Hospice care, how do I manage the guilt?

I feel your pain, ShatteredHeart, and pray your mom will transition peacefully. I am sure your mom would so appreciate your commitment and dedication to being with her and seeing her through this time. It sounds from your update that you have come to terms with your mom's death. I encourage you to keep letting those around you (medical workers, social workers, spiritual counselors, etc.) know that you are ok with speaking plainly about death. I have found that most professionals are very cautious as some people just aren't quite ready to talk openly about it. They are trying to be respectful, as speaking frankly about death can often come across as cold and harsh. The doctors and nurses I have dealt with practically breath a sigh of relief when they realize I am not in denial and want their help and advice. I do hope you get the answers and support you need going forward. Prayers for you and your dear mom.

This sounds very similar. Hospice is probably checking for signs. Sometimes, they will listen to the abdominal area with a stethoscope or look for mottling of extremities. If it has been that long without food and water, I wouldn’t be surprised if you hear a change in her breathing in the next few days. My mother’s breathing was incredibly fast the last couple of days. The hospice nurses were really surprised her heart was handling that much rapid breathing for that long.

Her brain was damaged, but the heart had enough strength that it wasn’t a quick ending. Two body organ systems just not at the same level of function.

I was there over weeks, but have kids and needed to be with them as well so I would go home off and on. I knew I couldn’t control when her time would come and left it in God’s hands. After her breathing changed, I did spend the night because I knew the time was close.

Hospice can only tell you so much. They can share what they see, but can’t really predict for you. Being calm is usually a help if you want them to be open about the process. Not everyone really wants to know. They try to be sensitive to that.

I am praying for you. I would just hold my mom’s hand and talk or sit quietly with her. At the end, I was so exhausted, I was a little punchy, so I was joking and being snarky about people we both didn’t like. Maybe naughty, but I just pictured her laughing in her head.

I told her I knew that this (dying) was such hard work and that I was very proud of her. That she could let go whenever she needed to and that I loved her and that everything was going to be fine.

Patience during such a time is almost impossible to find, but we don’t get a choice unfortunately. I am so sorry you are going through this.

Hello everyone who has responded. Thank you for your responses. As far as what’s been going on we are on day 14 of hospice. My mom was removed from the vent and hasn’t had any water or food in 14 days just drugs to keep her pain free they say. But how do they know she is not in pain? I don’t understand why professionals in the medical field are afraid to talk about death. We are here in a hospices place we know what the outcome is going to be but they’re afraid to give us direct answers. My mother has a catastrophic stroke October 4 and we still don’t have answers to questions we are 14 days of hospice when we were told that she would last a few minutes to a few hours. Now 14 days in and they don’t know anything she had another stroke while she has been in hospice. She makes faces of being in pain only when she is moved or turned from side to side. She has time and you speak to her that she blinks more and faster and when you stop talking she stops she moves her head and lifts her hand non of it is on command so we are being told that it’s just a reflex. How is it a reflex when she only makes painful faces when she is being moved. I don’t know anything about this process but I truly wished it was completely explained but the professional in the field. I feel like my mom was just passed down from one hospital to the next care place now to hospice all for money or to collect on insurance it’s sad to say but what are we to think when no one has truly sat down to talk to us about what to expect even from the first hospital. Death happens so why can’t we talk about it to understand it better.

Its never easy to witness our parent go thru the dying process. In fact, I can't think of anything more gut wrenching than perhaps watching my children or husband go thru it, which I pray to God to never have happen. Nothing and nobody can prepare us for such an emotionally charged event. While hospice can give you an idea of how things may play out, only God has the real timetable of events solid in His mind. It took my father far longer to pass than hospice felt it would or should, and it wracked me with fear and anxiety to listen to his labored breathing. In fact, I was holding my breath waiting for him to take his next breath of air, which was taking 60 seconds! I was at the point of passing out when I realized I had to stop that behavior or go to the ER myself for treatment!

Make sure hospice is medicating mom frequently enough to INSURE she's suffering no pain or anxiety. Make sure you are taking breaks from keeping the vigil often enough to INSURE you don't need medical help to keep you in one piece! Keep in mind that mom may want to transition alone, when you aren't there, so as not to leave you with that final sad memory of her in your mind. If so, she may pass while you're taking a break or in the bathroom. Don't feel guilty if that happens, either....just know it was her wish all along.

Sending you a hug and a prayer for peace during this difficult time.

Every hospice has grief counseling which you can ask for now. In my hospital career, I had to discontinue the ventilator at least once a month. Before this happens, the doctor, nurse and respiratory therapist huddle together to make this process without pain. They know their patient. Some patients need very little morphine. Lack of discomfort is the key here. It is true that we may not know of minutes, hours or days, but when the time comes they will guide you on what to expect. The 40 days are telling she will never be able to go home. Not only can she be suffering but you are suffering as well.

Shattered, waiting for death is a difficult time. I slept on a trundle about four feet from my dying mother, and she died in the 3 hours I slept. I too wished that I had been awake.

However I realise even more clearly now that most people who are dying are scarcely conscious for the last hours. Death is not how it’s acted on TV dramas (we call them BBC deaths). People may react to loud speech right next to their head, but it takes that to get through their brain fog. If you aren’t at her bedside, it will not distress her. If you can think that this concern is more for you than for her, it may free you up to cope with something that is going on far longer than you had any ability to plan for. May her end of life be peaceful, for her sake. Very best wishes to both of you, love, Margaret

Hey ShatteredHeart,

See predictions as almost like a weather report. It’s not often until a day or even hours that we know a weather event is upon us, even during the winter months. We know it will happen and soon, but can’t say exactly when.

