Explaining

Lately, I’ve been asked about how to reason with a demented person, and it makes me laugh. Maybe I’m a little perverse, but if you know me, or have read any of my stuff, you know that humor is my favorite defense mechanism.

Having lived with this knowledge of the evils of dementia for several years now, and because I UNDERSTAND THIS so very well, I take for granted that EVERYONE knows it already. I need to be reminded that there are millions of people who haven’t gotten the memo yet. Thank you for reminding me. This mission is important and there’s a lot of educating to do.

So here goes: YOU CANNOT REASON WITH A DEMENTED PERSON. Saying anything to someone who is in cognitive decline has extremely limited value. Why?

  1. Demented people can’t learn anymore, so they can’t retain what you tell them.
  2. They are often HALLUCINATING. They see all kinds of things that we cannot. And what they see in their minds is just as real, if not more so, than anything you could possibly tell, show, or be to them.
  3. Their ability to “reason,” apply “logic” or comprehend language is diminishing, because their condition is damaging their brains.
  4. The information they are receiving from inside and outside is terrifying, especially in the beginning, when they are still high-functioning. They are finding that they can no longer trust what they perceive, and that they are losing the ability to be the person they have valued being. They often suspect that someone else is doing things to trick them. They become paranoid, agitated, frustrated, angry and unpleasant. I dare say you would, too.
  5. They do a good job of acting as if they understand what you’re saying, especially in the early stages. They’re usually good at “covering.” Because those of us who love them are in denial that they are as sick as they are, and we want to BELIEVE they comprehend, the ruse is successful for a while.

The great author, Robert Heinlein, famously said: “Never try to teach a pig to sing; it wastes your time and it annoys the pig.” And so it is with the demented. Don’t waste your valuable time annoying people (including yourself) and getting nowhere. Spend the time learning more about what they’re going through (reading this will help) and sharing affectionate moments with them instead. They don’t need to be corrected or convinced. They do need care and love.

And unlike pigs, demented people often can sing (and may surprise you by recalling lyrics), and will find enjoyment in connecting with music from their past. The emotional centers of their brains survive longer than the other parts, so connect there. You and your loved one will both feel inexplicably better as a result.

Advertisements
Posted in aging, caregiving, delusions, dementia, Family, life changes, psychosis | Leave a comment

“Dementia Sucks” on the Whole Care Network

Read here about my wonderful interview with caregiver advocate and host of Healing Ties, Chris MacClellan.

Posted in aging, book, caregiving, death, dementia, dying, Family, podcast | Leave a comment

It’s ALIVE!

“Dementia Sucks: A Caregiver’s Journey – With Lessons Learned” is now on sale.

You can buy it on Amazon: http://amzn.to/2Bik4YW

And Barnes and Noble: https://www.barnesandnoble.com/w/dementia-sucks-tracey-s-lawrence/1127922824

Or just saunter into your favorite independent bookstore and ask for a copy. Really. That will help more than just about anything else you can do. Why? Because then they will have to buy it in order to sell it to you. And they’ll probably buy more than one. And then they’ll display “Dementia Sucks” where browsers can see it. And browsers will see the book and want one for their own. And they really need to know what’s in this book.

So thank you for visiting, thank you for caring and if there’s anything you want to know about dementia, feel free to ask. If I don’t know the answer, I’ll point you to someone who does. That’s the way I roll.

Posted in aging, book, dementia, Family | 2 Comments

It’s almost here!

On May 15th, 2018, “Dementia Sucks” will be available. The book that came from this blog will be a real paperback book (and also available as a Kindle edition). The wait is nearly over. Order yours now!

Posted in book, caregiving, dementia, Family, life changes, long term care, long term care insurance, planning | Leave a comment

On May 15th, the World Will Know!

2018BookCoverCompPromo

I told you I was going to do it. I took the posts from this humble blog, weeded out the ones that might hurt the living (hey, I’ve got scruples) and created a manuscript. One month after committing to getting it published, I got a deal. “Dementia Sucks: A Caregiver’s Journey with Lessons Learned” will be published by Post Hill Press on May 15th, 2018. And you can pre-order your very own copy, right now, on Amazon or Barnes & Noble. Better yet, march into your local bookstore and tell them you want to order it. (Don’t you love bookstores? I know do!) That would help me a whole lot and the world a lot more. Because if you know anything about dementia, it really DOES suck. And if people knew more about it, fewer caregivers would die before their loved ones, and more of them would emerge intact. Thanks for your support!

