When the Primary Caregiver Stops

Posted by fiesty76 @fiesty76, May 15 7:08am

My best friend is now in end-of-life palliative care. When my friend was dismissed from last hospitalization, her daughter from out-of-state came and took over my friend's health supervision, took her for med. appointments and treatments, collaborated with home health care provider and made her daily meals.

Friend's hubby is the most loving, helpful, patient, generous spirited man to wife and others I've ever known. He is in his 80's and while he can manage a fried/boiled egg and mashed potatoes, his kitchen skills are severely lacking. vbg Until my friend's hospital release, I'd been an integral part of caregiving with meal preps, communicating with medical team, etc.

The daughter's arrival and 2+ month stay proved a mixed blessing for both hubby and me. While both intelligent and very capable, the daughter also has serious emotional problems. Her jealousy of the hubby and her possessiveness of her mother had previously alienated mom and daughter. Her arrival on the scene, along with 2 teenage daughters and 2 dogs created increasing stress and turbulence with all connected to and at all levels of care for my friend. Her verbal attacks to hubby and overbearing behavior with medical team became so disruptive that friend sent her home on Mother's Day.

Her arrival also meant that, while a great relief, she took over all scheduling, tracking meds, etc. Due to covid and my own very serious asthma and compromised lungs, I self-quarantined 3/13th, stopped driving and cannot provide meals. I also fell out-of-the-loop on new meds, tracking & times as well as weekly appt scheduling.

One day ff her departure, her hubby was admitted to ER for kidney stones. It has been a daunting struggle stepping in to try to fill the gap and get up to speed. Home health, medical team and social worker have been wonderful. I did not have important phone numbers for home health, my friend's 2 out-of-town brothers or hubby's chldren. Nor did I have contact numbers for additional med. pros now scheduled since her hospital release.

As a result, it became imperative for me to compile an Emergency List of Contact Numbers and also an immediate list all meds and their scheduled times to be given. Things are better now. Hubby is home from hospital; appointments are now on a calendar and home workers are scheduled for daily meal and sitter help.

A long time primary caregiver for my mom, sister and nephew, I was blessed to never find myself out of commission or unable to do whatever was required. Because I live alone, Covid-19 and my friend's situation has made me incredibly aware of the need for me to supply my out-of-state daughter with a much more comprehensive list of Emergency Numbers, including meds and my vet and pet neighbor contact in case I should need an emergency trip to the hospital.

Are there other tips for those of us caregivers and live aloners that would help during this pandemic?

@fiesty76 Do you have a vial of life posted on your refrigerator ? Our paramedics out here gave us all a vial for life . It has all your meds Dr name ,phone number ,allergies you have ,next of kin like son, daughter there phone numbers and what hospital you go to , in case you cant talk or are unconscious . Caregiving is a wonderful thing you are doing but of so tiresome

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@fiesty76 Have a binder with important information in a readily accessible place. Tell you daughter, trusted neighbor/friend where that is. Make sure a nearby friend/neighbor has a key to get in to your place, if needed. There are decals/window tags you can place to let first responders know there is a dog in your house, always good to know. Keep or develop a practice that lets a neighbor know you are okay. For example, my dad would raise his American flag each day, and open one curtain. If he didn't, neighbors would check on him. Carry the emergency numbers in your pocketbook. In your cellphone list them as I C E [in case of emergency] with a space between each letter like this, then their name and relationship to you. I have my husband and sister listed like that.

You are a blessing to your friend and her husband. Don't forget to take care of yourself, also.
Ginger

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Hi @fiesty76 The only thing I can add is to ask if your friend is in 'end of life' care, are they receiving hospice care? I know in my wife's case it was an incredible change for her and her care in a good way!

Strength, courage, and peace!

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@contentandwell, Be assured that any and all I’ve done for my friend and her guy has been at their request and with their gratitude. While this is certainly a complex time in our lives, for those in my friend’s orbit, it is primarily a heart rending one of concern, apprehension and continuing prayers that she be as pain free as possible.

My sincerest thanks for your kind support and good wishes @lioness, @ginger and @ Indiana Scott.

Scott, I was troubled that home health care but not Hospice was provided when my friend returned home from hospital. Daughter said that she was told by oncologist that as long as my friend was receiving infusions, Hospice was not available. Not sure how many more treatments are prescribed but can suggest hubby ask oncologist about Hospice now.
Years ago, both my mom and sister, once diag. with Stage 4 cancer went immediately on Hospice. Neither of them, however, pursued additional chemo/radiation etc. so maybe that made the difference? You are so right. The degree of additional care and support Hospice provided both them and me made an incredible positive difference for us all.

