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GBM IV Caregiver quits...

janellie's picture
janellie
Posts: 18
Joined: Aug 2011

Another horrible aspect of GBM is the pressure, exhuastion and emotional drain experienced by caregivers.....I take my dad to his treatments every morning....stay with him on weekends and pay his bills, take care of his house and mediate with doctors and make all decisions for him regarding his care, which obviously includes many hours of research during my "down time" when I'm home with my 4 children....I am also caring for my own family and home, but that goes without saying :)

Last night at 3:00 am while staying the night with my father, his fiance/partner sent me an email telling me she can no longer care for him, it is too hard on her and she feels she is dying every day as well. She will give me this week to make "other arrangements". The ugly truth of this disease is the lie that the primary caregiver gets stuck living. Since I do all the research and background work, deal with doctors etc., I'm also painfully aware of the truth and am looking as realistically as I can at what my dad is facing...without that reality proper decisions cannot be made. In 5 days I will be left alone to care for my father who is completely incapacitated in a wheelchair. While he can still currently transfer from the chair to the toilet, I don't imagine this will be the case for long. I feel he needs Hospice care in the very near future but when you are the lone voice of reason there are consequences to speaking up. You are termed, negative, doomsday, unsupportive and a "bad influence" My dad refuses to accept his illness and speaks of nothing other than "I'll do it next year when I'm better, Doctors don't want to say it, because they want to medicate, experiment and get as much billing in as they can before they throw in the towel....Family members who have the convenience of living out of state and functioning in pure denial say stupid things like...."well, we won't come visit now, because we're praying for a miracle....we refuse to think negatively, that could kill him" ?????? So for those friends of mine who have been down this road, how do you transition to needed hospice care while "respecting" those living in denial and refusing to see the truth....

I suppose the referral will need to come from a doctor but I will need to communicate to them that I desperately need help, he clearly isn't improving AT ALL, and wandering around in some "positive" dream isn't addressing the needs he has and that I am having as a caregiver.

I hope as others go through this we can at the very least, be there for one another and share ideas about how to cope and walk through this process....the main focus on much of this site is finding a cure, a cure, a cure....but in truth there is no cure....and realistically will not be one for dcecades if ever. In the meantime, there are hurdles and challenges coming. The lie of denial is the hardest part for me and it seems to rob us of quality time and sharing true feelings with each other. I have commented that due to the lies of denial I feel that my time with him is "false". We go through motions like robots and say the "right" things or say nothing when there are clearly things that need addressed....all the while he fades away. By the time this family of mine "wakes up" and realizes the truth, we'll be writing his eulogy. I have a feeling they will say "why didn't you tell us, how long did you know...." The blame will surely fall on me.....I guess I will harken back to the many times I said.... "please come visit dad in September, October, now, tomorrow.....please.....while he's still healthy enough to visit".....

Best wishes .....

J

Beckymarie
Posts: 358
Joined: Aug 2009

Having been on your side of this horrible monster, I agree with so much you are saying. I know hope is crucial but at what point does one face the truth. When my family was with the oncologist, he would be presenting all these hopeful scenarios: the percentage of patients with GBM who lived more than a year. More than a year can be 13, 14, 15 months. Because my husband lived 15 months from diagnosis, he was considered a big success. I guess it is all ones perspective on success.

Do not hesitate to discuss hospice with your doctor. They are wonderful. Also don't be afraid to call family and be very specific with what you need for help. I had to call each of my two brothers and my brother-in-law and set up a schedule for assistance when I could no longer transfer my husband alone. If you are the primary caregiver, you know when you need help. Getting through the final months takes alot of support. You need to get your ducks in line for this.

janellie's picture
janellie
Posts: 18
Joined: Aug 2011

Thanks Becky,

I feel like a whiner today but I'm just so on pins and needles waiting for the next shoe to drop or symptom to pop up. I think with the rapid physical decline of my father his time is probably short.

The day he can no longer transfer from his wheelchair to the toilet I am making the call and if our family doesn't like it or understand they are going to have to work through the emotions they have. Right now they have the benefit of being far away, living their fantasy miracle while we are hear facing reality every day.

I don't know how you have the strength to continue to help and reach out to people but it means a lot...

