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GBM and independence issues

connsteele
Posts: 232
Joined: May 2011

My son (GBM dx 4/18/11 at age 34) just finished his 5 week Temodar/radiation regimen. Because he had radiation to that same part of the brain when he was 8 for a medulloblastoma, the doc felt that his brain tissue couldn't tolerate the full standard radiation dose, so he just had 2/3 of the standard dose. While I wish he could have had the full dose to help fight this thing full tilt, I can see that cutting back on the radiation was best as it has been really hard on him re: balance, vision, fine motor, and memory issues. He was put on 24 mg. of Decadron as the doc was thinking that it was radiation-induced swelling and not tumor progression causing this rapid decline, although we won't know for sure until the follow up MRI in three weeks. He's now down to 16 mg Decadron and we're hoping that we can continue weaning him off as it's been hard on him too.

Our main issue for now re: independence. He has been living alone in the Washington DC area for 10 years. We live in western Ohio and have been staying here in his small apartment since his surgery on April 18 as he just can't live alone now (he's also a type 1 diabetic which really complicates things while he's on the Decadron.) He is unable to work and the docs agreed he should apply for social security disability. Our main problem is that he can't live alone(he has no support system here...no family, very introverted, no girlfriend or even close friends.) But we can't move here to DC area to be his caregiver/support system either. So the bottom line as we see it? He has to move back home with us. This is not going over well but we truly can't see an alternative.

His prognosis is poor: the tumors were inoperable and we've been told that treatment will not make them go away, just "slow things down." Living together in this small apartment under all this stress, with no support system for ourselves, is taking a toll on myself and my husband's relationship as well. With our son's sick leave running out, and only income disability, the cost of renting in DC area in prohibitive. Both my husband and I are retired and we can't afford to rent here either. I don't think our son realizes that things aren't going to get better and that he just can't live alone anymore. This is as hard to handle as the diagnosis, both for him and us.

We're hoping to make the move after the MRI and before he starts the 5/23 Temodar regimen.

BabsOregon
Posts: 30
Joined: Jun 2011

There are so many losses with this horrid disease and the ability to conduct a life without interference is one of the worst. It is crushing to the one who is giving care to have to deliver that news but I think it is what we have to do. You have a tough road ahead and you have to be where you can sustain your efforts best. You will be doing the right thing to take your son home. It is where you all need to be.

connsteele
Posts: 232
Joined: May 2011

Thanks for the support and encouragement. I have been dealing with such conflicting emotions on this issue, and hearing this from you helps me feel that we are doing the right thing.

DistancerunnerXC's picture
DistancerunnerXC
Posts: 44
Joined: Mar 2011

I am having the same issues with my wife.
After the radiation necrosis set in, I tried hiring home health care folks to come in and watch her.
They charged 15 bucks an hour just to watch and 20 bucks an hour if they were going to deal with any medication.
I couldn't afford that long.
So, my family tries to involve her in their daily activities as much as possible, but you know theres "compassion fatigue" that settles in after a couple of years.
I have 93 days left until I retire and so, I find that I have to leave her home alone about 2 days of the working week after I have scoured the family tree for volunteers.
So far my wife has left the water in the sink on, forgetting to turn it off with it stopped up and she left it on all day, ruining the floors and the entire finished basement downstairs..the renovators are still working on that.
I try and call every half hour at my job..but it's crazy.
The nervousness that I feel when I get within a block of my home after work is incredible..
I jump out of the truck unlock the door and immeditaly just run from room to room.
Before I even say hello!-ha
I always find ALL lights on (even the porch light!) stools stopped up and just a general mess..
and breathe a sigh of relief if nothing is burned down.
Then, I'll find my wife and get her mentally back on track..which takes about 15 minutes.
The point being to all this..We ALL lose our independence with this terrible thing..
My wifes is GBM4 along with dementia from radiation necrosis.
She can dress herself and get things out of the fridge...beyond that..it's a crap shoot.
An adjustment for caregivers and a tremendous loss of independence all the way around.