Special Offer: for the first 50 people who send me proof of purchase of “Dementia Sucks”, I will send you a beautiful and useful Dementia Sucks fan!IMG_7487Dementia Sucks_cover_v3

Where the fan idea came from!

Posted in aging, book, caregiving, death, delusions, dementia, Family, life changes | Leave a comment

If you like this blog…

Calm Mom

Mom’s a morning person these days

…then you’ll love my new book, “Dementia Sucks: A Caregiver’s Journey with Lessons Learned.” 

The original posts from this blog chronicled my journey with my mother, Rosalind, as she suffered five years of cognitive decline. A year after she died in April 2015, I revisited what I’d written and thought, hmm, this could be a book. My publisher agreed.

As terrible as her situation was, a whole lot of hilarious and unexpected stuff happened. It was challenging, infuriating and heartbreaking, but in retrospect, it’s a good story. And it’s important for people to know, because millions of people are going to suffer before a cure is found, and we have to be ready.

Dementia really, truly does suck. But you can survive it. And I can show you how.

“Dementia Sucks” will be published by Post Hill Press in May 2018. Comment below and I’ll let you know when you can order your copy.

And by all means, “like” the Dementia Sucks Facebook page.

Posted in aging, book, caregiving, dementia | Leave a comment

End of the Ride

Herb and Roz circa 1983

Herb and Roz circa 1983; together again at last

My phone rang as I was exercising at home on the last day of March. The hospice nurse attending to Mom called to suggest I get down there soon. “She’s transitioning.” This is hospice-speak for “her body is breaking down and she will die soon.” Mom had not been eating, and she was having trouble breathing. She was given oxygen to make her more comfortable and was in bed, resting. She was in no immediate danger, but she was getting closer to the finish line.

I had an appointment and kept it. I texted my brother, who was in California. I urged him not to rush home. It was simply an update.

Upon arrival at Mom’s home, the caregivers told me Mom had become alert before the hospice nurse left, drank a big glass of orange juice and ate a big bowl of applesauce. Her hands had been turning blue, but the oxygen helped perk and pink her up. I went into her room. I tried to wake her, gently, but to no avail. She looked horrible. The resemblance between the body in the bed and the mother I had known was almost non-existent.

I went home and thought, April is going to be the month.

Next morning I called to see how Mom was doing. “Oh, she’s fine! She’s getting dressed and ready for breakfast. She’s joking around. She’s back to normal.” This was no April Fool’s joke, but it sure felt like one. Rallyin’ Rozzy. The rollercoaster ride continues, and it’s making me nauseous.

I visited her the following week. Once again, she was in bed in the afternoon. No oxygen this time. She was just out of it. I looked under the sheets at her body. She had lost a great deal of weight. Her left leg was a stick. Her right leg looked more “normal.” I rubbed her shoulders and arms. After a while, her eyes fluttered open and she looked at me. I said “Hi” and she said “Hi” back; then she closed her eyes.

On the morning of Tuesday April 14th, I texted my brother and sister in law to wish them a Happy Anniversary. 31 years together. They had married on our parents’ anniversary. Mom and Dad had been married 33 years on their wedding day.

I had a lunch appointment, and as we were winding up our meeting, my phone rang. Through the din at the restaurant, the hospice nurse told me Mom was “active” and she didn’t expect to see her again. My first thought was, oh no, Mom’s getting violent again. But “active” is hospice-speak for “actively transitioning to death.” Mom’s first big dose of morphine had been administered and she was not expected to live through the night.

All at once it struck me. It’s April 14th, her wedding anniversary. Herby is finally coming for her. She’s going home.

I welled up and apologized to my colleague. Of course she understood and suggested I call my husband to drive me to see Mom. My first impulse is always “Oh, I’ve got this. I’m fine.” But then I thought, she’s right. I called Bob and told him what was happening and that I needed him to drive. Of course he understood.

Then I called my brother. Texting wasn’t appropriate for this message. I wanted to make sure he fully grasped the situation. He did, and said he’d get there soon.

I drove home to meet Bob and drop off some things. Then we headed to Montclair.

On arrival, I saw my brother’s car parked in front. The staff greeted me and told me my brother was with Mom, and that the hospice nurse had just left.

My brother stood at the bed, looking at the unconscious remains of our dying mother. Tears rolled down his face as he reported what the nurse had told him. In a whisper, he thanked me for taking care of all this.

