I need opinions on hospice for my mom!

Charlottehapp

So my mom is 51 and she has had breast cancer since 2001. the cancer metastasized to her lungs about 6 years ago, and we recently found out that it is now in her brain. She had a total of 7 tumors, and they removed one. Since August 1st she has been in the hospital 3 times. The first time they did an emergency surgery to remove the 1 tumor. Then she did WBRT for about three weeks one treatment every day (except for the weekends of course). But then she started throwing up again and she fainted so I called 911 and they took her to the hospital and by the time I got there she was almost in a coma and they had to put her on a ventilator and all of it was caused by to much spinal fluid build up. So they put a permanent brain shunt in. So she came home (she lives with me, my husband and children) , and of course this whole time she has been taking a break from radiation. But she is VERY mean, and she basically acts like she has the beginning stages of dementia. So basically her personality has completely changed and she doesn't act like my mom anymore. And none of the mess she is taking should do that to her. And before they put the shunt in she was NOT like that. But anyway, this past Sunday she fainted again so of course I called 911 and they took her to the hospital, and it all happened again. She had to have a ventilator put in and she was Basically unconscious. This time though, the doctors don't know why it happened. her shunt was working properly, no fluid build up, the masses haven't grown, everything looked "normal". But she's awake now and her personality I still the same, she's very mean. And she's very difficult to take care of because of that. 

 

But my question is, is all of this worth it? Is finishing WBRT worth it? Or should she do hospice? I don't know what to do anymore. She thinks that she's going to live another ten years but I know that's not the truth. Of course I haven't said anything to her about that. I'm just worried that the quality of life isn't there, all she does is sleep and if she's not sleeping she's sitting there on my couch yelling at us about something that makes no sense. When ever you ask her a question she rarely answers it, normally she'll just talk about something else. 

I just know that if it were me I wouldn't want to die mean, or live the last months of my life in and out of a hospital. I know it sounds selfish but I don't know how much more I can handle. I've had to completely stop my life to take care of her, and like I said it's really hard to take care of someone who is just constantly mean especially when she's mean to my children. I can handle the meanness but my three year old doesn't really understand. And my 13 yr old doesnt leave his room anymore because of her. I can't afford assisted living, I'm already struggling with money as it is because I'm trying to keep her things paid for. I just don't know what to do anymore. I feel very stuck. 

 

 I have also posted this in the brain cancer forum. 

disneyfan2008

so sorry to hear about your

so sorry to hear about your family situation. Have you checked if any type of health care proxy? (lawyer)

 

Have you called social services or asked for a case manager at the hosptial?

 

Denise

Charlottehapp

disneyfan2008 said:

so sorry to hear about your

so sorry to hear about your family situation. Have you checked if any type of health care proxy? (lawyer)

 

Have you called social services or asked for a case manager at the hosptial?

 

Denise

Yes, I've talked to a social

Yes, I've talked to a social worker. the things they recommend are assisted living, home health, or hospice. And of course I can't afford home health or assisted living. And she doesn't want to do hospice. But she's in this health decline, and I think WBRT isn't doing anything to improve her quality of life and the palliative care dr. Has said this too. There hasn't been a change in the tumors at all So far. I just heard that they re-started doing radiation today, and she'll have 6 more treatments. and after that there is nothing else treatment wise that they can do because she has so many tumors in her brain. I asked the social worker to get someone from hospice to talk to her about it because I personally think that it would be better for her. And what else is there after this? but its not my life at the same time. 

 

I'm just very confused. 

Ladylacy

Hospice

My husband was on in-home hospice for almost two years before he passed away.  Each hospice is different in how they handle you.  In-patient hospice was not offered to us until the last week of his life, which I declined.  With in-home hospice, a nurse comes once a week, more if needed and approved by your insurance.  There is a social worker assigned to help you and a chaplain if you want one.  If the patient is unable to do things like bath, they will send in someone a couple of days a week to bath them.  They also offer someone to come in for approximately an hour if you need someone to sit with the patient.  They do provide all medication dealing with what put them on hospice but if they are on other medication that has nothing to do with their cancer, you still have to provide that yourself. 

Have you checked with what your state offers to help your mother, like Medicaid.  Also if you mother has health insurance you will have to check to see what they cover upfront for hospice.  Hospice is not cheap or free.  But they do provide what is needed, like hospital beds, oxygen, etc.

