My mother can finally rest in peace

My mother died Thursday morning.

It was a tough last few weeks, and the last hours were frankly brutal.

I can only hope she wasn’t in as much discomfort as she seemed, despite being given copious medications for pain and anxiety.

Mom loved her time in the Navy.

Mom loved her time in the Navy.

The hospice nurses and myself kept assuring Mom that it was ok to let go when she was ready. I felt like there was some internal struggle going on in there, despite the fact that she told me repeatedly that she was ready to go and was not afraid of death. She certainly did not want to linger in the state she did, non-responsive, devoid of her lively and happy personality, unable to eat or drink, and completely dependent upon me and the nurses for every task of living.

Maybe Mom’s spirit was just fighting with her stubborn body, and that determined heart of hers. The hospice nurses were quite surprised that Mom continued to live, considering the state of the rest of her body, but her heart and vital signs continued to be good. I was afraid, for her sake and mine, that it would continue to beat strong for much longer than it did. I was at her bedside when she drew her last breath, and I felt her heart beat slow, weaken and then come to a complete stop.

As you loyal followers know, this blog exists in part over guilt I had about my dad’s death, and how I wasn’t present when he died. I know being here to take care of my mom, and being present for her passing was the right thing to do.

But of course, there is a high price to pay on a psychic level by experiencing something so intense as a loved one dying. There are things I wish I hadn’t seen, tasks I wish I didn’t have to do. Time will no doubt provide a different perspective on the experience.

The important thing for now is that Mom was well-taken care of and she did not die alone.

As for what was beyond this life, Mom often said that, “It’s a good place and it’s a right place.”

I hope she’s right.

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Playing the waiting game with Death

My mother’s health took a big turn for the worse this week.

The hospice nurse expects her to pass in days, maybe a week, though her heart is very strong, so she could last longer.

Mother's Day

Mother’s Day

For her sake, and mine, I hope that the suffering is not prolonged.

She is now totally bedridden, somewhat delirious and a new pain complaint has popped up the last two days. She now complains of severe head and neck pain. The nurse cannot figure out what may be causing it. It is unlikely that the colon cancer, if it has returned, spread to her brain, though it is a possibility.

But the morphine is not really touching the head pain, even when dosed hourly. She is so “zonked out” by the pain meds yet still is pointing to her head and grimacing. That is tough to watch.

Mom’s face has been taken over by that ghoulish death mask. Her eyes are starting to look beyond.

But her heart continues to beat hard and strong in her emaciated chest.

In one of her lucid moments, my mother asked what had happened to her. And to that, I had no good answer.

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A medicated Mother’s Day

So far, the hospice-provided “comfort kit” has not brought my mother as much comfort as she had hoped.

pills

My mom had a false impression about morphine, after experiencing the temporary euphoria of the IV morphine given sometimes during emergency medical situations. I think Mom was hanging on to the idea that morphine was going to be this miracle drug that was going to magically remove her pain and let her get things done and bring back her appetite.

Well, we all know what morphine does, especially to an elderly, frail person like my mother. It knocked her on her butt, once we adjusted her dosage to effectively relieve the pain. Then she ended up getting a bit too much (even though she was still self-reporting pain as a 7) and ended up getting sick twice.

That was Saturday night. She did manage to sleep through the night, a rarity.

Today the hospice nurse visited and recommended we try Haldol. I had read some things about it (often used for mental health conditions like schizophrenia) but also read that it is a proven anti-nausea medication.

So I tried Mom on the lowest dose and that really knocked her for a loop! I am a naturally cautious person around medications, but it is still surprising to see the effects they can have on an individual. Mom was hardly able to walk and she was very groggy, but still in pain so she couldn’t really sleep.

Figuring out the correct dosage and cocktail of drugs is really trial and error, and when done in the home environment, is quite stressful.

I just put her to bed, giving her a small dose of morphine along with an Ativan, the latter which she has taken for years and tolerates well. This worked for her overnight, so I’m hoping we have found the right combination to relieve her pain and help her sleep without making her sick.

I hope for another quiet overnight period. Ironically, I still slept poorly last night, because I kept waking up to make sure Mom was okay.

If you have any medication tips or experiences to share, please do so below in the comments section.

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Being the ‘angry advocate’ is sometimes necessary

I don’t like conflict. I like things to run smoothly and everyone to do their job. This is especially true during a crisis.

Of course, it is in these tough situations that conflicts and issues often arise.

Ironic door sign

I found out yesterday that after waiting over a week for hospice to begin, with my mom reporting an 8 out of 10 on the pain scale during every home health visit, that the hospice transition process had not even started! The home health agency told me I needed to talk to my mother’s primary care physician. But last week, when I was at the doctor’s office, I asked about starting hospice and the doctor’s staff told me the home health agency needed to fax them paperwork.

I was beyond frustrated. I don’t get angry very often but I was really furious. My mom had suffered needlessly for over a week because these two entities that work with each other all the time can’t get their acts together?

