Everyone needs a little help! We are all struggling to make ends meet and make our lives better. This is an ongoing endeavor that we all share. Once you’re diagnosed with breast cancer, needing a little help takes on an entirely new meaning. Below are a few facts and possibilities. Please note, I am using both of these terms interchangeably here.
Talk to your doctor before your surgery about the possibility of obtaining a Home Health Aide and Home Health Care. If you are going through breast cancer alone, a Home Health Aide (HHA) is a must! For those individuals with low-income, not to worry, Medicare/Medicaid/Veteran Services will cover this service if your doctor requests it. If you have individuals that can help at home, your mother or partner, still request this service. Oftentimes, if your physician or their staff know you have someone at home that is willing to assist you, they will not offer these services. Thus, I recommend you state that your partner is unavailable to do such, your children are too young or immature, and your parents are not able to assist or perhaps you are their caretaker. The bottom line is, they really aren’t available to help with drainage tubes or cleaning your wounds; and having a loved one wash your private areas (especial our children) is something we all wish, we never have to ask of them.
Here's the no-holds barred information on how to obtain a Home Health Aide/Care (HHA). (Note, this may vary from State to State or based on your own country.)
Your physician must make a referral and your insurance company will contact the Home Health Aide company they work with. They will then assign your case to a visiting nurse to evaluate your status and your needs for these services. You do not--repeat—do not want the visiting nurse to evaluate you before your surgery. You do not need services at that time and the visiting nurse is required to state your “current” condition—indicating that you do not need services and are able to ambulate and manage on your own. You want to ensure that the visiting nurse or whomever they assign visits you after your surgery when you are actually having problems and actually need assistance. Just schedule this evaluation for one or two days following your surgery.
Always have your physician prescribe everything, medication, treatment, gauze pads, health care, etc. If he/she prescribes it, your insurance company will most likely approve it. If your physician’s office says, “your insurance company won’t cover that…,” insist that they/your physician write you a prescription and request it anyway. Again, once your physician prescribes something, your medical insurance is required to provide it or justify its denial which you can then appeal.
Once the nurse or practitioner evaluating you arrives, they can determine if you need assistance with showering, preparing meals, wound care, and other assistance. This is where you bite your tongue and accept all the assistance they recommend. Yes, I know we all want to be powerful and strong and say, “fuck cancer,” but the reality is we all need a little help in the beginning. And even if we have family to help us along the way, our family may need a little help at the beginning of our journey as well.
Once you are approved assistance, the fun begins. (Did you hear the sarcasm in my comment?) Some insurance companies will allow you to hire your own Home Health Aide--even allowing you to hire a relative. Others will assign you to a third-party company which will assign an aide to you. One thing to remember is that YOU can request a different Home Health Aide or company if the aide provided is not to your liking or if the aide poses a major issue to your personal needs or beliefs. As for family, be sure that if you hire a family member, your adult child, cousin, aunt, etc, they actually do the work you need to be performed. They are being hired for an actual job, they need to earn their pay and give you the help you need; otherwise, get someone else who will be reliable.
Let me share a little bit about what I went through when I was looking for a Home Health Aide. The first person they sent was twenty and spent all her time on her cell phone. One the second day, she told me her boyfriend had just been released from prison for robbing homes on the island where I lived. I felt like she was casing my home for him. I requested a new HHA that evening.
The second Home Health Aide they sent asked me if I planned to walk every day because she was not willing to do that. She stated she was too old to walk so much daily. I had started walking daily to help with my recovery. At the time, I was only able to walk from my apartment building to the end of the block. When I explained, I was walking to help my recovery, she stated, “it was best for me to stay in bed and in the apartment” because she didn’t have the energy to walk with me every day. I terminated her immediately.
Another aide walked into my home, sat in my rocking chair and stated, “This is how it’s going to be…” She then recited all the things that she would not do for me which included helping me cook, helping me sweep the floor, and helping me shower. She said she’d hand me my medications as prescribed and anything else was out of her hands. I smiled and advised her, “Let me tell you how this is going to go…” and politely asked her to leave my home and contacted her agency for a new worker.
