Triggers for caregivers

Posted by Scott, Volunteer Mentor @IndianaScott, May 29, 2019

Hi to all caregivers here! This past week I really got to thinking about all us caregivers here as I had a set of unusual triggers hit me, as the kids say these days ‘right in the feels’. I’m wondering if other caregivers, present and past, get effected by triggers as I do?

First was when our daughter was admitted to the hospital for a serious illness. Other than for visiting in a hospital I hadn’t been in the ‘working areas’ since I had been caring for my wife. As I drove the hour from our home to the hospital to be with our daughter I was overcome with not only my worry for her, but by a crush of emotions as I was overwhelmed by memories of the times I had to be in this crisis mode with my wife. When I arrived I got hit with another trigger as our daughter was in the same hospital where my wife got her first diagnosis of her brain cancer. Walking through those same front doors, I actually had to sit and cry in the lobby before I went back into the ER. In short order she was transferred to the ICU. I had not been in an ICU since my wife spent days in the NICU at Mayo. The noises, IVs, rush of nursing, regular monitoring, the feelings of fear, etc. triggered wave upon wave of emotion and memories.

Thankfully our daughter’s condition did improve and she was able to return home and is well on the mend. Then the next kind of crazy trigger hit.

Before getting ill our daughter had arranged to adopt a rescue Lab. She couldn’t go to pick up her dog so I made the trek and agreed to keep her for the week until she could join us. Her name is Stella and I was slammed again. Shaking, ribs sticking out, sores on her body, and then the intermediary said to me ‘you better be a good caregiver, she need’s a lot of TLC.’ Just him using that word sent me into a spin again.

Stella is improving and a truly sweet dog, then another wave. This is the time of year I have a lot of trigger events in quick succession. This was the time of year my wife suffered incredibly in her final days. It’s also when we celebrate and remember her birthday, our anniversary, and then the day of her passing. I know my emotions are far more raw and release easier in life. Heck, I even cried watching EndGame with our grandsons! But this time of year, when I am hit with trigger, upon trigger, upon trigger, I am a bigger emotional mess than usual.

I’d appreciate hearing how you, as caregivers, deal with your triggers?

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Scott, the "trigger" you mentioned hit home as I used that response at a meeting recently where a grief counselor was explaining her role to a church group. I mentioned learning of "anticipatory grief" in relation to dementia and incurable diseases and explained how I dealt with "triggers". Since my husband was diagnosed with Alzheimer's and vascular dementia Spring, 2014, Spring is particularly difficult. He was admitted to a care center two years ago May 17. Every day I remember the day I took him to a Senior Behavioral Unit for evaluation and tenth long wait until July until we found placement for him.

Tears come even as I'm writing this. Just one day at a time. After 64 years of marriage being apart is hard. Even when he was an over-the-road. we talked every day. Now his speech is so garbled, I often can't understand him.

I lost a daughter to suicide after suffering postpartum depression after the birth of both of her children. This was 43 years ago and little was known of the condition and even less on how to treat it. I do pretty well until spring of each year when her birthday in March occurs and in August the month when she died just three days before the 3rd birthday of her daughter. August is very hard and I have learned to just take it as it comes and rejoice in the delight of my granddaughter and grandson. We move on day by day. Friends are so important and I lean on them frequently. They are understanding.

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@rmftucker

Scott, the "trigger" you mentioned hit home as I used that response at a meeting recently where a grief counselor was explaining her role to a church group. I mentioned learning of "anticipatory grief" in relation to dementia and incurable diseases and explained how I dealt with "triggers". Since my husband was diagnosed with Alzheimer's and vascular dementia Spring, 2014, Spring is particularly difficult. He was admitted to a care center two years ago May 17. Every day I remember the day I took him to a Senior Behavioral Unit for evaluation and tenth long wait until July until we found placement for him.

Tears come even as I'm writing this. Just one day at a time. After 64 years of marriage being apart is hard. Even when he was an over-the-road. we talked every day. Now his speech is so garbled, I often can't understand him.

I lost a daughter to suicide after suffering postpartum depression after the birth of both of her children. This was 43 years ago and little was known of the condition and even less on how to treat it. I do pretty well until spring of each year when her birthday in March occurs and in August the month when she died just three days before the 3rd birthday of her daughter. August is very hard and I have learned to just take it as it comes and rejoice in the delight of my granddaughter and grandson. We move on day by day. Friends are so important and I lean on them frequently. They are understanding.

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Good morning @rmftucker I appreciate your sharing your experiences! It helps me know I am not alone in the feelings and struggles I have.

I agree with the importance of having someone who understands! So many around me have the 'get over it' attitude that finding one who is willing to talk and listen about it is golden! We moved around a great deal so those who understand tend to be electronically close — thanks to the internet! I still enjoy writing letters, but it sure is nice to be able to e-connect when the times are extra challenging!

