Category Archives: Age Related Illnesses

Kids Shocked When 3 Million Dollar Inheritance Goes to Charity

Today’s post is Part 4 from Chapter 5, Helen’s story about her mother’s last days in my book, Final Years Stories of Parent Care, Loss and Lives ChangedPart 1 of my excerpt from Chapter 5, can be read at this link on my blog: Mom’s Final Act Hurts Those Left BehindPart 2 can be read at this link: Mom’s Final Act Hurts Those Left Behind (Part 2), and Part 3 here: Nothing Was Ever Enough.

Mom Begins 24-Hour Care

1203“One day—oh, this was when she almost died.  I don’t know what happened.  I think she was dehydrated, and she literally couldn’t get out of bed.  Her neighbor had a key to her house and went and found her and called 911.

They came and started an IV and rushed her to the hospital.  Her blood pressure was something like 60 over 30.  She had a fever of 103.  She was almost dead.  She was septic.  And I got a call that morning and jumped on a plane.  I got there when she was still in the emergency room, and the doctor came out and said, ‘I’m not sure your mom is going to make it.  She’s very, very sick.’  I was hysterical.  I was afraid she was going to die in the ICU, which is so undignified with all those wires and tubes.  You know all about that, being a nurse.”

I do.

“But I called all my siblings … At 6 p.m. she was in ICU, and I was sitting beside her bed.  I said, ‘Mom, I have to leave and go to the airport and get my sister now.’  And she said, ‘I think I’d like some oatmeal.’  I said to myself, not to her, ‘my sister is going to be furious when I pick her up and tell her mom is asking for oatmeal,’—because we really thought she was going to die!  It just struck me as really funny, at the time.

But she got better.  That’s when we hired the 24-hour caretakers.  Mom wanted to stay independent in her home.  But after this hospitalization that followed a second type of chemotherapy where she lost her hair and got so sick, Mom said, ‘no more chemotherapy.’  That’s when she agreed to the plan my sister and I came up with for 24-hour care and hospice.”

“She had 24-hour care the last 3 months of her life, beginning after this episode when she was rushed to the ER and almost died.  After that she agreed to stop chemo and hire live-in help.  Once she went on hospice—she had to stop chemo in order to qualify for hospice care.

What was your experience like with your mother’s physicians and care providers?

“Mom had Kaiser health care.  She could e-mail her doctor to communicate, but I couldn’t.  I had to wait until I got back home to hear back from phone messages that I left with her doctors.  Mom loved her gastroenterologist.  He came to the hospital to see her, held her hand and said, ‘I’m sorry, there are no places left in you to put in any more stents.’  He was regretful and caring.”

Last Moments With Her Mom

1210Can you go ahead and talk about what happened on the days leading up to her death, and your final visit?  I know you all went out there before she died.

“One of my brothers was planning to be there over Christmas, so that she wouldn’t be alone.  I think he got there the 20th or 21st.  I’m not sure.  But he called us all on the 23rd, and he said, ‘Mom’s not eating anymore.’

All along, even though she was losing weight and getting weaker, she had this great appetite.  She was a foodie.  She would tell us exactly what she wanted to eat for every meal.  It killed her when she couldn’t be in the kitchen supervising us.  It just killed her.  And we were so relieved once she was not standing there telling us what to do! ‘Did you put salt in my oatmeal?’  She would say.  Really

So Mike called us on the 23rd, and said, ‘I think you all need to come.  I think this is it.’  We just had had so many false alarms.  But my sister and I flew out Christmas Day.  I think it was a Sunday.  She had stopped getting out of bed as well.  Up until when my brother called us, she was getting up out of her bed and getting dressed every day.  Not by herself—she needed assistance.  And she refused to get back in her bed before 10 o’clock at night.  She’d sleep on the couch.  She hung out in her study.  So it was just the last five or six days of her life where she quit getting out of bed.  She didn’t have the strength.  And she quit eating, so we figured he was probably right.

We all went.  We had cousins in the area, and that day we made a nice dinner for Christmas.  Mom didn’t want to come to sit at the table with us, but she did agree to get wheeled out in her wheelchair for some apple pie.  I still remember, I brought her—I put a piece of apple pie in front of her and she looked at me, and said, ‘Where’s the ice cream?’

I said, ‘Seriously, Mom.’

I got the ice cream.  And she ate about two bites of it and wanted to go right back to bed.  She was not conversing with us.  She was really not herself.  She went back to bed.  That was the 25th.  My other brother, Jim, did not get there until the evening of the 26th, Monday.  He’s the one who is just a year older than me.   And she’d been sort of in and out of consciousness all day.  I ended up having to flush her drain; she had a biliary drain, because the tumor was causing blockage, and it wasn’t draining well.  The visiting nurse wanted us to go have it changed.  We said, ‘she’s not strong enough to make a trip to the hospital.  That’s insane.’  She said, ‘well then you’re going to have to flush it yourself because I can’t come out three times a day.’  So I had to flush her drain a couple times that day.”

