I am a hardworking single mother of 3 boys. My mother is newly on home-hospice and I am an emotional wreck. She has been at deaths door on numerous occasions this past year. The doctors a few weeks back told us she would not make it through the night, but she did and is very much alive right now. She suffers from late stage COPD, Congestive Heart Failure, Pulmonary issues, Lupus and much more. She has been on oxygen the past 2 years and has had 3 heart attacks in the last 8 months. It has been a ride for sure. I love her, I am the only child who lives nearby and I am trying my best to take care of her & my 3 boys. Somedays I feel broken and exhausted, like I just need a break and other days I am riddled with guilt like I could do more. I also work full-time as not working is not an option, even with full time I struggle financially. I guess I just feel lost in this whole thing. I want to take care of my mom, I want her last days to be filled with love and family. I don't want to get "the call" at work. I don't want her to suffer but I know its not up to me. Its all up to God.
What are your hospice stories? Did you lose your parent(s) quickly after going on hospice?
And it sounds like time to call a lawyer about social security... too many able bodied young people draw checks for your mother to still be waiting.
Hospice talked to us about my brother when he was critically ill and the hospitalists thought he had terminal lung cancer with brain metastasis.
The first hospice yelled at us that we needed to understand that our brother was DYING. We told them where to go.
We got the doctor to have another hospice come in and they were so nice and understood our pain.
They said that I would be doing total care for our brother except the nurse would come weekly plus when needed.
An aid would-come twice ( or was it three times) a week for a bath.
a chaplain and social worker would be involved. All treatment would be stopped except palliative care.
I was not told that I had any choice (by doctors) ..: just what I had to do (everything. My husband had a stroke in January . It was now March) and what THEY would not do (allow further treatment).
It was a terrible experience.
Apparently my brother could have gone to his own home and I would not have had to lug furniture up and down stairs ( at age 75) to clear my living room for a sick room. And hospice could care for him there?
My brother was 1:1 care for many months, but by the time covid kicked in and my husband had another stroke, he was his usual feisty, “wait on me” self or close enough.
I want to say that when I got sick with covid and needed backup, hospice enrolled my brother (lung cancer history) and promised to come and take him to respite if I had to go to the hospital. A volunteer even called to offer to pick up groceries and cut my grass !
(we are all better now thankfully).
Next day I went to visit, he was asleep...I sat with him for five hours and no one told me they had sedated him. Every time I went to visit he was asleep...so I asked the nurse why is he always asleep and won't wake up when I call his name?
She said we medicate him as needed. What? As needed, he was not in any pain, so why. I pressed her when did you first sedate him...answer as needed...I am speaking English...when was the first time you sedated him? The first night he was admitted, sedated my father and starved him to death...taking away our ability to say goodbye properly...yes I am intelligent to know that he was dying...so let it happen naturally...they killed him before his time.
They even had me sign admission papers that once I reviewed it was not even for my father. They took away his ability to say goodbye...I was visiting him every day...an hour and half drive each way and sitting with him for hours not knowing they were killing him sooner than he needed to go.
So this is my second hospice experience. First one was a high school friend...and I was the only one who visited her every day and her hospice nurses did not care for her, they slept on the job when they were to be caring for her. The insurance company knowing she was dying and in pain, did not give a rat's a** about keeping her comfortable...she died being in a lot of pain...she was a registered nurse...she knew about her cancer, she got from working with chemotherapy drug...chemotherapy is a killer drug, which kills ALL cells in the body good and bad...so taking this drug...you will certainly die sooner than later.
I feel so guilty for allowing my emotions to make the decision to put him in hospice...if I knew they would kill him...I would have just kept him home...continue to care for him 24/7 like I was doing before. It was h***, feeding him through the feeding tube, changing and cleaning him up every 2 hours, but he would have had the opportunity of saying goodbye to loved ones!
I have sleepless nights of what it must have been for him...hearing my voice and not being able to answer me...hearing is the last thing to go. I cry every day and August 22, 2020 was one year since he was forced to die.
God help us in our hour of need!
