Mom given 1-2 months left

[Susana]

Hi everyone
My mom was diagnosed with colon cancer back in January. She had 2 surgeries in February and had a long recovery and came home at the end of April. My dad died in March while mom was still in the hospital. Mom got sick again in August and went back to the hospital with a leak in her bowels and has had 3 surgeries since August. The last surgery took 7 hours and the doctor who did it said her cancer had spread and he did the best he could to help her out (which he did help-he repaired the leak once and for all)

well...mom is still in the hospital..her most recent cat scan shows large lesions on her liver and what is left of her pancreas..the doctor now says she has 1-2 months left with us.

Mom is 72. She is very thin now, very weak, can't walk and has major vision loss (new-from all of the drugs I think-the docs ruled out the cancer spreading to her brain), her incision is huge and the things holding it together are still there though the doctor said he was going to remove them weeks ago, mom can't get up to go to the bathroom, she can't feed herself *at all*. she requires pain medication (morphine) frequently. She is being fed through a tube and can eat regular food when someone assists her though she doesn't eat much because she gets full quickly. Her bowels aren't functioning normally...it takes *days* for the food to go through her bowels.

ANYWAY. I know this isn't a pretty picture. I go see mom every day. She is always thrilled to see us (I have 2 sisters) and every day I do the same things...I brush her hair, massage her scalp, wash her hands and face, put moisturizer on her, read trashy magazines to her and feed her. MOm is so confused sometimes she thinks she is at home. Just yesterday she told me she had the best conversation with dad (who died in March). She said it was wonderful to see him!

The doctor said if mom gets strong enough she can come home to live out the rest of her days.

I would love to see her home, but I'm also scared to death of what it would be like to have her home. My older sister (know-it-all bulldozer type) wants mom home and she wants me (I don't officially work-but I do help run a family business and homeschool two teenagers) to take care of mom in her home. SHe wants my little sister (works and has 2 kids-one of them is small) to spend nights with my mother. Older sister wants mom home, and wants us to take care of her.

Am I crazy? Is that even possible? Truth is, I would be scared to death to be in charge of my mother's caregiving the way she is right now. How can I help her the way she needs to be helped? Would it be safe for us to do this?

I think we are all going to be talking to a person at the hospital who helps familys figure out what to do in these situations.

Maybe I'm in denial..I'd love to see mom in her own home. But maybe she isn't going to get "strong enough" to come home.

I wish I had some idea of how this is all going to go down. I know I am going to miss my mother more than anything in the world. I'm so fried in every way, shape and form that the thought of caring for her alone freaks me out.

has anyone been through anything like this? any words or advice are greatly appreciated.

[anjelika]

I'm sorry you're going through this - a lot of tough decisions ahead

I think your mom might prefer to be in her own home, but I'm sure she's appreciative of all the care you're giving her at the hospital. I was critically ill this winter and actually didn't mind the hospital environment as long as I had people there with me.

There are benefits and drawbacks either way, but I think the most important thing is just being there for your mom. Talking with her, reading stories (I enjoyed kids' books - nothing too serious), just making her as comfortable as possible.

Peace and blessings to your family...

[hedgehogs4]

I'm sorry about your mom. I'd ask the Dr. or discharge planning nurse for a hospice referral - then the hospice intake nurse will visit you and your mom and help you make informed choices.

[babygrant]

I think what you are doing for your mom is fabulous. Day in and day out I see people laying in bed or sitting in their wheelchairs with absolutely no visitors. The nursing staff combs their hair, brushes their teeth, feeds them, but we are so busy that we can't sit down for hours and talk with them.

I get teary eyed every time I see a family member or friend come in and visit. I think you are doing a tremendous thing by doing all of those things for your mom.

You could look into getting hospice care to come in. You and your sisters would be responsible for doing most of the work with your mom, but the hospice nurses would come in to help you out with medications and such. I believe all things are possible, so you all need to do what works best for you and your families.

to you.

[Susana]

thanks for all the replies here

angela, I am so confused how hospice at home works. the nurses have to come give mom her meds, so someone would come to her house every 3-4 hours? or they would live with her, too? it takes at least 2 people to move mom, so 2 of us would have to be there with her at all times? My sisters both work so I would have to hire someone to help me?

it's all so confusing. I guess this is what the doctor will talk to us about this coming Friday.

I had a good visit with mom this morning...chocolate doughnuts and coffee, and I put my earrings on her and she wanted to keep them! fine by me..she looked good in them.

thanks for any more words of advice....

