)
• If you are worried about immigrants coming here and “taking our jobs”, unemployment is now at 4.7% with more and more baby boomers retiring (3-4 million will retire this year) we will not have enough workers for all of the jobs in the US.
• Banning immigration is not the answer, responsible immigration is.
• I am blessed that I work for a Great Employer – The University of Cincinnati, and even more important with leadership that is compassionate and understanding to elder care issues
• I worry for those who are not like me and/or do not understand the rights that they have under FMLA (even though it is unpaid leave)

I hope that my posts may help others understand that they are not alone. And finally, that as we all are getting older can we try to make some plans so that our loved oned have an understanding of how we want to be cared for if this is us and/or how our loved ones hope to be cared for if this is them.

OK, time to get on with my day.