As time progressed I was getting very little sleep at night and the palliative care nurse suggested I transfer him to Hospice Care where he could have 5 days of respite each month and give me a break I said he wasn’t ready for hospice and she said it didn’t matter he would be evaluated every 3 months
So I agreed but the place he was admitted to that had an opening was not close to home and the one that was had a long waiting list
He went to the available facility, the last words he said to me as he was leaving were” aren’t you coming with me?” 😞
I tried to reach facility to speak with Dr the next day finally received a call 48 hours later that they needed to medicate him and if he didn’t respond they have to transfer him to Hospice Care from Respite
long story short when I received the records they continued to medicate him he never did wake up and with out fluids and nourishment he died on day 6
The worst decision of my life !!!!!!
At home he was confused but he was walking talking eating showering with supervision and was continent
He was to be home for his Birthday Celebration but died at Hospice House the day after his Birthday 😥
I am so sorry you were not able to have the comfort of a real “hospice”.
But YOU were NOT the sinner. Please do not wear that guilt.
It is time to move on without guilt as your loved one would want you to do.
All hospice is not bad, even when the patient is at home. I have seen several of them at work with family members. Your friend embodies the spirit of a true “hospice”.
My home hospice experience was awful. She lived 9 miles from the hospice organization associated with her hospital. It was a struggle getting someone to the house beyond the allotted hrs.
Her last hours were on a Sunday night and while I spent many conversations on the phone with them at 4am, they said they would not come until the new shift at 8am (and the hospice worker arrived at 9am hours after she passed.) My mother had a fever of 110 & died in excruciating pain. Hospice insisted I could not give her more morphine and suggest I rub the headache medicine, like Tiger Balm, on her forehead.
Having been through it, I tell all my friends that I would have no problem (now after living thru the ordeal) being the Angel of Death for anyone that needs it. If I had it to do over, I would have given her all the pain killer I had so she could pass pain-free. When the hospice aid came in the morning after she passed, she had me empty every bit of morphine into coffee grounds. My mom should not have died in pain.
Hospice was paid $3500 dollars from Medicare for that final day to basically fail her in her last moments. Weeks later, I got my local state congressman to look onto it how they bilked Medicare with S#itty service. Nothing really came of it, but the state rattled the hospice's cage enough that I hope they improve their Standard Operating Procedures.
I too worked, but I paid a certified CNA friend out of my pocket to help me everyday too. About $20 an hour for a few hrs a week. (Sell some stuff on facebook marketplace and ask your friends if they know a CNA and get yourself some more support if your hospice provides limited visits like mine did.) My friend came at 4am too when I was at my wits end that final night at no charge. I am forever grateful for her being with me those difficult hours.
God forbid your mother passes on a weekend after hrs. Give her all the pain meds she needs if this happens, in my opinion. My biggest regret is not doing that.
I know it's a long waiting game filled with guilt and anxiety. You can't avoid that, it just is what is. I forever looked for signs the end was near. Her fingernails changed the last week. I don't remember if they were more purplish or more white, but it was however google said. She had the "death rattle" the last 2 days. You'll know when you hear it, but they don't always have it.
Cherish whatever lucid moments she has and tell her all the things you love about her over and over everyday until she dies. Tell her thank you for all the things your grateful for because it will make you both feel better. Take some time everyday for yourself in the meantime, even if it's just a 1/2 hour in a warm bath, or in your back yard, or in the dark before you sleep. Allow yourself to cry. This is hard and unfair. Get a babysitter or a friend or family to take your children someplace- even if it's a park, the back yard, or a fast food parking lot so they can be kids and laugh and that thought will make you happier. If you belong to a church or the PTA start telling people you need help. People want to help, you just need to vocalize what you need. (Maybe a home cooked meal?)
You are going to get through this. It sucks, for sure, but the 1 thing you can absolutely count on is that things will not stay the same EVER in life. So this too shall pass. Even if you are mad at God, start talking to him in your head, everyday, no matter if it's ranting, pleading, or being grateful. Maybe even start a journal and write all your crazy thoughts in a notebook and burn it when she dies- because you need an outlet to get your thoughts out of your head, but you do not need to keep those crazy thoughts.