ContentandWell, My friend’s guy (don’t know how to refer to him; not married but tog. over20 yrs and “partner” connotes a gay relationship to me) had kidney stone surgery in 2002. When he tried to get appt. with same pcp who was his and is my friend’s this go round with kidney, was told not accepting new patients. He did go to hospital ER. Sent home with pain meds and hope that stone will pass; if not, he was given a doc referral while at the ER. While he will do everything in his power to take the very best care possible of my friend, he hadn’t seen a doc since 2002. Efforts by my friend to get him to establish a new pcp fell on deaf ears. Maybe now. Is this reluctance a guy thing??? Vbg

As for my neighbor’s Apple watch not signaling her fall, her niece bought it for her 3-4 months ago so would hope it was the latest model. Maybe it was defective or needed some special set up to be activated? She’s not comfortable yet to have it checked out at Apple store.

@lioness, Thank you so much for this information! Had not heard of VIAL of Life. Site for Free Print Out for EMS : http://vialalife.com/

@gingerw, Yes! After a stroke, 3 yrs ago and before carotid surgery, I updated legal docs and medical directives and created a comprehensive binder which included, doc, med, ins, investment, local service providers like plumber/ electrician, utilities, vet and other with contact info, account #’s, etc. Kept one and sent the other to out-of-state daughter. It needs to be updated because of provider retirements and need for additions. Thank you for providing this timely reminder for me to update that.

I have DNR but with Covid, I’m rethinking whether I want to make that handy for EMS…Shoot,I might be one of the very lucky ones if I became infected. Smiles I don’t have a smart phone but do carry a list of meds, doc contact info, along with local friends/neighbors and daughter contact and who has house keys. I also subscribe to a medical alert sys. whch has immediate contact names and numbers.

@artscaping, I love the pic of this baby and also the wonderful story of Jay’s help in reviving it and others. Is Jay a son? Grandson? Maybe he is a bird whisperer??? So nice!

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@IndianaScott, Scott, my earlier post didn't highlight your name and wanted you to know how much I appreciated what you posted:
"My sincerest thanks for your kind support and good wishes @lioness, @ginger and @ Indiana Scott.

Scott, I was troubled that home health care but not Hospice was provided when my friend returned home from hospital. Daughter said that she was told by oncologist that as long as my friend was receiving infusions, Hospice was not available. Not sure how many more treatments are prescribed but can suggest hubby ask oncologist about Hospice now.
Years ago, both my mom and sister, once diag. with Stage 4 cancer went immediately on Hospice. Neither of them, however, pursued additional chemo/radiation etc. so maybe that made the difference? You are so right. The degree of additional care and support Hospice provided both them and me made an incredible positive difference for us all.

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@fiesty76

@contentandwell, Be assured that any and all I’ve done for my friend and her guy has been at their request and with their gratitude. While this is certainly a complex time in our lives, for those in my friend’s orbit, it is primarily a heart rending one of concern, apprehension and continuing prayers that she be as pain free as possible.

My sincerest thanks for your kind support and good wishes @lioness, @ginger and @ Indiana Scott.

Scott, I was troubled that home health care but not Hospice was provided when my friend returned home from hospital. Daughter said that she was told by oncologist that as long as my friend was receiving infusions, Hospice was not available. Not sure how many more treatments are prescribed but can suggest hubby ask oncologist about Hospice now.
Years ago, both my mom and sister, once diag. with Stage 4 cancer went immediately on Hospice. Neither of them, however, pursued additional chemo/radiation etc. so maybe that made the difference? You are so right. The degree of additional care and support Hospice provided both them and me made an incredible positive difference for us all.

ContentandWell, My friend’s guy (don’t know how to refer to him; not married but tog. over20 yrs and “partner” connotes a gay relationship to me) had kidney stone surgery in 2002. When he tried to get appt. with same pcp who was his and is my friend’s this go round with kidney, was told not accepting new patients. He did go to hospital ER. Sent home with pain meds and hope that stone will pass; if not, he was given a doc referral while at the ER. While he will do everything in his power to take the very best care possible of my friend, he hadn’t seen a doc since 2002. Efforts by my friend to get him to establish a new pcp fell on deaf ears. Maybe now. Is this reluctance a guy thing??? Vbg

As for my neighbor’s Apple watch not signaling her fall, her niece bought it for her 3-4 months ago so would hope it was the latest model. Maybe it was defective or needed some special set up to be activated? She’s not comfortable yet to have it checked out at Apple store.