I went through eight workers before I accepted a woman who not only provided me with the assistance I needed but she became a friend. (Thanks for all you did, Rosa!) Rosa helped me with cooking; cleaning; setting up my medication; she walked with me to help me get healthy; and she offered companionship. We were together for two years. Rosa was great. She allowed me to feel independent while she worked in the background to ensure I received the assistance I needed. For instance: while she was there to help me shower, she safeguarded my dignity and would merely set up my shower for me. She would take down the shower hose so I could reach it; she ensured I had my towel and clothing within reach and readily available. She knew I loved to cook so she talked to me while I cooked and prepared my juices and didn’t interfere. However, she was there to lift the frying pan off the stove because I didn’t have the strength to do so after my surgery and she washed my dishes and performed minimal basic housework for me. Best of all, she loved to walk with me every day and helped me achieve over two miles during our daily walks; this ensured I moved my body and exercised to improve my health.
Do not be afraid to ask for someone that is your own nationality; for instance, it’s perfectly acceptable to ask the agency if they have someone who’s Spanish speaking or of your own culture. You can also request the aide be a woman and not a man. No, this is not discrimination in any way. It’s merely finding someone who is compatible. Most Home Health Aides will be in your home two to four hours a day. You want to be comfortable with the person who’s interacting with you and your family, especially if you have small children. If you have pets, you’ll want someone who’s not allergic to them or afraid of them. Note, the aide is not there to care for your pets nor your children. You are their only responsibility. Therefore, do not get upset with them if they decline providing assistance beyond their set duties.
Yes, some insurance plans including Medicaid/Medicare do allow you to hire a family member to act as your Home Health Aide, however, take care with this possibility. You want to be sure the family member you hire is actually going to do the required work, not slack off because you're related and they think they can make easy money. You need these services during this difficult time, it’s okay to say no to a family member requesting you employ them. On the other hand, if you have a family member that’s fabulous, by all means hire them. However, remember to be respectful of the duties they are being hired to perform and do not expect them to do additional duties or try to guilt them into providing more hours than they’re being paid for. Another factor to consider when hiring a family members is that they may not perform nor provide all the assistance you need because you’re either too shy to ask them or you don’t want to get into an argument with them when they don't perform the work you need done. Be sure to discuss beforehand how you would like to address any disagreements which might arise while they're acting as your aide. You are the best judge of character; don't allow family loyalty to overshadow your health needs.
Yes, you can take your Home Health Aide with you to doctor’s appointments. I never did. I went to all my appointments on my own. It just didn’t feel appropriate to have "a stranger" join me, besides, I’d rather use their services at home where I needed the assistance instead of wasting their valuable assistance to have them sit with me in a waiting room.
Ultimately, a Home Health Aide is a valuable resource for you and instrumental in your recovery. You are always allowed to share your concerns and request a new Home Health Aide at any time. Sometimes, it’s a matter of personalities, or language barriers, or a host of other incompatibility issues as I mentioned above. The bottom line is, you need their help, period. If the person assigned to you is not providing the services you need and which are assigned, get someone else immediately. Yes, you can request a replacement on the first day, especially if the person assigned to you is not compatible with you or makes you feel uncomfortable. This includes gender; you can require the aide be a woman as opposed to a man. They are there to make life easier, not to add to your stress. Change as needed.
On a side note, sometimes a Home Health Aide will provide companionship. This is especially true for those individuals who do not have family members to assist in their recovery; whether their family is not available because of distance or because they are not appropriate or because they do not exist. Speak to you physician about needing additional hours with your HHA. Sometimes, they can prescribe and recommend additional hours due to mental health issues. This does not mean that there is anything "mentally" wrong with you, it merely indicates that you need a few more hours of care. I was given additional hours when I became a bit depressed following my second breast cancer surgery and my lack of family support. Though I had objected to it—hey, I was trying to be “strong,” not to mention my pride and ego kicking in—my nurse health evaluator noticed that I was struggling emotionally and recommended the additional care and hours. I will admit, I hate feeling weak, even more so, I hate appearing weak. However, I’m so thankful that the Visiting Nurse noticed I was struggling and pushed me to acknowledge the same. Providing my aide with additional hours allowed me to go on my walks and have someone around to talk to. At the time, I was estranged from my family and did not have a support system I could rely on for support.
In the end, it's about what you need to help in your recovery, both physical and emotional. Don't let your ego or pride get in the way of that.
*This is an excerpt from Dr. Charley Ferrer's new book, Breast Cancer 101: What you should know but aren't told. Release date is currently set for October 2024. Click here to reserve your copy.*