Mom in long term care

javajunkiee · Regular Joined: 11 Mar 2009 Posts: 18

After being released from the hospital earlier this month, with no change in her treatment and no official dx of a pleural effusion, mom came home.

She was home for a week. During that week I arranged for a friend that she'd not seen in 20yrs to come down for a few days to visit. The day after she left, my mother had a mental meltdown. She has always been a challenging person due to being bipolar, but this episode was over the top. I had to call Hospice into eval her again, and it was their determination that she was unmanageable and couldn't continue to be at home. With two hospice personnel, and two EMTs, we managed to convince her to go to the hospital.

She stayed in the hospital for two weeks. She was extremely difficult with the hospital personnel the first few days; at one point the Oncologist asked me if I had been caring for her all this time, and when I said yes, he told me I deserved a medal. I should've been offended by that comment, but the reality is, I don't have the energy to be offended anymore. I've gone to the mat to defend her, protect her, care for her, and help her for the better part of 20yrs. Never, even in her worse manic fits, has she done the things she did her last day home, and I can't engage anymore. Not at that level. I feel terrible, but at this point the best thing I can do to keep her safe is have her in LT care. I can't make her happy anymore, so safe is the best I can do.

The Oncologist determined that the cancer has metastasized to the brain, which may account for some of the reason for her behavior, but that doesn't stop it. They have put her on a number of meds, including halidol.

This Tuesday I went to the LT care and signed the paperwork and came home to get some of her things together. She wasn't there but 15 minutes before I recv'd a call that she was already combative and threatening to leave. They'd placed a wander guard on her wrist, moved her from a nice room to one right outside the nurses station, and were looking for a sitter for her. I went back and managed to calm her down some, and then returned later with some of the things she needs. It was sad when I set up her tv.... she couldn't figure out how to change the channel and kept pushing the power button.

I'm going to see her tomorrow and taking her daschund for a visit so hopefully that will help her. The Oncologist said it was a matter of weeks, the generalist said less than 3 mos. She's already over the original timeline a month.

This extra month of life is not one of actual 'life'. This woman is in hell and I'm at the point I wish she was at peace. She never wanted to be this way.
_________________
Mom dx 1/19/09 SCLC. Chemo ineffective. Initial prognosis less than 3 mos. Mom passed 7/22/09. The Lord has his hands full with the whirlwind he has just taken on.

arasara · Regular Joined: 06 Mar 2009 Posts: 49

oh man Java I am so sorry Sad

I was posting regularly around the time you first came to the forum and I kind of feel a connection with you through that. I am so sorry your mom has hit her breaking point. This disease is awful and it sucks Sad

I wish it weren't so. I hope your mother can find peace in her new environment and will be as comfortable as possible.

Please don't beat yourself up about this - sometimes we just need help. With my grandma, the doctors told gramps that they wouldn't release gran to him because of the emotional burden *she was combative at a point too* You're doing the best you know how for her and I'm sure if she were in her right mind she would commend you for it.

big ***HUGZ** remember to take some time out for yourself and have a good cry or just take some time to breathe and relax - even if it's just a few minutes in the bath - it'll help Smile

Take care!
_________________
Caregivers to Pauline, age 72
Diagnosed with Stage IV NSCLC Adenocarcinoma on February 13th, 2009, passed away April 14th, 2009.

Fly high with the angels, Gram!!

javajunkiee · Regular Joined: 11 Mar 2009 Posts: 18

Thank you arasara. This disease does suck in so many ways its difficult to fathom. Difficult to fathom the diagnosis, the treatment, the effects it has on the body and mind, and how it can just take a person apart while leaving them whole at the same time.

I can make myself believe that I'm doing whats right where her medical care and safety are concerned. What I'm struggling with most is that, of all the times to reach my breaking point, its NOW? When I should be the most patient, the most forgiving, and working the hardest for her emotional well-being, I can't do it. I can't find it in me, and the only way I can keep sane is to detach emotionally. I think I'm grieving her now, and she's not even gone yet. For that, I feel like hell.

When this is over at least she'll be at peace. I don't think I ever will be where her and I are concerned.
_________________
Mom dx 1/19/09 SCLC. Chemo ineffective. Initial prognosis less than 3 mos. Mom passed 7/22/09. The Lord has his hands full with the whirlwind he has just taken on.

