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Think Before You Move
By: AGING ARKANSAS newspaper
When your loved one can no longer live alone, it may seem logical to move them into your home. In some cases this works well; in others it is a disaster for both the patient and family members.
Careful and detailed pre-planning about all aspects of such a move is essential for a successful experience.
The emotional changes will be considerable. The parent-child relationship has changed profoundly and the needs of all members of the household should be considered. Think about how this move will affect your routine and that of the rest of the family.
The physical changes you may need to make in and around your home may make life easier for everyone or they may be just too expensive or impossible to do.
Caregiving is important but challenging work. Are you up to it? This month’s Family Caregiving insert will help you realistically assess the prospective changes.
Emotional Adjustments Needed When Caregiving in Your Home
By Lida K. Simpson
You’ve decided your mother will be better off, at age 85, if she lives with you in your home. You have made all the practical, financial and physical arrangements. You’ve talked with your mother and she agrees to give it a try. Or, she doesn’t agree but you insist on trying anyway because her options for living independently are dwindling fast.
Before you make the change, have you truly stopped to consider the emotional journey the entire family is about to embark upon?
This journey may lead the caregiving family and the elder family member down many paths to unknown, unfamiliar and unexpected places: places of great joy and places of deepest despair and anguish. This journey will be as unpredictable as life itself and cannot be fully planned or directed in any way. This journey has the potential to be enjoyed, endured, regretted and valued, all at the same time. Keeping one’s emotional eyes wide open may be the best travel tip to seeing where this journey is taking the family.
Let’s look at some of the emotions that might be encountered along the way.
Guilt feelings
Guilt may be the main emotion you are acting from in bringing your parent into your home in the first place. Are you being the “rescuer,” trying to save your parent from her unhappiness in another place? Do you feel guilty about having moved away from your parent years ago to pursue your own life?
Perhaps your parent has her own guilty feelings and thinks herself a “failure” for not being able to manage as an independent adult. Your children might feel guilty because they resent grandma taking their room. Guilt will happen if it has not already. If you take on the caregiving of an aging parent, sooner or later you will feel guilty about something you did or did not do.
You may be tempted to act as the “rescuer” for your elder family member, thinking you can save the day by getting them out of an environment that is not working for them. Maybe you can, but remember, you cannot spare your relative every pain or make an imperfect world a perfect place. It could be that your parent is in such a negative emotional place that she will not find happiness anywhere. Trying to be the “super caregiver” who fixes everything can end up exhausting you and can lead to serious mental and physical health problems.
Anger and frustrationSometimes caregivers have an unspoken hope that bringing an elder family member into their home will heal old wounds and bring a new intimacy that they never felt with the person. Another possibility is that this new reunion of the family may not heal the wounds but rather reveal just how much the wounds have festered and worsened with the passing years.
Your parent may resent her increasing dependency on you and react with bitterness or hostility towards you and anyone else who tries to help. Her pride may be injured if she has to acknowledge financial dependency. Her personal integrity may feel threatened by her physical dependency on your caregiving. Instead of gratitude and thankfulness, she may respond with hostility and rejection.
Maybe your parent never agreed to come to your home in the first place and is feeling angry over her disempowerment and loss of independence. Her anger may trigger your anger when you are trying to offer her the best option you can and getting no appreciation or understanding of this fact.
Sometimes when a child becomes the caregiver to a parent, it seems there is
a role reversal. Yet the parent should never be viewed as “child” in this changed dynamic, no matter how great their dependency on you becomes. Your parent remains an adult with a complex history all her own. This truth must be respected even when it seems you are the one who carries the memory of how she used to be.
Feelings of depression
Unresolved feelings of guilt, anger or frustration may ultimately cycle into a pervasive depression for the caregiver or the care recipient. These feelings of hopelessness and helplessness should not be ignored or repressed as they will only intensify with time. Joining a support group or seeking professional counseling are two options to alleviate depression.
If you suspect your elder parent is depressed and that this emotional state is an underlying factor in the negative experiences you might be having in the home, then the entire family might benefit from urging the person with depression to seek medical or psychiatric treatment. Many older people resist trying an anti-depressant medication but often agree to do so with family encouragement.
The “Sandwich” sensation
Many caregivers who assume the in-home care of an elder parent still have children living in the home as well. These caregivers often get “sandwiched” between the conflicting demands of motherhood and dutiful daughterhood. This is when the concepts of boundaries and setting limits are well worth studying.
Overextending yourself by trying to meet everyone’s needs can lead to caregiver stress and burnout. Take time for yourself when you feel the world is asking too much. Plan some time alone doing a favorite activity, talk to a friend or think of ways to simplify the demands on you.
