Hospice.. - Warren,MI

My mom passed when i was 19 from breast cancer spread to her bones. She was a social worker for hospice and became a patient herself. She was only 40. It is very hard to loose a parent and as someone who has gone through this, I dont think there is a time line. People seem to hang in there until they feel it is time to go. Make her comfortable and let her know how much you love her and appreciate her. I think telling them you will be okay helps too. Hang in there and be strong. I'm sorry you are going through this, it sucks.

I have had 3 family members enrolled in hospice. I also worked as a medical social worker for years and have learned a lot about this process.

Many people, including me, believe that towards the end of life the individual has a foot in each life while they transition over to the after life. My mother began to talk to her mother that she hadn't seen in 50 years. She would have very clear, lucid moments and instantly return to jibberish. Restlessness is another sign that the end is near. It was my experience that people like to die when no one is in the room. My sisters and I were constantly at my mother's side, waiting, watching and wishing she would finally pass away as it was clear that she was struggling mentally, emotionally and physically. When the moment finally came, I was taking the garbage out and my other sister had stepped away briefly. She chose to let go when we were not there.

Towards the end, respirations become labored and there can be a gurgling sound that is called the "death rattle". It is an awful sound but not painful.

I would ask the hospice staff for materials to educate yourselves on the signs that the end is near. There are several very good pamphlets out on the market that will address your needs.

And finally, think ahead of how you want those moments immediately after death to be like. In the case of my Mom, we knew we wanted some very specific music to be playing in the room. The music was ready and waiting. Also, don't rush the process. Don't call the funeral home to pick up your Mother until everyone is ready. Take your time to be with one another to cry, love, laugh, pray and tell stories. When the hospice nurse came to pronounce my Mom, I asked to bathe my Mom one final time using her special scented lotions and powders. Although very difficult, it is one of the best things I did. I gave my Mom a proper send off. This was important to me.

Certainly there will be difficult days ahead as you prepare for this life altering moment. I wish you peace and comfort.

Blessings to your Mother, you and the rest of the family.
Michelle

My mother works as a hospice nurse and my sister worked in a nursing home for years....from them I can tell you that often a person becomes more lucid and appears to get better or have a burst of energy within a few days of passing. I am sorry for your situation. I wish you well.

I don't know why I can't add more to my post... We have an awesome hospice company...BUT I just needed to "talk" to someone that has been through this one-on-one..not just as a worker...... I feel guilty when I leave her. but I have a family (children) that need my care..WHAT DO I DO???? this is so hard...I want her to go for her sake but not mine..after all Im losing my Mom!!! and my Dad passed away (what will be) 12 yrs ago Jan 20th... Thank you all for your thoughts and kind words.

I am so sorry that you are going through this..

We have had quite a few family go through Hospice. My husbands grandfather was in Hospice care for 11 years!I know amazing..

There are really good moments and then moments where they seem to shut down.. Yes, it can be weeks, but sometimes, it is just a bad moment and they just go.. Do not stress, just let it happen.. Say everything you have to say to her.. Do not fear her death. instead embrace this very special time.

Anyway, one thing to keep in mind is that most people do not die with their loved ones around them.. They generally wait until their family members have dashed out to run an errand, gone to work.. etc.. So if you have a nurse come by, and need to run errands, or go to your own home, go to work.. do it..

When our grandmother was dying, I would talk to her about not worrying about us, that she should be excited about seeing her own mother, brothers.... I promised we would all look out and take care of each other here.. I told her we loved her and would miss her, but I promised we would take care of each other the way she taught us..

She died the 1 morning that we were able to get her husband to go out for a quick breakfast..

I had the unfortunate ordeal of Hospice. Its not pleasant. No one person can give you advice. No two are the same. The constant "telling" of "they will be gone by 'noon'..." makes it harder on us all. Doctors cannot read the future.
Hopefully, you can make your loved one comfortable.....

Wow, your mom sounds like a real fighter! It is hard to know (predict) when someone in hospice will pass. My dad was in hospice only 5 days - the nurses indicated to my mom that the end was near when he released his bladder and bowels (sorry) and developed a shallow breathing pattern. They called me and said to get there as soon as I could. I am so grateful I was able to see him one last time. The nurses said he could hear us talking to him, so I told him I would take care of my Mom and that it was ok to let go. I think sometimes people need to hear that. He died with my mother by his side - I think he waited till I had come and gone. In our experience, the hospice nurses were well-qualified to evaluated how close we were to the end. I know it's hard - you don't know whether you need to be there 24/7, and you have other responsibilities. Do what you feel comfortable with and can handle - that's all anyone can do. Say what you need to say to your mother - and have no regrets.

It's hard for anyone to really predict what's going to happen. It's a good thing to hear she has survived this for 11 years... my mom is stage 4 her2 positive breast cancer that's in her lungs, bones, and now her other breast and it's so good to hear she could have a chance for a few years since her chemo has stopped working and she has to get stronger chemo to try to stop the growing. It sounds like your mom is going up and down so it's hard to give advice. I agree that you just make her as comfortable and painless as possible. I hope my mom will live another 11 years like your mom, she sounds like a strong and determined woman.

