The Letting Go: Chapter 2-Plan & Advocate

There is so much that goes into being a caregiver. Let's focus on the financial and medical stuff today, shall we?

From the beginning with Mom I was very organized. Research, research, and more research. 

Visiting facilities. 

Reading. 

Talking to people who had experience.

All along the way I was prepared for the challenges I'd hit that I could actually control. My OCD have everything labeled and organized. I couldn't control Alz, but I could control the paper work, money and planning. Mom did well having things ready for me.

When I first decided on Autumn Glen (now Bloom Senior Living), I had 2 requirements that I needed met before I'd even consider it. 

1. Pets allowed.

2. Mom would be able to stay when the disease progressed.

About a year and a half into Mom's stay at AG they acquired an entirely new administrative staff. Now, I know why. When Mom started to initially show signs of needing extra care I found out that what I was promised was not true in any way shape or form, she would NOT be able to stay there. They would not provide any kind of Memory Care. I was floored. I was apparently told what I wanted to hear. And I asked 4 or 5 times.  I understood their position, but still, geez. Don't get me wrong, AG was fantastic. They helped take care of Bea so she could stay with Mom longer, they put up with a lot. But, for $3200 a month, they BETTER!  I was NOT prepared for this at all. Memory care is expensive!!

So there I was stuck trying to get things planned for her right when she was on the brink of needing the new plan. Great. 

I learned about Medicaid, met with a  lawyer, talked with several facilities. I was so nervous about her qualifying for Medicaid. It was all very stressful. And with a new very demanding teaching gig...I thought I was going to have a breakdown. So much was happening at once.

In the end, I never had to complete any of the things I was preparing for. But, I learned some very valuable pieces of information.

What I learned:

1. LTC Insurance- Get long term care insurance when you turn 50. SERIOUSLY! Medicare doesn't cover any custodial care, and qualifying for Medicaid is hard, as well as lots of places not accepting Medicaid vouchers for LTC or Memory Care. SO DO IT! NO JOKE. Mom was very prepared, but when she was planning for the future, LTC insurance wasn't in the mainstream like it is now. For Vets things are easier on that front. Just FYI.

2. Choosing facilities-Be an advocate for your loved one when choosing hospitals and rehab. Do not let facilities and professional caregivers push you into anything. AG wanted to send Mom to Anderson for the rehab facility. Fine. No problem. I checked it out and it had amazing reviews and records. Great. But, there HAD to be one here in Indy that was just as good, right? I should have pushed. Being in Anderson for rehab meant she was sent to the Anderson hospital. Which was crazy amazing too, but FAR. Which could have meant I didn't sleep much or make it there if there was a problem. It all turned out just fine, but it would have been better for Mom if her rehab was closer. I could have visited more often.

3. DNR-Make your wishes known for yourself. If you want to NOT be treated for things like pneumonia and other complications that arise from dementia and you want to go naturally, BE CLEAR. Have it in your living will. There is more to it then just having a DNR. Have ONE trusted person be your POA, Medical Rep, etc. The more that are involved, the more likely your wishes will NOT be honored. I was told that what I did for Mom was very rare. Many families do not honor the wishes and keep their loved one around for weeks or months. That's so sad.

4. Advocate for DNR-As the caregiver, you must advocate for said wishes of your loved one. If there is a DNR and your loved one does not want IV hydration or medical interventions...tell EVERYONE.  Tell them 3 times. You would think that everyone would read the paperwork, living will, etc. Nope. They don't. So be clear. I did not tell the rehab facility. Of course, I didn't realize we were at that point, but I should have anyway. Push to have whatever your loved one wants. Do NOT let anyone tell you what is best. And if it's in writing, then there are no worries about anyone fighting it in the medical facility. The hospital case worker and nurses are who you want on your side. Same goes with family. You do what's right. Period.

5. Be clear about how you want things handled once you kick the bucket (Mom's favorite phrase on the subject of death), put it in your Will. Cremation, burial, where, etc. Again, have ONE person responsible for this. Be clear. Mom did not have this information in her paperwork. Which shocked me. But, I am sure she never expected anyone to fight her wanting to be cremated, especially her own child. I mean it was kind of a joke, she said for YEARS that she would come back and HAUNT us if we were to try to bury her and have a funeral.  Dad wanted the same too.  There isn't even a headstone on the family plots in MC. Which I will get around to doing next year. My sister fought this. Thankfully my brother is awesome. Law requires majority signatures from children. Many funeral homes will not go forward with plans if one of the siblings is not only not signing, but expressly fighting it.

I had to get a court order.
Yep. Really.

I got very lucky having the most amazing lawyer referred to me and it all was done within 16 hours of finding out there was an issue AND for a great price. Guess who will do our estate planning?! Yep! The funeral home was amazing too, I mean above and beyond amazing. They told me this kind of thing happens constantly and it's usually from family members that been absent and not involved in caregiving as it was in my case. It's just sad. Mom asked for ONE thing, to be cremated. I just don't understand people sometimes. Ok, most of the time. 

I'm on a roll tonight, yo!

I hope that some of our struggles are helpful to you. Who knew dying would be so complicated. I have heard the horror stories from friends. But, when it's you, something clicks. You realize how seriously ridiculous it is that the government and family can complicate an already sad and stressful time. The motivations behind it all is sick. Money. Control. Whatever else, I don't know.  I should have been able to just think about Mom and how much I loved her. 

I am lucky to have gotten through it all quickly and do what Mom wanted all along the way.

Mom-In  front of diner on 8th St. where her father was the cook

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