Overwhelmed please help GBM

I've been trying to help my sister and her husband since she was diagnosed with GBM IV in Dec. 2007. They have no children. It's been tough but manageable up until the cancer resurfaced after surgery, radiation, chemo, more chemo.... some of you probably know that scenario better than I.

A little over four weeks ago, my husband died of a sudden heart attack. He had no health problems that we knew of and he was at his job when it happened. Needless to say me and my two children are devastated, worried about the future, etc.

I have tried to put my game face on when I go to my sister's house because sometimes she even forgets that my husband is gone. My sister's condition has deteriorated over the past couple months and I see her go down every day. I go over there after work at night and stayed the day and night last night so her husband could get out for a while. I know he needs a break.

 My daughter was there to help me get her up to go to the bathroom and she eased down to the floor on us and we couldn't get her up. I summoned my sister's niece and her husband but we still couldn't get her off the floor. She was sitting on one of her feet and it was hurting her. I felt terrible and stupid and helpless. We finally called the fire department, and they were helpful and nice.

My question is, where do we go from here? Shouldn't my bro in law call Hospice or get some kind of help? What do most people do at this time? I think my sister is getting to weak on both sides of her body now to go to the shower or the bathroom anymore. She was just dragging her left foot and left arm didn't work. Now the right side seems too weak to help us help her.

 Any advice would be appreciated.

Ruby

Oh, Ruby. I am so sorry to hear what you're going through.  I'm all for family helping each other out, but it sounds like at this time, your BIL needs to bring in some outside help.   This, alone, is an incredible burden to bear, but add in the recent loss of your husband, it's simply too much for one person.  I am just so, so sorry.  Of course you will do what you can for your sister, but right now, wow. You have a lot. 

Your brother should contact the insurance co to find out what home care options there are, and talk to the social worker at the hospital/oncologist's office to see what they can do as far as lining up some help.  Even in the best of circumstances,this stage of her disease is hard for family members to do without some extra help.  It's sorely needed, and for everyone's sake,  I hope that you all get an extra pair of hands to help care for her soon.  Huge, huge hugs to you, Ruby.  

Thanks for your response, onemorehour.

Home health started coming last week but we never know when they're coming and I'm at work during the day. I know they only stay about 30 minutes and they don't help bathe or go to the potty. So far, they say they're evaluating.

 I've heard Hospice is very, very helpful. I had not thought of calling the onocologist social worker. That's a good idea. Thank you.

 Ruby

Hello Ruby,

First of all let me tell you how sorry I am to hear about the loss of your husband, my deepest condolences to you and your family.

My heart goes out to you, as if that was not enough to go through, helping your sister fight this GBM battle, it's heartbreaking.

At this point it sounds like Hospice would be helpful for your family. The love of my life for 25 years has been battling GBM all year, he is 44. I called one of the Hospice agencies in our area that was recommended by my doctor. The services they provide including weekly visits by the nurse, more often if needed, visits by an aide who can help with bathing, etc, a social worker to help with paperwork and financial assistance issues, a chaplain depending on faith for counseling. They also have volunteers that will sit with your sister in case your brother in law needs to run errands. All of the treatments are monitored by a physician and they provide the meds and any equipment (hospital bed, etc) that would be needed in the home. I know the agencies and the services they offer can vary, but this is what the Hospice I am working with offers. Everyone I have met has been kind and caring.

I have been taking care of him myself 24/7 and it gets more difficult as the weakness and cognitive issues increase. I feel better knowing I have someone I can call 24/7.

I wish you and your family the very best. You will be in my thoughts and prayers.

Take care,

Lori

It sounds like you've been given very good advice from the prior posters.  I am not at this point in my journey so I have nothing to add, but wanted to let you know that you are in my thoughts and prayers.  You've been dealt a really crappy hand and I feel for you.

 Jennifer

This is so hard.  FIrst of all I appreciate your honesty and I pray for you and your grief.  My husband has a grade iv GBM inoperable dx july 09 and his aunt who  is roughly our age lost her husband two weeks before my husband was diagnosed.  Jack, her husband, was his best friend.  She live in my house through the week so that I can work full time and I have to tell myself daily to hug her and tell her how deeply sad I am that she lost her husband of 40 years.  She tells me sometimes that she isn't sure what is worse, Jack's quick death of a heart attack, or watching my husband with this awful monster.  You are a true angel to be there at all. 

Yes, they need help.  This can destroy us all.  My prayers are with you and Hospice has some great information.  Peace, Roxy in Colorado

Ruby Darlin',

Hugs and prayers for you. I think your other posts have given excellent advice.  I would just add one little bit.  The insurance companies have what they call "case managers" or "case nurses".  They are often assigned to cancer/chronically ill patients, but sometimes you have to ask for them.  When I found ours (at Care First BC/BS) she was a Godsend.  These folks can act as intermediaries on bills, with hospitals, docs, and services.  They can help you get the help that is appropriate for you.

 You also need to know that it is OK to look after YOU.  Your grief is being put on hold, but you do need to take time for it, or you will become ill yourself, and your kids need you.

My husband Steve (GBM iv dx 11/07) is a paramedic and wants you to know that the fire company is ALWAYS ready and happy to help with lifting that you cannot do - they never mind - that's what they're there for.  Also, they often have suggestions for whom to call.

I hope this helps a bit, but in the meantime, you and your family are in our hearts and prayers.

all love,

jan

This sounds a lot like the situation my father was in before he finally agreed to go into an actual hospice.  I know that going the next step will destroy the illusion that a miracle can happen but if it can happen at home, why not at the hospice. 

But from a practical perspective, what we found was that we were no longer a family at that juncture but a group of care givers fumbling in the dark and even though there was a hospital bed and nurses, etc, we each had a slightly different take on things and that has lead to some stress and family discord.  This anxiety and stress has been building since the diagnosis and when things went really bad and really quickly, it started to bubble over.  

 With my dad in a hospice, professionals are now taking care of his medical needs 24/7 and thus we have finally had the opportunity to be family that is there for his emotional support.  It is a tough step and on a very deep emotional level one I question every day but I also know it is best for him and for us.   He gets baths, this bathroom needs are looked after and he is not falling when well meaning family members, me, made a mistake and he fell.   The medical staff in such places are incredible and they look after you as well and it sounds like you need some help as well given everything.   

 The one thing that convinced us was after visiting a hospice, one cannot help but conclude it is the right thing to do.

What an amazing group of women you all are and what wonderful advice you are giving Ruby.  Cancer sucks!  Thank goodness we have all found each other.

I keep all of you in my prayers as we continue to fight for those that we love so dearly. 

Holly -- husband dx with GBM IV in Feb. 09.

Holly,

Please look into

Immunocal www.immunocal.me   or glutathione and cancer

alkaline diet

no sugar (use stevia)

Immunocal in in your Dr's PDR under Immunotec.