Since the local home health agency is now part of a larger corporation, I filed a complaint at the corporate level. I don’t generally like to throw people under the bus but I wanted action.

And it worked. Tomorrow a staff member is coming to transition Mom to home hospice.

I just wish I had been the angry advocate sooner.

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Dying with dignity shouldn’t be so difficult

The last week my mom’s health has taken a steep decline. Barring some miraculous turnaround, it is fair to say she is actively dying.

Hard to believe this photo was taken just a little over a month ago.

Hard to believe this photo was taken just a little over a month ago.

While I have prepared myself for this moment, and have seen it coming for awhile, what I didn’t necessarily expect was how difficult it would be to just allow someone to die in peace and comfort.

I literally had to run all over town just to get prescription paid medicine for my mom. I know new regulations on controlled substances took effect this year, but frankly, if an addict wants narcotic pills they are going to get them no matter what. In the meantime, those who are legitimately in pain have to suffer.

The doctor made me go in person to pick up the prescription. They said they required a family member to pick it up, even the nurses at the home care agency my mom uses were forbidden from picking it up. Guess it’s good I just arrived in town! There is no way my mom could have made it to the doctor’s office.

There are plenty of pain-ridden people who live alone, what do these poor souls do?

And while I don’t necessarily want my mother to waste away in a hospital setting, I am surprised that the doctors keep sending her home from the ER. Uncontrollable pain, emaciated, can barely ambulate … I mean, geez, what does it take to be admitted to the hospital these days? The doctor told her she didn’t qualify for an inpatient stay under the new strict guidelines.

So we are starting hospice, but her overworked doctor has to sign off on it. I’m not too hopeful that it will be done quickly. While her doctor was off last week, my mom had no pain medicine and being cut off cold turkey really sent her health reeling into a death spiral.

So much red tape and regulations are getting in the way of treating people who are suffering with some form of dignity.

Family caregivers shouldn’t be left feeling helpless and devastated as they watch their loved one suffer needlessly.

I hope we can work together to advocate for better end-of-life treatment.

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One of those weeks caregivers dread

Last Monday, I tried to call Mom but her line was busy. This is not that unusual, so I didn’t think too much about it. A few minutes later, I received a call from an unknown number. By the time I Googled it and saw that it was the Lifeline number, the call had gone to voice mail. I immediately called back without waiting for the message.

Mom had slipped off the bed and fallen. She fell on her butt, thankfully, but was still sore and shaken up. Fortunately, she was checked out by EMS and seemed ok, so no ER visit was necessary.

Still, I fear it is the beginning of the “no longer can live at home alone” phase. Mom’s done pretty well this past week, all things considered, but the tricky part for caregivers is knowing when to make these key decisions for a loved one’s care.

Beautiful Elle, RIP.

Beautiful Elle, RIP.

At the same time that was going on, our 16-year-old cat was rapidly declining. A cancerous lesion on the roof of her mouth meant she could no longer eat without discomfort, even with pain medications. Sadly, over the last few years, I’ve become used to the euthanasia process. While thankful that we have that choice for pets, it is still brutally heartbreaking to have to make that decision.

My mom wishes she could be like the cat and just go on. She says she is ready and she is not afraid of what is beyond. She is miserable with being in constant pain, and having a loss of appetite and fatigue. The doctors are no closer to diagnosing her than before. Is the cancer back? She’ll have to have a colonoscopy to determine that, but at barely 100 pounds and weak, she’s in no shape for the preparation.

She also hates to be a burden on others. While certainly I can’t deny the stress the last few years have created, I don’t want my mother to feel guilt over something she cannot control.

With wry humor, I know that we are going to have to get a bigger shelf to hold all of our memorials, for people and pets lost over the years. It’s getting crowded up there.

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Psychology Today Post

Joy Johnston:

Definitely can relate to this post with the health roller coaster my mom has been on for the last several months. As a caregiver, we can all use a reminder to take care of ourselves!

Originally posted on What to Do about Mama?:

https://www.psychologytoday.com/blog/your-personal-renaissance/201504/ambushed-eldercare-you-re-not-alone

Ambushed by Eldercare? You’re Not Alone

7 strategies to help you cope

Post published by Diane Dreher Ph.D. on Apr 08, 2015 in Your Personal Renaissance

Source: Google Images labeled for reuse
Psychology Today
Late one night the phone rings. Your 80-year-old mother has had a heart attack and your life turns upside down, bringing worry, stress, anxiety, and uncertainty, your days punctuated by one crisis after another.

More than 54 million Americans are unpaid caregivers to their family members, two-thirds of whom are women (Matthews & Blank, 2013). Pulled in multiple directions at once, many are caring for their own children, as well as older relatives, and their numbers are only increasing as the population ages.

“It is a terrible situation to have so many people to care for and yet also have work responsibilities and other commitments—as well as the need to take care of oneself and remain sane,”…

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