Caregivers Need Knowledgeable Guidance

Caregivers Need Knowledgeable Guidance

...That caregivers put so much energy, time, love, and concern into taking care of their person that they can become blind to or just plain don’t want to see the ever-approaching shadow of death

“You often can’t see the forest for the trees” is one of the many things I learned being a caregiver. Now, months after my husband’s death, I have been thinking, “Barbara, you know the signs of approaching death. Signs of months, weeks, days, and hours. How did you not see them with your own husband?”

Because I was emotionally involved, because I was tired and scared and sad. Because my fix-it personality was in full operation.

I knew what to look for but I didn’t want to see, so I didn’t. Yes, I think denial plays a big part in our caregiving. If I just do everything right (food, activity) he will come out of this. In my case, I thought he would still be here at Christmas.

Fortunately, I called hospice. I called when I thought we had at least weeks, if not months. When Stephanie, our hospice nurse, arrived, I think now that she saw he had days to weeks. She is the one who walked in and took charge the day he died (a little Divine Order at play there). She saw what I didn’t want to see, what most of us caregivers don’t want to see – so don’t – AND are surprised when death comes so soon. I say “so soon” because we just don’t want to see it, so we don’t.

What am I trying to say here? That caregivers put so much energy, time, love, and concern into taking care of their person that they can become blind to or just plain don’t want to see the ever-approaching shadow of death

Caregivers need an objective, knowledgeable outsider to support and guide them. Someone to be a set of eyes to see what is really happening, to see what we don’t want to see, to guide and support us caregivers through the darkness and confusion our heart has put us in. Hospice or end of life doulas are that help.

Something More… about Caregivers Need Knowledgeable Guidance

If you or someone you know is caring for a special person approaching the end of life, I encourage you to get hospice involved. And use my guidebook, BY YOUR SIDE, Caring for the Dying at Home to provide valuable knowledge and guidance to help navigate your caregiving journey. The journey of caring for your special person can be challenging and exhausting. My hope is that with this guidebook and the support of others (family, community, and professionals) this experience will be a special time for you that will become a sacred memory. 

10 comments

Christy Braun

Barbara,

Thank you for sharing so transparently with us the loss of your beloved. The work you have done and continue to do is inspiring. As an end of life practitioner/death doula I am so deeply grateful that I have your body of work and wisdom as I help my clients navigate the end of life process. May the path be gentle beneath your feet.
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BK Books replied:
Hi Christy, I think if I have experienced these thoughts and feelings then others must have also. By sharing, my hope is others will find comfort in knowing they are not the only ones who have similar thoughts and feelings. Blessings! Barbara

Barbara,

Thank you for sharing so transparently with us the loss of your beloved. The work you have done and continue to do is inspiring. As an end of life practitioner/death doula I am so deeply grateful that I have your body of work and wisdom as I help my clients navigate the end of life process. May the path be gentle beneath your feet.
———
BK Books replied:
Hi Christy, I think if I have experienced these thoughts and feelings then others must have also. By sharing, my hope is others will find comfort in knowing they are not the only ones who have similar thoughts and feelings. Blessings! Barbara

Lori Martin

Oh Barbara, I’m so glad you had the presence of mind to call for someone to be “By Your Side”. You’re doing amazing by continuing to coach all of us as you go through your own personal grief process. Blessings to you 💜
———
BK Books replied:
Hi Lori, I figured what I am experiencing is not unique. I am sharing so that others can find themselves and realize they are not unusual—-that grief has many facets. Blessings to you. Babara

Oh Barbara, I’m so glad you had the presence of mind to call for someone to be “By Your Side”. You’re doing amazing by continuing to coach all of us as you go through your own personal grief process. Blessings to you 💜
———
BK Books replied:
Hi Lori, I figured what I am experiencing is not unique. I am sharing so that others can find themselves and realize they are not unusual—-that grief has many facets. Blessings to you. Babara

Jeff Newton

Great Read…..So Very Sorry for your Great Loss and God Bless You for sharing & being Transparent. Jeff Newton / Hospice Chaplain in Gilbert, AZ.
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BK Books replied:
Hi Jeff, thank you for your kind words. Blessings to you in the good work you are doing. Barbara

Great Read…..So Very Sorry for your Great Loss and God Bless You for sharing & being Transparent. Jeff Newton / Hospice Chaplain in Gilbert, AZ.
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BK Books replied:
Hi Jeff, thank you for your kind words. Blessings to you in the good work you are doing. Barbara

Dawn Young

Thank you Barbara for sharing what you know on both sides of caring for the dying. It’s hard to be objective when it’s your loved one who is dying. It helps to explain the shock and surprise that family members experience when they come to the realization that indeed their loved one is actively dying. It’s difficult to witness because we know we will feel the same way one day as someone we love dies.
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BK Books replied:
Hi Dawn, thank you for sharing your insights. Blessings! Barbara

Thank you Barbara for sharing what you know on both sides of caring for the dying. It’s hard to be objective when it’s your loved one who is dying. It helps to explain the shock and surprise that family members experience when they come to the realization that indeed their loved one is actively dying. It’s difficult to witness because we know we will feel the same way one day as someone we love dies.
———
BK Books replied:
Hi Dawn, thank you for sharing your insights. Blessings! Barbara

