ELDERCARE 911, The Caregivers Complete Handbook for Making Decisions on Eldercare

Our care giving delemma derives many of its frustrations and heartaches to our parents' and society's centuries-old expectations that caregiving for the elderly "is the children's job." This assumption is still the status quo even though you have no medical or gerontological training. It assumes that you will know the following

-when, how and how much to intervene
-how to manage insurance benefits
-how to evaluate a nursing home
-how to cope wth Alzheimer's disease
-how to resolve a host of other new and life altering caregiving dilemmas

The assuption also holds that yo will find time tocontinue:

-nurturing your children
-being a good partner
-working in your career
-maintaining your own perosnal time and space

The fact is that the world is a much different place than when our parents cared for their parents. They probably lived closer together, the women did not work outside the home and doctors spent more time with their patients, and the options for eldercare were very limited at best. Now families may be scattered across the country or continents, both partners have spent years creating families and careers and there are so manyu options for a functional life expectancy that it takes a geriatric professional to understand them.

Even so, in many familes guilt wins out, ao we continue the status quo.

But wait... We are the first generation, ever in the entire history of the world, to face the difficulties of living in a time where we may spend more years caring for elderly parents than we spent caring for our children.

Eldercare 911 understands and respects the many facets of a caregiver's busy life. The goal is to deliver tested, practical problem-solving information that saves time and money. It is a realistic guide for dealing with today's caregiving situations.

It has been recently Revised, Updated and Expanded to stay on top of the latest issues and resources.

How do elder-caregivers cope in a world where less than 1% of doctors are trained in geriatric medicine? Where up to 140,000 deaths annually occur from Adverse Drug Reactions yet only 720 out of our 200,000 pharmacists have geriatric training? And the entire caregiving system relies on poorly paid workers with only 40 hours of training for effective and compassionate care? Add to this the inherent determination of most parents to keep their adult children from knowing anything about their medical needs or financial status and its easy to see why continued attempts at intervention may seem like a waste of time. They're not. Education, planning, and communication can help overcome much of our parents' resistance to our help.

Most elder-caregivers know the drill: without orientation, training, or significant assistance, "you are expected to know how, when, and how much to intervene, how to manage medications, how to evaluate a nursing home, how to cope with Alzheimer's Disease, and how to resolve a host of other new and life altering caregiving dilemmas."(This is from Eldercare 911)

One of the hardest tasks many caregivers face comes at the beginning of the caregiving cycle: knowing whether or not to intervene, how to go about it, and which responsibilities should you take over?

Why Parents Refuse Help

Begin with the premise that like you, your mother treasures her independence and wants to continue making her own decisions. She realistically assumes that if she tells you something is wrong, you will want to help her and do something about the problem. If she is ill, she knows that in order for you to help her effectively, you must involve yourself in her private life, and that may jeopardize her independence. The result of your actions may mean the loss of her driving privileges, a move to an assisted living community or a nursing home. It may force her to admit she can no longer take care of herself and that she may have begun an irreversible slide into dependency. She senses that from the moment you begin to help her, nothing in her life or your relationship will ever be the same. She is absolutely right. Do it anyway. You will find a way to comfort your mother through the necessary changes, but for now, your assistance may be the only way to help assure her health and safety."&nbsp Eldercare 911 Answers

Elder caregivers often have to face two difficult truths. First and most important, no matter how much better we think we can make our parents' lives, most of our parents don't want our help.

"I'll never understand it. When I told my mother that the FDA approved a new treatment that would ease the arthritic problem in her knees and help her walk better, I expected her to be happy and impatient to get the treatment. Her response was, 'I never expected to live this long without pain.' She has no interest in the treatment, she's still in agony when she walks, and a year later, I still get angry and want to shake her every time I see her trying to walk without showing her pain.               Marjorie, Kansas" (EC 911)

The second, and arguably even more difficult truth is that just because your parent doesn't run his life "your" way doesn't mean your parent is doing things the "wrong" way.
 

            "Every time I went into my parent's home, I wanted to scream. They always had stacks of books on the floor by their bed and by their chairs. They take way too many photos and they never manage to get them in an album. Whenever my mother asked me to get something for her out of a closet or drawer, I used to cringe. The closets and the drawers were so full I could barely get my hand in. She's 72 and she still has tablecloths from before I was born. I was sure that no one would opt to live like that, so when they went to see my Aunt Rhoda for a week, I took two days off work and organized their whole house. I threw out things I'd never seen her use, got rid of old magazines, and gave away some of their really outdated clothes. At first, they almost passed out from shock. At that point, I still thought I had done something wonderful. Then they got really angry. Then my mother began to cry and yell at the same time: 'How dare you! Who do you think you are? Who gave you permission to come into our home and arrange it the way you want us to live? Have you ever seen me move one item in your apartment? Where do you come off doing that to us? She took back the key to their house and has still not returned it to me. --------Beth Ann, Virginia."           (EC 911)


                       

Before you decide to intervene, take a step back and ask yourself these questions: Have your parents' habits really changed? Did they manage their affairs the same way ten or twenty years ago? Is the difference simply that now you see the situation from an adult perspective rather than the way you viewed it as a child? If you've been truly objective and you still believe your parents are at risk and that you aren't trying to change their long-established habits to meet your view of how they "should" live their lives, then trust your instincts and intervene.