@lioness, Thank you so much for this information! Had not heard of VIAL of Life. Site for Free Print Out for EMS : http://vialalife.com/

@gingerw, Yes! After a stroke, 3 yrs ago and before carotid surgery, I updated legal docs and medical directives and created a comprehensive binder which included, doc, med, ins, investment, local service providers like plumber/ electrician, utilities, vet and other with contact info, account #’s, etc. Kept one and sent the other to out-of-state daughter. It needs to be updated because of provider retirements and need for additions. Thank you for providing this timely reminder for me to update that.

I have DNR but with Covid, I’m rethinking whether I want to make that handy for EMS…Shoot,I might be one of the very lucky ones if I became infected. Smiles I don’t have a smart phone but do carry a list of meds, doc contact info, along with local friends/neighbors and daughter contact and who has house keys. I also subscribe to a medical alert sys. whch has immediate contact names and numbers.

@artscaping, I love the pic of this baby and also the wonderful story of Jay’s help in reviving it and others. Is Jay a son? Grandson? Maybe he is a bird whisperer??? So nice!

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@fiesty76 I got mine from a program here our Resident Social worker brings in diff. programs so this is how we here got out vial of life put it in refrigerator and a sticker on the ref. door . Also my Dr gave me a end of life paper I filled out for her and my ins. has a copy of this and p.o. w . Since I had my P.O .W made in Pa . I was concerned that it would,nt be good here in Ca. but UPS just puts there notary on it and I good to go (haha) have a good day .

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@fiesty76

@contentandwell, Be assured that any and all I’ve done for my friend and her guy has been at their request and with their gratitude. While this is certainly a complex time in our lives, for those in my friend’s orbit, it is primarily a heart rending one of concern, apprehension and continuing prayers that she be as pain free as possible.

My sincerest thanks for your kind support and good wishes @lioness, @ginger and @ Indiana Scott.

Scott, I was troubled that home health care but not Hospice was provided when my friend returned home from hospital. Daughter said that she was told by oncologist that as long as my friend was receiving infusions, Hospice was not available. Not sure how many more treatments are prescribed but can suggest hubby ask oncologist about Hospice now.
Years ago, both my mom and sister, once diag. with Stage 4 cancer went immediately on Hospice. Neither of them, however, pursued additional chemo/radiation etc. so maybe that made the difference? You are so right. The degree of additional care and support Hospice provided both them and me made an incredible positive difference for us all.

ContentandWell, My friend’s guy (don’t know how to refer to him; not married but tog. over20 yrs and “partner” connotes a gay relationship to me) had kidney stone surgery in 2002. When he tried to get appt. with same pcp who was his and is my friend’s this go round with kidney, was told not accepting new patients. He did go to hospital ER. Sent home with pain meds and hope that stone will pass; if not, he was given a doc referral while at the ER. While he will do everything in his power to take the very best care possible of my friend, he hadn’t seen a doc since 2002. Efforts by my friend to get him to establish a new pcp fell on deaf ears. Maybe now. Is this reluctance a guy thing??? Vbg

As for my neighbor’s Apple watch not signaling her fall, her niece bought it for her 3-4 months ago so would hope it was the latest model. Maybe it was defective or needed some special set up to be activated? She’s not comfortable yet to have it checked out at Apple store.

@lioness, Thank you so much for this information! Had not heard of VIAL of Life. Site for Free Print Out for EMS : http://vialalife.com/

@gingerw, Yes! After a stroke, 3 yrs ago and before carotid surgery, I updated legal docs and medical directives and created a comprehensive binder which included, doc, med, ins, investment, local service providers like plumber/ electrician, utilities, vet and other with contact info, account #’s, etc. Kept one and sent the other to out-of-state daughter. It needs to be updated because of provider retirements and need for additions. Thank you for providing this timely reminder for me to update that.

I have DNR but with Covid, I’m rethinking whether I want to make that handy for EMS…Shoot,I might be one of the very lucky ones if I became infected. Smiles I don’t have a smart phone but do carry a list of meds, doc contact info, along with local friends/neighbors and daughter contact and who has house keys. I also subscribe to a medical alert sys. whch has immediate contact names and numbers.

@artscaping, I love the pic of this baby and also the wonderful story of Jay’s help in reviving it and others. Is Jay a son? Grandson? Maybe he is a bird whisperer??? So nice!

