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Interesting article about dying at home

CheeseQueen57's picture
CheeseQueen57
Posts: 811
Joined: Feb 2016

I‘ve already decided that when the time comes I’m going to an in-patient hospice. I understand Medicare fights you on it. Perhaps my long termed care insurance would cover. I know my husband could not deal with the stress of caring for me at home nor would I want to burden him with not only the with the day to day care but with the emotional stress that family members never get over. 

Interested what you ladies think. 

https://www.nytimes.com/2019/09/03/well/live/is-dying-at-home-overrated.html

oldbeauty
Posts: 192
Joined: May 2012

I'm very sympathetic to that view, mainly, like you, out of concern for my husband's well being.  This week, we have a meeting with an agency that our estate planning lawyer suggested.  I will be interested in finding out whether they will act as my back up health care carer of attorney.  I would like to have someone to take the load off my husband if the end of the road is difficult. I'm sure they can also be relied on to find an

in patient hospice close by. My father spent his last days in a gorgeous, new hospice and I was sold on the idea then.  It made a huge difference for my mother who slept for 2 days after he was admitted.  She was exhausted.  I hope more ladies weigh in.  Subjects like this are probably more on the minds of ladies who are in the recurrent cancer club.  Thanks for posting this.  I read it the other day.  Best wishes, Oldbeauty.

 

 

Northwoodsgirl
Posts: 536
Joined: Oct 2009

Hospice is a much needed service and philosophy of caring for the terminally ill. 

Unfortunately, for most of us it will be a question of what one can afford for end of life care.

In the US the majority of homecare is provided by family and friends as uncompensated health care. This typically falls on the shoulders of middle age working daughters right in the prime of their careers. A sad fact....husbands are more than willing to allow their children to be the caregivers ( generalization with few exceptions based on what I have read and observed). 

I cared for my Mom as she was dying of uterine cancer back in 2005. My sister and Dad helped too. My brothers offered help but preferred to leave caregiving to the women. I was working full time and soon found it to be too much despite my being an RN.

We kept my Mom at home as long as we could but eventually caregiving takes it’s toll on the caregivers. My Dad paid $ 380 a day for my Mom to be cared for the last three weeks of her life at a private hospice home. It’s probably more like $700 per day in a private hospice today. In-home hospice care is still primarily the responsibility of family and friends because when one turns their Medicare into Medicare Hospice benefit there isn’t enough benefit coverage for having an Homecare Aide or PCA to spend 24/7 with a dying family member. 

Sometimes a patient will be admitted to inpatient hospice in a hospital to allow for respite for the hospice patient’s caregivers- however that is usually just for a few days. Then the hospital hospice wants to get the patient back home. It reminds me of how young parents with sick children that require tube feedings, wound care, IV therapy can’t understand why the health insurance company won’t pay for round the clock nursing so Mom and Dad don’t have to take time off from work. It is considered custodial care if there are no “skilled” therapies or required interventions. 

Definately planning for end of life care is a personal decision. Like so much in healthcare it becomes a matter of both personal preferences, access, availability and cost. 

Armywife's picture
Armywife
Posts: 312
Joined: Feb 2018

I know we all need to think about this, but it sure makes my heart hurt. I really think I am more afraid of uncontrolled pain than I am of dying.  My cousin is a hospice nurse and has encouraged me greatly, but I had not considered the burden that this will put on my husband and that we may not be able to afford the help he would need.  I also made the mistake of reading a book lately that detailed a woman's battle with endometrial cancer and her death a year later.  Her husband described in detail the incredible pain.  When I was first diagnosed, I went to see my regular primary care doctor about an unrelated thing, and she saw my diagnosis and said, "Oh, sh*&, that's a really painful death."  It's easy to let it haunt me.  Praying that we are all able to handle whatever we have to handle with grace and courage.  You all have been incredible examples of grace and courage to me!

Donna Faye's picture
Donna Faye
Posts: 251
Joined: Jan 2017

I believe I am one of the older ladies on this board at 79.6! I had to look into how I wanted to die 20 years ago as my cancer then was grim. I prepared to die but also had hopes to live. I did,NED. When cancer was discovered in 2017, I had the surgery but wanted to only do observation. However, with my children's input ( eldest is an RN), you ladies, and my doctor, I decided to do the standard chemo and rads. As many know, had a recurrence in 2018, and once again took the rads and chemo. I am doing well at this time, but I am beginning to have some of those long term effects - nothing too bad - but I have decided IF there is more cancer in my future, I will only do palliative care but am also looking at moving to a physician-assisted deliverance state. Self-deliverance is the term we prefer to use. Final Exit has wonderful newsletters that offer so much help in understanding dying in the US - and it is not easy. Many are not ready to look or hear these options, but it will bring more peace than you may imagine. My family all know my wishes and my plans. All the paperwork is done - PA, will, DNR, etc. I have already downsized several times and the children will have little to do except sprinkle my ashes in the woods where I rode my horses so happily for so many years. I laugh with my grandsons about it as the 14 year old thinks I may change my mind at the last minute. Surprised I realize our age and our health condition plays into our thinking about our going home, and each one must come to terms in their own time and way.

