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

So Gifted


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The Rollercoaster to Letting Go


Rollercoaster up

Sometimes there’s improvement…

No matter how long I spend on the caregiver road, I am often surprised at how I can still be surprised.

Following a hospital stay for sepsis (and a short stay in rehab), I got my mother back to the best possible care at her group home residence. Augmented by in-home physical therapy to her get stronger, she was responding well. She was gaining strength and the ability to stand with help and walk with a walker. The aides at the home expressed their pleasure with her progress. That was Friday.

Saturday morning I got the call; she was back in the hospital. Mom was bleeding from her intestines.

On arrival at the ER, my brother was already there. The ER doctor told me Mom had lost a lot of blood and might need a transfusion. I told her Mom is DNR; there would be no transfusion. She cautioned me that Mom could have a heart attack or stroke. I let her know I understood. I turned to my brother.

“You understand where I’m going with this, right?”

He indicated he did, and agreed. She wouldn’t want to extend her life. If she was a pet, I’d have taken her to the vet and ended it by now. And it would be the right thing. Unfortunately, it’s not the LEGAL thing.

Mom was admitted. Her nurse told me Mom’s blood work was abnormal. Her hemoglobin was high, but that had to be a mistake. How could anyone lose so much blood and have a high red count?

Two young interns came in to examine Mom. I gave them her history and they looked her over. They were sweet and attentive. They gave me their phone numbers.

Over the course of her stay, I learned something that really rocked me: Mom’s blood work was correct. Her red blood cell count WAS high. Apparently, she’s had a rare condition, probably for years: polycythemia vera. Her bone marrow makes too many red blood cells, which can cause clots (like the one she felt in 2006 when she had a heart attack). It’s also associated with a lot of other symptoms, like dizziness, gout, bleeding ulcers (all of which she’s had) and aphasia (speech problems), confusion, memory and perception issues. This could, indeed, be the true cause of her dementia, and may explain why her symptoms are so atypical of Alzheimer’s.

This condition apparently caused the intestinal bleeding, too. It’s her body’s way of casting off all the extra hemoglobin clogging her circulatory system. Her red blood cell count went to more normal levels as a result of her bleeding out.

For a patient with the ability to cooperate and recuperate, the doctors would have performed an endoscopy. We all agreed that submitting Mom to that misery was pointless.

I spoke my geriatric care manager and she told me that, based on her vast experience with the elderly, Mom was breaking down. This was probably a good time to consider hospice. Mom’s doctor agreed.

I also wanted to get Mom out of the hospital. She was being left unattended for long stretches. She wasn’t bathed. They kept her in the same gown, with pressure cuffs and foam booties on her legs and IVs in her arms (all of which she tried to remove). She was unable to press a button or call out for help. I had to go in everyday to check and make sure she was getting fed and hygienically tended. Every time I saw her, she was cognitively worse, hallucinating and speaking in tongues.

She was released the following Thursday, and I coordinated her hospice assessment with her arrival back at the residence. That evening, when I got there, Mom was in a new room. This double room could accommodate a hospital bed and put her closer to the hub of activities, so she could be attended to more readily. She was in bed and quite giddy. She laughed at jokes I told her. She clearly connected with her caregiver. (I had not met the night gal before). This woman expressed obvious affection for my mother and it was definitely mutual.

The hospice nurse arrived to evaluate Mom and go through the paperwork with me. She was very kind and patient. When she asked me if I understood hospice, I told her what I knew; that the goal is to provide comfort and freedom from pain. No life-extending measures would be taken.

She was impressed and probably a little relieved. Most people in this situation haven’t come around to certain realities. I was already there.

She also told me something very interesting; her father had died at the age of 47 from the condition Mom has! He was born the same year as Mom. He died on the way to the hospital 38 years ago. It’s amazing how such a rare disease can suddenly seem like an epidemic.

Now that I have accepted this course, there are things I can and can’t do for Mom. She can’t receive physical therapy any longer; that’s considered life preserving. She can go to the hospital if she breaks a bone or something of that nature. She can come off hospice and go back on any time, as needed. I can always change my mind.