connsteele
Posts: 232
Joined: May 2011

I hear you. The best part of my day is at night, when I go to bed and can sink into the unconsciousness of sleep (I have to take a sleeping pill or I can only sleep for a few hours). The worst part of the day? When I wake up in the morning and reality sets in. At first, I would cry and feel such sorrow for my son when I would visit a place he frequented or see reminders of things he could do when he was well. I mourned for his loss but I can't do that anymore. I just have to get through another day. It really hurts to see how our son is fading away before our eyes. He's on so many meds, and I'm having trouble keeping track of them. I'm hoping when we're back home, and able to connect with family and friends, that things will get better.

panormitis
Posts: 16
Joined: May 2011

The only best thing we as caregivers can do is to try and keep our head cool and do involve them in our decisions. Even if they are so hard, but true. they are depending on help, can not stay on their own anymore. Can you imagine how hard this is for the patient!!! Just surround them with love, show them you care for this very extreme difficult time, and try to for fill their wishes, within logic. But I do think you are taking the right decision to bring him home with you, tell him you could not bear staying far from him in this situation and that you all will try to make the best out of it. Wishing you strength and patients and a lot of love with your son.

BabsOregon
Posts: 30
Joined: Jun 2011

My husband is 46 years old. He has always been athletic and a gifted outdoorsman. He is easy-going and fun to be around so he has always had lots of friends. At the same time, his ability to focus on a task and power through to a goal allowed him to run a marathon in less than 3 hours (his first and only marathon), organize unruly groups of river runners for week-long trips into wilderness river canyons, and outwork nearly everyone who joined him on the jobsite of one of his construction projects (he was a general contractor until last month).

Over the last 30 days, he has completely lost the use of his right arm, is steadily losing control of his right leg, and is having increasing difficult with speech due to weakness in his face. Friday, after a week of chemo (including Avastin) and radiation, he had a series of seizures that were not completely stopped for hours. While in the hospital, his stomach basically ceased to function and he had to be hooked up to tubes for most of the weekend to relieve the fluid that had accumulated in his abdomen. He was in terrible pain and, although we are home now, he is much worse shape than he was on Friday morning. My husband's mental condition is still good - this cruel disease just took the joy from his life by rendering him immobile.

I slept in his hospital room all weekend and every time I dosed off, like connsteele and I am sure everyone else, I woke up disoriented and had to piece together where I was and why. It was so unbearable that I found it difficult to let myself go to sleep.

We have a wonderful family and our friends are constantly contacting me to see what they can do to help but I am struggling to make myself go to work. I am years from retirement and don't have much in my retirements accounts but I am thinking about cashing them in to spend my husband's last months with him. Is this crazy?

BOSBEK
Posts: 4
Joined: Feb 2011

Hi Babs
It is so difficult to stand by and watch the terrible things that this disease inflicts on our loved ones. As much as we care for and do for our loved ones, there is still that feeling of being so powerless to influence the outcome of their illness.
I too am struggling to go to work and little in retirement accounts. I think that we have to make a decision that we can live with. If you have the capabilities to stay by your husbands' side, by all means do it. You'll never have to second guess yourself, although you may have to work longer.
Thank goodness that you have such wonderful and supportive friends and family. You need all of your support systems now. Remember. It is really OK to let people help you during this difficult time. They really want to be there for you.
Keep me posted,
Catherine

BabsOregon
Posts: 30
Joined: Jun 2011

Catherine,

Thank you for your kind words. I was always a planner - I prided myself on being a problem solver. What a joke that is in the face of GBM. It is a struggle now to think past this afternoon. Having confirmation that my thinking isn't completely misguided is a huge relief.

What is your situation?

Babs

BabsOregon
Posts: 30
Joined: Jun 2011

I have been thinking about your situation since I read your post a few days ago. I wish I could offer some help - the disease itself is bad enough without having to cope with the gaps in caregiving. Hang in there.

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