Appropriate caregiving for brain cancer parent

Hello there! Welcome to Caring.com's forums. I'm glad you joined us, though I'm sorry to hear about your dad.

I have two thoughts/questions.
1) Have you talked directly with your dad's doctor about options?

2) Have you called long-term care facilities directly. Sometimes I find that their general information (i.e. website) describe the type of residents they serve in general terms. You may, very well, find one that has other residents in the same situation as your dad by connecting with them individually.

3) Is there a cancer caregivers support group in your area? The wisdom of the masses is powerful. You may find someone in a similar situation who has already been where you are.

I'm hopeful other caregivers here will have some ideas for you. hugs I'll be thinking about you and your dad.

How about maybe making him better? I have Glioblastoma, and have had a reoccurance with two craniotomies, in the past year. I am doing well in spite of the failure of the original standard treatment I was given, I thought I was a gonner. I don't know your Dad's specific situation but I'm sure if you can get the tumor under control he may last long enough for a cure to come along. I don't mean to give you false hope, but I don't want you to give it up either. Have you spoken to Dr Friedman at Duke yet? There are many clinical trials out there which can be quite effective depending on the genetics and can make a dramatic change in your Dad's prognosis. You never know once the tumor/tumors have shrunk suddenly he might be good old Dad again. It happens, just don't give up!

I too look after a family member with Glioblastoma. He was not expected to live long but is still here after 3 years. He has memory and reasoning deficits which make it challenging to care for him. He looks fine to most people and they don't "get it" that he can't take care of himself. No one seems to realize the difficulties in looking after him even though he is fairly mobile and can carry on a reasonable conversation. His judgement is impaired to the point where he needs a full-time caregiver. I need a break from caregiving but can't get it because he doesn't qualify for nursing home care and there's nobody else to care for him. We've been through all the treatments including several clinical trials. He's had too many recurrences and treatments to qualify for any more clinical trials. It is depressing for him and very stressful for me and sometimes I think I can't keep going. But I have to, so I do. Any suggestions on respite care resources would be appreciated. (We can't afford to pay for this ourselves.)

Is he on Steroids? Is he fully aware of his deficits?

@Missy 1) I have not spoken to his doctor directly. I have an appointment with him soon so will do that. 2) Investigations into nursing homes/assisted living places have started and I see exactly what you mean. There is a lot of detail not covered on the sites. I have found that just because a home has a high medicaid rating, it doesn't mean its a good place to be. 3) I've sought therapy but have not considered a support group. I'm sure in Brooklyn there must be many. I will look around and thanks for the suggestions.

@crevine1 and @anonymous commenters

I want him to be better but he's not in a mental state to help himself at all, which means I must make every decision for him. Placing him into clinical trials is difficult; I don't like making the decision to experiment with him. Plus there are the logistical issues. Giving him more of my time takes more time away from my kids, my wife and my job, none of which I'm doing well with right now. I don't want to give up on him but honestly, I am about to just give up on myself. I can't manage it anymore.

Yes, he's on steroids but he's only aware of his deficits in that he feels he should be able to do something but can't figure out what's holding him back. He can't walk well, his sight has become very poor, one ear has lost hearing, and memory and understand is all but gone. He has no capability to take care of himself; he can't even remember to eat.

A commenter on my site mentioned that her father's tumors are getting better but she also says that the damage to his memory isn't resolving. If he stays in this advanced damaged state after all this treatment, it wasn't worth it because this isn't living. I'm starting to feel getting him any treatment may have been a big mistake but obviously I wasn't just going to give up on him. If he spends another several years like this, I don't know what I'm going to do. This will ruin me and my family.

If I can afford a home, it needs to happen. But now I'm doubting I will be able to do even that. The expenses are impossibly high.

I'm 45 and receive disability and Medicaid. My treatments at the moment cost Medicaid 56k a month. My surgeries were 90k each. It leaves me in a pretty precarious position if thats the cost of survival. I was eligible for these benefits because I had paid into Social Security (SS) and didn't own anything. I would suggest you speak to SS and see if they will cover your Dad. Also, what treatment is your Dad getting? While Steroids reduce swelling the side effects are terrible and it does nothing to slow or stop the progression of the disease. They will cause extreme weight gain, a bad attitude, weakness, and fatigue. It's likely many of the symptoms he's experiencing are due to the drugs and pressure in his head. I'm currently being treated with Avastin (anti-angiogenic drug) and Vorinostat(Histone Deacetylase Inhibitor clinical trial drug)so far for the last year it has kept my tumor away. Late this Fall I'm expecting a drug from Immunocellular called ICT 121 I'm thinking it might be a cure.