Thanks and try to enjoy your Sunday evening

xoxo J

Beckymarie
Posts: 358
Joined: Aug 2009

Janellie

It has been 16 months since Terry past away from brain cancer. Everyday is a challenge. I miss him like I would miss my legs or arms if they were amputated. We were fortunate as overall family and friends were very supportive and helpful but knew final decisions were with my husband, children and myself. I will tell you the final months were spent dedicated to his comfort and peace. We were a very united team my children and I and I take alot of comfort in knowing we took him to the end with as much dignity and love as possible. I have to believe his suffering is over and he is in his new life. It is us left behind who struggle. But this is life and others have gone this path before us and get through it..as we will. God bless.
Becky

4theloveofmysis's picture
4theloveofmysis
Posts: 248
Joined: Apr 2011

Im sorry that the shoe keep droping. This is not a road to take alone. Family in denial, praying for miracles I hear you. I prayed for a miracle everyday...I dont want to face it either but its slapping me in the face everyday.
My Dad bought his daughter a casket, plot and a head stone. But today my Dad asked me what he could get my sister for her Birthday. He isnt far away he goes and sees her when he is allowed in. (Thats another story in its self) But I just truely didnt know what to say.Is he in denial? My sisters Birthday is 19 days away. I dont know if she will be here...
I hope your family steps up to the plate.As far as getting help sometimes you just have to say I need you to do... what ever it is you need them to do. Give then a day, and time. People just sometimes dont know what to do so they do nothing at all.
Im thinking about you and am truly sorry for your pain...

Tina2000
Posts: 2
Joined: Oct 2011

The wonderful people from the local Cancer Support Group led me to this site. Wow! I am not alone! I'm a bit shaky with my navigating the computer skills, so I hope I found the correct place to post. My husband and I are both 65. Husband had a seizure 9 months ago which led to the diagnosis glioblastoma stage 4, most aggressive, etc. My grown daughters who had gotten married in the 2 years before this immediately flew home and have been very active in the subsequent care. They have taken him to Cedars Sinai about 5 times, he's had 3 surgeries, Temodar, radiation, vaccine trial, and now another immune system based treatment in Seattle which will require many more visits. My daughters live far away, England, and East Coast, so they are expecting me to take over this shuttling. Meanwhile my husband has had a steady downhill course. He has lost the ability to speak clearly, he can't find words and struggles. He can't read. He can't write. He can't tell time. He has been a lawyer, so this makes his returning to work, a no no. He has had major personality changes that are scaring me. I'm the one who is getting the brunt of the anger, frustration, and blame for anything perceived as wrong. This is taking me down. I am trying to be supportive, mediate with all the people involved, but so far my view of what is happening is not validated by anyone else. I feel that he has no chance of surviving this. I have gotten to acceptance with this. I need to get home help, get hold of the family finances before husband is completely out of his head, make his retirement definite, find my own way to retirement without having a financial disaster happen. And do all this without alienating my daughters. Youngest daughter is bringing husband back from lastest Seattle run tonight. She will stay a few days. I am hoping with desperation that she will see his decline, accept it, and let me proceed with comfort care/hospice care or whatever. This in between limbo is horrible. They think he might get better and are in denial. He follows their lead and is also in denial. I will hang on to this website for any help anyone can suggest. I feel like I'm on the Titanic and the lifeboats are disappearing.
Tina

BabsOregon
Posts: 30
Joined: Jun 2011

Tina,
I am very sorry to hear about your husband's condition. My husband was also recently diagnosed with GBM (May 31, 2011)and I am his caregiver. We didn't have any children but I completely understand your quandry with trying to prepare for the inevitable without offending anyone's hope for the best. I am here with my husband every day, helping him dress, eat, deal with any electronic devices that annoy him (they all do!) but when his family shows up, I feel like I have to pretend that we are dealing with some other disease.

My husband is seeing a neuro-oncologist at University of Washington. We just got back from Seattle this week and he had a good MRI that showed less swelling and some reduction in the tumors. Are you at UW or Swedish?

I think you are right to try to get family members to spend more time with your husband. It is easier to work through the problem when everyone knows the dimensions. In the meantime, I agree with you that you have to protect yourself by getting your finances in order. As I told my mother-in-law: I hope for the best but I have to prepare for the worst.

I wish you luck. Keep posting - there is good support here.

Barbara

Grandmomof7's picture
Grandmomof7
Posts: 3
Joined: Jan 2012

It was hard enough dealing with family while care giving my late husband of 40+ years, but what happens after the passing is more stressful!
Family falls apart and no longer a family.

I don't understand.

taarph
Posts: 18
Joined: Aug 2012

I have a suggestion for you and here it is I suggest that
you print as many copies of your post as possible and send it to these
relatives. It tells me everything and is verywell written. I suggest that
you are doing all that is possible. Please stop punishing yourself
you are the miracle here. My prayers are with you and I am sure that
this will help. Just try to print one first and read it .It says it all
and everyone else is the loser.
Taarph

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