As you say, you may get "the call" while you are at work. Let go of that guilt and try to be present in your work as much as possible. It is out of your control
my mother’s was during Covid, we brought her to my daughter’s home to allow her to pass with family. It went smoothly although a little more difficult due to limitations from the pandemic. She had severe dementia and was pretty out of it but conscious until the last day. She was in hospice a week. She would have hated being like she was so in both situations IMO it was better to see them pass comfortably than extend not really “life “, just existence. IMO you need to think what’s best for them , not what others want. It’s been 5 months and her interment is today. Waiting for that ( due to brother in law’s poor health) was a huge mistake. It’s just ripping a bandage off a partially healed wound. If she passes have the funeral ASAP.
i do want to add, my parents were well off financially and had the means to afford 24/7 home health aides. That is not included in Medicare covered hospice . Our covered hospice included a nurse who visited every couple days (or as needed , may be less in your case since my mom was actively dying) and an aide iir 3 times a week for one hour. We paid almost $5k for home health aides for the week she was in hospice.
In Jan. 2010, my widowed mil came to stay with us as she recovered from a stroke. At the time, I only knew of one home health care agency, a faith-based agency, and we signed up with them for home health care. OT, PT, nurse and nurse's aide visits all occurred in our home. She was progressing great and in April I allowed her more freedom to dress and care for herself with the expectation of a weekend at her home with her other son. She fell while dressing, ended up in the hospital and then a NH for ten days. Horrible experience of her meds being dispensed wrong, or not at all, or other meds given that she was not supposed to have being given. We got her back home and she tried real hard for a few weeks but then on a doctor visit she said, "I'm tired, I'm done with trying to get better, I don't want any more exercises." He mentioned hospice to her and she said, "No, that's for people who are dying. I'm not dying." He said that if she chose to stop all the things she's been doing to get better, then she most certainly was choosing dying. She agreed then to hospice. The home health agency also offered hospice care so the transition to hospice was relatively easy except for the fact that a whole new team came in. She was on hospice for three months before passing. She loved her nurses (who came every other day) and her aide (who came the other every other days) and we felt very supported. My mil passed peacefully in our home. It was the perfect hospice experience.
Nine years later, my father was failing to adequately care for mom and their pcp wanted both of them to go to assisted living "or else" he was going to ask the state to step in and remove mom from the home. We asked about hospice and he was agreeable to that. We used a hospice agency that was not faith-based. They were not as hands-on. My sister and I are hours away and did our best to be there for the intake interview and social worker visits, usually by speaker phone. I never felt my parents were honest with nurse when she came -- they hid mom's falls (unless there were visible injuries), my dad did not mention things like her refusing her meds or the amount of food she ate / didn't eat, they minimized everything. And the nurses were never consistent with day and time and even who came. So I never felt the nurses ever really got to know her. When she began to have a sudden personality change, this is when this agency dropped the ball big time. They should have considered a UTI. I should have been more aggressive and demanded that they to a culture for UTI since my father was unwilling to "tell them how to do their job." Any way, she did have a UTI that progressed way too far for too long and she ended up her last two months as a totally different person, had to go to a mental health facility, then a hospital, and finally to a NH where she died. The last day my father saw my mother at home before seeing her again several weeks later at the NH, she was able to dress and feed herself, prepare her own food if it was simple, move around the house on her own, but she was also at that point totally out of her mind. When he awoke to find her with a butcher knife poised above his chest, that is when he called the police, sent her to the ER, and told them that nope, after two previous visits to the ER and nothing was done for her, he was not picking her up this time. That's when she ended up in the mental health facility, the hospital and then the NH. When he saw her again a month later, she was bedridden, couldn't eat, couldn't communicate, not totally aware of us, and looked like she'd lost thirty pounds. He saw her and said, "My God, what happened to her?" She died there a few days later.
So -- two very different experiences for me. One was wonderful and the other ended horribly. I really think it depends on the agency as well as your level of involvement.
If a person does not meet the qualifications today, you tray again in a month or so. Conditions change and any decline may then make a person eligible for Hospice.
the other option if a person is not found to be eligible for Hospice you go on Palliative Care and when the time comes that the qualifications are met it is t=easy to transition to Hospice.