Have you gotten social security disability for your mother?  She would qualify.  A social worker would really be a help to you right now by telling you what you are entitled to get for your mother and helping you obtain all benefits.  I have a friend whose partner is dying of bone cancer.  He is now on in-home hospice and she was told that he could only go on in-patient hospice at the very end.  She has been checking personal care homes but that cost is still high, approximately $3000 a month and medicare doesn't cover it.  She is 85 and really unable to care for him herself.  This is a big problem right now in this country.  We don't take care of the elderly or patients with incurable diseases and can't afford all the healthcare they need, but we do take care of illegals, those to lazy to work and think they are entitled to everything for free, and those that don't want to pay for healthcare and think they are entitled to free healthcare,  something is very wrong with this.

Wishing you and your family peace and comfort.

disneyfan2008

Charlottehapp said:

Yes, I've talked to a social

Yes, I've talked to a social worker. the things they recommend are assisted living, home health, or hospice. And of course I can't afford home health or assisted living. And she doesn't want to do hospice. But she's in this health decline, and I think WBRT isn't doing anything to improve her quality of life and the palliative care dr. Has said this too. There hasn't been a change in the tumors at all So far. I just heard that they re-started doing radiation today, and she'll have 6 more treatments. and after that there is nothing else treatment wise that they can do because she has so many tumors in her brain. I asked the social worker to get someone from hospice to talk to her about it because I personally think that it would be better for her. And what else is there after this? but its not my life at the same time. 

 

I'm just very confused. 

So sorry to hear of all this

So sorry to hear of all this and no one really helping or directing you.

It is so sad-what do people do who do not have ANY family?

I am sure you  have -but how about searching cancer centers in your area for suggestions> Does the hosital have counseling department?

Denise

disneyfan2008

Ladylacy said:

Hospice

My husband was on in-home hospice for almost two years before he passed away.  Each hospice is different in how they handle you.  In-patient hospice was not offered to us until the last week of his life, which I declined.  With in-home hospice, a nurse comes once a week, more if needed and approved by your insurance.  There is a social worker assigned to help you and a chaplain if you want one.  If the patient is unable to do things like bath, they will send in someone a couple of days a week to bath them.  They also offer someone to come in for approximately an hour if you need someone to sit with the patient.  They do provide all medication dealing with what put them on hospice but if they are on other medication that has nothing to do with their cancer, you still have to provide that yourself. 

Have you checked with what your state offers to help your mother, like Medicaid.  Also if you mother has health insurance you will have to check to see what they cover upfront for hospice.  Hospice is not cheap or free.  But they do provide what is needed, like hospital beds, oxygen, etc.

Have you gotten social security disability for your mother?  She would qualify.  A social worker would really be a help to you right now by telling you what you are entitled to get for your mother and helping you obtain all benefits.  I have a friend whose partner is dying of bone cancer.  He is now on in-home hospice and she was told that he could only go on in-patient hospice at the very end.  She has been checking personal care homes but that cost is still high, approximately $3000 a month and medicare doesn't cover it.  She is 85 and really unable to care for him herself.  This is a big problem right now in this country.  We don't take care of the elderly or patients with incurable diseases and can't afford all the healthcare they need, but we do take care of illegals, those to lazy to work and think they are entitled to everything for free, and those that don't want to pay for healthcare and think they are entitled to free healthcare,  something is very wrong with this.

Wishing you and your family peace and comfort.

Ladylacy:
 
exactly about

Ladylacy:

 

exactly about illegals and lazy-it's awful

 

Denise

 

 

jessiesmom1

My Experience with Hospice

In 2014 after some significant behavioral changes my 80 year old mother was diagnosed with an inoperable brain tumor. For a number of reasons the family made the decision not to seek any further treatment for the tumor. Mom remained at home with my 82'year old dad. We were fortunate enough to be able to hire a home health aide who lived in. When Mom deteriorated to the point that she was bedridden, incontinent, sleeping almost all the time and just about unable to swallow, hospice was called in. One of the important things they did was provide us with a "timeline" of the changes we could expect. In addition, they provided us with the narcotic medications needed to make her comfortable. They also came by daily to check on Mom. Since Mom was a registered hospice patient when she passed away unattended by a physician, an autopsy was not mandatory. We were legally permitted to have the funeral home/crematory come pick her up per her wishes. It was an awful time for all of us but Mom was at peace when she passed. I know that we did the right thing by declining further treatment for the tumor. 

I wish you the best of luck. These decisions are not easy.

IRENE

camul

jessiesmom1 said:

My Experience with Hospice

In 2014 after some significant behavioral changes my 80 year old mother was diagnosed with an inoperable brain tumor. For a number of reasons the family made the decision not to seek any further treatment for the tumor. Mom remained at home with my 82'year old dad. We were fortunate enough to be able to hire a home health aide who lived in. When Mom deteriorated to the point that she was bedridden, incontinent, sleeping almost all the time and just about unable to swallow, hospice was called in. One of the important things they did was provide us with a "timeline" of the changes we could expect. In addition, they provided us with the narcotic medications needed to make her comfortable. They also came by daily to check on Mom. Since Mom was a registered hospice patient when she passed away unattended by a physician, an autopsy was not mandatory. We were legally permitted to have the funeral home/crematory come pick her up per her wishes. It was an awful time for all of us but Mom was at peace when she passed. I know that we did the right thing by declining further treatment for the tumor. 