Was it hard to play a nursing role?

“I didn’t mind that much.  To the very end, she refused to use diapers.  She would not do it.  We had a little bedside commode.   On the 26th, I have a vivid memory of helping her up to sit on this bedside commode.   We also had paid help 24 hours a day.  She had somebody taking care of her personal needs.  So she and I got mom up on the commode, and she—she couldn’t even sit on it.  She was falling off, and I was holding her up.  It was just miserable.  I remember the helper looked at me and said, ‘We are not getting her up again.  This is ridiculous.’

I do not think she ever—we got diapers and put them on her, but I don’t think there was ever—I don’t think she ever went to the bathroom in a diaper.  She just was too proud, you know.

Anyway, the evening of the 26th, my brother Jim showed up.  We warned him on the way home from the airport, ‘she looks really bad.’

He walked in and tapped her, and he said, ‘mom, I’m here.’  She opened her eyes and reached up.  She had the biggest smile on her face—I’ll never forget it—she was so happy to see him.  It was very touching.  That was maybe 8 or 9 p.m. on the 26th.

My mom didn’t have room for all of us.  My sister and I would stay all day and then go sleep at my dad’s and come back first thing in the morning.  That day had been pretty emotional.  I just had a feeling it was going to be any minute. I had my iPhone and was playing some beautiful Andrea Bocelli for her.  I put it on the pillow by her head real softly, and I put my cheek next to hers and I cried.  I felt super sad, and at about 10 o’clock that night, my sister and I decided to go.  My brothers were both there; we were all sitting around her bed.  I said, ‘Mom, I’m going to go sleep.  I’ll be back first thing in the morning.’

And her very last words to me … Continue reading


Nothing Was Ever Enough

In today’s post I share Part 3 from Chapter 5 in my book, Final Years Stories of Parent Care, Loss and Lives ChangedPart 1 of my excerpt from Chapter 5, can be read at this link on my blog: Mom’s Final Act Hurts Those Left BehindPart 2 can be read at this link: Mom’s Final Act Hurts Those Left Behind (Part 2)

Nothing Was Ever Enough

stock-footage-old-people-and-feelings-portrait-of-worried-old-woman-with-white-hair“My mom lived with pancreatic cancer for eighteen months, which was a lot longer than any of her doctors predicted.  They said three months without chemo and six to twelve months with it.  And she lived eighteen months.  So it was—it was grueling.

When there was an emergency, I was usually the one to go.  My mom said that she liked having me there better than the other kids because I knew what to do.  My brothers seemed helpless when they went back to help her.  She told me I was the best caretaker, and it’s probably because I’m a nurse. ”

And that makes sense.

“Yeah.  And that was a nice thing to say, but nevertheless, it still wasn’t enough for her.”

How often did you go to be with her in those eighteen months?

“Twelve times.   And that was never enough.  Even that was not enough for her.  All of her friends, after she died, remarked to all of us kids how remarkable it was how we rallied around and spent so much time with her, and how we all came out a lot, but in her mind we weren’t there for her.”

Isn’t that amazing?  It sounds like the glass was half empty versus half full.

“It totally was.  Her whole life was that way.”

That had to be so difficult for you both as a younger child and as an adult.  To never have that acknowledgment, that, ‘Oh, thank you for what you did for me, thank you for coming, for being here …’

“No.  Never.  Never.  You know, I told her, ‘Mom, if I didn’t have a job and a husband, maybe I could come out and just stay with you.  But I can’t.  I’m sorry.  I cannot do it.’  I told her that a million times.  And she just never could accept it.

I was struck by how much Helen’s mom reminded me of my own mom and her inability to acknowledge my love for her, what I did for her, and to let me know she knew I loved her.

 We All Invited Mom to Move In With Us

1396“We all told her she could come live with us, every one of us did, and she refused.”

That really struck me because it sounds like you all had some difficulty with her.

“We did.  We did.”

I think it’s great that you still offered to have her come live with you.  But she wanted you there.

“Yes.  She didn’t want to leave her house.  Also, her health insurance was an issue, because she had Kaiser health insurance; so she couldn’t live in any of the towns we kids lived in because Continue reading


A Sacred But Anguishing Time

1In my book, Final Years Stories of Parent Care, Loss and Lives Changed I tell eleven stories, including my own, of those adult children caring for their aging, ailing, and dying parents. I was struck by how little we as a society talk about our feelings and experiences during this difficult time of losing our parents, or our grief process after they are gone. That is what motivated me to write Final Years. Although my cousin’s partial story below is not in my book, it shows the depth of struggle and loss of control with some of the decisions we and our parents must make … the ones we all go through as we come to grips with the process of watching our parents die, and with ourselves as new motherless and fatherless daughters and sons.

