ANGRY

MyMomsAdvocate

So I haven't written in a while, and for a little bit of time I came to grips with the situation.  Now tonight, with a heavy heart, I feel the anger and sadness starting to creep up on me yet again.  I've gotten to the point where I want to give up, and I'm not even the one fighting the cancer.  I am emotionally and physically drained.  Watching my mom fight and fight and fight with no results has made me bitter.  When is enough, enough?  I want her to pull through but I feel my hope starting to slip away. 

She's talking in her sleep tonight and it is scaring the crap out of me.  It's almost as if she is yelling, and when I ask her if she is okay she just says some gibberish and seems to go right back into REM sleep.  Her husband has moved downstairs as he has to be to work at 4AM, and now I am on edge just waiting until she says she needs me, because that's what happens.  We have been in and out of the hospital for the past month, fluid in her lung, lymphedema, and most lately -- blood clots in both of her legs.  She is now unable to get up from anywhere, chairs, toilets, and someone is needing to be with her 24/7.  Since I basically work from home, I am the one who is primarily here with her until her husband gets home around 2.  I know he is exhausted but I am too.  I don't know what to do!  This morning she fell trying to get off the toilet while I was asleep at 8AM after not going to bed until 3:30 this morning.  I couldn't lift her up, I was so scared.  I was so lucky my boyfriend hadn't left for work yet because I don't know what I would've done!  Once she gets up she is able to move around, but she's not slowing down at all and she is becoming her own worst enemy.  When I checked on her around 7:30 she was downstairs. She took it upon herself to go up the flight stairs to her bedroom.  What happens if her legs give out going up/down the stairs?  It's like she doesn't think about these things at all.  Do I get a baby gate with a lock?  I feel guilty for having to do these things, but I've noticed many changes in her behavior over the past couple of weeks.  My mom's only 46.  I feel like I need to treat her like she's a baby and now I've started developing severe anxiety from it.  I've found myself not wanting to come home because I know that I have to see her like this.  I'm so scared.  It is terrifying to see my mother like this.  I don't know what to do...

Denise2730

Michelle - what is your mother's prognosis right now? Is she considered stage lV? Does she need hospice care at home? Are there any cancer support groups where you live that would send somebody to the house to help take care of her?

It sounds like you need some respite care, if nothing else but for yourself. Please let us know what happens.

Denise

MyMomsAdvocate

She is on Havalen right now and while her oncologist swears it is working, it is slow.  Because of the fluid build up from the lymphedema her lung has been filling with fluid, and we have been in and out of the hospital to have it drained.  The lung specialist has said that if the tumor continues to grow it will put pressure on her heart and lungs, causing her heart to more than likely give out.  We meet with her oncologist on Tuesday. She is considered stage IV with mets to her spine, sternum, and rib cage.  She is also TN.  I'm afraid to have to ask her oncologist if it is time for hospice because then it will all be a reality (not like it isn't now) but I am so scared.

swiftbird

Michelle, I have been in your shoes, and I am a cancer survivor myself, so I guess I've seen it from both sides in my own way, and I feel for you.

My mother had kidney cancer. I took time off work to care for her, and there are some days where I can recall with total clarity where my strong dignified mother, needed help, doing the most basic things.  She fell once, and thank god, I had my boyfriend nearby to help me pick her up, but I can tell you scared the hell out of me, because I realized, had I been alone, I don't know what I coudl've done by myself! At that point, I knew I needed help and reached out for it. 

Your mother's personality may change during this time, which is alarming but is not uncommon. With all the medications, and their own coming to terms with feeling out of control --- it's not easy on them either, and no doubt, you're exhausted.  Even if she's not ready for hospice, I would strongly recommend you spend time sitting down with them as a consult or whatever they call it -- because they are wonderful listeners and they can talk you through things like.... well, maybe it's just not time, but other options for help to get you through this period, or what may lead up to needing hospice, when to recognize is the time to turn to them, and what to expect during all the stages.  Those conversations were the scariest, but most helpful I had throughout my entire experience as a primary caregiver.  They are truly angels.  

 Please keep us updated.  THere are lots of folks here who care, and, unfortunately know exactly what you're talking about.  Wishing you some rest. 

MyMomsAdvocate

Mom passed away 2/28 at about 11:30pm... we did have hospice come in one week prior, but for the most part we were still primarily taking care of her.  Luckily she had many family members come in from out of state and took some of the pressure off of her husband and myself. 

As long as those days felt sitting by her side, they FLEW by.  The service was held for her yesterday... these past 9 months praying for a cure, looking for new drugs, trials, ANYTHING, and then taking care of her because she was really really sick, and then the funeral arrangements, and funeral... and then today NOTHING.  

Where the hell do I go from here?  

NWArtLady

Oh Michelle, I'm so sorry.

susan_02143

You start by mourning. And one day you will notice that you can take a breath without being in pain. And then one day almost a whole hour will pass when your mind isn't reeling from your loss. Eventually, there will be a day when you can tell a story with your mother as a major player, and you won't break into tears. And then one day, you will be able to tell that story and laugh.

It takes time. It takes strength. And sometimes it takes some professional help.

Be careful during this hard time. Take care of yourself, and be patient with your emotions.

*susan* 

3monstmama

I'm sorry for your loss.

Denise2730

I am sorry to hear this. My condolences on the loss of your mom.

Leah_S

Michele, I am so sorry to hear about your loss. May G-d send you comfort.

Leah

QCA

Michele, I am so sorry about your mother.  Susan said in her post exactly what I would have said too.  It seems impossible now, but the day will come when you'll think of the good times with your mother, the love you had for each other, and the good memories will take place over the bad.  That will happen, I promise. It did for me and I know it will for you, too.  It just takes time, but it will come.

Kathy

sincitydealer

Michelle, I'm very sorry you lost your Mom.

Peggy

momof3boys

Michelle, I'm very sorry for your loss. It's hard, I know. I lost my Dad very suddenly in 2008, and it is a horrible lonely feeling. I'm so sorry....