Jump to this post

@fiesty76 My PCP has not been accepting new patients for quite a while. I know of a couple of people who tried to see him and were turned away. Unfortunately, often the PCPs who are accepting new patients are often quite new of not as highly regarded.
I think that reluctance is "a guy thing". My husband went from 2004, the year he retired, to a couple of years ago without seeing a doctor. When he was working he was at a level where he having an exam yearly by the company doctor was a benefit. He is finally seeing a good doctor and I too have discovered a couple that sound good but are actually accepting patients.

As for the Apple watch, you can still purchase older ones, they are much less expensive. The feature is only available on the 4 and the 5. If you are 65 or older it is automatic, otherwise, you have to set it up. When your watch is new you give it info about yourself that includes your date of birth so your age is known.
I found this online:
https://www.imore.com/how-set-and-use-fall-detection-apple-watch-series-4
I have found Apple to be excellent on the phone to help with problems so she could perhaps call the service center.
JK

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@lioness

@fiesty76 I got mine from a program here our Resident Social worker brings in diff. programs so this is how we here got out vial of life put it in refrigerator and a sticker on the ref. door . Also my Dr gave me a end of life paper I filled out for her and my ins. has a copy of this and p.o. w . Since I had my P.O .W made in Pa . I was concerned that it would,nt be good here in Ca. but UPS just puts there notary on it and I good to go (haha) have a good day .

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Excuse my question but what is the vial of life?

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@kathymcl

Excuse my question but what is the vial of life?

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@kathymc1 Vial of life it has all your medical information on it . YOur Dr. ,meds, health problems , hospital you Dr is at . If the EMT,s find you unconcius they know to look on the ref. then inside it we where told by the program from the firemen we had to put the vial of life in the refreg. and the sticker on the refreg. door . Also my Dr. requested a end of life sheet from me so she knows my wishes when in hospital . This is a important tool for you to have

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@kathymcl

Excuse my question but what is the vial of life?

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@kathymcl "File of Life". Typically it lists your name, emergency contacts, allergies, major medical conditions, medications, medical team names/contact info. When we signed up for the ambulance service in town, we got a File of Life from them. It has a magnetic piece on it that allows you to place it in fridge. But I have also seen them handed out by organizations. senior citizens centers, hospitals, etc. Here is the website, as you can see they are not expensive https://www.folife.org/

There is also "Vial of Life" which uses a decal on front door or window, to advise first responders of your medical information located in your fridge of freezer, in a sealed bag. Works on the same prinicipal.

If you have a home emergency, and cannot communicate with a rescuer, these devices can be a game-changer. Personally, I use a file of life, and I also wear a Medic Alert bracelet.
Ginger

Liked by fiesty76

REPLY
@gingerw

@kathymcl "File of Life". Typically it lists your name, emergency contacts, allergies, major medical conditions, medications, medical team names/contact info. When we signed up for the ambulance service in town, we got a File of Life from them. It has a magnetic piece on it that allows you to place it in fridge. But I have also seen them handed out by organizations. senior citizens centers, hospitals, etc. Here is the website, as you can see they are not expensive https://www.folife.org/

There is also "Vial of Life" which uses a decal on front door or window, to advise first responders of your medical information located in your fridge of freezer, in a sealed bag. Works on the same prinicipal.

If you have a home emergency, and cannot communicate with a rescuer, these devices can be a game-changer. Personally, I use a file of life, and I also wear a Medic Alert bracelet.
Ginger

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Thank you very much for this info, Ginger. Neither my husband nor I had any idea. Terrific idea.

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@kathymcl

Thank you very much for this info, Ginger. Neither my husband nor I had any idea. Terrific idea.

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@kathymcl You're welcome! I forgot to add that first responders are trained to look for these nuggets of information. Don't forget to list your insurance info. And, if you have pets, there are decals to place on front window that notifies a first responder an animal may be inside. [It back-fired on me years ago, when I placed a "dog in house" sign on front door, and "Beware of Dog" sign on back gate. I did it to dissuade ne'er-do-wells from coming on my property. When law enforcement came by one night looking for someone, they had me come out and get my dog back into the house. Problem was, I had no dog. They kinda raised their eyebrows at that one!]
Ginger

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@gingerw

@kathymcl You're welcome! I forgot to add that first responders are trained to look for these nuggets of information. Don't forget to list your insurance info. And, if you have pets, there are decals to place on front window that notifies a first responder an animal may be inside. [It back-fired on me years ago, when I placed a "dog in house" sign on front door, and "Beware of Dog" sign on back gate. I did it to dissuade ne'er-do-wells from coming on my property. When law enforcement came by one night looking for someone, they had me come out and get my dog back into the house. Problem was, I had no dog. They kinda raised their eyebrows at that one!]
Ginger

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@gingerw, Hadn't thought to add my ins. co. or "cat inside" to emerg. VIAL of life. Thanks for this.

