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?
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.
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.
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.
I, for one, am so humbled by the care my mom has gotten so far from her hospice team - she has taken a bit of a downturn these past few days, and she fell last night... I called and the nurse came last night, one came today and one is coming tomorrow, as well as the SW who came to check in on her...I really couldn't ask for much more.
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.
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.
Once in place, it was helpful (no more keeping track of wipes and briefs!!!) Took about 3.5 months for the next stroke, which really took her down. (Funny that the contact at the funeral home commented that "things are moving along now", when I reported the first stroke. Clearly they probably see a lot and know a lot more than we might give them credit for!)
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.
Best wishes to you and your family.
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.
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!
Agree also with the comments from the peanut gallery. Everyone is expert and has their comments, advice, criticism, so you take what you can use and ignore the rest.
I do think OP needs to have a break. If possible, respite? Don't know if mom could be moved to a respite place or if it requires bringing in more help, just to get away, even for a weekend! We are NOT super-human. OP has full time job outside the home, full time job raising 3 kids, full time job managing a household AND a full time job with some help caring for her mother. Yikes! Sometimes we take on all this, a little at a time and before we know it, we're in over our heads and struggling! Seems like OP might be there when she says "I guess I just feel lost in this whole thing." Also, in the profile there is mention of guilt for not being able to do more - seriously? Yes, we might wish we could do more, but sometimes we give it all and then some and it still isn't enough!
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.
Why are you still harassing me?
THIS:
"disgustedtoo
SMH - "MOM'S STAFF LOVES HER, PROBABLY MORE THAN I EVER WOULD."
I need to say no more."
goes beyond voicing your "experience". THIS comment is being judgmental. Also, Daughterof1930 and others on this forum are NOT like that, so you shouldn't compare yourself to the rest of us.
I also wanted YOU to understand WHY I would make a statement such as I did. If it bothered you, rather than the backhanded slap, you could have taken the time to ask why. Well, you've gotten the condensed version of the why. I was also trying to set the record straight - at that point NO ONE was "attacking" you, Daughterof1930 was suggesting advice and support (your comment about me couldn't be any further from advice and support) and I was backing that up AND providing you with CONTEXT. Without context, you shouldn't be disparaging others - sorry but your comment was uncalled for.
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."
*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.
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.
GO ...
SMH - "MOM'S STAFF LOVES HER, PROBABLY MORE THAN I EVER WOULD."
I need to say no more.
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.
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.
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
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.
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.