Call a family meeting to discuss your need for assistance. Just because you agreed to take care of your parent does not mean you agreed to give up all the rest of your life plans.
Even though the emotional journey of family caregiving will be different for every family, there are many shared universal experiences. One of the best ways to cope with the emotional issues of caregiving is to join an active support group of caregivers. There you will discover you are not the only one navigating difficult waters plus learn ways of coping that can be very valuable.
Sometimes when a child becomes the caregiver to a parent, it seems there is
a role reversal. Yet the parent should never be viewed as “child” in this changed dynamic, no matter how great their dependency on you becomes. Your parent remains an adult with a complex history all her own. This truth must be respected even when it seems you are the one who carries the memory of how she used to be.
Feelings of depression
Unresolved feelings of guilt, anger or frustration may ultimately cycle into a pervasive depression for the caregiver or the care recipient. These feelings of hopelessness and helplessness should not be ignored or repressed as they will only intensify with time. Joining a support group or seeking professional counseling are two options to alleviate depression.
If you suspect your elder parent is depressed and that this emotional state is an underlying factor in the negative experiences you might be having in the home, then the entire family might benefit from urging the person with depression to seek medical or psychiatric treatment. Many older people resist trying an anti-depressant medication but often agree to do so with family encouragement.
The “Sandwich” sensation
Many caregivers who assume the in-home care of an elder parent still have children living in the home as well. These caregivers often get “sandwiched” between the conflicting demands of motherhood and dutiful daughterhood. This is when the concepts of boundaries and setting limits are well worth studying.
Overextending yourself by trying to meet everyone’s needs can lead to caregiver stress and burnout. Take time for yourself when you feel the world is asking too much. Plan some time alone doing a favorite activity, talk to a friend or think of ways to simplify the demands on you.
Call a family meeting to discuss your need for assistance. Just because you agreed to take care of your parent does not mean you agreed to give up all the rest of your life plans.
Even though the emotional journey of family caregiving will be different for every family, there are many shared universal experiences. One of the best ways to cope with the emotional issues of caregiving is to join an active support group of caregivers. There you will discover you are not the only one navigating difficult waters plus learn ways of coping that can be very valuable.
Think before the move
Take the time to identify some of the possible emotional implications of caregiving for your aging parent in your home. Involve the whole family. This analysis doesn’t necessarily mean that you will throw up your hands and declare that it won’t work. Caring for the needs of an aging parent may well give you one last chance in this lifetime to share some of your best days together.
If the relationship between you was troubled in the past, it may stay troubled into the present with no reconciliation possible. Even in this most bleak of emotional outcomes, some resolution of the relationship may be found that will enable you as a caregiver to move forward in your adult life, knowing that you have done the best you could.
Boomers Not Planning for Parents
Clara John’s ability to do many of life’s routine tasks started to drift away 10 years ago as Alzheimer’s disease took hold. Her husband James, now 84, could not bring himself to admit that she needed more care than he could give.
That left two adult sons to ponder the difficult questions about their mother’s future, questions that had never before occurred to either of them.
“We were two guys who didn’t now anything about caring for elderly parents,” said Greg John, now 43, who co-owns a marketing and advertising firm. “Our parents were always healthy. It seemed like a few weeks earlier, they were doing great and then we were at this point where we thought, ‘How did this happen so quickly?’”
The Johns eventually sought the help of an elder care consultant and in 1997 got their mother into a nursing home. Their father visits frequently from his home less than three miles away.
They are not alone in facing tough decisions about aging parents.
A survey by AARP of seniors over 65 with children over 35 revealed that 67% had not talked with their children about what their future needs might be. Yet experts estimate the number of older persons needing long-term care will double over the next 25 years to over 14 million.
Many of them have no plan for their end-of-life care. “We don’t look at death as a natural part of life. We fear it,” said Suzanne Mintz, president of the National Family Caregivers Association. “So we don’t want to go there.”
Mintz knows firsthand what delaying an end-of-life discussion can do. When her own father had a stroke, her mother became the primary caregiver.
Though Mintz urged her mother to straighten out their finances and figure out a long-term plan, it took a while before her mother gave in. Just as the family was about to jointly decide what to do, Mintz’s father had a medical emergency that required him to be admitted to a constant-care facility immediately.
“Instead of being a proactive meeting, it became, ‘Wow, we have to find a nursing home this weekend,’” Mintz said. “You never know when that major problem is going to occur and it pays to put in order, what you can, as soon as you can.”
Financial planning essential
The costs of a parent’s care can be astronomical even in the best of situations.
