I am an oncology nurse who works in end of life care and this is a phenomenon you see all too often. Patients tend to become their disease, they lose their identity and find themselves defining their lives by their illness. So, they adapt their appearance and environment to reflect this new identity they have now become. You need to redirect him and make him understand that he has cancer, he is NOT cancer. Although they share the same space they are in no way the same. Best of luck to you, Carm RN.
Head & Neck/Throat Cancer Questions
Asked by shardin78 on Friday, March 22, 2013
So I am a caregiver for my father. He has always been a difficult patient, but add chemo to it, and it's 10 x worse!! I have no patience and I get frustrated easily. I do live with him. It's like he gave up on caring what he looks like and what the house looks like. I try to give him advice but he doesn't see it like that. I find relief when I go to work, run errands or hang out with my boyfriend. Any advice on how to maintain my sanity?
6 Answers from the Community
I'm Aliza, a Breast Cancer patient and a Medical Librarian (retired) who offers research services and referrals to those on this siter and elsewhere. I've also had the experience of being a caretaker twice so I can relate to your situation.
I don't know your Dad's age or what type of insurance he has, or whether he's a Veteran, but I'd suggest you find out from his insurance co., what types of benefits his insurance co. offers under the circumstances in terms of something like a Home Health Aide or contact the Visiting Nurse Service. If he has Medicare there may be entitlements that he has that are fairly decent especially if he has a supplemental insurance.
You need someone who can do housekeeping as well as someone who can perhaps assist him with bathing (if that's become a problem).
I've been a part-time caretaker for my Dad (who had CLL), but there were 3 other caretakers beingmy Mom,my Brother, my daughter. I was the only one who didn't live there. I lived in a different boro and my daughter lived with my parents because she was going to school there to become an EMT (she's now a Paramedic).
I was also a caretaker for my mother which was basically became XXX on earth. My mother was a wonderful person! She was brilliant and charming and talented and a professional watercolorist. She developed Lewy Body Dementia (it presents like a combination of Alzheimer's and Parkinson's disease). At the beginning when she was diagnosed (when my Dad died), she was pretty good. She understood that she had a brain disease and had a great attitude. She thought she was going to beat the disease. I retaught her how to play giin rummy and she beat me legitmately. We had cocktails while we played of cranberry juice with a thimbleful of vodka. She loved them. But things progressed to the point where she began hallucinating, started to not recognize us, shake terribly, not listen to us (us is me, my brother and daughter). We eventually got in home health aides for support (one of us was always with the aide). It's difficult if you're by yourself.
If you have valuables in your home and you're considering getting outside help, even if they're bonded, I'd advise that you pack them up and store them under lock and key. I've heard too many sad stories about things gone missing.
To maintain your sanity, does your Dad have friends that can visit him often? Can you arrange with them to visit, one each day or every other day so your Dad feels the need to dress and shower and groom himself? Can you arrange for the neighbors to visit and have tea with him? You can put out a bowl of pretzels (unsalted) and a pitcher of iced tea so no one has to fuss. or an occasional plate of cookies and iced decaf coffee. Did your Dad belong to a lodge, VFW, Knights of Columbus, Elks, Masons, etc. Call his Lodge and let the memb ers know about his situation-see if they can visit or take him out?
This is also the time if your Dad belongs to a religious community, to talk with his clergyperson about visiting your Dad. Often congregations have "sunshine committees" where a group of people are responsible for making visits to housebound folks or help folks who can't drive to take them occasionally on errands.
I might also suggest clicking on the purple box on the right of this page that says "View a list of personalize resources and useful content". There are some helpful things listed there.
The one thing I can heartily recommend from experience is that you get in touch with CancerCare. The Social Workers there are trained to deal exclusively with Cancer patients and their caregivers and all the angst that goes along with being either. Talking with them isn't like "regular therapy". It's specifically geared towards the difficulties all Cancer patients and caregivers face and they can speak with you by phone or in person. They may also have ideas for other resources for you and your father.
Contact the social worker at the hospital/center where your father is being treated and find out what services he qualifies for. I know in NYC cancer patients can get free cleaning services, meals delivered, etc. Also see if you can get him to see a therapist that specializes in treating cancer patients. It sounds like your dad is depressed. Also find a support group and/or therapist for yourself. You need to take care of yourself.
Being a caregiver is one of the hardest jobs in the world. Do you have any family or relatives who can help support you and your father. Someone who can come and stay with him so you can get away for a well deserved long week-end if not more time.
Best of luck.
Maintain your sanity by doing those things that give you relief, like going out, etc. Consider that your father, like any person going through chemo, feels like XXX mentally and physically. It's understandable that he doesn't care about his appearance or housekeeping. If you don't have the time or energy to do the housework yourself consider getting outside help. If you think your father would enjoy getting out or having visitors encourage him to do so and he may start making more efforts about his appearance.
He is depressed...my husband is too, and one of the signs is they do not keep up with their looks. They don't shower or shave for days. I know what you are going thru and it is hard on you too. Just remember these might be their last days...spend some time each day talking to him about the past. I find if I bring up subjects about our travels, or how he was raised or any fond memories it gets him back on track to handle this journey. I am a half glass full person and my husband is a half glass empty person so I know how hard it can be. Keep your chin up and when things get tough then take a break...just thirty minutes can make all the difference. Watering the lawn is good for me...some people like to take a bath....water is soothing thing. I am lifting you up in my prayers...