 

For the past 7 years I have worked as a companion at an assisted living home, and I have learned so much from these wonderful women as they endure all they must. I have see various ways of caring: some hiring people, some letting one family member bear all the burden, some sharing the tasks. It has helped me to understand what I want and I am so grateful for this knowledge.

I thank you, Cheese, for opening the door. May you and every woman on this site live well and happy for as long as each can. May each of you find your own peace and enjoy every sunrise and sunset. Peace and love, DF 

suzycruise76's picture
suzycruise76
Posts: 97
Joined: Mar 2019

thank you for your beautiful post, you got me thinking....

Wish you enjoying the best things in life,

Suzy

DM_K's picture
DM_K
Posts: 51
Joined: Mar 2018

I would also want to go into a hospice facility instead of dying at home.  I'm single and my mom is legally blind so I wouldn't want to burden her with the stress, even though I know she would plow through with lots of love.  I have only one brother, and my aunts, cousins and friends are very busy with their own families so that's not an option either. 

Donna thank you for the beautiful sentiment in your post, peace and love to you too.  I always think of the song "Wildfire" when I see your posts, (it's a song about a horse).

Anonymous user (not verified)

this subject is so tough, I can tell you what I did.  And never sure I did the right thing, although, the doctors and nurses told me I did.

My mother was diagnosed back on January 22, 2019 with "dyastolic heart dysfunction."  I got a letter in the mail from her Cardiologist telling me she had possibly a year to live.  I never told my mother but my mother knew something was wrong with her.

She told me she wanted to die in the house, so I decided I would care for her and if I found she had passed away in the house, so be it.  From january to March, I and my husband too, took care of her daily and at night. 

we brought her bed down from the upstairs.  she could no longer climb stairs and as her heart got weaker and weaker, she began to experience delirium which I thought was the beginning of alzheimers but the Hospice doctor that came to the house told me she was losing oxygen to her brain so she began to "lose it."

She was very frightened because she told me there were people in the house that wanted to "drive her insane."  Little girls going and throwing red paint on her drapes and in my hair.  We got her a plan for food.  Meals on wheels and she did enjoy that.  we cooked for her and got her a microwave oven and coffee maker.

She spent most of the day sleeping but bathroom time was a chore for me.  I had to change her undergarments and her clothes.  I had an in home hospice nurse come but she refused to have her help so I had to help my mother to the bathroom and change her, clean up after her.

I scrubbed her floors daily because she would drop food from shaking hands, I did her laundry which smelled horrible, although I  never said a word and told her that her kidney function was going down to zero, she did not want to bathe, she did not want to take her of herself in anyway.  

I had her hair stylist come to the house and she did her hair, I had her sister and nieces and nephews come to see her but it was a  lot of energy that I didn't have but kept up to the point of needing to be hospitalized myself because the hospice doctor came and saw how bad I looked.

My husband has a rare spinal disease but he helped my mother in and out of bed.

Finally, we had to have social workers and private hospice people come to the house to see if they could admit her to a home so she could die with dignity.  she was in pain and we could not give her more than just pills like morphine and ativan, and they also gave her Haldol for the "people" in the house that wanted to harm her.

One day she fell out of bed and this happened 3x in one day.  On that friday evening, she fell into the hearth on the fireplace and nearly killed herself.  she was very aggitated.  they told me that the delirium was causing this and the medication was not working.

I bit my tongue and had neighbors actually put her back into the bed all the while as she fought them.  she knew nothing of what was going on, her vitals were just about nil and her upper eyelids turned purple.

I had no choice but to have her admitted to the hospital hospice that evening.  they told me she had about 3 days to live with the condition she was in.  I felt like a failure because I wanted her to die in the house but she could not.  i was greeted by strangers with hugs and tears.  They all told me I did the right thing and regardless of her sister who told me I was wrong, I had to do this.

8 days later, she died with dignity.  the hospice nurses were wonderful.  Always by her side and injecting her with stronger meds that we could give her.