[babygrant]

Originally Posted by Susana

angela, I am so confused how hospice at home works. the nurses have to come give mom her meds, so someone would come to her house every 3-4 hours? or they would live with her, too? it takes at least 2 people to move mom, so 2 of us would have to be there with her at all times? My sisters both work so I would have to hire someone to help me?

I'm not a hospice nurse....I'm a long term care aide who has done hospice care...so I'm just going by what they do here. I am also in BC Canada, so hospice care is quite different. I'm sure you could hire, out of pocket, a hospice nurse to come live with your mom, but the way it works here is that the hospice nurse will come to the house to do checkups and administer medications whenever it is needed. When it comes to transfers and such, they would probably opt to bring in home support services which would be where a community health worker/long term care aide would come into place (because we get paid less). The home support workers would assist with any personal grooming, meal preperations, transfers, etc.

I'm sure it varies from province to province, state to state, so it would be something to look into for sure!

[meemee]

awwwww your earrings on your mom. awww that is sooooo special.

yes mama it is possible. i just helped my inlaws die at home with hospice. it was hard. but the rewards i repeat - nothing comes close to it.

dont have time now but i will write more later.

i promise you - u will find much peace with ur moms passing.

ok i am back. first from the way you describe how your mom is - i wont be surprised its more like a month or less. for all you know it might just be out of your hands.

secondly - how do YOU feel. forget the details. what do YOU want to do. it seems your older sister is v. adamant to bring your mom home. how much will she be involved?

it is best right now to know your limits. how much are you willing to give up? nothing is right or wrong. what does ur inner heart say? want? your answer will help you.

my father passed from stomach cancer. i was with him at the hospital the last two weeks of his life. my mom freaked about bringing him home. this was asia. the concept of hospice didnt exist there. and i wasnt trained enough - or have any knowledge to make the decision. so even though my dad wanted to come home we didnt bring him home.

in my xinlaws case it was either me be their ft caregiver (with no skills at all but a deep desire to do it no matter what) or go to seperate facilites since their needs were different. hospice trained me to do everything. the only thing that was different between me and the nurse who came to visit her was that she was actually getting the prescription. otherwise i made the call of what medicine, how much morphine, how often.

hospice is a wonderful program. they support you as family and your mom too v. beautifully.

mind u i had no training beforehand. none whatsoever. they nurse showed me how to use a drawsheet to turn my mil. and i was the only one turning her. initially i would call a nurse over once a day to help with the sheets since i got it all jumbled up - but i got used to it. in my mil's case an aide came once a day to give her a bath and wash her up. in my fil's case i did all that. i refused an aide. he was more comfortable with me doing it. they were both much more comfortable with me giving them the suppository and helping and cleaning with the bowel movement.

so if you are concerned how are you going to do it - anyone who wants to can. and i can tell you this much xmil and xfil much prefered me there to another stranger. plus i am a good nurse. it is just a gift i have. to make things easy for my xinlaws it was actually me suggesting little changes that helped them a lot. since i was there 24 hours i knew about little things that i had to tell the nurse to help them make decisions.

the nurses were v. helpful too. with little tips that made a world fo difference.

oh and you better believe it. your dad did visit your mom. to give her company. my xmil's two miscarried son arrived a month before she died. and her brother came towards the end too. and right when they arrived a dove came and laid two eggs and hatched two white doves on their porch. my fil had many strangers visit him. my mil would visit him at night. she went before him. and i could hear him chatting away with her. with my dad his mom and my bro came on his last day on this earth.

my ex took care of my 5 year old most of the time. seh would spend a couple of days with me. but the last 3 months she lived with me full time along with taking care of gpa. of course it was v. easy on me coz i was with them a whole year.

hopsice does provide volunteers here in the US. but none whole time. to help me and my inlaws the hospice also offered us 24 hour nurses and then to see if more was required - this was right at the end. but it was too much incroaching on privacy so we refused. the first time when mil's morphine and oxygen were upped they did spend 24 hours. but it was no real help for me. but i did learn more about the different breathing pattern.

when my mil was passing i was there holding and just being with her. my fil freaked out and called the nurse. and the nurse came and my fil couldnt really understand what was going on even though the nurse tried v. gently to tell him it was it and left. i made him sit with her and let him with her and a few minutes later she was gone.

what was great for me was having them available on the phone 24/7 and also knowing if i really needed a nurse would come right away.

so for me i was able to do it because i wanted to and because i could manage one child.

no matter what i would mentally prepare yourself to get ready now. seeing people is really the first clue that things will happen soon. talk to the hospital and see if they will let you sleep over.

if your sisters can i would say they should take time off work and stay slabs of time with your mom - pretty soon. u guys could take what 3 or 4 hour rotating shifts with her. this will so help with grief. and the guilt that comes later when one feels one didnt do enough.

my friend also brought her 86 year old mom home for the last two weeks of her life and that was the most moving time she had with her mom.