I can imagine it must be so hard to lose a parent as another poster has said as well. I'm going down that road as well and it's such a rollercoaster of emotions from scan to scan waiting for results, hoping it gets better or stays the same. My heart goes out to you and your mother <3

Hi S..

I know this can be such an overwhelming time. At the end of a person's life, there can be periods of improvement or what appears to be progress. What I would suggest is getting ahold of the hospice booklet that most hospice programs provide. It explains the transition that people go through when they are dying. I would definitely encourage you to take advantage of the services that hospice offers. They have an RN that is available 24 hours a day, a social worker who can come to your house and talk with you about what your mom is experiencing and what you are going through. The social worker is there for your support so you should call on him/her. They also have a volunteer person who can come and sit with your mom, run an errand, if needed, etc. They should also have a bath aid too to help if your mom needs assistance with that. Hope this helps.

Your M. is a survivor. Spend every moment, stressful as it is cherishing her life and times. That said, since they thought she was going to pass Friday and she has proven them wrong, but still saying things that do not make sense, I would keep her in hospice for the sake of the fact she does have cancer. It will also make you feel better that someone is taking care of her. Don't "expect" anything, your M. is the key. When it is her time, it is her time, if it is not, then it is just not her time. I pray for you during this difficult time.

Your question posted twice, so I just copied and pasted my answer to the other post, just to be sure it does not get missed:

I am so sorry for what you are dealing with. I can tell you right off that the process is different for everyone, but I went through the same thing with my mother this past year. She went into hospice care after chemotherapy for leukemia did not work, plus the chemo ended up instead creating more problems (and they also found she had a brain tumor). She was in hospice care for 5 months before she passed away in July. She started out being very confused about where she was and why she was there - she seemed to think this was another part of the cancer treatment and a temporary stay, rather than understanding that there was nothing more to be done than to keep her comfortable and she was going to die there rather than be able to go home again (she was bed ridden, at risk for bleeding, and at a nursing home facility because there was no way for us to get the care she required in her own home). She was on A LOT of medications, plus I think she might have been in some degree of denial. Between pain medications, anti-seizure medications, and anti-anxiety medications, she could not keep anything straight at all.

She was still able to recognize everyone until the last month - then she only recognized me, my brother, my husband, and our daughter; the rest of her friends she would get mixed up. She got days and nights switched around - she would think it was 11:00 am instead of 11:00 pm, for example. She kept wanting certain items in her bed or next to her bed (like reading glasses, cell phone, etc.) and would get all worked up if she couldn't find them (often they fell on the floor or were underneath her). She would claim that the nurses were not responding when she pushed the call button when really she had not pushed it at all. Or she would just start yelling for them down the hall. Or she would call me at home at 6 in the morning wanting me to come there and find her glasses for her because she kept calling and calling for the nurse and they were ignoring her (I know for a fact that they were not). She would see things on TV and get them mixed up with real life (like a show about renovating a house - she thought they were renovating OUR house). She had a good appetite until the last 2 months or so - it really started to dwindle down to nothing. She would fall asleep in the middle of talking to someone, and often asked odd questions or said things that made no sense at all. Often she would seem delusional and say there was a man in the room, or there was a man next to her bed. Once she thought there was a man with a dog in the hallway outside her room (they say sometimes they will see people close to them who had passed on before, or be "visited" by loved ones that have already died). There were times we thought it would be soon, then she would appear to rally and hang on.

Again, she had many, many things going on - I think all the medications were mostly to blame, and I am sure the brain tumor did not help. The last few weeks she got more restless and even a number of times tried to get out of bed, thinking she could walk, and ended up falling (they ended up lowering the bed to almost floor level and placing a padded mat next to it). She stopped eating and drinking, she was not making requests for certain food items like she had before. She stopped talking and being able to say anything or respond in any way to what people were telling her. On the morning she passed away, her breathing suddenly became very rapid and she was not responding to anything. They checked her temperature, it spiked up to 103.5, then within an hour she was gone.

If she is in hospice care, there should be nurses and social workers on her case that you can talk you about what some of their experiences have been and what you might be able to expect. One of the things they told me is sometimes they want to die alone and will choose to go once nobody from their family is around - or they wait for a certain someone to come and see them, and then die shortly afterwards. Again, I am so sorry for what you are dealing with, I know how hard it is, and you have my sympathy. I hope this helped. Blessings to you...

I have had three people pass in my home with hospice, so I completely understand what you are feeling. My mother in law was the first and in her situation she had some unresolved issues with my brother in law. Once he finally got around to visiting her (after numerous calls) she perked up and spent an entire afternoon with him like she was a different person. Prior to that she was asleep most of the time. After my brother in law left she passed that night. Sometimes people need to be told it is okay to go, to be out of pain, and to go to a better place. The restlessness could be a sign. Talk to her even if she appears to be out of it, trust me she hears you. Tell her you love her and that you are going to be okay. If you know of something that she may have on her mind or someone she needs to mend things with help her out with it. Hospice as you know is pain maintenance so the medication will eventually help put her at rest. On the flip side some of the pain medications made my father in law very restless and kept him awake. Call the hospice nurse and tell her about your concerns, she may recommend a different or stronger dosage to help your mom in her final days. I am so sorry for your loss and what you are going through. Prayers are with you.