I wish you a sunny spring!

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I never had acid reflux until going through my husband's head and neck cancer experience. I stay at the hospital whenever he is hospitalized and the last time, I had a challenging time with the nurses and felt sick and was throwing up. When the doctor came in and said that he could go home, I immediately quit throwing up and felt fine.
Although it wasn't really important, I was irritated when on a first visit with an allergist, she asked if my husband's cancer was HPV related. That had no importance in her diagnosis of his allergy to the soap he was using, and although I answered that it was not HPV related, I found it to be very rude to be asked such a question. Those are the kind of things you have to bite your tongue about, fearing that it might change the quality of help received.

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Yes, I feel like I am constantly bombarded with triggers. I lost my mom 3 years ago to lung cancer after almost a 2 year battle. My father was diagnosed this past year with small cell bladder cancer. The trips to the hospital, chemo treatments, and constant scans… I find myself breaking down all the time. There are little reminders all the time of what I went through and I am so afraid of the outcome. This is the first I have heard the term anticipatory grief and that perfectly explains what I am feeling.

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@walisky

I never had acid reflux until going through my husband's head and neck cancer experience. I stay at the hospital whenever he is hospitalized and the last time, I had a challenging time with the nurses and felt sick and was throwing up. When the doctor came in and said that he could go home, I immediately quit throwing up and felt fine.
Although it wasn't really important, I was irritated when on a first visit with an allergist, she asked if my husband's cancer was HPV related. That had no importance in her diagnosis of his allergy to the soap he was using, and although I answered that it was not HPV related, I found it to be very rude to be asked such a question. Those are the kind of things you have to bite your tongue about, fearing that it might change the quality of help received.

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Good day, @walisky I agree that often times our anxiety and fears can result in a physical reaction for sure!

While not a solution for everyone, I have found asking the question of 'I am curious, why did you ask that specific question?' often gets me over the hump of being reluctant to ask a question I feel might be heard as a challenge to a medical professional.

I hope your husband is doing better these days!

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@tattrigoo

Yes, I feel like I am constantly bombarded with triggers. I lost my mom 3 years ago to lung cancer after almost a 2 year battle. My father was diagnosed this past year with small cell bladder cancer. The trips to the hospital, chemo treatments, and constant scans… I find myself breaking down all the time. There are little reminders all the time of what I went through and I am so afraid of the outcome. This is the first I have heard the term anticipatory grief and that perfectly explains what I am feeling.

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Hi @tattrigoo I am sorry to read of the loss of your mom and your dad's health journey as well. Tough times for sure!

Being a caregiver for a loved one with a chronic disease fits too well with @rmftucker idea of 'anticipatory grief'. T

Also I believe the daily, and often hourly demands, of caregiving can be so challenging we often don't give ourselves enough credit for making it through our periods of grief as we deal with our losses at the time and cannot help but think to what might lie in wait for us as our patient progresses on their journey.

I send you continued strength, courage, and peace!

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Triggers! Wow! Yes I’ve had a few now. My husband was treated at the Mayo with CAR T therapy for lymphoma. It was a last resort which I’m happy to say has been successful thus far. He had some pretty awful side effects and was in ICU twice. They gave him steroids while in ICU when it was really bad. Now that he is home he has had monthly IVIG infusions. Well he had a reaction to the infusion and had to be given a steroid. Well who would have thought that would do it? Not immediately but later that evening I started shaking and fell to pieces. He was sleeping away from all the meds totally unaware which I was happy about. But I have had a hard time since then. Even the mention of steroids can cause a panic. Now I know you asked what people do and what I have found helpful is a meditation app. Sounds silly but 10 minutes of listening to a soothing voice and the other things calms me right down. It is getting better but I imagine there will be more triggers.

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Harriet Hodgson, M.A. & Lois E. Krahn, M.D. have written a book "Smiling Through Your Tears: Anticipating Grief" that is very useful. I think I saw it mentioned on Mayo Connect several years ago and I purchased a copy. I've shared it with several local support groups that I belong to, and have found it very useful myself. You don't need to read the complete book, just pick the sections that interest you or pertain to your situation. Hope this is useful.

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Scott, glad to hear your daughter is on her way to better health.

Perhaps we could look at triggers a bit differently. They are gentle reminders to us how important those people have been in our lives, how deeply we feel about them. It is our heart telling ourselves that we recall the emotions, and shared times. Not sure if this makes any sense, but that is how I have dealt with triggers, trying to put a more positive spin on them, so I don't shut down.
Ginger

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Scott, I am so sorry for your troubles. Saying a prayer that God will help you and bless you, your daughter, and your doggie. But thanks for your good sense about triggers. I need that.

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