Will I? Who knows? How long will this go on? Can she possibly continue this way for months or years on end? Could life be that cruel?

Rollercoaster Down

Inevitably, we have to switch from preservation to letting go.

It’s beyond good days and bad days; it’s good moments and bad moments. She’s tired all the time. She knows me, then she doesn’t. She chatters unintelligible gibberish, and then speaks a name or thought rather clearly. Up and down. High and low. Dead and alive. The rollercoaster ride continues, and I long to get off.

I’m tired. I’m sad. I’d like to talk to someone, but I can’t think of who right now.

So I write. I type out the toxins, the sadness, the pain, the knowledge, all of it. I pray for the end to her suffering. I pray for the end of the ride, so I can get on with my life. I don’t expect miracles. But part of me continues to ask.

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Herb’s Eye View

Working on a video project today, I was thinking about some family footage I hadn’t viewed in a long time. I located the tape. This particular VHS cassette holds memories my father recorded between 1985 and 1997. There’s over 2 hours of material. Some of it, I don’t think I ever watched before.

Seeing my father in middle age, hearing his voice, listening to his jokes, witnessing his engagement with his family, often from behind the lens, brought such a mix of emotions. I felt comforted, happy, sad, frustrated, sometimes a little bored. I wanted to go back to some of the places he’d shot. I felt nostalgic for his company; for our shared past, particularly once we became friends, in adulthood. He was a great listener and gave wonderful advice.

Of course, I can’t go back. The houses in the footage are now inhabited by other families. So much of my family is gone now. The places are empty without the people who mattered; the people in the footage.

My father was not a religious man. His family wasn’t, and when my parents lost their first son at 18 months of age to meningitis, I think any faith he might have had before that terrible loss was extinguished. But I did find an interesting moment on the tape that provided a window into my father’s later-life views.

The apartment my parents shared in southern Florida was on the 14th floor of their building. It faced southeast, and had an amazing view of the Atlantic Ocean and the Intracoastal Waterway. Early one Sunday morning, my father took his camera out on the terrace and shot the sun rising over the ocean. My father can be heard ruminating about what a beautiful day it would likely be, following a boat as it motored up the Intracoastal toward open water. Speaking softly, in his gruff but gentle manner, I heard him say “Roz and I get up in the morning and we feel all right, and we hear that everything up north is OK, and we say ‘Thank you God.’”

At the end of my father’s life, his misery was so profound, all he wished for was death. He told me that every time he woke up, he was disappointed. His desire, expressed so clearly, made it a little easier for us to let him go. His passing ten years ago was truly a blessing. As I’ve said before, I really lost him about a year before he died.

Being able to connect today with his happier times is such a great gift. Knowing he had a long, happy interval, where he experienced joy, gratitude and a connection to a higher power, whatever it might have been for him, makes me so grateful he captured it. And rediscovering it now is a wonderful reminder that life is meant to be enjoyed, savored and appreciated while you can. Thank you, Herby. I’m so lucky to have known you, and I’m so glad you left a record of some of those good times.

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7 Habits of Doomed Caregivers

For my caregiving friends, with love and hope you’ll take better care of YOU!

Light of Gray

Caregivers are often faced with this dilemma, and the self often loses. Caregivers are often faced with this dilemma, and the self often loses.

These days, I am reading the powerful Stephen Covey classic “The Seven Habits Of Highly Effective People.” The principles outlined make so much sense to me, I feel as if everyone else probably knows them already. But in reality, few embrace proaction and effective living. This knowledge comes, in part, from my membership in the caregiver community.