I am so sorry you are going through this. It is so hard to see your parents like that. My dad was in hospice about a week before he passed away from cancer. We ended up putting him in hospice when he started talking nonsense and insisting he could do things that he couldn't. My mom was not physically able to take care of him anymore. On his second or third night in hospice he actually got out of bed and jumped a fence and walked around the building. This was a man who was in a wheelchair for about a month. They said it was the calm before the storm. I guess it is normal for people to get a burst of energy before they die. He did pass away 3 days later. He had one good day where we were all asking why he was even there. Then we saw. It is hard to predict the future, especially when they are fighter. With my dad, he was no longer responding to us. We told him it was ok to go. Even though we would miss him, we would be ok. He passed away about 5 hours later. It was such a relief to say that to him. Make sure you take care of yourself while you are going through all this. It can be so mentally and physically draining. Hang in there and know you are an awesome daughter for being there during one of the most difficult times in your life. Prayers to you and your family.

I just want to send you a hug! My mom and dad both passed away while on hospice. Both times were different. With my mom, I asked every hospice nurse who came to visit what they thought was going to happen. Each one of them told me it is different for every person and there is no way to tell. At least they are honest. My mom had strokes over the last couple years of her life, and took a turn for the worse on a Tuesday and on Sunday morning she passed away. That was almost 6 days without food and only water on a sponge or from a dropper. They gave her liquid morphine most of those days if I remember right. My prayers are with you. Take care.

I'm so sorry to hear about your mom. What a battle.

My grandma was in hospice. She did the same thing, one day she started doing much better, 3 days later she passed away. I recall the hospice nurse saying that was a pretty common occurrence. For some reason it looks like they are getting better then they finally pass. I'm not sure if perhaps that may be happening with your mom.

It is so hard. I hope you can find the strength to get through this difficult time. hugs

I know what you are dealing with is hard. I can only imagine being there day by day. My father was like this, but he was 4 hours from me and it was hard for me to get there.

Just try and hang in there. There really is no telling. She must really want to live. I'll pray for you all.

If she's still on pain pills instead of injection for pain, she likely has a bit longer? I've known several people who passed of cancer with hospice suppot and each went from the pills to injections or an IV for the pain before the end.

My sister-in-law's mother was receiving hospice services for terminal cancer that metastasized from her uterus. I went to visit her and she was chatting and telling me jokes. The next day my brother-in-law called and asked me to come. The Hospice staff was short handed and had to go to another patient, though they would be back in a while, my sil was alone with her Mom (he had their children, whom they didn't want to be present when she passed away). He told me that his mil was breathing funny and that the hospice staff told him she would likely pass that day. When I got there she was breathing very noisily and appeared to be unconscious. I was amazed because she had been so vital the previous day. After I had been there for about 4 hours, I got up and started tidying the room, while I was wiping the bedside table I noticed that she was looking at me. I took her hand, stoked it, and told her it was ok to go. She closed her eyes for a second and turned her head slightly toward her daughter. I called to her and said, "Hurry, your mom is awake and looking at you!" She rushed to her mom's side, told her she loved her, and kissed her. Her mom let out a long sighing breath and was gone. I took her pulse, checked for breathing and there was none. Finally, I covered her face with the sheet. The hospice nurse came and a coroner, she was pronounced and taken to the funeral home. My sil didn't speak to me for almost two years after that. She said everytime she looked at me she remembered her mother's passing. No matter how much that hurt, I still think that one of the kindest things you can do is be present with someone when they are passing...

Spend what time you can with your mom. You've been a good daughter and she knows how much you love her. Don't feel bad if you must leave for a while.

Take care of yourself too. Times like these take a terrible toll.
Many [[[[hugs]]]] to you and your mother.

Hi S.,

My Dad was on Hospice for 4 years. They kept telling me that he only had six months to live and I kept telling them that God would take him when He was ready. It's been 2 years since he's been off Hospice. He's stable and not declining. Who's to know what will happen. It's so hard to put your life on hold and deal with sad issues but sometimes that's just what we have to do. Talk to the Hospice counselor, your pastor, your friends, and let them know exactly what you are dealing with. This is not the time to be alone.

God bless!

M.

I'm very sorry about your mom.
My stepfather had in-home hospice care and O. thing I know...hospice workers are angels and they are a wealth of information about the dying and grieving process. Talk to O. of your moms caregivers. There is a science to death and there are very specific stages that the body follows before death.
Hang in there.

I lost my mom over 4 yrs ago, very suddenly. Didn't really know how much time she had left. But she did not want us sitting there crying over her. We were with her when she passed but she was hooked up to many machines, so I hope she heard what we all had to say. I haven't dealt with hospice but know that losing a parent is unexplainable so try and have as many good moments with your mom as you can before she is gone. Sorry you are going through this.