Tell me your hospice story...

When my mother, age 95, fell out of her bed and started gasping for breath, I called the paramedics to escort her to the hospital She ended up having a pacemaker inserted and it was there that the doc informed me she had lung cancer. He asked me if I wanted to proceed with cancer therapy but I declined due to her age and health condition. She was released from the hospital after 2 days, and was sent home with hospice care. The attending nurse gave me some pamphlets to read on what to look for if the patient is nearing death. Many folks on this topic claim that morphine hastens death. However, according to the booklet I read, this claim is considered false. I was the one to administer all the drugs for pain and anxiety. The nurses have been very caring and are extremely professional. My mother's nurse only comes 1 time a week to check her vitals and ask questions regarding her health issues. She will order my mother's meds and pull ups , lotions, bed pads, and tubes of cream or lotion for her extremely chapped skin. The CNA comes 2x a week and cleans my mother's bedroom and washes her hair and body. Mother also has an excellent social worker who offers whatever resources necessary to help me care for her. A Chaplin will visit as requested. The parish priest has visited once in the 3 months she's been on hospice. All in all, hospice has been a great experience and they are available 24/7. They are kind and listen attentively to all concerns I have. So it's a thumbs up for our situation. Only problem, I can't just leave the house with my mother unattended to for fear she may fall. So my son will try to fill in for me when I have errands to run. Overall, hospice is a wonderful team of caring and highly skilled individuals. Good luck to you, Tamara.

Put her on hospice and get off the endless merry-go-round. At this point, quality of lfe matters most

My mom was put on home hospice in March of 2019 after being diagnosed with pneumonia and chf. We went home on a Sunday and hospice actually met us at the house with supplies and caring staff members.
My mom actually improved under hospice care for awhile. We hired individuals to be with mom when my brother and I couldn’t be there. Neither of us lived locally. By June, she was actually doing almost normally and hospice considered removing her.
Starting in September, she slowly started declining again. Hospice had a wonderful aide that came 3 times a week and nurses came twice a week.
My mom stopped eating, drinking and being verbal on a Tuesday this last March. She passed on Friday at home peacefully with my brother and I there as well as a couple of caring friends.
Hospice was there as needed throughout the last week of her life and have been there for us over the last 6 months.

I just wanted to thank everyone for their kind words, advice and suggestions. I guess my original post was just a tired mama venting but your incredible stories have really helped me in more ways than one. Thank you again.

I am a self-employed, well educated, private caregiver. Senior's with Alzheimer's/Dementia. I love what I do, and most of my senior's end up in hospice. My husband was on Hospice for the last week of his life. I brought him home on a Saturday, for the next three days, I shared his time with his two children, his step-daughter - my child. Each had private time with their daddy. But on Tuesday, it became "our time." We shared everything we felt, thought, or dreamed about. On Wednesday evening, he said this words to me; "I should have married you when I first met you" - (we dated 10 years) and "I regret I have to leave you now." Even writing that brings tears - those were the last words he spoke. He went into a coma, and passed on Saturday morning. I was laying in his hospice bed with him, holding him, when he breathed his last. He's been gone 10 years, but his passing made me put the rest of my days to use. That's why I do what I do - in honor, admiration, respect, for all who are in the stituation of having hospice in their lives. I have great respect for all who are passing, for they do so with grace and dignity.

My father passed 2 years ago at 100. My doctor is director of a home hospice. My father had copd, bad kidney and damaged femoral nerve, so last 5 years had to use lift to get in wheelchair.. They supplied morphine and had nurse and aid come 3 times a week. It was hard watching his body fail. He worked till he was 91.

My mother passed away at 98 last year, She had stroke a few years before, never regained use of right leg. She was scared of lift, kept getting pnemonia and had dementai. Sometimes she was worried she would be late for school. She got pneumonia again got her to hospital. Talked to my doctor and we
put her in the hospital hospice where she passed a few days later.

I will always be grateful that I got to be there for them in their last years. I was in room with them when they both passed.

Before I read the other responses, I want to reach out and hug you. You have more on your plate than anyone deserves. Do not feel guilt. It IS up to God. Your mother has survived amazingly well. Home hospice is a good move on your part.

