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Caregiving: A Daughter's StoryLife After Loss - Surviving Caregiving
By Janice Baldon Gutter
AuthorHouseCopyright © 2010 Janice Baldon Gutter
All right reserved.
Chapter OneDefining Loss and Grief
When Does It Start?
My definitions of loss may be slightly different from the definitions of others. Both loss and grief arise during the caregiving process. Grief transpires not just after caregiving is over and a death occurs; it can actually start during the caregiving process itself.
The loss of companionship, conversation, and feelings of security from the friends, parents, relatives, spouses, etc. who once seemed so young, strong, and invincible can come as a shock. You may not comprehend what is happening right away, but at some point, you suddenly realize your role has changed from child or companion to caregiver! Watching your loved ones decline as they grow older and weaker due to age or fading health is difficult.
The first phase of loss occurs when the roles change, and you realize you must change to accept the new role of caregiver that life has suddenly thrust upon you. You suffer a loss of innocence and you endure stress. The roles of responsibility change; you are now the decision-maker about issues of well-being for those who previously made these kinds of decisions for you. The father, mother, grandparent, husband, wife, or friend you previously went to for advice, the one you depended on to know best, is now depending on you to make the decisions. They no longer always know the best decisions to make. Decision-making for their welfare is no longer in their hands. Decisions they once made for you are now yours to make for them. When did the roles reverse? It is a frightening and alarming time, but it can be rewarding and be easier for everyone involved if you do some preplanning.
Do not be surprised also if you start looking at, and come face to face with, your own mortality while you are caregiving for others. You will start thinking about your own aging process and wonder who will take care of you. It is frightening, but there is hope, and you can survive!
Chapter TwoPhase I: Preparation - Pre-Caregiving
Preparation Steps-Future Caregivers
Upon reflection after my caregiving role and based on my personal experience as a caregiver, I suggest the following steps to help you prepare for the responsibility of being a caregiver. The suggestions reflect my personal experiences as a caregiver:
Step 1: Talk with Your Relative and Recognize the Early Signs
Talk with your relative or loved one and let them know you care. Although they may be approaching the time when they need help, please remember they are still adults at this point, and therefore still capable of making their own decisions. Let them retain their dignity and self-respect, even though you hope to be included in the decision-making process.
My Mom often reminded me, "I am your mother, remember? You are the child!"
Step 2: Establish a Rapport with Health Care Professionals-NOW
Health care, social work, legal, and financial professionals cannot share confidential health or psychological information without written permission. Confidentiality clauses and new government regulations restrict the amount of information released to family members. Establishing a good rapport with the doctors, lawyers, and other professionals is important at the pre-caregiving stage. Clarifying living wills and health care options is important at this point to enable you to make informed decisions before emergencies arise.
Accompany your loved one to their physician, legal attorney, or social work professional appointments at the pre-caregiving stage and obtain the written legal releases necessary to allow you to participate in the decision-making process. Do not leave the decisions to others. There are many sad stories of people being hurt during this vulnerable period of their lives. Protect your loved one and help them make decisions about their care and future.
Step 3: Legal Requirements - Wills, Trusts, etc.
Conflicts with other family can start before and during caregiving. Ethically and morally, your goal should be to clarify the wishes of the loved one before an emergency. Attending to legal matters should not become an attempt to take advantage of or control the assets of loved ones. You should be fair and ethical; do the right thing. Greed can and will destroy you, the loved one, and the family.
Try to handle as many legal issues as possible while the person is still in good health and able to participate in the decision-making process with you. Discuss and put final arrangements in writing with the family member or friend; make pre-burial arrangements with the funeral home or church. Record information and collect family history before you lose the loved one and the history forever.
Contact an Attorney for Legal Advice
Get the loved one's legal affairs in order. The loved one should write a will or at least write down their wishes. If you choose not to use the services of an attorney, at least have the document properly notarized. Store-bought wills may not always work, especially if there are assets or other family members involved. If the loved one prefers not to disclose the contents of a will early, accept that decision, but make sure the document is completed. I recommend paying for legal advice, especially if there are assets involved. As a caregiver, you do not need to know what is in the will, but you should know where the will and insurance policies are located so you can find the documents when needed. Remember, you are not giving care for financial gain; you are giving care to ensure your loved one is being taken care of and protected. Avoid fighting and statements such as "but Mom and Dad said I could have ..." Maybe Mom and Dad said it, and maybe they did not. Get it in writing. If possible, involve others at the pre-caregiving stage.
