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My sister was diagnosed with a cancerous brain tumor last year (she's in her 40s) and lives in Maryland. Although her fiance lives a couple of minutes away, he is very busy with work. She was cleared to drive, but recently had an accident due to disorientation. It seems likely that this disorientation is temporary and not related to the tumor itself (she had one other episode of disorientation/confusion). I worry that this is just becoming too much for her fiance though.
If anyone has any info regarding the following, I'd greatly appreciate it:
-How can I find a transportation service that will take her to appointments?
-She has a nurse that visits quickly once / day but I feel that she needs more at this time - how can I find additional help for her at home?
Her leave time will be up in one month. She worked for a major fundraiser for cancer research - this is who she has her insurance from. It seems that if she cannot go back to her former position, she will be let go. I had hoped that they may offer her something less demanding that would allow her to keep her benefits, but it doesn't seem that this will happen. How will she get health insurance and pay for cost of living?
I feel terrible that I'm not enough of a help. I go down on weekends as much as possible, but don't even have a car myself (I'm in NYC).
Thank you for your advice, Peachy. I don't think she'd be happy in assisted living, and I don't think she is there at this time. I guess up until this point, we were in a kind of denial. As far as we know, the size of the tumor itself has been controlled, but there are impacts on her personality and other complications that are becoming more and more apparent.
I will have to get the info to call her employer. This is my older sister and this new dynamic is a bit difficult for both of us. She still feels in control, but her judgement has suffered. Long term, we don't know what to do exactly. Her boyfriend has asked if she could live here, but the number of stairs rule out this option. I'd like for her to have a ground-floor apartment close by, but it's more expensive in NY and until we work out the long-term living expenses, I don't think it would be possible to have someone rent to her.
My sister was diagnosed with a cancerous brain tumor last year (she's in her 40s) and lives in Maryland. Although her fiance lives a couple of minutes away, he is very busy with work. She was cleared to drive, but recently had an accident due to disorientation. It seems likely that this disorientation is temporary and not related to the tumor itself (she had one other episode of disorientation/confusion). I worry that this is just becoming too much for her fiance though.
If anyone has any info regarding the following, I'd greatly appreciate it:
-How can I find a transportation service that will take her to appointments?
-She has a nurse that visits quickly once / day but I feel that she needs more at this time - how can I find additional help for her at home?
Her leave time will be up in one month. She worked for a major fundraiser for cancer research - this is who she has her insurance from. It seems that if she cannot go back to her former position, she will be let go. I had hoped that they may offer her something less demanding that would allow her to keep her benefits, but it doesn't seem that this will happen. How will she get health insurance and pay for cost of living?
I feel terrible that I'm not enough of a help. I go down on weekends as much as possible, but don't even have a car myself (I'm in NYC).
Thank you in advance for your advice.
I'm very sorry to hear about your sister's diagnosis. Although brain tumors sound ominous, there are some brain tumors that are less aggressive and some that respond to surgery/treatments, so there is always hope. Your sister needs emotional support now the most. Frequent phone calls, assistance with meals and helping with clarifying her benefits will help the most in the short term. Treating her like your sister, distracting her with activities/stories/trips etc... will help in the long term.
Sounds like it is time to speak with a social worker in the Cancer Center where she is getting care. They are very accustomed to helping with these questions.
First, does she have any disability insurance through her current employer? Now is the time to apply for disability with them. My goodness, they of all employers should be helpful with this.
A worst case scenario - if she is let go - then she is eligible for Cobra (her same insurance with her employer... but she pays the full premium herself). She should definitely sign up for this.
Next, she needs to apply for disability through the Federal program (SSDI). There is a fast track for people with some kinds of brain tumors. The social worker at the Cancer Center should know about this.
The social worker will also know about local programs to help with rides and more. Hiring people to come and clean her house a couple times a month, do any yard work etc... can help. There are always agencies that employ homemakers/CNAs etc.. who can be hired to come help for a few hours a day. The social worker should have names for those local companies.
Also, be careful not to jump in and do TOO MUCH for her... as sometimes people feel that they have already lost all sense of normalcy and control in their life. If there are things she wants to continue to do herself, then encourage her to do so.
See if you can help find a network of her local friends/neighbors who can take turns checking in on her. Does she belong to a church? That is also a potentially supportive resource of people. Phone calls, short visits, bringing the occasional meal, and help with the occasional errand and getting her out of the house are important. If people can volunteer to help driving her to appointments/treatments that would be FANTASTIC!!!! It is much too overwhelming to go to these appointments alone, although many many people do.