My mother had lung issues as well. She fainted and was taken to the hospital, where she woke up and was ready to go home. Instead she stayed 5 days, and they decided she wasn't getting enough oxygen from her home concentrator, so we swapped it out for a bigger one. The hospital doctors hemmed and hawed to us about her heart failing because it was working too hard to accommodate her lungs. We called in home hospice. They couldn't have been kinder and they were the ones that told us she probably had less than a month. A week later she passed away in her sleep overnight. During the week that hospice came to the house, they did things like wash her hair, which she so appreciated. It had not occurred to us. It was still a shock when she died - she got up and dressed herself every day and she seemed there, but she didn't want to eat and it was hard for her to talk. Later I found a pamphlet from hospice which talked about what a person goes through the 2 weeks before dying. The signs were there. If I'd been paying attention - and not so task driven - I'd have seen them. My mistake was not taking a family leave of absence from work sooner so I could have focused on her more exclusively.

One last note - they gave her morphine on two successive nights to make it easier for her to sleep. I have mixed feelings about that. I'm sure it contributed to her passing a day or two sooner. But it also may have been easier on her. I never wanted her to have to fight for each breath. Anyone from hospice is welcome to comment.

elaine1962

I can only answer your question based on " EXPERIENCE" not on "OPINION."

With "EXPERIENCE" with my family member, they were alert with no pain or breathing problems.

Disgustedtoo, your mom was probably denied hospice because it is only suppose to be for people who have under 6 months to live, according to a doctor. A doctor has to declare someone terminal with under 6 months to live.

we had a wonderful experience with hospice twice. Once for my father in 1998 and once for my mother n law in 2019. They both received morphine for the pain at the very end.

elaine1962

To answer your question as how do I know if a person is in pain or not ...

You are referring to a family member whom I stated had no pain? Correct?

She was as alert as you and I and she said she wasn't in any pain.

As I said earlier, our family has had positive experiences with hospice. I would like to emphasize that it is a business, some for profit and some non profit. My best advice is to do lots of research before committing to a particular hospice organization.

Best wishes to you and your family.

Hopefully your mom was assigned a social worker. Maybe they can help your mom be placed at a hospice home. This was a big struggle for me when I was caregiver to my late brother and I was caring for my two boys and mother as a widow. I could not continue to keep it up financial or physically to have the needed assistance while he was in the home. They finally worked to have him placed in a hospice home. It allowed my sanity to come back. Then my mom's health deteriorated after having 2 strokes and could no longer walk. She had dementia and a bunch of health problems that she got where the doctors said it was nothing else they could do. They would not approve my mom for a hospice center unless I paid for some of the cost (never heard this because they did not do this with my brother). Because my mom was bed ridden, and I knew I did not want her to die in the hospital, I agreed to let her come home. Thank God there were some of her friends who came by to sit with her during the day while I was at work, they were able to let in the nurse and person that would bath her. It was a struggle on the weekends with my kids busy in activities and having my home hospice mom at home. The social worker saw how exhausted and drained I was after 6 weeks, and she was working on getting my mom moved but my mom passed 2 weeks later and then my brother passed 6 weeks after my mom who was at a hospice home. I felt bad that I did not get to see him as often because my mom was at home. I would say, both had their pro's and con's. I liked daily that I could check on my mom at home. My kids could see her and try to get a response or smile from her. I appreciate that she had friends who offered to come and sit and be with he during the day so I could work. I eventually hired a caregiver for the weekend for a few hours so that I could support my kids in their sports. The hospice center was great. I feel my brother got good treatment up until my mother passed. I think they felt he lived longer than he should have and they moved him to a bad room at the end of the hall where he had been in a nice room with a window and view. The hospice center would call me of changes with him and it gave me some peace to know that he was being looked after when I had to travel. I pray you that you find help to assist you with your mother. You have to be there for your son's and being a caregiver and parent can be taxing on your physical and mental health. I know for me after I buried my mom and brother, I got so sick and my doctor said physical exhaustion..

OP - You do seem to be stretched a bit thin. Juggling 3 kids, a home, a full time job AND feeling guilty you can't do more for your mother?

There's no mention of who is covering the cost of care-givers while you are at work. Does her income/assets cover this or are you paying for the help? You do mention struggling financially, so hopefully that doesn't mean you are paying for the hired aides! If she has no assets and little income, she may qualify for Medicaid in-home care - it isn't full time, from what I have read, but it could help by reducing the expenses and perhaps allowing you to use that savings to get more help and to get a break! It sounds like you *really* need one.

