Crap Show – Alzheimer’s in the Family

This has been an interesting week. It was good to be in Myrtle Beach, my home. Mom seemed to enjoy being there, even though she talked about staying in her home alone.

We got back to the beach on the 24th. Ilona’s birthday was on the 25th and we celebrated at PF Chang’s on Sunday the 27th. Ilona, James, Ray, mom and I had a good celebration and mom tried to follow the conversation. Over all it went okay getting her out of the house. Ilona kept mom for a couple of days so that I could get a break and have a semblance of a normal life. I am eternally grateful for her support and for Ray who has helped me so much. Don’t take good friends for granted. They are priceless.

Ray came by for a visit on Monday and mom became very animated around him. She told him that she was going to sell her home in Newton Grove and move in with me. Wow! That was a shocker. The problem with this is that the deed is in my and my children’s name since 2008. It was a little progress in the right direction though.

Mom was still not talking to me for whatever reason. Sometimes that goes on for a long periods of time. Intellectually I know it’s the Alzheimer’s but it is still humanly very hard.

We came back to her house on Thursday because we had an appointment with Social Security for SSI assistance today. Well, that certainly didn’t turn out well. I had to take mom because they don’t accept a durable power of attorney. It makes no sense that they will let someone diagnosed with dementia sign any darn legal document, but they will.

The following is extremely personal but I’m blogging in an effort to help folks through this process. The system will not help you and you must proceed with help of friends who have navigated the system before you and limited information that will be shared by agencies.

SSI requires that you apply for any assistance that you qualify for before they will help you. Mom never applied for social security spousal support from her husband. SSI today asked about her marriages and said we had to apply for spousal assistance. The agent looked that up and said mom didn’t qualify for SSI.

She turned us over to the unit supervisor to apply for spousal assistance. Mom’s social security will increase by a significant amount and it’s retroactive for 6 months. She was eligible for this many years ago and this would have made her life so much easier. I had encouraged her to do this but she just wouldn’t. While all this sounds great, mom will receive about $240 too much to qualify for assisted living funds.

This means that in order for her to go to assisted living we must pay out of pocket for her care, minus her social security. This is extremely expensive. I’m at the end of my abilities and I’m not able to keep her safe. It’s compounded by the fact that she is extremely angry with me most of the time. It’s freaking hard.

Today, when the supervisor at social security and I were talking about options and how to proceed, mom became very agitated and started threatening me. I finally said, “Mom, quit threatening me.” That was around 4:30 and it’s now 11pm and she still isn’t speaking.

The staff at the office knew she was a dementia patient but they looked at me with what I interpreted as pity. The staff was excellent, they just can’t help us.

We are going back to the beach tomorrow as a dear friend is getting married. Tom’s earthly assistant and a marvelous couple. Next week I will meet with her caseworker again. It doesn’t look promising but I’ll try.

Plan B is to see an elder care attorney and possibly sell the family home and use the money to pay for mom’s care. That will upset her but it looks like the only option.

This process is not acceptable. When I navigate through this, I have a calling to be an advocate to help people through a process that is cumbersome and unfriendly. I truly believe it is set up that way to make people walk away. This country’s health system doesn’t care about the poor or elderly. I’m seeing it every day.

And, there will be more later.