Hope this helps and prayers for you!
2) While it is all fine and well to talk about religion and engage in it and believe in it, that's a lot of blather up there in your post for people who DON'T practice and religion, or one different than yours. My mother hasn't been near a church in probably AT LEAST 50-60 years, maybe longer! She ain't gonna be communing with any chaplain or lord, even if we could get hospice, which we CAN'T.
I already told the funeral director we don't need a chaplain for her burial, when the time comes. Everyone in her generation, both sides, are gone. Several in my generation too. She lost touch with most of them YEARS ago, so I don't expect anyone at her burial other than YB, my daughter and me (OB isn't local, didn't show up for dad's burial, so I don't expect him this time either!) None of us are "church-goers", so I really don't want someone from some random church there. To each his own. I have no issue with anyone being religious, or even mentioning a few words, but your comment was a bit much for us atheists and agnostics!
For Profit
Not for Profit.
The one I chose happened to be a Not for Profit Hospice.
I am not sure if that is what made all the difference or not.
But just like any service that you are going to research you should "interview" more than 1.
Medicare has strict guidelines on how often a Nurse visits a patient.
Other "services" may or may not be required and the more services that your Hospice offers the more of a benefit to the family and the patient.
The Hospice "Team" includes the Patient, family and that can be whoever the patient says is family. The Nurse, Social Worker, Chaplain, CNA, doctor, and any other service art therapy, music therapy, volunteers. The team must meet on a routine basis and discuss the patient, any changes and care plan. I believe that the meetings and discussions are one of the reasons that I feel that the care is better than if you were still with your original doctor.
I got the help I needed
I got the supplies I needed
I got the support that I needed
I got the equipment I needed
I got the education and emotional support I needed
...wow this sounds like it is all about ME!
My Husband got...
Someone to help shower him a few days a week
A Nurse that would come in once a week to check on him
He got a wife that was more equipped to handle his decline
He got a wife that had less stress because I had what I needed to care for him
He had another set of eyes that might spot a problem before I might.
I honestly think he had better care from "our" Hospice Team than he had from most of the doctors that has seen him before Hospice.
I am currently a volunteer for the same Hospice. Just my way to give back for all the help and support they gave me. (I started volunteering while he was on Hospice and have been a volunteer now for 6 years. )
When I placed her in an MC facility, she immediately was placed under hospice care. She was in their care for 15 months when she became comatose and died 14 days later. During that 14 days, hospice was there at her bedside 24/7. Although she was completely oblivious to her surroundings, the hospice nurse would brush her hair, massage her legs and arms, keep her dry, move her so she wouldn't develop any sores and even read to her. What more could I ask. The beautiful thing was that she died peacefully and pain free.
That's my hospice experience and I'm grateful for it.
In the end he was in a wonderful end of life facility. I thanked them for caring so much for sacrificing day after day to care for their patients. I saw them give exceptional care to everyone who walked through the doors.
The nurses touched my heart the deepest. You see, I had a complicated relationship with my brother which I don’t care to share the specific details about any longer.
It would only make me sad to relive and I am no longer held hostage by my past relationship with him. I fully realize now that due to pain that he endured in his life it caused him to become a broken man.
All of us have our ups and downs with family members. At one point I wasn’t even sure that I could forgive my brother but now I am finally at peace.
The relationship wasn’t all bad. In fact, deep down in our hearts we shared enormous love for each other with good memories and not so good. I choose to remember the best parts of the relationship. I am now able to let go of past hurts.
I owe so much to the hospice nurses who are truly angels in my opinion. They brought me peace of mind that I did not think was possible.
Three of the hospice nurses came to me and told me that my brother had expressed deep sorrow and remorse to them for hurting me.
My first thought was, why couldn’t he tell me himself, then I realized that it was simply to painful for him to talk about it to me.
The nurses spoke to me about people not having to die with shame. I broke down and cried.
It simply didn’t matter anymore that he told them that he was sorry instead of me. I was able to throw my pride out of the window and completely forgave him.
What a wonderful gift these incredible nurses gave not just to my brother but to me. I will always be grateful.
They expected nothing in return from me but after my brother died I asked the receptionist what I could give them as a token of my appreciation for their kindness and special care.