We sat on the other bed in the room and started looking through Mom’s photo albums. I could have taken them home long ago. She hadn’t been able to look at them for months. But now they gave us a way to connect with the person Mom had been.

One album contained photos of my parents at the start of their “renaissance.” In 1984, the year my brother married, Dad had undergone coronary bypass surgery. He was given a great second chance, and he took it. He had an epiphany while he was recovering from the procedure: he hadn’t been the best husband up to that point, and he realized he loved his wife and wanted to make amends to her. So he went into semi-retirement, started taking trips with Mom and gearing up for a nice retirement. He bought a water-front house at the Jersey Shore. He got into boating. They sold the house in Brooklyn and bought their apartment in Florida.

Their first holiday together in 1984 was a cruise. We had seen them off from the piers on the west side of New York. At that time, Mom and Dad were in their fifties, the age we’re at now. In the pictures, Mom looked stunning. My brother snapped some of the images with his phone and posted them on Facebook. He was starting to have some epiphanies of his own.

The room was warm and one of the residents kept popping in and saying distracting things, so we’d closed the door, making it stuffier. Mom occasionally made little groaning or gurgling sounds. She seemed peaceful, though, and her breathing was steady.

I’ll admit this, because it may help others going through this process: “A watched Mom never dies.” I know that sounds horrible, but I felt that she wasn’t quite ready to go, and it wasn’t essential for us to witness her final breath.

I suggested that we didn’t have any obligation to stay; it was our choice. I further suggested my brother go to his wife and have a nice dinner together to celebrate their anniversary. He nodded and we all headed out.

Bob and I headed back toward home. He suggested the fancy Italian place in our town, but I thought China Paradise, a classic Chinese restaurant in Wayne, was a better choice. Mom loved Chinese and she’d enjoyed that place with us.

We had a nice meal and toasted Mom. When the bill came with the fortune cookies, I cracked mine open to read: “Leave your old troubles behind tonight.”

When we got home, I looked for something entertaining to distract me. We have a great music channel, and I turned it on. I knew I’d get the call before the night was over.

Sure enough, at 9 pm, I got the call. It was over. Hospice would be called to declare the time of death. The people at Mount Sinai would be called to pick up the body.

Around the time I made Mom’s funeral arrangements last summer, I also investigated dementia research. I wanted some good to come out of my mother’s misery, and I was able to enroll her in a study at Mount Sinai. At the appointed time, they would pick up Mom’s body, remove her brain for analysis and then deliver her body to the funeral home.

I had given the number to the head nurse at Mom’s home, and soon after the call from the home, I received another call from Mount Sinai offering condolences, gratitude and a request that I fax a signed release so they could take the body. I also contacted the funeral home to facilitate the transfer of the body. The funeral director I dealt with was very nice.

I slept pretty well, all things considered. In the morning, I rose to start telling the sad news. I sent some emails, posted on Facebook, and checked some things. Then I looked at Mom’s checking account. The last of the money from her long term care policy had been deposited. I couldn’t help but grin. Dad wasn’t going to let her go until she used every last cent of benefit money from that policy. Okay Rozzy, you put it to those bastards! Now you can go to the other side. Get in the limo!

There will be no funeral. There aren’t many people who would come. Being the last of four children, the only family remaining are my brother and his clan, Bob and me and our friends. So we’ll have a few parties to remember the good times with Roz and Herb, because, truly, all the best times involved them together, as a unit.

I’ll look at the pictures, scrub through the videos. I’ll weave together a tribute.

And I’ll finally take a vacation, knowing that I don’t have to watch for the dreaded phone call. I already got it. It’s done.

Mom’s body will be cremated and I’ll have the remains in five days or so. Next year, we’ll bring the ashes to Barnegat Bay, where Roz and Herb began their retirement and she had such great times. We’ll toast the two of them, reunited with the many family members on the other side, and ponder the change of the guard. We’ll laugh and we’ll grieve.

Mostly, I feel pretty good. I am sad, but I’m relieved. I’m tired, but optimistic. I’m in the middle of my own journey, certainly closer to the end than the beginning, but I’ve got a pretty good handle on what’s next. I look forward to a peaceful interval, followed by eventual turmoil with a heaping side of fun and gratification.

It sure is good to be off the rollercoaster. For now.

Posted in aging, caregiving, death, dementia, dying, Family, hospice, life changes, long term care, long term care insurance, planning, research, retirement, Romance | Tagged | 7 Comments