Where have I been over the last two weeks or so? Still requesting, storting, organizing paper. Still going to banks, getting forms signed, signatures verified. And at times, I have had meltdowns.

It’s all part of grieving.

When you are faced with a loss of any kind, you are spun around and dumped into a chasm of confusion, gobsmacked by life that has just made a surprise attack on the illusion of your well-being. Sometimes well-being isn’t even that. Sometimes well-being is the thought of what is; it is an acceptance of the present.

And then there is a surprise ambush.

I left the attorney’s office two weeks ago with the five years of income tax that I had just brought in. Folders that had all the important papers that you are supposed to have, and save. What was not explained to me is that every paper I bring in, all those bags and cartons of folders, would not be returned. So I took them back, those paper remnants of the last five years of the reflections of my material life. Attorneys can be nice, but they aren’t always the nicest people. They have their eye on the prize, the next billable hour, the next client, who, like me arrives with a load of paper that has been sent by a bank or brokerage house, sorted into folders, dumped neatly and labelled into shopping bags, and left with a stranger. That person charges thousands of dollars to sort through your finances and apply for a nursing home that the government will help you pay for, because, it can be $20,000 or more a month and the “healthy partner” still has some years to go. That’s what this is about. Some kind of hope of financial protection.

“We don’t do the copying, it is just too much. I gave you a checklist, you also need the 1099’s.”

So, I left with the taxes I brought, like a private bag of worn laundry, got into the car and I just lost it. I wasn’t sure of what a 1099 was. I knew, but didn’t know. I just knew that after weeks of this process I was on overload, exhausted, under pressure, highly anxious and just plain scared for my future.

And I couldn’t stop crying. I was handling, not only the ephemeral reflection of my life in folders, but the ephemeral life of a husband. The mother had already gone. But there hasn’t been time to think about her.

When I got home, I called my friend, M., you know the one who was there for me when my mom’s apartment needed to be cleaned out. I was crying on the phone. Babbling about the paperwork, the confusing 1099s, the overwhelming dread. It’s simple:  the people who get you, are the one’s in your boat. She had just lost her mother, her mother who had the same disorder as Robert. She is caregiver to her dad. She has five adult kids living at home and a son-in-law. And a husband. And she said, did you eat? I am bringing lunch and I will help you.

That’s what she did. We ate. I breathed. The feeling of intense loneliness and confusion abated. The feeling of inadequacy left. We went through everything, she checked everything, we copied everything, sorted and stapled: taxes in one folder pocket, 1099s in the other, and it was done, in a few hours.

Weeks later I have gathered more needed info and sent out more letters that the attorney had to assist me with. I needed medallion signature verifications, powers of attorney, notarizations, and more has just come from the attorney in the mail. The big stuff, the final stuff, the “spousal refusal” to financially assist the sick spouse. That’s how we do it here in the USA. We work and face losing everything. And if you are sick and need a nursing home, you do lose everything unless you intervene legally.

In the previous series blog I mentioned that Robert thought that his friend, Alan, was visiting, that was the impetus for Alan to get on a plane and fly in from Chicago. Two of Alan’s friends, both Bobs, are in serious decline: my Bob is worse.

Alan stayed for two weeks and accompanied me for visits. We went twice. When you speak to Robert he listens, but he can’t hold a conversation. He takes in what the other person is saying and will comment if you prompt him.

“Alan is coming to see you, isn’t that nice?”

Extremely.

He might read aloud a sign or something he sees on a wall or a person’s uniform. But, the man who read book after book no longer reads and part of that I believe is that it’s too much to process and he just can’t hold the book.

We go, we visit, we try to elicit a response and it is, quite often on a higher language plane. He knows he is being asked, but if you ask too much he gets agitated. Before we left this last time, Alan took Robert’s hand. That connection, that moment, was bittersweet but surely one Robert understood.

So thank you, Gary and Dina, Laura and Bill, Richard and Claudine, dear Alan. And thanks for the calls, Ron. It takes a lot of gumption and strength to make such a visit. On one of the visits with Alan, I lost it, had another meltdown that sent the staff running. When that protective shell wears thin the innards get jostled. The staff knew, they got it. They were very kind. Grief strikes at whim.

My friend, Barbara, is also going through a difficult time. Her lovely mom was taken to the same nursing home, then had a medical issue, was sent to the hospital is now back in the nursing home on Hospice. Down the hall from Robert. So, Barbara’s situation reminds me not only of Robert’s but of my mother’s. And, because her mom is on Hospice they allowed Barbara in and up to her mother’s room. She passed Robert’s room and said hello. And because she was able to go to the areas I have never seen, she offered me a report:

Just perfect. Beautiful staff. Quiet and peaceful. Happy nurses. The place was immaculate. “They gave me some soda and even wanted to give me food.”

This is what the family of a resident needs to hear. This is what brings peace.

The next visit will be by video, with the neurologist from New York Presbyterian, whom he hasn’t seen since last fall.

Still another visit, by zoom:  here is some good news: Robert won another award from CCNY. He will be receiving the Alumni Service Award on June 10th. He was nominated for this by Dalton. See this post.

(This is a zoom ceremony but we can invite people. )

Let me thank everyone who has visited; in person, or by calls and in letters. That is a show of love.
Thank you to my friends and family who are my rocks in this sea of grief and confusion. Thank you.
Your presence in person, by phone or via a comment here keeps me going.

📌The series starts here:
Part 1: And The Band Played On … a mother’s life, a daughter’s journey

The previous post is here

The next post is here