If you do not feel involving others at this stage would be wise or beneficial to your loved one (there may be hard feelings or disruption in the family), delay the discussion of assets to a later date, but do not delay the discussions indefinitely. You must be able to prove your loved one made decisions while in a clear state of mind, without coercion or duress.
My advice again is to spend the money and get professional legal advice early, while your loved one is able to confirm decisions with legal advice, and while your loved one is of sound mind.
Step 4: Evaluate Current Living Conditions and Surroundings
Make an assessment and take an inventory of the current living conditions of the loved one now.
Discuss and resolve security concerns now rather than later. Determine if the locks on the doors are sufficient and if the neighborhood is safe. Obtain and fit assistance devices such as shower bars and larger door handles if needed. Ask these questions:
(a) Is there room for a wheelchair or access ramp? (b) Is assistance available in the bathrooms of the home or apartment? (c) Are the heights of cabinets and doors adequate for access? Educate your loved one about using assistance devices now rather than later when the need arises.
Most people prefer living in their own homes for as long as possible. If all parties involved review the immediate surroundings early, loved ones can remain in their own homes longer. Checking the surroundings and making alterations early saves time, money, and a lot of stress later.
Step 5: Look for Available Outside Assistance Agencies NOW
The fact that loved ones may need outside assistance is painful to think about; however, it is foolish to ignore the possibility until the last minute.
Start checking now to determine if your employer has eldercare benefit assistance available. Many employers offer eldercare and caregiving assistance through Employee Assistance Programs (EAP) and counselors in the workplace. Also, check with your state and local government, church, and friends for resources that may help with health or eldercare issues before the need becomes urgent. Checking to see who may be available to assist with your loved one now may avoid stress and financial strain later. Almost all state and local governments have specific agencies to help with aging, disability issues, and finding resources. Check the local listings of your city or state in the phone directory for information and resources available to you for help with caregiving.
Step 6: Nursing Homes and In-home Care Agencies
Nursing home placement is one of the biggest fears for the elderly and anyone disabled or ill. Many fear they will be forgotten and left to die, which, unfortunately, often occurs. Families must change their views about nursing home care. Do not assume nursing home placement is permanent. People do get well again and leave nursing homes.
Nursing homes are not living graveyards. Continue to care for loved ones in nursing homes and always hope they will return home. Your loved one may recover sufficiently and resume a normal life! Families should regularly visit their loved ones in nursing homes and plan to take them home for visits, or permanently if their condition improves. The care your loved one receives in a nursing home, hospital, or any health care facility may depend on the attention and care shown by the family. If the facility staff members see that the family cares and visits regularly, they will care and make sure the loved one gets the attention they need.
Pray and hope your loved one is able to return to an independent, full life. My Mom went to a nursing home for a year and later came back home! I was there every day, and when I was not there, I called the nurses to check on her. She was able to leave the nursing home and lived three more wonderful years on her own (with assistance) after her discharge before passing away (see Chapter 7). Future caregivers should start to visit and become aware of any nursing homes in their local area now early. Although it is painful to think of this as an option for your loved one, if the need arises, you will already know the best of the best in the area and its criteria for acceptance.
Some nursing homes accept government assistance, some are private-pay only and some accept a mixture of the two payment plans. Start learning now and stay informed about the choices and payment plans offered.
Do not wait for an emergency hospital stay and then depend on the social services departments of the hospital to assist you with the placement of your loved one into a nursing or rehabilitation facility. The pressure you may be under as caregiver and the workload demands of the professional social workers at hospitals may lead you to make bad decisions about placement in nursing homes and assisted-living facilities that turn out to be unacceptable for your loved ones.
You may also want to consider putting your loved one on a waiting list at the preferred homes in the area ... just in case. You can always turn down any request if contacted. Visiting nursing homes and putting your loved ones on waiting lists is a difficult process. However, be prepared. Do not wait until the last moment and then panic. Your loved one will suffer, and the placement you make may not be in their best interests if you make sudden decisions under stress. Prepare ahead of time and check the local retirement or nursing care facilities to determine the best one available for your situation and loved one.
There are many in-home agencies providing assistance to enable individuals to stay in their homes. Check with your state and local government, your employer's eldercare assistance plan, and the yellow pages for these agencies. Find out their fees.
Step 7: Pray for Guidance
Pray for guidance and divine assistance as you make decisions regarding your loved one's well-being.