I know how you feel. I too don't know how I can go on being the sole caregiver. It has cost me a tremendous amount of money to look after him and it's a very lonely job. People stopped calling to offer help or even to find out how he is a long time ago. None of his friends or former co-workers even try to stay in touch. It's as if people can't sustain their sympathy or friendship for this long. Even family members seldom call anymore. When we run into people, they invariably say, "You look so good!" Looks are very deceiving. He's not good. If he were, I wouldn't have to dedicate my whole life to looking after him. When I volunteered to look after him, I too was told he would only live a short time. It's been three years and I find myself resenting it and feeling guilty at the same time. It seems there are no easy answers in this disease.

My understanding is that the expense for a nursing home is not your responsibility, but your father's. In other words, if he can't afford it, Medicaid will pay for it. Check with someone in admitting at one of the nursing homes that has an Alzheimer's unit. That seems like a good placement for him, even though that's not his diagnosis. Hang tough!

beware of nursing homes- at best, nursing home patients are neglected. at worst, they are left in wet/soiled beds for hours, left in unsafe situations (on the toilet unattended) and discovered only after a tragic accident (such as a fall or assault by another resident) they have their belongings (usually new or valuable) stolen by staff or residents, or are just treated plain mean. the nursing home structure is miserably understaffed- 4 aides,2 lpns to 40 residents (do the math when everyone needs to eat or toilet at the same time) with shamefully underqualified employees (the aides are usually hired from a welfare-to-work program or on probation and the lpns are usually hired from an existing pool of employees whose main qualifation is that they simply show up for work ) the turnover is high, because the work is overwhelming and the staff are underpaid. all nursing home residents are fed canned, reheated meals from a commercial company- so prepare and deliver your loved ones meals if they require a sodium restricted diet(for chf and renal patients) or if you want them to enjoy healthy food. the resident doctor is usually some sort of quackdoctor-businessman who owns business interests in the facility. i urge you to visit and spend time at any nursing home before leaving your loved one there. i wish you the best of luck, and peace for you and your loved one.

Dear emsl414 - Your cautionary tale is well worth remembering, but please don't paint all nursing/care homes with one brush. Not all are staffed with felons and not all welfare to work clients are cruel, abusive or thieves. It is, however, best to visit often and check on the person's care. Unfortunately, with the bad rap caregivers sometimes avoid this option without good reason. In Minnesota all incidents must be reported to the state and a "report card" is issued for that home/center on the Internet. Google it for your state and see if one is available. Also, did you know more vulnerable adults are abused or neglected in their own homes than in quailty care centers? It pays for us all to be vigilant wherever we or or family members end up, I guess.

I can see you guys have just written him off. I understand the trials and tribulation of a caregiver, but object of the game is to make him better. All too often I hear people talk about Glioblastoma treatment as nothing more than palliative care. Well I'm here to tell you, it ain't over till it's over. Keep searching for an effective treatment they are out there. Also don't depend on an over burdened Doctor to be on top of it all. More often than not they will just depend on what they already know or whats safe for them. You have to be proactive and do your own research. The FDA only has a handful of approved treatments for GBM and those that are approved are not very good. Otherwise, just stock up on pain killers, some good liquor and have one last pity party. I hate to be so blunt or insensitive but it is what it is.

@crevine1 - I understand how you feel as a cancer survivor, but you obviously have had a much better outcome from your treatment. You are able to go online and write responses on this forum: I doubt if todayicried's father is able to do this, much less use a PC. Older cancer patients often suffer from other ailments such as heart or respiratory failure. Additional chemotherapy and radiation often accelerate decline in an already weakened person. My own father, who is 88, declined chemotherapy for his colon cancer after seeing that the odds of improving his life expectancy with chemo was slim. He is luckier than most however in that he is in generally good health with strong lungs and heart and will likely live longer than the average patient with stage 2a cancer.

But this forum is meant to be a supportive place for those of us who are caregivers to elderly loved ones. Please do not make judgments based on your own experience. I honestly feel for todayicried: my husband died of a brain tumor 20 years ago, and I was often on the verge of giving up---I was not only looking after him, but three small children as well. Finally a caring doctor and a group of supportive friends recommended a hospice for my husband. He received far better care there than in any of the hospitals or nursing homes he spent time in, and it saved my sanity. Each of us experiences cancer differently. Some of us are in a better position to look after ourselves or the person with the disease. Others are not, and for them, I have nothing but compassion.

Olympia_gal: I guess I should have asked what her fathers age is. True, there are far more bad outcomes than there are good outcomes and age is a big factor with this disease and yes, most definitely it's a huge burden and challenge to be a caregiver for a GBM victim.