Cathy

Dear Barbara,

Your words really hit home with me. My mom recently passed away and though I knew the signs-giving things away, reminiscing, my heart didn’t want to accept it. In the deep recesses of my mind, I knew when she started giving things away months ago, she was nearing the end. I didn’t want to accept it. Then, one day, she had a CVA and by the next day, she was gone. It feels strange being an orphan.
———
BK Books replied:
Cathy, when our parents die we suddenly have to be the grown up—-no matter our actual age. My blessings to you in this new part of your life. Barbara

Dear Barbara,

Your words really hit home with me. My mom recently passed away and though I knew the signs-giving things away, reminiscing, my heart didn’t want to accept it. In the deep recesses of my mind, I knew when she started giving things away months ago, she was nearing the end. I didn’t want to accept it. Then, one day, she had a CVA and by the next day, she was gone. It feels strange being an orphan.
———
BK Books replied:
Cathy, when our parents die we suddenly have to be the grown up—-no matter our actual age. My blessings to you in this new part of your life. Barbara

Linda

My husband died at home two weeks ago.

I used all your resources and was guided by compassionate hospice caregivers.
I felt equipped to move forward and I thank you very much!
———
BK Books replied:
Linda, my blessing to you as you begin this new life journey. Blessings! Barbara

My husband died at home two weeks ago.

I used all your resources and was guided by compassionate hospice caregivers.
I felt equipped to move forward and I thank you very much!
———
BK Books replied:
Linda, my blessing to you as you begin this new life journey. Blessings! Barbara

Jan Hallock

Thank you, Barbara, for sharing this most personal understanding you have come to realize. It is so important for caregivers to be aware of this. Hopefully they/we will be willing to accept the unbiased help needed in caring for our loved ones.

Blessings to you as you move forward on your grief journey.
———
BK Books replied:
Thank you Jan for your kind supportive words. Blessings! Barbara

Thank you, Barbara, for sharing this most personal understanding you have come to realize. It is so important for caregivers to be aware of this. Hopefully they/we will be willing to accept the unbiased help needed in caring for our loved ones.

Blessings to you as you move forward on your grief journey.
———
BK Books replied:
Thank you Jan for your kind supportive words. Blessings! Barbara

Akaljeet

Thank your so much Barbara for all your wisdom as it continues to inform my work in the Death Care world. I’m so grateful as you continue to share the true vulnerability and underbelly of your sacred and difficult journey of caring for your husband in his end of life. It rings so very clear to me to hear you say that even you did not see the signs of his nearing transition because you loved him so much and because you were just doing everything in your power to help him live even when he was dying. I have often wondered why we don’t see it coming with our loved ones? And your honest truth of your experience explains so much to me. I feel us as death doulas and hospice are called in at the last hour unless there is someone who is there with open eyes and heart and not a caregiver watching and listening.
People always think they have more time …..
With gratitude in my heart
Akaljeet
———
BK Books replied:
Hi Akalijeet, yes, caregivers tend to see more with their heart than with their intellect. That was a good lesson for me to learn so I could help others in similar situations. Blessings to you in the work you are doing. Barbara

Thank your so much Barbara for all your wisdom as it continues to inform my work in the Death Care world. I’m so grateful as you continue to share the true vulnerability and underbelly of your sacred and difficult journey of caring for your husband in his end of life. It rings so very clear to me to hear you say that even you did not see the signs of his nearing transition because you loved him so much and because you were just doing everything in your power to help him live even when he was dying. I have often wondered why we don’t see it coming with our loved ones? And your honest truth of your experience explains so much to me. I feel us as death doulas and hospice are called in at the last hour unless there is someone who is there with open eyes and heart and not a caregiver watching and listening.
People always think they have more time …..
With gratitude in my heart
Akaljeet
———
BK Books replied:
Hi Akalijeet, yes, caregivers tend to see more with their heart than with their intellect. That was a good lesson for me to learn so I could help others in similar situations. Blessings to you in the work you are doing. Barbara

Meredith Stacy

As a hospice volunteer I think that I need to buy a book or two.
Meredith

———
BK Books replied:
Hi Meredith, good for you for being a hospice volunteer. Aside from my Guideline Series you find By Your Side helpful in building your knowledge base for end of life work. Blessings to you for the good work you are doing. Barbara

As a hospice volunteer I think that I need to buy a book or two.
Meredith

———
BK Books replied:
Hi Meredith, good for you for being a hospice volunteer. Aside from my Guideline Series you find By Your Side helpful in building your knowledge base for end of life work. Blessings to you for the good work you are doing. Barbara

Joan

Thank you Barbara for your honest reflective words. You have stated several truths. There is nothing easy about facing the decline and eventual death of a loved one. I have been in the caregiver spot with both of my parents and it is true that we always think there is just one more thing we can do for them. I can’t say I was in denial but maybe I was when the doctor mentioned hospice to us with my Mom when he felt she was within 6 months of death. And, he was darn close. Thank you for sharing your heartfelt thoughts which hopefully will help someone else in their time of “what to do next”.
———
BK Books replied:
Hi Joan, thank you for your comments. Blessings! Barbara

Thank you Barbara for your honest reflective words. You have stated several truths. There is nothing easy about facing the decline and eventual death of a loved one. I have been in the caregiver spot with both of my parents and it is true that we always think there is just one more thing we can do for them. I can’t say I was in denial but maybe I was when the doctor mentioned hospice to us with my Mom when he felt she was within 6 months of death. And, he was darn close. Thank you for sharing your heartfelt thoughts which hopefully will help someone else in their time of “what to do next”.
———
BK Books replied:
Hi Joan, thank you for your comments. Blessings! Barbara

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