I received the following email from my cousin, Karen, on February 26, 2013 after her mother, my Aunt Helen, went on hospice care at home:

“Dawn, I am worried that mom can survive a long time without food, just drinking water. I know I can’t control it, but I don’t want that for her. I can’t conceive of withdrawing hydration, though. I keep thinking there must be a lesson in this. Then I think there isn’t, except to be here for her.  A friend told me today it is a sacred time with Mom. It’s what we all hope we can do for our loved ones. I know that, but I just don’t want her to have to go on and on like this.”

Even though it may be a sacred time, watching our parent waste away or in pain is agonizing for many. It was for me.

I received this next email response from Karen on April 8, 2013 after I checked in to see how she was doing since her mother’s passing in March:

“This weekend was hard. On Friday it was one month since Mom died. I just miss her. I had no idea until I got home how much my days revolved around her, her schedule, how she felt, even though we were four hours apart. I called her—we talked at least three to four times every day. I structured my day around when she was home, when she was gone for an appointment. If I was going anywhere at a time we might usually talk, I let her know in advance. It’s really taken me by surprise, how often I want to tell her something, how often I want to talk to her. Tom and I went to her Princeton home the weekend before last. It was very hard driving there and going into the house, knowing Mom wasn’t there. It makes me sad to think about the house being gone at some point, though we have no reason to keep it.”

Hospice care, our days revolving around our loved parent, adapting to a life without them, going through their home and possessions and then finally selling their home. It’s all part of it. How did you do with it? Are you going through this anguish now with your own parent? Know that you are not alone.



TRU Community Care for Serious Disease, End-of-Life Care, Grief

4275We have an amazing resource in our community that I want you all to know about. It is called TRU Community Care. Their mission is “to work to ensure that everyone in our community can live with advanced illness as comfortably, confidently, and fully as possible.”

Last March Hospice Care of  Boulder and Broomfield Counties changed its’ name to TRU Community Care because they felt Hospice Care of  Boulder and Broomfield Counties no longer fully described their organization. The name TRU is an acronym for Trusted, Responsive, Unparalleled, adjectives often used to describe them. Through the years they responded to changes in community needs and have responded with programs that extend beyond hospice. In addition, their services now reach outside Boulder and Broomfield Counties.They do continue to provide hospice care and offer grief support to anyone who has suffered a loss.

For example, if you or a loved one are living with an advanced illness but are not ready for hospice care, Continue reading


CaregivingCafe Offers Tips and Resources for Caregiver Journey

Are you taking care of a disabled, aged or chronically ill loved one, either in your own town or long-distance?  Being a caregiver can be a stressful time in life. I remember it well with both of my parents, especially for my father whose pulmonary fibrosis left him chronically ill for several years.

CaregivingCafe Logo

I certainly was far from alone.  During the time her father was ill, the founder of Caregiving Cafe spent hours searching for services for her parents including housecleaning, transportation, medical home care, and meal services; and then emailing these lists to her family. I remember those ongoing searches well, and wish I had one place to go with a directory Continue reading


Daughter of an Alzheimer’s Patient Offers Advice

More than 5 million Americans are living with Alzheimer’s today. According to the Alzheimer’s Association, “Alzheimer’s is a type of dementia that causes problems with memory, thinking and behavior. Symptoms usually develop slowly and get worse over time, becoming severe enough to interfere with daily tasks.”

A friend of mine has a mother with Alzheimer’s disease living in England.  She shared her emotional difficulty with me regarding the loss she experienced even though her mother is still alive.  Coping with a parent with Alzheimer’s is Continue reading


Pulmonary Fibrosis and My Dad

Do you know what Pulmonary Fibrosis is? Do you have an aging parent or other loved one suffering from it? According to the Pulmonary Fibrosis Foundation, Pulmonary Fibrosis (PF) is a condition in which “the lung tissue becomes thickened, stiff, and scarred.” This is what happened to my father. The medical term for this scar tissue is fibrosis. Watching Dad’s quality of life change from this horrible disease was a heartbreak like I had not experienced before.

Oxygen is delivered to the entire body through the lungs. When someone like my father has PF, their lung tissue becomes scarred and thickens. There is therefore less healthy lung tissue to transfer oxygen into the blood to carry it throughout the body. As a result, the organs, including the heart and brain do not get the oxygen they need to function properly.  In Dad’s case he developed a debilitating anxiety as a result. And prior to having pulmonary fibrosis, there was nothing anxiety was even a remote part of Dad’s life or way of being.

In some cases, like Dad’s, doctors can determine the cause of the fibrosis (scarring). In his case it was related to asbestos exposure during his years of working in construction and remodeling. Often the cause remains unknown, and that is termed idiopathic pulmonary fibrosis or IPF. IPF occurs primarily in older adults. Continue reading