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.

Advertisements
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 | 5 Comments

I’m Worried About Mom, February 6, 2014 7pm at Ridgewood Public Library

Light of Gray

“I’m Worried About Mom; Turning Worry into Meaningful Action”

Speaker:
Tracey Lawrence, elder care expert

No one likes to think about sad, difficult topics, especially when they have to do with people we love. But change is inevitable, and planning can make life easier for everyone. The key is starting a family conversation when everyone in the family is able to participate. Waiting until family members begin showing signs of decline is not the best strategy.

Covered in this seminar will be ideas for getting families organized and able to discuss the difficult subjects; who needs to be involved? What questions do you need to address? What requires immediate action and what can wait? Do we need to use professional services? We will look at care choices, insurance options and documentation every family should have in place.

Ridgewood Public Library is located at 125 N. Maple Ave, Ridgewood, NJ.

For…

View original post 6 more words

Posted in Uncategorized | Leave a comment

Drowning in STUFF

As my mother’s mental state continues to deteriorate, I try to hold on to my own sanity by making some sense of what’s happening to her. She is 81 years old, and after having tried to live on her own in southeastern Florida following the death of my father in July 2004, it became clear that she was not able to function well. Money kept disappearing and turning up in places like the hamper. She claimed there was no heat in her apartment when it got cold, but I suspect now that she simply didn’t know how to turn it on.

In February of 2010, I brought Mom north to try living in a senior apartment 20 minutes from our home in Ringwood, NJ. She hated it and thought it was too expensive. I took her to look at another place, and she then admitted that she would prefer to come live with my husband, Bob and me.

This had been the first option I had given her, and we had tried it in 2009 for 4 months as she recuperated from the removal of her gall bladder. She didn’t want to “intrude” on us, so once she felt well enough, she returned to Florida with the assistance of an aide four hours a day, five days a week. She tried to make a go of it, but the caregiver found a full-time job and Mom didn’t want to try another one. She tried to resume completely independent living, but it just wasn’t working.

As I had told her the first time around, of all the lousy options available, living with us was the option that sucked the least. In April of 2010, Mom moved into our guest bedroom, and we’ve been acclimating, making changes to the house, seeking legal estate advice, providing her with a space heater to keep her room a balmy 90 degrees and getting her medical needs met.

We still have to deal with her apartment. Fortunately, Dad left her in good shape financially and we aren’t pressured to sell her place immediately. It’s a co-op with a great view and fairly low maintenance costs. It is filled with artwork, brick-a-brack, clothes, and remnants of the once-happy consumer frenzy my parents enjoyed together. I’ve brought Mom down to deal with some of it. Sort, identify what might have value up north, throw out what’s expired, useless or shot, give away what might have value for others, and leave what makes the apartment functional for us when we need it.

My folks bought this two bedroom, two bath split on the 14th floor overlooking the Intracoastal and Atlantic Ocean beyond it in 1987 for $85K. At the height of the market ten years ago, similar apartments sold for $350K. Then the crash of 2008 sent the values into the toilet. Comparable apartments now go for about $150K. I think we’ll sit for a while, but we still have to start dealing with all this STUFF.

Mom did give away most of Dad’s clothes and personal effects within the first year after his passing. But there is still so much accumulated crap in the walk-in closets, it’s a little overwhelming. And Mom needs to go through her clothes. She needs warmer items to wear up north as winter approaches. She’s lost considerable weight in the last year or so – the gall bladder surgery forced her to curtail the amount of food she ate, and later, she experienced toxicity from all her medications. I got her medications titrated and she’s on less than half the pills she was before. Losing weight addressed many of the conditions from which she had been suffering, so she needs a lot less. But we need to figure what fits her and what doesn’t.

The big problem she’s having is that she constantly misplaces things. I have managed to identify why this happens: 1) her eyesight is getting worse, 2) she spaces out and compulsively puts things together that don’t really belong together, 3) she doesn’t like to throw things away, 4) she has WAY too much STUFF. Having dealt with my father’s dementia seven years ago, I’ve educated myself about the various forms, and I’m confident Mom doesn’t have Alzheimer’s. Day to day, she knows what’s going on and remembers important events. She forgets names. And she misplaces important items and gets agitated when she can’t find things. She’s easily distracted. However, she’s not paranoid; she knows it’s her and she does trust me. So it could be worse.

Meanwhile, I’m trying to keep her on track, focused on the tasks at hand, allowing me to toss the truly useless crap and avoiding my suggestion that she try on clothes so we can figure out what items should go north and what should get donated or chucked. It ain’t easy, but as my dear father once opined, no one said it was going to be.

Posted in aging, caregiving, life changes | Leave a comment