Tamera, if you’re still here, God bless, I apologize that your need for support has become so off the rails and I won’t contribute to that any longer. I do want to share a few thoughts from the answers you’ve received. My dad’s hospice nurse and I discussed the bad reputation that hospice often has, she was well aware of it. She said as most of their patients decline and die, it was natural for people to look to them for blame, after all someone enters their care and then dies. The relatives and caregivers weren’t thinking it would be so soon, or that it would happen as it did, or sometimes just denying it was going to happen at all. So they lash out at hospice. Add to that they use big gun meds, and that’s seen as hastening or causing death. She said when a person's body is naturally winding down, pain and anxiety comes in many forms, the meds relieve that, so they’re seen as making death happen rather than the person is dying naturally and the meds are ensuring it not be painful or riddled with anxiety. I’m grateful my dad had meds to keep him calm and at peace. I have no doubt all hospice providers are not equal, it may take some shopping to find a good one. That’s where a hospital social worker may be of help. And we did have outside help in the last week, and contrary to what anyone might think, they cared for my dad with the same attention and support his family did. Actually, some of their care was better than family was capable of doing. I wish you the best in finding your way in this, and peace in the storm

Tamera - I so understand what you're going through. My mom is also in end stage CHF and began at home hospice about a month ago. Her ejection fraction has been so low that her doctor remarked he was shocked she didn't stroke out. Her pressure hovers 90/60, going as low as 80/50 when she's sleeping. I have had to give up working because she's such a fall risk, and she can't do most things for herself, like get herself food, etc. She can still get up to go to the bathroom; if that changes, I am going to have to re-evaluate the living situation, because she is way to heavy for me to be able to move on and off a toilet, or even a commode chair.

I, personally, have found hospice to be really great. But, really my friend, it doesn't matter if I find my hospice experience great and someone else had a horrible experience. Some hospices are dreadful, I'm sure; and I'm sure there are people out there who will never be satisfied with any service their loved ones get. What matters right now to you, in your situation, is how happy are YOU and your mom with them? Are they supportive? Are they kind? Are they living up to their obligations? Are they making the situation easier? You are always, always going to have some a**hole questioning why you did this and why you did that. Why did you allow hospice to administer morphine? Why didn't you put mom in a nursing home rather than keep her home? Why didn't you call hospice sooner so she wouldn't have suffered? And so on and so forth. It's the opposite side of the same coin as raising kids - you say you have 3, you MUST remember the early days of infancy and toddler-hood, where every decision you make you find out from some so-called "expert" that that was the absolutely worst decision you could make and what's the matter with you?!?!?! Treat people doing that to you now the way you treated them when they did it to you with your boys. In other words, ignore them, follow the doctors' (or in this case, hospice) instructions and use your own good sense and judgement,

Now, as far as how you treat yourself with all of this - I have been on that guilt see-saw so often since this ordeal began I'm surprised I don't have splinters in my rump. But I tell myself - and I'll tell you - I'm doing the best that I can with the cards I have been dealt. There are just some situations that you can't put a positive spin on, and this is one of them. Just do your best, And your best might change from day to day, and that's ok. Try and remember these words: "Do your best. Leave the rest. Angels do no more."

Peace and hugs!

lealonnie1

I am fine with you reporting me because "I HAVE A FREEDOM TO SPEECH. "

Since you asked if I had a hospice story to tell, "Why yes I do."

I will tell you my "EXPERIENCE" not "OPINION."

First of all, just let me say "A lot of people that I know personally have shared their hospice "EXPERIENCE" with me. For many years, I have been told (as another poster on this forum has posted) that hospice gives "morphine" to slip people out "quicker". They say it saves a whole lot of money. Now that is what they say.

On to my "EXPERIENCE." I had a family member that was with hospice and they tried giving her "morphine." For what? She was not in any pain and she was not having any breathing problems.

disgustedtoo

Why are you still harassing me?

daughter1930

What are you talking about?

I am just like you and everyone else here. I'm expressing my own experiences. I am not judging any one as you assume.

If you would read this you will see I was attacked by stating "Strangers will never show the love family does."

I know what I am talking about because I hurt every single day for my husband's brother who is in Memory Care.

His brother calls all the time wanting my husband and I to take a trip to see him because "STRANGERS WILL NEVER SHOW THE LOVE FAMILY DOES."

Had a relative who had lung issues and she was on hospice briefly. They did very little for her. They brought an End of Life kit to the house and dropped it off. Said they would supply adult diapers, but never did. Said a nurse would come any time she needed. Several times she called for the nurse (usually at night during a breathing/panic attack) and each time the nurse said, "I'm too far away to help you. Turn up your oxygen and calm down." Before she signed up for hospice, she was told an aid would come and help her shower and dress several times a week and change her bed sheets. It took multiple phone calls on my part for this to actually start happening. What the relative actually got from hospice was
*End of life kit
*Several visits from a nurse which took her blood pressure and asked how she was feeling and rubbed her arm and showed sympathy
*Several visits from a social worker who asked how she was feeling and rubbed her arm and showed sympathy
*What would REALLY make them show up to her house really quickly is if she threatened to drop them! Then someone would show up and make a HARD sell as to why she needed to stay on hospice. It took one of these threats to make them start sending someone to help her shower and dress. We did cancel hospice.