When my Mom was diagnosed with Cancer, her sister (who lived far away) found a local prepared food company in my Mom's town that cooked wonderful meals daily. She basically left her credit card number on file, so my Mom could order from there anytime she wanted. While we didn't use it a lot, it was a wonderful gesture. Sometimes cooking is just exhausting...
If you are comfortable sharing what city she is in, I could try to find a few resources for her.
Thank you for all the great advice sfcambridge. My sister is in Baltimore - in Middle River which is a suburb close by. Her tumor has brought about some big changes in her personality. She used to be a very responsible person, but now she has stopped taking care of things even if she is physically able to do them. For instance, she is supposed to be doing her own housework (she needs to be active), but she does not. I should be pushing her to do it rather than doing it myself, but this is so difficult. She is getting more and more inactive, and is eating somewhat obsessively, so general mobility is getting to be a bigger problem.
I don't think that these changes in her are due to depression. A big personality change has been to make her extremely easygoing. She actually does not seem unhappy - she is perhaps more unaware and is surprisingly untroubled with the details.
There can be dramatic changes in personality with some brain tumors. It is also very very very common to become depressed with brain tumors, and part of it is due to the tumor itself. The neuro-oncologist may be helpful here. I would be very open to trying a medication for depression as they can be extremely helpful. I cannot emphasize this enough. The lack of motivation, change in affect, eating could be depression. It is a symptom of the disease, so it should be treated just like pain, or nausea, or any other problem. If she'll let you, it might be helpful to go to the doctor's appointment with her so you can ask for more input. Remember, the oncologist doesn't know what her personality was like before!
If there is a Palliative Care doctor working in the Cancer Center that works with patients at your sisters stage, I would also strongly recommend adding them to her team. They help treat all symptoms that affect quality of life, and have been shown to improve mood and survival! You can't beat that. They can help with symptoms like appetite, sleep, pain, activity, mood, and many more. Maybe having a physical therapist come to the house through home health is a good idea, to help motivate her to be more active and to check that the house is safe for her.
The struggle in this situation is trying to find things that she enjoys that are also helpful to her health and mood. Taking a walk every day, for example... would be more helpful perhaps then doing housework. Let me tell you, if I had a brain tumor, I would stop cleaning my apartment that second. Most of us don't get any pleasure from housework! Maybe she enjoys yard work/gardening though... or making dinner... you know best the things that she actually enjoys.
Wow - you are near Johns Hopkins. That is one of the best in the world. I hope that is where she is getting her care. While they will be busy, they should be helpful in assembling the best team of doctors, social workers etc...
Here is a great starting page from the Johns Hopkins cancer center website
You learn the most from other patients, so get to information sessions, support groups and ask your questions there too. Make an appointment with the social worker. There is even a name/number to call about rides. Great resource.
My sister does go to John Hopkins, and I called not long ago to speak to a social worker, and am waiting for a call back. I have tried to get her out walking, but so far no luck. I think physical therapy would be extremely helpful, and will do what I can to get this service. Unfortunately I am not in Baltimore, don't have a car (I live in NYC) and can only come sometimes on weekends due to work and family. It is not as much as she needs - one reason I am seeking other assistance.
Her main emotional support there for years was her fiance (I think they've been together around 10 years). It seems difficult for him to get her to her appointments and take care of her immediate needs. She is also much changed so I imagine it's difficult for him on this level as well. I'll look into your other suggestions - thank you again for taking the time to post the detailed response.
Have you tried the American Cancer Society, or another local charity that works for cancer patients? They often have volunteers or other resources for such things as transportation, etc.
What about her co-workers? Are they willing to step up and help in any way? Hopefully, you can talk with the Human Resources person there and they can guide you. Is she a member of a book club, bingo, or bunco group. My book club and bunco groups are great with support when it is needed.
Have you tried the American Cancer Society, or another local charity that works for cancer patients? They often have volunteers or other resources for such things as transportation, etc.
As far as I know, she has not had offers for help through her former employer (a major cancer charity - I think I'm not allowed to mention by name) or co-workers there. She's received cards though. I didn't realize that they offered this type of assistance for cancer patients (transportation etc.). So far, they seem like any other employer, but maybe they don't understand that she needs help.
I have several messages out to people to try to get her to her next appointment - I don't know how she'd feel about me calling ACS about this, but if I don't hear back from someone soon, I'll talk to her about it. Thanks again for the advice.
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