The receptionist was lovely. She gave me an excellent suggestion. She told me that often the nurses ordered food in because they didn’t have time to eat out and suggested restaurant gift cards. She gave me the names of their favorite spots to eat and I sent flowers for the other staff and the gift cards to the nurses to enjoy a few meals.
We take so much for granted in life and I bet if we walked in the shoes of a hospice nurse we would see things from a whole different perspective.
My mom is now being cared for by hospice in my brother’s home and I have no doubt that she will receive excellent care.
Keep in mind that oftentimes loved ones do NOT want us to witness their actual passing, so they do so when we are not around. If your mom passes while you're at work, or while you're sleeping, keep in mind that was the INTENT all along. Nothing you could have done to change it, either. Oh, people will say 'hogwash', humans have no control over such things. To that I say hogwash. Life is eternal and death is only the portal from one level of existence to another. Once her transition is complete, you will feel relief, as I did when my dad passed, because she'll be at peace, finally, and out of pain & whole once again. When I read the eulogy at my dad's funeral, I rejoiced in the fact that I knew he was dancing with his siblings as I spoke, able to jump for joy once again instead of being riddled with brain tumors and a wheelchair. THAT is what you need to keep in mind.
My father had hospice for 19 days before he passed. I am happy I made the decision to bring them on board to the ALF where he lived with my mother (who's still alive 5 years later at almost 94). They prevented him from suffering and from getting agitated during the transition period, so he was able to do so with ease and rather quietly, all things considered. For that I will be forever grateful to the team at hospice. The chaplain was also quite wonderful; he married my son and his wife in front of dad's bed in their apartment. My son knew my father wouldn't be able to make it to his real wedding the following month, so he pushed up the ceremony and had it in dad's room on Father's Day!! My father was semi-comatose for days prior to the wedding. As SOON as the chaplain stood up and the bride & groom walked down the 'aisle', my father opened his eyes and a wide grin split his face! Honest to God. He stayed awake for the entire ceremony, was able to kiss my son and his new wife, and to tell them he loved them, and they were able to have those last few moments together. Soon afterward, he closed his eyes once again and passed away 12 hours later.
Wishing you all the best of luck with this difficult situation, my friend, and sending you a hug and a prayer for peace.
I was grateful for the nurse's input and supervision and for the Hospice publications which helped me understand what to expect. I was disappointed and scared not to have any hands-on help during the last few days or hours of my husband's life. The protocol was to call the Hospice switchboard if things became unmanageable and perhaps they would call back several hours later. It took me several months to get over the trauma of those days.
If I am ever a Hospice patient myself in my last days and hours, I would advise my family to place me in a Hospice facility and let professionals deal with the "active dying.". They do not need to experience the fear and helplessness I felt.
The severity of her CHF, was getting worse , but she refused to believe anything was wrong with her, until around May. Four trips to the ER already in 3 months, due to inability to breath (fluid collecting in the lungs). She was bedridden 24/7 at this point, She refused to take meds because 'they were too expensive'. That's when I pleaded with the case manager - 'please - do something . .hospice . . . something' I had no legal control (tried for a year though) My mom accepted Hospice because she could stay home and Medicare took care of the costs.
While all this is happening, I'm back home and afraid to visit because of Covid. She had rotating caregivers 24/7.
Hospice was in place for a few weeks before she died. I had extreme difficulty communicating with her on the phone, but could still get a raspy 'hello' and a few other words. One day a caregiver called me and told me my mom "keeps calling out your name". That I knew, was my que to drop everything and go visit her - Covid or no-Covid, and I knew it would be for the last time.
Seeing her just lie in bed, trouble breathing, uncomfortable with anxiety. All I could do is sit by her side, ramble on about a few things - show her my latest pictures of the kitties, my husband, the house . I even played a few songs for her on the piano. I held her hand and had the 'mother daughter talk'. I told her I loved her no matter what - no matter what our disagreements were, I was still her daughter. When I had to leave, I held her hand, kissed her on the forehead, and told her "after I leave, you can stop pretending you're sick and get up again and boss the caregivers around again (wink wink to the caregivers). She nodded and squeezed my hand , I said 'I love you' again. I managed to get a raspy broken "I love you" back from her.
