Hospice..

Bless your heart. I have no advice for you, but I want to send you the warmest hug possible. I'm so very sorry you and your family are having to watch your Mother suffer and slip away in this way. Big hugs and warm thoughts for you and your wonderful Mother.

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. 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 no answers for you, but wanted to send you my most heartfelt love and hugs to you and your family!

My grandmother was in hospice for nearly a year and there were definite ups and downs such as you described, with some "rallying" on her part, when it seemed like the end was near. It's definitely a rollercoaster, no?

My mom is a hospice nurse (works in triage at Angela Hospice, Livonia), and often describes similar stories for families dealing with the same.

I would suggest talking to her care team (dr, nurses, aides, social worker, etc..) to see what their opinions and/or advice is.

Be sure you're taking care of yourself too -- I know it's much easier said than done, of course.

((hugs))

S. ~
I'm so sorry for what you're going through. A few years ago I had a friend who was in Hospice, she actually lived at Arbor House in Ann Arbor. As a nurse I can tell you that the people that work there are incredible! They really would be the best ones to ask. Talk to her caregivers and ask what their opinion is, what have they seen in the past. Everyone is different, so it's hard to know exactly what your mom will go through, or how long it will last. Alot of times at the end, people sort of rally...they seem a little better for a little bit before they go. Sometimes they're waiting to be told that it's "ok" for them to go. It's a very difficult thing to go through, and I wish you strength.
D.

I know you posted a couple of days ago, but I wanted you to know that you are not alone. I have watched my grandmother, father, and family friend go through hospice and pass away recently. My grandmother was in hospice for about a year, and there were several times that we thought she would pass, but stayed with us. All I can tell you is that there will come a time that you feel in your gut that you need to see her, or say goodbye, or talk to her, and that will be when it happens. My grandmother passed early in the morning, not long before my mom woke up to check on her. I think she wanted to go when my mom was sleeping to make it easier on her. There is really no way to know when she will go, but I think you will be able to tell when she is getting too tired to fight anymore. Thats how it was for me anyway. Let her know that its ok for her to go, if you are ready for that, I think that helps them know they don;t have to fight anymore.

I hope I have helped a little, I know this is a terrible time for everyone.I'm sorry I couldn't be more help.