2 years later, relative was living in AL facility. She got very ill in Feb. (flu, pneumonia, blood infection, hospital 45 days). Covid prevented visits. Doctors said she was stable but terminal.

She qualified for in-patient hospice facility. Had to wait for covid test results. Then hospice facility would not take her saying they only accepted patients who were deemed likely to die within 2 weeks. She got sent to SNF and was to be under hospice care. Withing 15 hrs. of her being at SNF, she was found unresponsive at 7:00 a.m. Staff would not turn up her oxygen, saying that was the job of hospice and their workers had not arrived yet. Ambulance was called. She died in the ambulance.

My Mom took care of my Dad when he had in home Hospice. My daughter helped him get ready for bed every night. With my Mom, she was in a NH and actively dying for about 2 wks with Hospice coming in. I knew she was well cared for by the staff. There was no way that I would have physically have been able to care for her.

People have good and bad experiences with Hospice. In reading some of these posts, I feel that either the Hospice Nurse did not explain their mission correctly or the caregivers were so distraught they didn't understand what was being said.

If you receive Medicare then Hospice is paid 100% by them. With in home care, most of the care is done by family. As such, every person who is involved in the caring should be present when the Nurse explains how everything will work. The rules for Hospice care is all the same no matter what hospice provider you use. To be on it, you must be considered terminal and dying in 6 months. Yes, people can be on it longer. I cannot understand how one Hospice can say no and another yes. They should all be using the same criteria. And they get paid thru Medicare or your insurance.

So what I am saying, is know your rights. If the nurse is not coming 2 or 3x a week and is not available to u 24/7, complain. If the aide does not show up 2 or 3x a week, complain. People have complained about morphine. The person is dying, they are to be kept comfortable and that may mean they are sleeping most of the time. Also, morphine helps to ease breathing. Someone posted that a patient requested he not be given morphine because he wanted to be alert and the nurse gave it to him anyway. To me this was a no no. The client has a say in his care. So, family needs to question. And, you can always change services.

So will someone please explain why hospice is into giving "morphine" to so many patients who are not in any pain?

GO ...

disgustedtoo

SMH - "MOM'S STAFF LOVES HER, PROBABLY MORE THAN I EVER WOULD."

I need to say no more.

I’m so sorry that your mom, your kids and you are going through this.

We received hospice care for Mom who was suffering from renal/heart/lung failure following a rough hospitalization. She was completely rejecting food, on oxygen, newly wheelchair bound. It was terribly hard emotionally. I have many siblings that were too busy to visit - some had not even shown up for a visit in years.

My teens were helping, but it was so stressful — they learned healthcare on-the-job, like me.

In the long run, it was a good life lesson for my kids. I look back and feel It’s okay that my siblings weren’t around / it would have been disingenuous. I’m glad I had that time with Mom. My kids share this sentiment.

Hospice nurses wanted to give Mom morphine but she did not end up taking any. We were begging her to take every tiny sip and bite of food. Positive feedback and coaxing against repulsion/refusal/rejection. We weren’t yet at peace with losing her and were so emotionally devastated. She said she wasn’t ready either. Every night when she went to bed, I thought she wouldn’t wake up again. As you know, living under this type of stress is debilitating.

Mom eventually improved, started eating, weaned off O2, started walking again and was released from hospice care.

She did not survive another year, but I’m grateful for every day we had, even the hard ones, even the hospice ones.

Here is my advice—

Dont be hard on yourself. That includes not feeling guilty, trying to get a little sleep when you can, not feeling bad about going to work, and when you are off work, doing whatever makes you feel a little bit alive, gives you a moment of relief… Hot baths, a page or two in a book, taking a walk - taking a moment to appreciate the changing leaves or listen to music if you can.

Dont be hard on your kids. They are the ones that are here for you but sometimes it’s hard to keep positive and remember that. Dedicate yourself to making your relationship with them stronger through this experience.

You cannot change everything. Accept, as well as you can, that which you cannot change.

Don’t wish for siblings.

You are very courageous. Remember that what your Mom is going through is even scarier. Being there to help her through this is beautiful.

Don’t give up hope. Sometimes, the “right hope” is wishing for her not to be in pain any more.