Unfortunately, this was not the way she wanted to go but what choice did we have?  My Priest said I did the right thing.  I hope and pray I did.  

I would never say she was a burden, but it's the memories we take with us forever that impact our lives and the lives of our surviving loved ones.  I would never say no to hospice care, but if a patient can pass away with dignity in the privacy of their own home, I am all for it.

Just my experience.  I certainly wouldn't want someone to go through what myself and husband went through.  I have bad dreams about it all the time and wish she could have passed in the house, but with no recourse and no way to control her and not the proper delivery system of medication, we had no choice.

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1551
Joined: Jun 2015

Thank you for your post Ms Louboutin. I'm so sorry for your loss. I also had to make a decision regarding my Mom about 10 years ago. My sister and I were taking care of her 24x7. We actually had to rotate 2 days on, 2 days off for each other because my Mom NEVER slept. Just about killed my sister and I. Anyway, she had Alzheimers and congestive heart failure. We ended up putting her in an Alzheimers care center for the last 6 months of her life. She started falling down and she just wasn't safe at home with us. All this to say you did do the right thing for your Mom.

Thanks to Cheese for starting this thread and to Donna Faye for such a thoughtful response. 

This is a hard subject for anyone. I am also leaning towards an in-hospice care center. I don't want to have my husband or any other family member have to take care of me. It isn't fair and really isn't the best thing for all involved (in my opinion).

Love and Hugs,

Cindi

 

Northwoodsgirl
Posts: 536
Joined: Oct 2009

The ultimate act of self determination ( end of life options ) is being debated in Minnesota right now. There are 10 states or jurisdictions where physician assisted aide in dying is legal. 

The experience of Ms. Louboutin is not unusual. I am glad she shared the realities of helping her Mom’s wish to die at home. That was also my Mom’s wish - to pass away at home...but it just wasn’t feasible with only family members providing care. Many dying people develop “Sundowner Syndrome “ whereby they are awake at night and sleep during the day. When that occurs the caregivers become vulnerable to sleep deprivation. It actually becomes a situation whereby there are safety concerns for the patient and the caregiver. 

 

Fridays Child
Posts: 67
Joined: Jul 2019

Hospice is my preference as well.  We are fortunate to have a wonderful hospice facility here.  We have had a number of friends and two family members who went there for their final days, one of whom was a long time volunteer for them.  It is such a peaceful place.  Even though my mother was unresponsive when she arrived, we could feel that she relaxed once settled into her room there. I hope to be able to volunteer there myself at some point.

If you're considering your options, you might like to go and visit one or more of the facilities that might be available to you.  There are differences from one to another and you may find one that speaks to you.  It's a very personal decision for us, but making the choice ahead of time does relieve our families of some of the burden.  No matter what we choose, circumstances may alter what needs to be done.

 

 

 

 

Anonymous user (not verified)

same here.  Mother didn't know where she was going when the ambulance came to take her.  I rode in the ambulance with her.  she didn't even know I was there.  I had told the hospice nurse that came to the house, "please do not let her be aware of where she is going."  And he injected her with some heavy drugs.  she was speaking but it made no sense and we could not understand her.

Her last words to me were:  "Are you married and where do you live?"  It was absolutely heartbreaking to see my mother whom I've had for 61 years, not know who I am.  So that is the reality.  the nurses are so sweet and very caring and actually took great care of her.  She was clean, they cut her hair, changed her gown, and gave her some water every now and then.  these were things we could not do for her.  I do believe her passing was very graceful and very peaceful.

I saw her the night before.  they told me her breathing was very weak and shallow.  I kissed her goodbye and told her "I'll see you tomorrow."  although I knew there was no tomorrow.  About 5:00, we got the call that she had died 20 minutes before.

funeral home on the way to pick her up and the rest is history for us.  I miss her everyday, go to the cemetery when I can get out there and pray she is happy now and in peace with my father whom we lost back in 2002.

that's all you can do, ladies.

I think the decision is one each person with a terminal illness should make.  However, they can't always know what's down the road meaning, the care they will receive and the quality of the care of non-professionals such as myself.  at times, I just didn't know what to do1

MoeKay
Posts: 213
Joined: Feb 2004

I'm so sorry for the loss of your mother.  Your extraordinary efforts during her final months were truly admirable. 