Family caregivers are some of the nicest, most sincere, hard-working and generous souls on the planet. They are also some of the least healthy, most angry and stressed out people who draw breath. I am often frustrated by the things they say and do, because they are quite clearly destroying themselves. Too many of them die young. Many more injure themselves permanently and wind up needing care (too often without the necessary resources or plans in place to enable their own…

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One of the unending aspects of the caregiver’s life is filling out forms

Having gotten into a groove with Mom’s care over the last few years, I’ve been spared from the kind of ongoing, overwhelming bureaucracy one encounters at the beginning of the caregiving journey. There are tasks to which I’ve had to attend regularly, but they’ve been manageable. Unfortunately, when major changes occur, an avalanche of paperwork awaits.

Moving Mom to a new facility took some doing. It meant exit communication, entrance paperwork, establishing relationships with new staff, doctors and providers, verifying insurance coverage, setting up evaluations and ensuring everyone was doing their job. I do not like to micromanage, but sadly, oversight must be implemented if you want to get things done; the current business climate puts little emphasis on customer service or quality control, so caveat emptor (trust no one).

Mom’s care is complicated by the fact that she is highly vulnerable to infections and is also fairly inarticulate. UTIs (and recently, sepsis) have weakened her and have had a huge impact on her cognition, communication and physical abilities. I have been trying to get her the personal care she needs as well as physical therapy. Rehab facilities only go so far. When a patient can’t speak for themselves (as is the case with my mother), they tend to get lost in the shuffle. Consequently, I sought alternatives.

And I have needed to involve Mom’s health insurance company. I have her in managed Medicare, so there are a lot of compromises: they cover a lot more than traditional Medicare, as long as the providers are in their network.

Add to that the requirements of my life: I have a full time position with a financial services company (not to mention my husband, a cat with diabetes, clients from my graphic arts/video business, and a rock band). I have been trying to work while managing Mom’s needs, but I finally decided to take Family Leave in order to be able to focus on Mom’s care. I also needed to apply for Family Leave benefits with the state (my company does not pay for time off). So that means paperwork to my company’s administration, Human Resources and the State of NJ.

Is anyone else cognizant of the irony of having to take time off in order to apply for time off?

So here I am, organizing, making my lists, aggregating forms, trying to make sure I’m getting them filled out properly and following up with Mom’s doctors to make sure they fill out the medical certifications for all the parties involved (which is NOT easy; just getting a return phone call for a medical emergency is tough enough; administrative stuff for me? Oh, sure, right. Take a number).

I will say I am grateful to my employers for encouraging me to take the time and providing the resources to document the need. But I will be happy when I can look back at this chapter in the printed ledger of my life with amusement and gratitude that I got through it with my wits and sense of humor intact. Until then, print, sign, fax, mail, call, shred, repeat.

Posted in aging, caregiving, dementia, Family, long term care, medical insurance, physical therapy, planning | 4 Comments

The Gray Line

Recovering from sepsis, Mom toes the gray line.

Recovering from sepsis, Mom toes the gray line.

Mom seemed to be settling nicely into her new home. I was glad she found a boyfriend (and as per her recent pattern, soon dumped him for another). Then her falls started.

The first one yielded a bruised hip. X-rays at the local hospital revealed no fracture. A week later, Mom had scuffle with a caregiver and fell. She complained of soreness, so she was sent to the hospital again. This time, her blood work showed a very high white count. She had moved from the familiar realm of urinary tract infections to a new, far more dangerous one: sepsis.

Mom had an infection in her blood stream. This apparently evolved from an unchecked UTI. She needed IV antibiotics. Unfortunately, in her condition, she tends to pull out her IVs, leaving nasty tears in her skin. She had to be restrained.

The infection was identified and could be treated with oral antibiotics, so she could be freed from IVs and restraints.

During this hospitalization, I thought Mom was going to die. She looked terrible. She was mostly unconscious. Her first day, she ate with assistance, with her eyes closed the whole time.

The next day, after a course of IV antibiotics, I found her sitting up in a recliner, alert and watching TV. She chatted with me a bit. She was off her psych meds and was a little clearer than usual. Next visit, she was passed out again.

After about a week, the infection was under control, and Mom’s doctor felt she could be transferred to a rehabilitation facility for reconditioning. I worked with the social workers at the hospital to find a suitable facility.