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@fiesty76

@contentandwell, Be assured that any and all I’ve done for my friend and her guy has been at their request and with their gratitude. While this is certainly a complex time in our lives, for those in my friend’s orbit, it is primarily a heart rending one of concern, apprehension and continuing prayers that she be as pain free as possible.

My sincerest thanks for your kind support and good wishes @lioness, @ginger and @ Indiana Scott.

Scott, I was troubled that home health care but not Hospice was provided when my friend returned home from hospital. Daughter said that she was told by oncologist that as long as my friend was receiving infusions, Hospice was not available. Not sure how many more treatments are prescribed but can suggest hubby ask oncologist about Hospice now.
Years ago, both my mom and sister, once diag. with Stage 4 cancer went immediately on Hospice. Neither of them, however, pursued additional chemo/radiation etc. so maybe that made the difference? You are so right. The degree of additional care and support Hospice provided both them and me made an incredible positive difference for us all.

ContentandWell, My friend’s guy (don’t know how to refer to him; not married but tog. over20 yrs and “partner” connotes a gay relationship to me) had kidney stone surgery in 2002. When he tried to get appt. with same pcp who was his and is my friend’s this go round with kidney, was told not accepting new patients. He did go to hospital ER. Sent home with pain meds and hope that stone will pass; if not, he was given a doc referral while at the ER. While he will do everything in his power to take the very best care possible of my friend, he hadn’t seen a doc since 2002. Efforts by my friend to get him to establish a new pcp fell on deaf ears. Maybe now. Is this reluctance a guy thing??? Vbg

As for my neighbor’s Apple watch not signaling her fall, her niece bought it for her 3-4 months ago so would hope it was the latest model. Maybe it was defective or needed some special set up to be activated? She’s not comfortable yet to have it checked out at Apple store.

@lioness, Thank you so much for this information! Had not heard of VIAL of Life. Site for Free Print Out for EMS : http://vialalife.com/

@gingerw, Yes! After a stroke, 3 yrs ago and before carotid surgery, I updated legal docs and medical directives and created a comprehensive binder which included, doc, med, ins, investment, local service providers like plumber/ electrician, utilities, vet and other with contact info, account #’s, etc. Kept one and sent the other to out-of-state daughter. It needs to be updated because of provider retirements and need for additions. Thank you for providing this timely reminder for me to update that.

I have DNR but with Covid, I’m rethinking whether I want to make that handy for EMS…Shoot,I might be one of the very lucky ones if I became infected. Smiles I don’t have a smart phone but do carry a list of meds, doc contact info, along with local friends/neighbors and daughter contact and who has house keys. I also subscribe to a medical alert sys. whch has immediate contact names and numbers.

@artscaping, I love the pic of this baby and also the wonderful story of Jay’s help in reviving it and others. Is Jay a son? Grandson? Maybe he is a bird whisperer??? So nice!

Jump to this post

@fiesty76. Hi there, yes that is a great man, Jay Adam's who just happens to be my lifetime partner and is 73. Actually, he does have a grandson also named Jay. It is kind of crazy when both Jay's are in the same house. I know it is an honor but it is also a pain. Jay (grandfather) and Jay (grandson) are pictured here.
https://connect.mayoclinic.org/discussion/hey-there-grandmas-and-grandpas-opportunity-knocks/
Be happy today…..just look for the causes of happiness.
Chris

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@artscaping, Great pics of your two wonderful “Jays” and the older has such a loving countenance, can see your remarks are well placed, too. Not surprised small creatures feel safe enough to eat from his hands.

“Jay” is a special name for me as well. At 10 yrs old, I “claimed” my first nephew, Jay, and baby to love as “mine”. We were exceptionally close until his death of an unreasonably premature heart attack. Now whenever I watch blue jays frolic in my yard it brings great smiles and remembrances of his joy to my life. Yes, each day truly is a gift and one to celebrate with gratitudes and smiles.

I'm looking forward to checking out this link and thank you for sharing it: https://connect.mayoclinic.org/discussion/hey-there-grandmas-and-grandpas-opportunity-knocks/

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