For more specific information please refer to "Eldercare 911, The Caregiver's Complete Handbook for Making Decisions"

Chapter 2: Knowing When Your Parent Needs Help

Chapter 4: Intervention: When? What? How?

These suggestions will help you understand the process.
 
Take a break, sit quietly for a moment and try to imagine your feelings if you were about to relinquish some or all of your independence and dignity. Try to formulate the words you would use to admit to your children that you can no longer safely handle your finances, take care of your mail, be trusted alone in your own home, or that you shouldn't be driving anymore. 

Can you actually see yourself handing over your car keys without a fight?  What would you say?

"Here, son, take my car keys because I'm the first person to admit that I'm a safety hazard behind the wheel. I know you'll rush over whenever I call you to take me to see my friends, to shop for food, go to the movies, the mall, or anywhere I want to go. Isn't that right, son?"
 
What about your finances?
 
"Mary, I'm signing all my assets over to you. Gosh, I'm not sure I can still tell the difference between a legitimate businessperson and a con artist! It will definitely be much better for me this way. You just cash in my investments and withdraw my savings whenever you think it's right." 
 
When you've stopped laughing, you should be somewhat clearer on the reasons why parents refuse help.
 
How to Intervene
 
1.      Identify Your Needs
 
Before you act, use the same management skills you use every day in your home, office, or hobby to gather and organize the information you'll need to approach your parent and talk about the issues that are important to all of you

Make a list of all of the crucial information you know and don't know about your parents: medical diagnosis, medications, finances, insurance information, rent, mortgage, monthly expenses, support system, and social life. Don't be surprised at how little you know. How much do they know about your life?
 
·         Observe your parent's current appearance and actions and try to write down the physical and mental changes you've seen in the last 3, 6, or 12 months. This can be painful, but it's vitally important. A firm grasp of the risks your parent faces will help you stand strong regardless of his anger or distress when you intervene.
 
·         Compare your options to the profile you've created for your parent. Total intervention isn't always necessary. Your parent may benefit enough to remain safely at home or semi-independent with only partial or preventative assistance for medical, legal, financial, or transportation issues. Re-read that list and you may add more options.
 
 
2.      Consider a Professional Assessment
 
            A Professional Assessment performed by a Geriatric Care Manager (GCM) often reveals problems that the family may not be aware of, but that can play a pivotal role in the "cause and effect" process. The GCM's discoveries and recommendations may help you avoid hours or even years of frustration and save you thousands of dollars.
 
·         The GCM will talk to you, then spend at least one hour or more with your parent in a gentle, respectful interview that she will use to create a written report filled with objective information that will help you make informed decisions for your parent's future and for yours.
 
·         Before you contract, be certain the report will identify current problems, potential risks, and offer professional recommendations to help resolve your parent's physical, cognitive, emotional and quality of life issues. The recommendations should consider your parent's financial capabilities.
 
 
·         Family relationships, emotions, and history play a large part in how we view our parents. It would be unusual for you or another family member to look at your parents with the same objectivity as a professional advocate. No matter how hard we try, it is unlikely we would see the picture with the same professional detachment. .
 
 
3.      Talking to Your Parents
 
      Use the information you have worked so hard to gather to help you begin the process of creating an initial care plan to assist your parent and help you achieve peace of mind. Remember to keep your plan flexible enough for you to easily change it after you discuss your thoughts with your parent or as his needs change.

• Regardless of it's truth, it's counter-productive to begin your conversation with a statement like "Mom, you've been acting very strange lately. We're afraid you're so far gone you might open the door to a psychopath or burn the house down. To save you from that, we decided you should move into an assisted living facility we've found for you."

• Whether you have a good relationship with your parent or you just tolerate each other, begin with a calm atmosphere. Talk about relaxing subjects first: bring old photos to share or talk about fun times from prior years. Above all, let your parent know you have opened this dialogue because you care and you want to help, not to take over his life.


• Remain patient. It may take several meetings before you achieve your goal. If you are uncomfortable and feel you need assistance or support, consider inviting a family member, a family friend, or your parent's clergy to help facilitate the conversation. A physician your parent trusts can also help open a dialogue on this very sensitive subject.

What If You Don't Succeed?
 
             Intervening to help our own parent often changes the way we think, feel, and act. Compassion and concern may be replaced by fear and anxiety. Feelings of hope and affirmation may be replaced by anger and depression. Too often, the longer we care for a loved one, the harder it is to remember that we also need to continue caring for ourselves.
 
            If I could create a secret formula for successful intervention (and I couldn't because there isn't one), I would begin with these four truths:
 
·         We must never attempt to intervene in another's life without fully considering the consequences of our actions and the other person's fears and feelings. 
 
·         We must not exist in a vacuum, but must recognize that life will improve for our families and ourselves if we learn to accept assistance to help fulfill our obligations.
 
 
·         We must remember that failure is always a realistic possibility, but never let the fear of failing prevent us from trying.
 
·         We must remember to craft a care plan that cares equally for our relationships with our spouses, children, friends, and careers; and protects our own financial stability and quality of life.
 
And one more: When you've done your best, no one has the right to ask more of you.