Interesting article about dying at home

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. 

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.  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 

Donna Faye said:

Something we need to talk about

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.  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 

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

Wish you enjoying the best things in life,

Suzy

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. 

unknown said:

just did all of this

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.

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

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. 

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

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!