Imho, I have a Palliative Care story. My mother suffered an Ischemic Stroke while in the Nursing Home and 48 hours after they had said "Ma'am, you're too well to stay here." She died days later at the hospital. Nursing Home head was very incorrect. Prayers sent.

Tamera, sorry for what you are going through, watching your LO coming to the end of their journey is not easy. We don't want to lose them, but we also don't want to see them suffering or struggling. As a single parent raising 3 children is not easy; especially during these times. Don't beat yourself up, you are doing the very best you can. As long as your mom is safe and knows she is loved, then you have accomplished a beautiful thing. Only God knows our expiration dates, Dr's can only assume a timeframe. If your mom is on Hospice, that is a great help to you as well. Sending love and Gods blessings to you and your family.

Unlike some responders here, I had a fantastic experience with hospice. Their support allowed my mother to come home to pass where she was comfortable and surrounded by family. The SW was really supportive to anyone in the family who needed counseling.

It sounds like not all hospice organizations are created equal.

What seems even more important in this post is the OP's distress.

I just want to say that the "guilt" and like you could do more is a natural reaction to what you already know: ultimately there is nothing you can do to prevent her death. As long as she knows you love her, and as long as you've arranged for her care, you've done all your "shoulds."

The rest of it is a kind of grief. It's terribly painful and exhausting. Please take care of yourself, and put your trust in a loving God knowing that you're human and God is, after all, love.

Never never bring in hospice if yr loved one is in a nursing home. Hospice takes over and nursing home does next to nothing to improve the quality of life of yr loved ones needs. Hospice comes 2-3 times a week and rest of the time patient is abandoned in nursing home ignored left to die. Worse still if Hospice is in cahoots with nursing home. As was the case with my loved one. Nursing home pumped up morphine to terminate patients's life as they did not financially benefit. In this case patient was not in pain but best way to replace him with an other patient for which they would financially benefit was very much the deal. In other words my loved one was killed quickly with morphine to make bed occupied more 💲💲💲 lucrative with next patient.
Horrible and criminal and apparently practiced all over usa. Death certificat indicated cardiac arrest and not MRSA pneumonia' pseudomonas infected bed sores, dehydration and neglected , lack of care, non nourished and abused and what a crime against humanity right here in NY state

My 97 year old father was in a skilled nursing facility with Alzheimer’s and, after breaking his leg, mostly wheel chair bound. His appetite was declining and he was losing weight, which is a natural signal that the physical body is declining. The facility doctor only wanted to place him on an appetite stimulant to encourage him to eat. I called hospice for an evaluation.
If you have not yet read “Being Mortal” by Atul Gawande MD, I recommend doing so. A medical doctor, he walks through end of life matters, some history of aging and living situations, supporting the body while letting it age, and how prolonging life Is many times much harder on our elderly loved ones than we know.
Hospice, in my situation, was a life saver to me. When COVID hit and the facility closed to family and visitors, the hospice nurses visited him, called me, we face timed, they advised me of how he was doing. The hospice doctor evaluated him, and they coordinated with the facility doctor. He passed away in July without a last hug from me due to COVID, but I know he was cared for until he passed. He was on hospice for approximately 8 months.
Hospice bills Medicare (if your loved one qualifies). I felt they helped shoulder the stress and lessen the burden. They will assess your loved one, evaluate, and give their recommendations to you. I recommend asking around and maybe even evaluating more than one hospice in your area until you find the one that you feel will best care for your mother. Good luck.

Try to find In Home Care! But make sure your mother's wishes and yours will NOT be taken away from you. Be careful with Hospice! NEVER let them do anything without both of your knowledge! Question everything! From my experience which was horrible they should not be trusted. There are good ones and bad ones. Do not let them take your mother's life. It is not for them to choose who lives and who dies. As you said ...that is up to God! They are NOT God!

When many of you on the forum say you "admitted your LO to Hospice" are you referring to actual facilities where Hospice care is provided? Our experience with Hospice involved brief visits by the Hospice nurse and aide ut all care taking was on me. The Hospice co-ordinator warned me that I "could not do that all by myself," but I had no choice, there was no one else to help. There was no extra help "when needed.". If the situation became unmanageable, I could leave a phone message and many hours later I might get a return call offering what was generally useless advice.

I dealt with my husband's dying a day and a moment at a time. I was left somewhat shell-shocked after my husband died, but thought I had coped fairly well. Several months later I had a "stress-induced heart attack" (cardiomyopathy) which doctors attributed to my husband's death.