Mind you, I never remember her ever telling me 'I love you' to me. She was that selfish narcissistic kinda mother, who really didn't know how to love me. I don't think she really liked me my whole life. But thats another book.
As I walked out the door I told the caregivers to call me when they know the moment she's gone. We all knew she was on her last hours.
I got in the car, and the tears came. And I prayed for GOD to take her back sooner rather than later. I also expected her to pass away in her home - which is what she wanted.
Alas, I get a call the next evening from paramedics - to rush her to the Hospital. I was angry that this had to happen. That night I had a long talk with the ER doc. He said that they did the right thing to bring her in. She had no DNR, and I asked the doctor to make sure she is comfortable, but do not preform CPR if her heart should fail. It would only cause more suffering. He agreed. They intubated her that night and of course, I didn't sleep very well that night - in fact I cried much of the night as she worsened over night. The removed the tubes early in the morning and administered the heavy drugs.
She didn't get to die in her home.
That's my Hospice story.
And sadly in my case, because my husband wanted to die at home, there was even less that they could offer, as I was told that only in their facility could they give him the proper medications to sedate him and relieve him of his incredible pain, so my husband suffered greatly in pain, and then came the agitation, and in his 6 weeks of his dying process, he actually had only one day where he seemed peaceful, other than when he actually died. None of the medications they gave me to give him in the home seemed to work for him. And I was left to deal with all that by myself, as a nurse only came once day(in the last 3 weeks of his life) and that was usually only to change out his pain pump. In fact there was one day last week that my husband was in what hospice calls "crisis", and his nurse was here, and she didn't want to leave me with him by myself, so she called her office to see if someone else could see her next patient for her, and was told no, she would have to leave to see her next patient. She felt bad, but had no choice. So make sure that you are pleased with the agency you have and make sure you keep on them, to make sure your mom gets the help she deserves. God bless.
Again thank you for sharing and God bless.
I fired the first hospice company we had for my dad, and he was only on hospice for a little over two weeks. The first company seemed OK at first, but they weren't returning calls for 24 hours. When I asked the social worker about what sort of support they give the family and was told, "This is not about you," I was done. I fired them on the spot, hired another company, and to the first company's credit, they coordinated with the new one to trade out all the equipment at the same time so my dad would be the least disrupted.
The new company was incredible, and the day I called and said, "I can't do this anymore," they were there within an hour and didn't leave until he died the next day. I'd been caring for him and my mother who has dementia for six weeks, and I just hit the wall head-on.
I know that Hospice will have told you their mission, and your doctor will have explained what hospice is. It is now recognized that your Mom is dying, and that this is not a matter of if, but more a matter of when. That there will not now be any hope of cure, but there will be concentrating on the quality of life, on pain control, on prevention of air hunger.
My own brother died very quickly after hospice came. He was brought home from the hospital to die after suffering, at 85, a bout of cellulitis that went systemic in the blood. He was septic and antibiotics were not only not touching the infection but causing horrific diarrhea. He begged to be left alone and to go "home" to die. Hospice interviewed in hospital and he went home with their care to his beautiful rooms at his assisted living with the support of the workers there and hospice, in covid times. He was heavily medicated because of pain, and distress, and the level of medication needed for comfort almost certainly made death less drawn out by a week or so, but was a great, great mercy for him. He was kept very comfortable. His main nurse could communicate with him through hand squeeze and he would squeeze to indicate he heard him. Other than that he was kept below the level of dreams and distress and air hunger with sub- lingual morphine. He died and I will tell you for me it was a relief in many senses, not to have to suffer for him, watch him suffer, know there was no way out. I thank all the powers that be for hospice. Basically that was my experience. Many others have hospice support and patients pull right on out and live. I would say, with your Mom's awful conditions that isn't something to be hoped for.
You are doing your best. I am so relieved that your Mom has hospice to help her, and to help you. Celebrate her long life, not her lingering death. When you let go of the severity of your own loss you will find she never leaves you. She will always be with you in your heart and soul. Wishing you both the best and safe journey.