My point is sometimes someone who seems too far gone might not be as bad as you think and rather than writing them off so that everyone can be relieved anticipating the end, it might be even easier to get the disease under control. I didn't get the impression she knew anything about his disease. She never mentioned the specific type of cancer he has or his treatment which concerns me. Even after I mentioned a potential cure, she had no interest or even to ask how I'm doing so well. He might not even have GBM, I just assumed it because of his apparent condition and prognosis. There are patients at my cancer center who come in on a wheel chair, have surgery, and walk out a couple days later on their own two legs. Brain Cancer can grow to put pressure on different parts of the brain and cause serious disabilities, but when the pressure is relieved, normal function returns. The question is how to shrink the mass or cut it out and come up with a durable treatment to keep it down. It might require cycles of various treatments.

I agree. Not all nursing homes are bad. You just need to take the time to look into them before picking one.

My father is 68. He has been in unbelievable health his whole life. When the tumor was diagnosed, it was the first time he was admitted to a hospital, ever.

My father was never a forward looking person. Therefore he had nothing in place to assist me in tackling such a situation.

When he called me to ask for assistance, it was an unusual request. He is someone who prefers to be solo. The day he called me, he did so reluctantly. I'm happy he called because otherwise I might not have spoken to him for a couple more weeks. By that time he wouldn't have been able to dial a phone.

@crevine1 if he were half as capable as you are at communicating, I wouldn't feel as much of a burden. I was able to contact a lawyer on the onset, who helped me place him in New York's Medicaid program, despite having too much income (legally). This helped me get him part-time home care while I worked and my wife took care of the kids. I stayed with him every day while he was in the hospital because he does not comprehend what is going on and I am fully responsible for his healthcare, so had to be there when doctors came to visit.

I go with him to every medical appointment and Avastin treatment.

I try to keep his spirits up as much as possible.

I try to take care of my family too.

I try to work and am lucky I haven't been fired yet.

Trust me, I haven't given up on him. I still have hope that he isn't a lost cause. But honestly, there is only so much one person can do. If I can somehow find an affordable nursing home where he could be happy, stimulated, and cared for, that might be the best thing for him and my family. He's at home, bored and depressed. Like another commenter mentioned, the friends have stopped coming or calling. He's alone. He's angry. He curses and yells the aides and ignores my wife. And I can't devote any additional time to him.

A nursing place might be the best for him.

I want to thank everyone for sharing and listening. It has helped a lot even if I don't have a solution yet. I hope that everyone has good outcomes. @crevine1, I want you to have a full recovery and a great life. And I promise I won't give up on my dad.

todayicried, well it sounds like your doing all the right things, I hope I have someone like you around if and when I get to that point. Thank you for sharing, and I'm sorry if I was being insensitive to your plight.I wish for you and your Dad better days ahead.

I lost my dad in March of this year to glioblastoma. It was a tough 11 months. Your story is so similar to ours and I hope you find the answers you are looking for. DO NOT GIVE UP HOPE ON WHAT IS BEST FOR YOU, YOUR DAD AND YOUR FAMILY. It is not an easy road and it's as if people truly dont understand Glioblastoma. I can tell you to talk with your dads doctor and see if they suggest Hospice based on his progression of GBM. In NC hospice was our only help as the nursing homes and rehab centers here were not set up to care for him. Our only diff is daddy kept his memory up until the last month or two and then it came and went but he was still sharp as a tack. But he could not walk and got to the point he could not sit up or even feed himself. Now, Hopsice would not step in as long as daddy was getting any radiation or chemo treatments. We started out with home health which we had to fight for. We were told no but kept going to someone diff where we finally got some help. There are also volunteer services etc available. Before Hospice stepped in I did call them and they were able to give me some leads on places to call, which led to numerous phone calls etc. I am sure things are diff by state b/c they are diff even by counties here. I would be more than happy to go back thru some of my old info and see if I can find you any resources to try. If you are interested please let me know and I will send you my email address. I wish you luck and peacefulness in the coming days.

@crevine1 I did not find your comments insensitive. You're very close to this and I believe you've put words to things my father can no longer say. The dialog has helped me think through some things and I really appreciate you sharing your story with me.

@Tenekap Thank you. I think you're right, that NY medicaid stuff is quite different from NC. And it's so complicated I had to hire a lawyer.

I'm sorry for your loss. And I hope you are dealing with it well. I can only image the void after such a difficult time.

You all have given very caring responses comeing from your knowledge and wisdom. You all have great hearts. Your intentions are all good.

This is what matters in the end.

Blessings to you all on your journey's