I wish you the best of luck. These decisions are not easy.

IRENE

thru her insurance or medicare
She may even qualify for in house care. A nursing home that provides hospice. If she continues to progress and apparently the tumors are putting pressure on areas of her brain that are causing behavioral changes, she is not able to live alone, and you can't be expected to allow her disease to fracture your fan out lying. My mo m had to go to a nursing home as she had a debilitating stroke and we were all working made couldn't take off. She we not mean or combative, but equally unable to care for herself. I took her home on weekends and we enjoyed her!
Medicare had a provision for the nursing home.
When she was close to the end, my sister took her home and cared for her til the end. She had head and neck cancer which got her in the end.
Talk to the advocates at the medical center or hospital. They should be able to do something to help you.
You can still spend time with her, just not where it is destroying your home life. The cancer team should be able to give you an idea of what to expect from this point forward. You s h o Ulf have options.
I wish you the best.
Hugs and prayers,
Carol

VickiSam

camul said:

thru her insurance or medicare
She may even qualify for in house care. A nursing home that provides hospice. If she continues to progress and apparently the tumors are putting pressure on areas of her brain that are causing behavioral changes, she is not able to live alone, and you can't be expected to allow her disease to fracture your fan out lying. My mo m had to go to a nursing home as she had a debilitating stroke and we were all working made couldn't take off. She we not mean or combative, but equally unable to care for herself. I took her home on weekends and we enjoyed her!
Medicare had a provision for the nursing home.
When she was close to the end, my sister took her home and cared for her til the end. She had head and neck cancer which got her in the end.
Talk to the advocates at the medical center or hospital. They should be able to do something to help you.
You can still spend time with her, just not where it is destroying your home life. The cancer team should be able to give you an idea of what to expect from this point forward. You s h o Ulf have options.
I wish you the best.
Hugs and prayers,
Carol

Ditto ... Camul suggestions ...

Cyber hugs and prayers to you ..

 

Vicki Sam

Jeannielou

I would do hospice

I have stage 4 bone cancer, I already told my 4 grown boys when I get to bad I will call hospice in, you can call them to go speak with your mom, she will have a better quality of life, we had hospice for my Dad at home, it was the best decision  we made,  I will pray for all of you, it has to be hard on yoir family, yall need a break, I cant see anyone living in pain, I wish you the best, I couldn't do that to my boys,  jeannie.  Feel free to email me if you need to vent. 

Charlottehapp

Thanks

Thank you everyone for the replies. My mom is currently back in the hospital. This is the second time she has been back since I wrote the original post. She went in about two days after they finished her WBRTs, and they ended up doing an exploratory craniotomy. they did it to get samples of the cavity, of the tumor that was taken out. And they ended up finding a staph infection, which ended up affecting her whole brain of course. So she was released after they weened her off steroids, which they did because the steroids were hiding the fact that she had an infection. She now has to take antibiotics intravenously for 6 weeks twice a day With an infectous disease Doctor. So anyway, they realeased her on this past Friday and she was back in the hospital Sunday morning because her oxygen levels were very low and she was vomiting. The one day she was home she was VERY weak, she couldnt even get up a handicap ramp with a walker. She also sleeps most of the time. So nothing technically caused her to have low oxygen levels (no brain swelling, her tumors on her lungs are too small to cause breathing problems, she's not active, etc.) But they are finally sending her to a skilled nursing facility, which insurance will pay for because it's "physical therapy". It's still hard though, cause she still is in denial Of it. She doesn't see her health getting worse, even though it's clearly getting worse. She falls asleep while you're having a conversation with her, she can't speak correctly because she slurs really bad, almost like she's drunk. And she can't keep her right eye open and when she does her eye tremors. She's getting to the point of being to weak to get out of bed. You have to basically pick her up to get her on her bedside chamber pot. She also isn't eating very much, she'll eat a couple bites here and there through out the day. And finally the doctors caught on. I've been telling them that but they didn't listen. I feel like my mom is dying but no one is saying it, she seems to think she's getting worse because she thinks it's not "sterile" at our house. Even though it is. And I really wish they would just be straight up with me and her. 

jessiesmom1

Charlottehapp said:

