Saturday, January 3, 2009


The new year is all about Resolutions. People make them, with good intentions....and then in 3 weeks find that it's just easier to keep doing the same old things.

In caregiving, and in chronic illness, we like things to stay the same, don't we? I mean, even if something is hard to do, if we've done it before, over and over again, at least we have confidence that we CAN do it.

This year is going to be all about changes for us. My Older Daughter is working lots of hours and is helping two moms who are going through difficult times. One mom has had a difficult pregnancy and just delivered a premature baby. Another is having neurological symptoms caused from an inner ear issue. Both have 3 children that need care. So, she is pulling mommy duty for 6 kids under the age of 5. She's loving it.

Many have asked us, "why doesn't she do more to help you?" Well, I'm putting this on the internet to answer the world's question. I don't want her to. She is a girl. She needs her dad to be her daddy, not her patient. They have a special relationship and I don't want them to loose it. What our older daughter does for us is important. She is my friend and running buddy. She takes her little sister with her frequently to run errands, giving Dear Younger Daughter a break from routine. When Dear Older Daughter is home, she helps around the house, cooks, runs errands and keeps things straightened up.

Dear Older Son is getting married in a few short months. He has been out of the home for several years now, working with various ministries. He has been a help to our family in ways I can't go in to. He is a dear son, who wants to care for his mom and dad.

Dear Younger Son is taking a few classes at the community college near our home. He works four hours a day and will need time to study in the afternoons/evenings. He has been my right hand man. I don't leave our home unless he is here. But, now, it is time for him to start making his future happen. He wants to do something in the medical field, like an RN or a Physician's Assistant. I'm sure he'd like to marry and start a family some day, and now is the time to prepare for that. He's been very sacrificial, but it's his turn.

Dear Hubby requires 24 hour supervision. He may not need something for an hour long period, but someone has to be here to protect him, make sure he doesn't fall, get him water, food, to help him in and out of bed, get him out if the house catches fire, etc.

So, our lives are changing. I've talked to one family in our church, and the husband has agreed to come once a week and sit with Dear Hubby for 4 hours. What a blessing. This is a $50-80 gift, once a week. During this time, I will be focusing on Dear Younger Daughter. She needs to have mama time and we have plans for some little field trips and we'll even run errands.

We will probably have to hire outside help. The thought of that is overwhelming. Finding someone you trust, someone who will not abuse your husband while you are gone, and someone who will not rob you of your small, sentimental treasures.....I've even heard of people who steal toilet paper and shampoo. Can you imagine???

No, Medicare does not pay for what is called "custodial care". This was taken from Medicare's Website:

What is Long-Term Care?

Long-term care is a variety of services that includes medical and non-medical care to people who have a chronic illness or disability. Long-term care helps meet health or personal needs. Most long-term care is to assist people with support services such as activities of daily living like dressing, bathing, and using the bathroom. Long-term care can be provided at home, in the community, in assisted living or in nursing homes. It is important to remember that you may need long-term care at any age.

This year, about nine million men and women over the age of 65 will need long-term care. By 2020, 12 million older Americans will need long-term care. Most will be cared for at home; family and friends are the sole caregivers for 70 percent of the elderly.

While there are a variety of ways to pay for long-term care, it is important to think ahead about how you will fund the care you get. Medicare pays only for medically necessary skilled nursing facility or home health care. However, you must meet certain conditions for Medicare to pay for these types of care.

Most long-term care is to assist people with support services such as activities of daily living like dressing, bathing, and using the bathroom. Medicare doesn’t pay for this type of care called "custodial care". Custodial care (non-skilled care) is care that helps you with activities of daily living. It may also include care that most people do for themselves, for example, diabetes monitoring. Some Medicare Advantage Plans (formerly Medicare + Choice) may offer limited skilled nursing facility and home care (skilled care) coverage if the care is medically necessary. You may have to pay some of the costs.

The truth is: If you have any income other than Social Security or any savings you will find there is no help for you financially. I found one website where people who are caring for chronically ill spouses shared that even WITH Medicare coverage, they were spending an average of about $5000 a year on additional medical expenses. This included co pays, deductibles, custodial care help, and medical supplies.

Think it through....could your family afford to pay an additional $300-500 a month for medical care? Many cannot and that is part of the reason caregivers are worn out, burned out shells of who they once were.

While custodial care sounds like easy stuff, it's not. It's heavy lifting, being on call 24 hours a day, be wakened in the night, and still having to run your home and family.

So, our life is about to change....again. I'm feeling overwhelmed and frightened about it. I'm so grateful that we are out of debt. I'm grateful that we have learned to live a simple life. I'm grateful that I have a loving and supportive family. But things change, and for some of us...that's difficult.

If you are a caregiver, take some time to think this through. Do you need to make changes? Is it time for help? I know from personal experience that it is difficult, but we have to survive to the end. Call someone and ask for help.

Do you know someone who is a caregiver? Perhaps it is time to contact them. Take a day to visit. Do give at least one hour's notice...not much more or the caregiver will have mowed the yard, cleaned the house, bathed the family member, washed the car and made a "little snack to share"!!!!!

Get a first hand peek at what type help they need. Take a look at the yard. Is yard maintenance needed? How about house repairs? Housework? Would a meal once a week benefit them? Maybe a call to pick up $20 worth of groceries now and then would help. How about a plate of cookies and a cup of coffee?

Warning: Caregivers are tough nuts to crack. We don't like to ask for help, we don't know why....we feel like we should be able to handle this, but we can't do it alone. I think deep inside we all know this. Maybe the family is pressuring the caregiver to do more, alone. Or maybe the ill person is refusing help. Someone has to step in and have a heart to heart. If you aren't a caregiver, maybe YOU are that person. Be gentle, loving but firm. But ultimately, it is their decision. Wait....things will change, and maybe your help will be needed tomorrow.


The Calico Quilter said...

Long term care insurance, is a sometimes expensive but often necessary option if you or your spouse have a condition that you know will only get worse with age. Even if you think you will be able to continue to care for your spouse, there is no guarantee that you won't develop a health issue that impedes you from doing what you now can handle.

Anonymous said...

Thank you for letting us get a glimpse into your lives.
Getting an idea of how to help your family is a benefit to us, who have not walked in your steps...
Love you all and praying for a sweet rest tonight for you.
Rhonda TN said...

It is a long and winding road....that doesn't get any easier. I have been doing it for sixteen years. One of my New Years resolutions is to start paying a little more attention to me. Let's see how far I get with that!

Leedra said...

You reminded me why I am paying monthly premiums for 'just in case' I or my spouse will need long term health care. But I know that is not what this post is about. Thank you for sharing, and I will keep my eyes and ears open to those around that may need help.

Darlene B said...

Praying for you all - that God opens doors and makes clear what caretaker is the right one for your family. Thanks for sharing.