Mom was transferred, but she needed clothes. All she had was the clothes on her back from when she had been admitted to the hospital, where supplied gowns were all she needed. In rehab, she would need clothing.

The facility called my brother first (I suspect his mother in law had been in the same facility at some point and had his number on file) and told him about Mom’s need. He told them to reach out to me for decisions, but he texted me to ask if I wanted him to handle the clothing request. I gratefully accepted the offer. He bought her new blouses, sweatpants, socks and a bra and sent them by UPS overnight. She would have them Thursday morning.

Meanwhile, that Wednesday, the facility called me about paperwork, and I went down, bringing sneakers for Mom. I filled out the paperwork and went upstairs to see her.

She was sitting in a wheelchair in the day room. She was on oxygen. She didn’t seem to know me. She was pretty out of it. I didn’t stay long.

I returned that Saturday with my husband. Once again, she was in the day room wearing the same clothes. She was still pretty out of it, but she did interact with us. I asked about the clothing my brother had sent. No one knew anything.

I spent a good deal of time trying to track down my mother’s lost items, but on a weekend, it’s an uphill battle. I went to Mom’s home and picked up some things from her room and ran them back to the rehab place. I inventoried the items with the staff and went back to check on Mom, who was still in the day room. Did she remember that we had just been there? Do you remember seeing Bobby?

“Yeah, he was sitting right next to me.”

Okay, she registered something.

On Monday, I worked the phones until I got a hold of someone who could help and I got confirmation that her clothes were found and she would be wearing them.

Tuesday, I returned to find Mom slumped in her wheelchair, completely unresponsive. She would not open her eyes. She wouldn’t react. I went to the nurses.

Mom’s blood work was bad. They gave me all the specifics and told me what they intended to do. I called Mom’s doctor. I was alarmed. Had she been released from the hospital too soon?

They told me it was my decision. Mom is DNR: Do Not Resuscitate. Do Not Intubate. Do Not Hospitalize. I could change my mind any time, but sending her to the hospital would mean aggressive, life-extending treatment.

Wow. This was a first. This was not black or white. I hit the gray line. I was prepared to let Mom die if it was clearly her time. But here I was, unsure. Was she getting appropriate treatment? Or was she being mistreated in some significant way that was accelerating her decline? I was working with a new team and I sincerely didn’t know what to do.

I called her doctor’s office again. I was told he would call me back. But he didn’t. So I called his office in the morning and got his recorded message, which gave his cell number. I sent him a text asking him to please call me. And he did.

The doctor told me Mom had been put back on her psych meds and they were probably the cause of her extreme fatigue. He would take her off them.

When I visited later that day, a physical therapist was adjusting Mom’s chair and chatting with her. Mom was alert. She didn’t know me until I told her who I was and she smiled broadly and kissed me.

The therapist told me she was able to stand up and they had played balloon volley ball. They demonstrated. She remarked that Mom’s range of motion in her arms was good. She also remarked that Mom had a good sense of humor.

Clearly, Mom was a whole lot better.

Today, I met with Mom’s team to discuss her plan of care and to review what the goals were. We’re trying to get her mobile enough to go back to the home, where she can walk with a walker, get around and be a little more steady on her feet. I wasn’t expecting miracles, just a little better quality of life.

Mom’s speech therapist told me she enjoyed Mom’s sense of humor. Showing Mom a pen, she had asked if Mom knew what the object was.

“A fountain pen.”

Did she know what it was used for?

Mom made a remark that the therapist did not wish to repeat, but she blushingly indicated that Mom knew exactly what she was saying and let the therapist know that if she didn’t know what to do with the pen, Mom was willing to show her where to put it.

So the line becomes a lighter gray for now, as we work to restore Mom to some kind of condition that allows her to resume the life she had before sepsis, with a little of the old, funny Mom thrown in for good measure.

Posted in aging, assisted living, caregiving, delusions, dementia, Family, life changes, long term care, physical therapy, rehabilitation services | 5 Comments