I too vote for in-patient hospice, as I've heard only good things about the care and compassion they offer patients and family members.  I've been working on my final arrangements for a few months now.  I started with this process because I had read obituaries and attended services of several family members and friends in recent years and knew that some of what I read and experienced was not what I wanted for myself.  So I drafted my obituary, let it sit for a month or two, and then took a fresh look at it and redrafted the document.  In the past, I have seen obituaries where what I deem to be critical details were left out (family members and educational milestones omitted), as well as errors in names and locations.  I realized that because final arrangements are done under time pressure by grieving family members, mistakes and omissions are prone to happen. 

Thanks for starting this thread, Cheese.  It's something I believe we all need to think about, discuss with our loved ones, and memorialize in writing, hopefully very long before these instructions and plans need to be implemented!

MoeKay

Donna Faye's picture
Donna Faye
Posts: 251
Joined: Jan 2017

I had never known anyone over 80 until I started working at a CCRC. My dad died at 72 and my mom at 80, both from heart disease and both went quickly, no long term care needed. My brother died at 72 from cancer, but he had hospice at home and went quickly as well. When I worked with 90-100 year olds who were confined to their bed for years, I realized that I did not want that type of life and began to read lots of books and talk to my primary doctor and then to my family. My son is a nurse in Florida and he sees so many seniors and understands my position very well. I wish we had more hospice places but in my area, we have two and it is very hard to get a place. These posts here are so honest and help all of us think and plan. We are so fortunate to have this site where we can share our lives and our thoughts without censure. 

EZLiving66's picture
EZLiving66
Posts: 1357
Joined: Oct 2015

Wow, Susan, you've got a lot of us thinking. I applaud anyone who took care of their dying family member. I was lucky because my beloved grandmother decided when she was going to die. She was 93, prone to bladder infections and her bones were getting so brittle she knew it wouldn't be long before she would be confined to a wheelchair or a bed. She called me to come to the nursing home she lived at, told me she wasn't going to get treatment for the infection and was ready to die. I had all her power-of-attorney forms and knew what her wishes were and told her I would honor them and fight anyone who didn't want to. A month later the home called me, I met them in the emergency room and, of course, they wanted to give her antibiotics. She refused and I backed her up! I had to fight every step of the way to keep them from "saving" her. Within a week she went into a coma and even then I fought for her right to die in peace. It took about a week but (even after 20 years, I cry) she died. I miss her every day but I would not change a thing! 

I don't want to die at home. I don't want my husband to go through that - I just love him too much. I just wish this country could recognize our right to die with dignity. I'm hopeful that more states start to consider this. I'm not afraid to die and I have my funeral planned - even wrote a funny obituary but I don't to be in horrible pain before I go. 

Love,

Eldri

Anonymous user (not verified)

thanks for letting me share my story and sorry if I rambled.  

when I was first faced with this, I was told by my husband that there was no way we could do it, but we managed until the very last week of her life.

He had previous experience with my mother-in-law who died from colon cancer years before and he warned me how difficult it would be for us, but WE did it.  And I'm glad I got as far as I could go for her.

My Priest said "it would not have been good for you to find your mother dead."  And to be honest, I didn't care because that's what she wanted.  I just wish I could do more but aside from repeating myself, I could not.

He also informed me that "people" like relatives will judge me but they did not understand the whole situaiton.  they would come and criticize and then go home.  No one even my cousin who is a nurse, offered to help and she was retired with plenty of time on her hands.

Donna Faye's picture
Donna Faye
Posts: 251
Joined: Jan 2017

I reread the article today and then read the comments of others who had read it. When you have the time, do read the comments. I found them so informative and honest. I love England and after I read the comments on care there, I may move to England. I had actually planned to go there for a year to live with friends and travel the entire country. Then the cancer was discovered. I think that was one reason I was so bummed about the whole experience. But now am feeling good and may decide to just do it! 

Jairoldi's picture
Jairoldi
Posts: 214
Joined: May 2017

I too have cared for family members.  Many family members.  My mother years ago died of cancer - though I only assisted as I could, my father's next wife when she had brain cancer (I became her main caregiver as my father had early dementia), we were able to take care of her until she passed - she had 3 daughters and my dad had 3 daughters,  after she passed I had my father move in with me until he passed, at my home, from his frailty and dementia 18 months after he moved in.  We weren't able to care for my mother-in-law at home so she passed away at a nursing home, we were able to care for my father in law at home until he passed from COPD.

What I've decided is that every situation, relationships, pain, level of care needed, is different.  I've told my family, who wants to care for me at home when the time comes, that this is okay, until it isn't.  If I need more care, or for a longer time, or pain needs to be managed then please move me to a hospice facility.

As for paying for it I am so fortunate to have taken out Long Term Care insurance before I was diagnosed.  It will pay for in home or out of home care for 3 years.

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