[Cuddlebaby]

firstly
secondly please take her in and help with her care. you will not regret it as been eluded to here by a couple of posters. I helped take care of grandmother and father-in-law in their last days (rotation schedule with family members) and now that MIL is in stage 4 lung cancer and I live an hour away I am completely heartbroken to be able to help bear the burden with the rest of the family. it will be difficult. but something you will look back on and not regret only little bit. plus a great life learning experience for the teens who may not make risky as decisions in their lives when they have witnessed a death.

hugs again.

[Susana]

hi everyone
what fantastic advice here. thank you all so much.

mom was very sick all night last night. she was pretty much out of it for my morning visit. All of the nurses and aids came in to talk to me today. I know it is going to be soon. Mom will be released next week and my vote is coming home with 24/7 help. the nurses advised it would be best for her. I'll take any help I can get.

I can't take the amount of pain she is having. SHe's on a pain patch now and they said the effects will last a long time. The nurse told me mom said she had no pain. this is all I want for her now.

last night she knew I was there with her-when she was in pain. This morning she looked at me like Huh? I don't know if she'll get back to knowing it's me.

she still has on the earrings
I know my dad is with her Dad talked to his sister for 2 weeks before he passed. It was eerie but comforting to listen to him talking to her.

I'm going to do whatever it takes to help mom. Dh and I are going back to the hospital tonight.

thanks everyone, again.

[Smithie]

My mother (a trained CNA who later became a nurse) provided direct care to several elderly relatives on my father's side and helped them stay at home until the end of their lives. I totally think it's a good thing, and doesn't have to be experienced by the caregiver as a terrible burden. Support from hospice and community health services can make a world of difference. Families can sit down together and work out a schedule that meets everybody's needs.

But.

Sometimes the nicest/most easygoing/most nurturing relative gets the vast majority of the responsibility dumped on her (funny how it's always a women, huh?), and she gets burned out and her own family gets neglected while the other close relatives sacrifice hardly at all. That's a really toxic situation IMO, and you owe it yourself to set firm limits about the hours you'll be putting in BEFORE your mom comes home.

[Susana]

hi everyone
a little update

after hearing my older sister push to bring mom home for weeks I had decided with a hospice nurse to back me up I wanted to bring mom home so we could all take turns caring for her.

well..guess what. Older sister finally thought about what bringing mom home would involve so then she pushed for a hospice facility.

My older sis and I have gone 'round before over the caregiving for our parents and it is never a good thing..she and I are both headstrong but I am smart, honest and a hard worker and she is selfish and impatient and a slacker.

Since I have another sis we had a vote on where mom would go. The hospital people helped us pick a few places and older sis got the final say because she would be such a PITA if we challenged her in any way.
mom is going to a facility today. I am a nervous wreck though I know it'll be fine.

Younger sis and I took all of the grandkids (older sis has no kids) to see mom Sunday night. We made brownies and took a video of our dad to watch and after all of that we played a Doors cd and we all danced for mom. She was having a blast and told all of the doctors and nurses about her "party" after it was over.

Older sis has told us we shouldn't be doing things like that at this new place..that the staff and other residents will think we are a**holes. those were her words to me.

I am upset with older sis as you can see.

I want mom's end of life to be comfortable, and as happy as it can be. If that involves watching her grandkids dance around like goofballs every now and then, is that such a bad thing?

Mom has a blood infection now and her pain meds have been tripled. She feels no pain she says. Good. Half the time you talk to her she makes perfect sense, the other half she is saying things no one can understand.

I hope I can make it through this final stretch.

thanks for reading....

[Thompson'sMommy]

I am so sorry that you are going through this! I took care of my Step Mom before she died in Oct of last year. I will be praying for your family!

[momma of monkeys]

s momma.....just wanted to add that I will NEVER EVER forget the wonderful nurse/friend who provided home hospice care for my grampa....and he passed on my tenth b-day....she helped me more than I can express...

I honor where you are.....blessings