Chapter ThreePhase II: Current Caregivers
Steps for Current Caregivers
Taking care of the daily needs of your loved one is a full-time job and can be overwhelming when added to the other responsibilities you may already have. The following are some suggestions and steps to help current caregivers make decisions and survive the caregiving process:
Step 1: Learn to Say No Even to your Loved Ones: Maintain their Dignity
Even though the individual you are caring for is ill, it is important that you allow the individual to assume and retain some responsibility for his or her own well-being. Encourage them to continue to do the things they can for themselves. Make yourself available to provide assistance only when needed. Providing help for the well-being of the individual only when necessary and required is vital for both you and your loved one. You must save some of your strength for the difficult times ahead when they will need help. Learn to say No and allow loved ones to maintain their own dignity, independence, and decision-making capability for as long as possible.
Step 2: Learn Health care Speak-Become Informed and Ask for Options
Once you earn and gain the trust of the individual you are caring for, it is vital you assist with health care and legal decisions by staying informed and asking what (if any) alternative treatment options may be available. Do not accept the first option offered by the health care professional or legal consultant. You can learn about other care or legal alternatives by establishing a good rapport and maintaining good communication with the doctor, health care team, or legal professional involved in the care of your loved one, and by investigating the medical condition and treatment options via the Internet or asking friends and family.
During my mother's last days in the hospital before her death, one of her doctors (not her regular doctor-he would never have suggested this) recommended tying her hands down to the bed and force-feeding her through the nose.
My Mom was not an animal. Tying Mom to the bed like an animal was certainly not an option. She was still a human being in need of nourishment. Mom deserved better treatment, and I would not allow this! I had knowledge of a better alternative.
I told the doctors to insert a feeding G-tube directly into her stomach. I told the doctors to secure the feeding G-tube with bandages so Mom could not pull it out. The doctors treating Mom at the hospital readily accepted and acknowledged it as a viable and acceptable alternative. I had knowledge of this option because my Dad had the same feeding G-tube procedure. I knew it would work!
Do not be intimidated by the status of the medical practitioner or other professional. Ask questions. Remember, doctors and other health care professionals are human beings too, and their memories and knowledge are subject to human error. Question and challenge their decisions. You must have confidence in yourself and the decisions you prayed and asked for guidance to obtain.
Step 3: Take Care of Yourself
Take care of your own emotional and physical health during the caregiving process. I recommend the following:
(a) Schedule your own doctor visits and checkups.
(b) Try to get some exercise and rest.
(c) Plan your own getaways; hire or ask someone to sit or help during these private times. It is okay to be a little selfish. Try to spend time with yourself, your family, and your friends.
Ask friends to come and sit with you and your loved one. Make it a fun social time for them and you. Your loved one may enjoy seeing other faces too, in addition to yours.
Maintaining your own health is vital to the well-being and health of your loved ones. Remember, they need you to be there for them.
During the caregiving process for my Mom and Dad, I often neglected my own emotional and physical needs. Now I am playing catch up. I did not realize it at the time, but I was entering the pre-diabetes stage, and I already had thyroid problems. I continued to gain weight. I was not overeating. I sometimes found myself depressed, stressed, and even suicidal during one stage of my Mom's illness too. You cannot take care of others unless you are healthy, both mentally and physically.
Step 4: Learn to Ask for Help-Even if you Do Not Get It
Learn to ask for help from others. Although your need for help may seem obvious to you, people cannot read your mind. Keep in mind you might ask for help and not receive it. Others may respond with, "I can't ... I can't take it," "I don't have time," "you are doing a great job, you don't need me or" "I have my own family to take care of." Ask for help anyway, but do not always expect it. Look for alternatives outside the family.
Excerpted from Caregiving: A Daughter's Story by Janice Baldon Gutter Copyright © 2010 by Janice Baldon Gutter . Excerpted by permission.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
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Table of Contents
Contents1 - Defining Loss and Grief....................3
2 - Phase I: Preparation - Pre-Caregiving....................5
3 - Phase II: Current Caregivers....................13
4 - Phase III: Former Caregivers....................17
5 - Work and Caregiving....................21
6 - My Role As Caregiver....................25
7 - Living, Loving, and Losing Mom....................29
8 - Living, Loving, Losing-Dad....................47
9 - I Am Not Your Matriarch....................55
10 - Expanding the Definition....................61
11 - Helping Others Survive....................65
12 - Moving On: Living Life After....................69
13 - Final Thoughts....................79