Empowering Caregivers – What You Need to Know
Rosalyn Carter made a statement that sums up the importance of understanding the facts and possibilities of caregiving. She said “There are only 4 types of people in this world: those who have been caregivers, those who are currently caregivers, those who will be caregivers and those who will need caregivers.”
Certainly there are people in the world who escape the caregiving connection by dying alone or violently – but it is a minority. In the US caregiving touches just about every life.
Caregiving can be a job or a familial or friendship labor of love. It is stressful and often so hectic that the caregiver does not have the time to think, plan and research what help is available – both financial and physical.
That’s what we’ll be cataloging this week. Because you don’t have to go it alone.
Caregivers come from lots of places, and I thank God that we are a people who can set ourselves aside and care for others who are important to us. A caregiver could be your best friend, colleague, neighbor, sibling, co-worker. The statistics tell us that most often the caregiver is a woman with a full-time job and two children. But many men are wired that way, too – or are forced out of their comfort zone by the need of someone they care for or feel a duty to.
Caregivers can be any one of us, from any walk of life, caring for all kinds of illness, economic backgrounds and cultures. We cry, we struggle, we hurt and even get mad at what fate has dealt us – and the one we care for.
You don’t have to go it alone. Tune in this week and then, later in the week, if you want to pull facts, hoe numbers or other info – go to the web at planningsense.com. The text from these radio spots will be posted there under ‘archives’.
What are some of the signs someone needs care?
You don’t want to admit it, but dad is becoming forgetful. Last week you lost your car key and sent someone to the house to get your spare. Dad insisted that he was giving them the right key, but it was obviously not a car key he was trying to give. When challenged about it – he went ballistic. Thinking about it, you know it was probably fear and frustration that caused it – but now you have to watch him like a hawk to see if he is going to hurt himself or someone else. Can he still drive? Probably not. His confusion level would make him dangerous on the roads. Now what? How do other people handle this situation? There is help for that – or whatever else you are struggling with. You don’t have to go it alone.
You can disable the car, so if dad forgets and decides he has to run an errand at midnight when no one is around to stop him from driving – the car just won’t start. It could be as simple as disconnecting the battery. This is one of the topics that should be discussed in a family meeting long before the need arises. Cars are strongly tied to our independence in the US. Giving up driving can be traumatic. Better to get the issue out on the table and see what you may be dealing with later. Maybe just asking – at what age or under what conditions do you think people should stop driving? - would work as an opener – perhaps after hearing about an accident involving an elderly person.
What other indicators?
Weight loss or gain – forgetting they’ve already eaten or forgetting to eat
Not wearing clean clothes, or not bathing or just not getting dressed, wearing shorts in cold weather or sweaters in the summer
Piles of unopened mail and unpaid bills
Acting suspicious – the neighbors are spying or hearing voices and seeing things are indicators of mental change
Hiring a companion is an option. Even a live-in companion. It could radically reduce the stress and give your aging parent or friend some consistency.
It takes a lot of energy and drive to function.
I think about this in reference to the homeless in our area. Often they just don’t have the drive or energy to handle all the pieces of life that have to be handled. Sometimes WE don’t have the energy and drive to handle it all. I think about when I owned a big house, with acres of year and an in-ground pool. That house sucked up so much of my time and energy, I just had to get out. If you are caregiving an elder, you know what I mean about energy loss. You can drive it and pour it on for weeks, months and even years and then you begin to pay the toll in decreased health and perhaps even financial and emotional problems. Your marriage can fracture. Your kids feel abandoned. Blame sets in. There are resources to help tak ethe pressure off you – at least part of the time.
Financial issues can be a very difficult topic to bring up with elders – since many families do not discuss money issues with their kids. local County Office for the Aging provides programs to assist paying heating bills, advocates for nursing home situations, will assist with finding prescription drug programs, housing, locating senior and nutrition sites and some homebound services.
Elder law attorneys – a big specialty in NYS – can help you figure out how to finance care, protect assets and prepare legal documents. Make sure you know who has the legal documents. A new health care proxy may be necessary in light of the new health privacy law called HIPPA.
Medical issues include how to pay for prescriptions and how to make sure they are not being taken too often or forgotten. Make sure you have a list of all your loved ones doctors. Find out what kind of health insurance they have. Keep a list of current medications – and help them get rid of old ones they will no longer take. Make sure the doctors have the information about the various drugs that are being taken. If you parent is becoming forgetful, the doctor may not know all the facts. Know where the health care proxy is. Arrange for Meals on Wheels if you need help making sure your folks are eating at least one good meal a day.
There is lots of help out there. You are better off co-ordinating it than doing it all alone.
Legal Issues and documents
It’s important to remember when you are looking for an attorney for help with elder issues, that all do not the experience or expertise to be your best advocate or information center. Just as in all professions, attorneys have varying levels of skill , knowledge and especially the organizational ability to get the job done in a timely manner. When you are dealing with a family member or friend who is rapidly declining in cognitive ability, the attorney often has to visit the hospital to get documents done within a very short time frame – a day or even hours. If the attorney is new to the area of elder law, there just isn’t any time to research. SO don’t call your real estate attorney who did your house closing for this. Often something not done right cannot be redone and you are the one who is stuck. How can you be stuck? Paying bills from the elders bank account. How do you do that if they are not competent? You can’t write their signature on the check – that would be forgery. You can’t go to the bank and make a withdrawal. They just won’t give you the money. Without a power of attorney or a trust, you are relegated to petitioning the court every time you need to do something financial in what is called an Article 81 hearing. You have to prove, to the satisfaction of the judge – and we have a tough one here in Onondaga County – that you really need to do whatever it is you are trying to do. Sell the house because the elder has moved into assisted living? Good luck. You may be able to put it on the market or sell it yourself, but when it comes to the legal proceedings and closing – won’t work without a power that specifically gives you authority to sell and transfer title on behalf of the owner.
A good elder law attorney is expert in figuring out the best ways to protect assets, set up necessary documents like Powers of Attorney and knows the ins and outs of Medicaid and paying for care. Many of the challenges you will run into with the financial aspects of caregiving are made much easier by a power of attorney or a trust that holds all the assets of the individual you are caring for. You may end up as trustee – or you may be working with another family member who shares the work.
Do not do this alone!
Where to get help
I know from my work on the Elder Fair that there are a lot of people and agencies in town who really care about the elders who need help. They can’t help unless you ask. You can’t ask unless you know who they are and what they do, so we’ll give you some places to start. When you think about it, you only need one knowledgeable agency person who can put you in touch with everyone else who can help. What I’m trying to say is contacting agencies should not be a daunting task. One phone call and the right questions should be all you need to find out where to go and who can help.
The county Office for the Aging is a great place to begin.
AA for Aging
Local associations for Alzheimer’s, Parkinson’s, MS have information, advice and support groups for the caregiver and the person with the disease. They also may have a list of doctors, attorneys and caregivers they can recommend.
There are also places like Oasis where elders who are looking for activities based on learning can get involved. Oasis is an organization sponsored by University Hospital and Kaufmanns. It sounds like an odd alliance, but when you read more about the group, you’ll understand why. Classes are offered on many subjects and instructors are carefully screened. I understand there are 5000 members in the Syracuse area.
So there is a lot of help out there. Please, get some.