Tera · Senior User Joined: 31 Dec 2007 Posts: 279

Java, I felt compelled to respond to your heart breaking post. First, sending you a great big hug.

For so many of our loved ones, whether it be cancer or some other dreadful health issue, there comes a time when we can no longer safely take care of them. It doesn't happen with everyone and I thank God I could take care of my mom before she passed because I don't know what I would do had I been in your situation other than the only thing that can be done....exactly what you did. Now mind you, even though I took care of my mom, she became difficult on some issues and I had to make myself remember it wasn't her, it was a combination of the disease and meds making her that way.

Even had you not reached your breaking point, you know, deep down, that had she remained with you, she still would have been unmanagable and possibly a threat to her own safety, maybe even to your safety. As heart breaking as it is to make the difficult decision you did, you did the right thing. Iknow....that doesn't make it any easier to bear.

The brain mets on top of the bipolar, and if she is on any steroids for brain mets, that adds a whole new dimension and causes many problems. The steroids, even in low doses, can cause mental issues, but is so necessary to prevent swelling in the brain from the mets.

Try to remember that the decision you made was the best thing for her. It isn't just a matter of you reaching your breaking point....there is only so much you can do. She is where people experienced in these things can take care of her.

I am so very sorry you are experiencing this horror. And your poor mom....you know that in her right mind, she would not want you to have to deal with that. You are in my thoughts and prayers and I wish you peace and strength as the days progress. God Bless you.

pbj11 · Site Admin Joined: 12 May 2007 Posts: 2400

Java,

Can't add a darn thing and wanted to tell you how sorry I am that your roller coaster ride was the biggest one in the park.

Many, many hugs and know that we are here for you and support you 100%. You are a good daughter.

God bless,
PBJ
_________________
Husband diagnosed with NSCLC Stage IV. (Non-Small Cell Lung Cancer) Fought & lived 2 1/2 years with multiple lines of treatment.

Post describing our battle: http://cancerforums.net/viewtopic.php?t=7026&postdays=0&postorder=asc&start=0

javajunkiee · Regular Joined: 11 Mar 2009 Posts: 18

PBJ -- "rollercoaster ride".... lol. Very fitting.

Thank you for the support.
_________________
Mom dx 1/19/09 SCLC. Chemo ineffective. Initial prognosis less than 3 mos. Mom passed 7/22/09. The Lord has his hands full with the whirlwind he has just taken on.

onecoyote · Senior User Joined: 15 Jul 2008 Posts: 150

Hi Javajunkiee,
I just wanted to commend you for being brave enough to let go. That decision was probably the hardest one anyone can make. I wanted to cry when I read your post as I can't imagine how you have coped with all of that.
Big hugs and prayers for some peace of mind,
Charlene
_________________
Husband Danny, age 66,
diagnosed squamous cell June 6, 2008,
Right pneumonectomy performed with no adjuvant chemo or radiation on Sept. 2008
Metastatic lung cancer in the ribs, scapula and right kidney raised it's ugly head May 2009.
Renal cell carcinoma diagnosed May 2009
One round carbo/taxol, too weak to continue
Cancer racing like a freight train
Held my husband's hand when he passed away September 29, 2009

javajunkiee · Regular Joined: 11 Mar 2009 Posts: 18

Thank you Charlene.
_________________
Mom dx 1/19/09 SCLC. Chemo ineffective. Initial prognosis less than 3 mos. Mom passed 7/22/09. The Lord has his hands full with the whirlwind he has just taken on.

melkissa · Posted: Mon Jun 29, 2009 11:10 pm Post subject: Re: Mom in long term care

Your post really tugged at my heart strings. I feel for you so much... what awful position to be in. You have been given great advice though. I wish you the best of luck. Big hugs to you!
_________________
My dad was diag w/nsclc stage 4 & mets to spine & hips on 11/08 at age 43. Large mass on R lung & collapsed L lung. No surgery so chemo & rad 5d/wk. No results. 4/09 rushed to the hospital b/c breathing issues. Hooked up to o2 & treated for infection. Released when o2 levels were good w/help from Hospice at home. In Hospice as of 6/2/09. Passed 6/10/09. Missing you forever daddy.

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