Thanks

Thank you everyone for the replies. My mom is currently back in the hospital. This is the second time she has been back since I wrote the original post. She went in about two days after they finished her WBRTs, and they ended up doing an exploratory craniotomy. they did it to get samples of the cavity, of the tumor that was taken out. And they ended up finding a staph infection, which ended up affecting her whole brain of course. So she was released after they weened her off steroids, which they did because the steroids were hiding the fact that she had an infection. She now has to take antibiotics intravenously for 6 weeks twice a day With an infectous disease Doctor. So anyway, they realeased her on this past Friday and she was back in the hospital Sunday morning because her oxygen levels were very low and she was vomiting. The one day she was home she was VERY weak, she couldnt even get up a handicap ramp with a walker. She also sleeps most of the time. So nothing technically caused her to have low oxygen levels (no brain swelling, her tumors on her lungs are too small to cause breathing problems, she's not active, etc.) But they are finally sending her to a skilled nursing facility, which insurance will pay for because it's "physical therapy". It's still hard though, cause she still is in denial Of it. She doesn't see her health getting worse, even though it's clearly getting worse. She falls asleep while you're having a conversation with her, she can't speak correctly because she slurs really bad, almost like she's drunk. And she can't keep her right eye open and when she does her eye tremors. She's getting to the point of being to weak to get out of bed. You have to basically pick her up to get her on her bedside chamber pot. She also isn't eating very much, she'll eat a couple bites here and there through out the day. And finally the doctors caught on. I've been telling them that but they didn't listen. I feel like my mom is dying but no one is saying it, she seems to think she's getting worse because she thinks it's not "sterile" at our house. Even though it is. And I really wish they would just be straight up with me and her. 

Your Mom and Mine

I hardly know where to begin. As I stated in a prior post on this thread, I know just what you are going through as my mom passed away due to a primary brain tumor. Behavioral changes were obvious from the beginning. Mom got lost lost going to a bagel shop she had been to a thousand times. She lost her sense of time. She'd wake up at 3am and want to make lunch. She became obsessive over the location of her purse and slept with it under her pillow. Yes, she slept most of the time and had a teeny tiny appetite. Problems with swallowing developed and so did issues with bowel and bladder control. That is when we contacted a hospice organization.  We appreciated that they provided us with information about the progression of symptoms and what we could expect. 

The cleanliness of your house has nothing to do with the progression of a tumor. You know that, of course. Your mom is just grasping at straws. You can't take anything she says personally. When the tumor grows and presses on different areas of the brain personality changes occur. My mom knew she had a brain tumor. I am the one who had to tell her that. Not my best day.

As for the doctors not being straight up with you ask them directly! What exactly is her prognosis? How much time do you think she has? If this was your mother what kind of treatment (if any) would you want her to have? You have to do what is best for her which does not necessarily mean treating the disease but could just mean palliative care. 

Talk to the social worker at the Skilled Nursing Facility where your mom has been transferred. That person should be well equipped to give you advice on end of life issues. 

My heart is with you. Please let me know if i can be of any help.

IRENE

 

 

 

Charlottehapp

Well, my mom passed away this

Well, my mom passed away this morning. They sent her to a nursing home yesterday afternoon. When they woke her up to give her meds, she took them and they came back and she wasn't breathing anymore. My mom had a DNR. I am so sad, she fought for so long. My mom was truly a miracle. Thank you everyone for all of the support on here. 

jessiesmom1

Charlottehapp said:

Well, my mom passed away this

Well, my mom passed away this morning. They sent her to a nursing home yesterday afternoon. When they woke her up to give her meds, she took them and they came back and she wasn't breathing anymore. My mom had a DNR. I am so sad, she fought for so long. My mom was truly a miracle. Thank you everyone for all of the support on here. 

Your Mom

I am so sorry to hear that your mom passed away. From the time my mom was diagnosed until her death it was only about 10'weeks. I'm grateful that she didn't linger and suffer. I hope the same can be said in your situation. May all of you be at peace.

IRENE

camul

Charlottehapp said:

Well, my mom passed away this

Well, my mom passed away this morning. They sent her to a nursing home yesterday afternoon. When they woke her up to give her meds, she took them and they came back and she wasn't breathing anymore. My mom had a DNR. I am so sad, she fought for so long. My mom was truly a miracle. Thank you everyone for all of the support on here. 

I am so sorry for your loss.

Unfortunately, it sounds like the treatment or the tumor put.pressure on her brain caused the behavioral changes.  From your posts, it sounds like your mom was a loving, amazing mother.  Brain mets has always been my greatest fear.  

My sinsere condolences to you and your family.  In time the kids will understand why your mom changed.

Hugs,

Carol