Carole and Sherri Mother’s Day 2008

Thank you all for your love, calls, cards, help and concern!! As many of you know, my mom has been battling lung cancer and other complications since January of 2011. She took a bad turn in September of 2011 and again after her treatments in October.

Last week, she was in the hospital again. Her BP skyrocketed and her heart rate was irregular. She collapsed and could not walk unassisted. They did a stress test and did not find the cause. They sent her home. She is still so weak, she can barely go from her bed to the bathroom. Today, she can’t even heat up her already prepared foods.

For the past 6 months I am finding I am being asked some of the same questions about her situation. So, I would like to answer some of them here.

Background: With my own illness and with IDA, as you can imagine, we are pretty well educated in the Medicare, Medicaid, Home Services Industry, Social Services, etc. Also, when I became ill, I had no insurance, no home, no hubby. I got my mom hooked up with Social Services many years ago and have been working with her Social Worker. I have also talked with Medicare, Medicaid and a specialist about a State Waiver for Home Care, Meals Services, Hospitals, Patient Advocates, Nursing and Home Services, Assisted Living, Attorneys and more. When she took a bad turn January of 2011, I stepped it up and then again last September.

TOP QUESTIONS People Have Been Asking:

1)  Can’t she move in with you?

• This is a very understandable question, as many people take in their parents when it is necessary. However, they usually have two physically able bodies and often one of them stays home or they are retired. However, I can’t even take care of myself and is no way I can take care of her. I am in need of a caregiver myself. I can barely get my food, often go without eating and she has a special diet which it is different than mine. Wayne works full-time, plus most evenings and weekends. He is doing his best to help the two of us and has for many, many years. If she were here, she would still need just as much help as she needs where she is and she is much more comfortable where she is. She has a beautiful view, patio and all on one level that is very warm and comfortable.
• She actually used to live with us, but she cannot tolerate our basement air and that is where our spare bedroom and bathroom are. Plus, there are stairs to climb, no kitchen down there and it is cold.
• We have tried to bring her over here temporarily to stay in the living room, but it is too cold and the bed is very uncomfortable. Again, even if she were here, I cannot take care of her, so we would still need to ask for help.

2)    Can’t you get her home care?

• MediCARE does not pay for Custodial Care (dishes, cooking meals, dressing, errands, shopping, cleaning), which is ONLY available through MediCAID and she does not qualify. Her Social Security is a bit higher than the cutoff, even though it is barely enough to cover her rent.
• A Home Care Service costs close to $2,200 a month just for part time, in addition to her rent, groceries, car, insurance, medical, etc. My brother (before he passed away), Wayne and I have been helping pay her bills, even though we are struggling ourselves trying to pay our bills, with my high medical costs. This is an extra expense on top of that.

3)   Can’t she stay in a nursing home or assisted living?

• Medicare will only pay for a month at a nursing facility when medically necessary and going straight from the hospital to the facility. They do not pay long-term. MediCAID does, but she does not qualify.
• There are no nursing facilities she could tolerate. They are full of horrific chemicals and they don’t make fresh, live foods versus packaged and processed highly allergenic foods. If we send her there, we might as well say our goodbyes.
• Medicare does not pay for assisted living. MediCAID does, but she does not qualify. Assisted Living is about $3,500-$5,500 a month.

4)    So, what do we do?

• We are doing our best to provide for my mom’s needs and have been doing so for many years (shopping, groceries, medications, vitamins and supplements, special orders, gas, tires, restaurant meals, visiting, etc). We have also been getting help at home through nurses, volunteers, as well as paying people a little something for their time and reimbursing them for things like groceries and gas for rides.
• The only home help her insurance or MediCARE pays for is for an RN to come over to check her vitals and give her medicine. She has had that off and on since last Fall.
• We have recently set her up with Hospice, which also allows a CNA who will come bathe her a few times a week (as long as needed and as long as the RN is medically necessary). While they are there, they can do a FEW things such as warm up a meal, bring her some water, possibly cut up vegetables for a salad. However, they cannot do Custodial Care. The above assistance is not long-term and if/when she improves or plateaus, it will end. Moreover, although they have tried to find a CNA, they cannot find one who is Fragrance Free enough to come to her home. So, she has yet to receive this help.
• She has been getting help with housekeeping through a neighbor and her daughter and her amazing landlord and friend has been a huge help when she can. We may add addition Caregiving Services from a Home Service Company as needed. This is quite expensive, so it will just be part-part time. They can help her with light duties such as warm up her food, put meals together and do some very light housework.
• We have gotten meals from a local Nutritional Cooking School and have tried to find other services. I have one more to apply for. The issues have been qualifications, food allergies, nutrition and rural location where my mom lives.

5)  How can people help?

• People can help by prayers, phone calls, a note in the mail, drop off a meal, bring groceries (for reimbursement), offer a ride and/or stop in for a visit and hugs (not reimbursable – LOL).
•  I know people are concerned about being fragrance free. If you use FF laundry products, the rest is simple. All you need is a FF shampoo and soap to use before you visit (in most cases). If you want to come often and can’t afford this, we can provide some for you!
• If you use fragranced detergents, let us know what they are. Some very mild ones she may be able to tolerate in certain conditions.
• If you cannot be near my mom, you can still give a call, send a card or drop something off.

Thank you all for your love, care and support for my amazing mom! She is an incredible lady and I hope that she can be showered with prayers and hugs in her very difficult time of battling lung cancer and losing her baby boy!!