Shattered,

I am so sorry you are losing your mom so tragically.

May The Lord give you strength, peace and comfort during this difficult time. May He touch your mom and remove any pain she might feel.

Great big warm hug!

I went through something very similar with my mother. She was not elderly.
If hospice didn’t already share this… after a catastrophic stroke like that, the body is very damaged, but it can still take a long time for the body to die. I, too, was with my mom day after day. There was agitation. Even with medication. A very helpful comment from her hospitalist was that this isn’t “letting her die”. That implies way too much control. The brain/body is damaged and that is why she is dying.

Which also means you may see the agitation. My mom had fevers and other things. Meds are a real help, but they can’t prevent all difficulties inherent in the dying process. The agitation etc is hard to watch and my heart hurts for you. I wasn’t ready to lose my mother either. Now, 4 years later, I know it was the right thing. Her quality of life would have been terrible. Allowing nature to take its course was the most loving thing I could do. But, it is incredibly difficult. I wish you great peace in your heart.

"We" do the best we can.
We make tough decisions based on what we believe or better yet what out loved one would have wanted. The tough thing is when those two diverge.
When it came to making decisions for my Husband I always said I was ruled by 2 major organs in my body.
My Head
My Heart.
I could only hope that when it cam to the really difficult decisions my Head would rule over my Heart.
My Husband was on Hospice, luckily I was able to have him at home.
The morning he died I thought I heard him then he quieted and I, still groggy from sleep fell asleep again. Minutes? an Hour? later when I got out of bed he was gone.
the Nurse told me that very often a person will wait until their loved one gets up to get a drink, go to the bathroom then they die. She said death is a personal journey and many wait until they are alone.
And his death was not "anticipated" the Nurse nor the CNA had seen signs of End Of Life when they were there earlier that week, just 2 days previously. So even though they are experienced Hospice people and can sometimes give a "timeline" there is no way to know for sure.
I am sure there is no "pain" that you have added to.
Feel grief, anger, confusion, but there is no reason to feel "guilt or responsibility".
((hugs))

Speak with Hospice, Shattered. Let them know that while you do not wish to hasten your Mom's death, you DO recognize that pain meds may cause some hastening of same by hours, or even days--but that for you now, your Mom's comfort is the prime imperative.
As the systems shut down (and that is what death is) you will see things that are difficult. Cooling of the limbs, some restlessness, difficulty with breathing and secretions. Hospice has meds to help with this.
There is simply no way to predict death and it was a mistake to assure you that the removal of the vent would mean imminent death. There is no way to predict this, while medical staff can make guesses.
Yes, I always suggest that you switch g words because words matter. Guilt isn't yours. You didn't cause or create this and you can't fix it. The proper G word now is grief. Grief recognizes that no one is responsible for the fact we die, and while people try to make things better there isn't always an answer to how to do so. I am so sorry for all you are going through. I encourage you to get rest for yourself. Being constantly at the bedside if your Mom isn't awake and aware and wanting you there, is a beating to your heart, soul and body that you can't afford. My heart goes out to you. You aren't alone in having watched someone die. Speak with hospice, their nurses and social workers and clergy.

Like AlvaDeer says, guilt is for felons. Grief however is appropriate.

So sorry that you are losing your mom. On hospice, if your mom is in pain, that should be addressed ASAP. There is no need for her to suffer.

You need to start to take better care of yourself. You deserve it. There is no way to know when your mom will pass. I do not think there is anything wrong with a person passing alone. Just tell her where you are going, you'll be back in a bit and that you love her. You could also, if you desire, give her "permission" to pass and that you will miss her but that you understand it is her time.

Then take a break. Eat a good meal. Take a nap. Take a shower. It is quite possible that she could pass during that time. But it's OK. Really.

If it helps at all, in any way, I share your concerns about prolonging a life that seems, at least from all I can observe, unsure whether to stay or go.

For all the losses I’ve experienced, the departure of this LO, the last of my mother’s generation, has been by far the hardest.

She’s weathered two separate cases of COVID, and now lives in a body so delicate and riddled with pressure sores that the SNF staff and hospice workers find it difficult to “place” her body so that she won’t develop even more of them.

A few months ago, I questioned a dietary change that had been made based on a wholly legitimate staff observation, and it soon became obvious that I’d been “right” about what I’d suggested.

But what did it MEAN that I was “right”? She was consuming more calories and more protein, and that had been my goal, but was that serving to give her more time that she wouldn’t have wanted?

“…don’t want her to be alone…” when she expires? All but one of the recent passings in our family have occurred JUST after the other LOs left their rooms. They were all maniacally private people. Is that what my LO is waiting for?

Ever day as I leave her I say “I love you dearly and I’ll see you tomorrow, but IF YOUR SISTERS COME and want to TAKE YOU HOME, YOU DO WHAT YOU WANT TO DO”.

One foot here, one foot in Heaven.

Thank you, ShatteredHeart, for posting. I understand you and agree with you.

Hoping for a Sweet and Peaceful Passing for your LO and for mine, whenever it comes.

Shattered, ((((hugs)))) and welcome!

I think that even seasoned professionals are bad at predicting how soon death will come.

Is mom's physical pain being addressed by hospice? Is she agitated? There should be meds for that as well.

Please give yourself permission to take a break, get some sleep, a shower and a bit of down time.

We hear quite often that some people die just after their loved on leaves the room, seemingly not wanting to die in another's presence.

Keep posting here and let us know how you're doing.