Before the Johns put their mother in a nursing home, they had in-home care for her. When the period covered by private insurance ran out, the Johns paid $30,000 of their own money for a year’s worth of home health aides.
A year of nursing home care will cost, on average, $56,000. The average stay at a nursing home is two and a half years. Medicare only covers nursing home costs under very specific conditions for a very short period of time. After a few weeks, Medicare doesn’t pay for any nursing home care.
For wealthy people who want to protect their assets, long-term care insurance is the solution. Most people don’t know this specialized kind of insurance exists. Only 5% of nursing home costs are paid for by long-term care insurance.
“Here’s the most important factor about long-term care insurance: You’re best off if you purchase it way, way, way ahead of when you need it,” according to Elinor Ginzler, AARP’s manager of Long-Term Care and Independent Living. Premiums increase with age. It’s important to remember this is not an option for everyone because it’s expensive Ginzler said.
Multidisciplinary assessment is best
Dr. Muriel Gillick, an expert in geriatric care, recommends a multidisciplinary geriatric assessment that involves a nurse, a doctor, a social worker and other health care professionals evaluating the patient. Gillick said this provides a more comprehensive service plan.
She also said that many people want to make an end-of-life plan, even those who don’t do it.
“When people are asked if they want advanced medical planning, 95% say they want to. What’s kept them from doing it is that no one brings it up,” Gillick said. “Children trying to protect parents have a hard time bringing up frightening things, but it’s something that needs to be done.”
The Associated Press
Getting Your Home Ready: Assess Changes from Patient's Viewpoint
By Rowena Rye
If you plan to care for a loved one in your own home, there are many considerations you may need about the physical arrangement of your home. Careful attention to these now will help make the change a positive one for both of you.
Allow for a realistic period of adjustment
Moving a person with memory loss is more complex than relocating someone who has physical health problems alone. Expect that your family member will be significantly more confused and may ask repeatedly to return home. He or she may even try to pack and make arrangements to leave. Be prepared with activities you can do together and pleasant conversation that may help to distract her attention. Be reassuring that everything is all right and that she is safe with you. Watch your body language. Make certain that you are not accidentally communicating your own anxiety or apprehension.
If you are in a support group, ask others who have cared for their parents how that managed this transition. If you are not in a support group, consider joining one.
Have a plan before you make the move
Think about how you will arrange the bedroom and about easy access to the bathroom. Bring along some of her favorite things (her bed, a favorite chair, pictures for the walls) and purchase any new items that will help make her more comfortable and will help you care for her more easily. If she has a beloved pet, plan to bring it along if at all possible.
Structure your day
Before the move, develop a daily schedule for activities, meals, rest periods, bathing and grooming, a daily walk, etc. and build routine into your day.
Consider what your loved one’s habits have been as you develop a realistic schedule (e.g., If your father has been waking up at 6:00 for 40 years or going to bed at 1:00 AM since retirement, recognize that this is unlikely to change now).
Be flexible
Maintain your routine, but within that routine allow for some flexibility. Build in plenty of time to get things done, so you can avoid stressful hurrying. Pushing to get from one activity to another can trigger angry outbursts and increase resistance.
Be sensitive to clues that you are in too great a hurry and she is becoming anxious. Think more about the process or activity of getting dressed instead of the goal of getting her dressed. In caring for a loved one with memory loss, focus on living in the moment. Use reassuring touch, a smile and encouragement as you help her. Leave time so she can do some things for herself. If she becomes upset or angry about something, use distraction and find something pleasant to grab her attention, relax and let it go.
Patient’s viewpoint
Take a good look around and try to see your home through your loved one’s eyes. Are rooms and hallways brightly lit to ensure safety? Is carpeting well secured to avoid accidents? Ideally the carpet should be a solid color and contrast with the walls. This clear definition will aid depth perception and help her to walk more confidently. If you need to use a lock on doors for safety, place it very high or very low on the door. Get a lock that matches the color of the surrounding area, so it does not stand out or paint it to match. For things like light switches, use the opposite approach. You want this to be easy to find, so use an obvious, contrasting color as you did when choosing a carpet.
In the bedroom
Use a favorite blanket on the bed and comfortable pillows. A stuffed animal can be reassuring. Keep lighting soft, but make certain there is adequate light to see clearly. Have picture books or albums with themes you know will interest her or highlight a favorite hobby.
In the bathroom
Make certain that towels and washcloths are within easy reach. If cosmetic items tend to clutter around the sink, put them away. Leave out only items like hand soap, lotion, toothpaste and deodorant. Make the bathroom as warm and inviting as possible, with fun things to look at, inviting colors and bright lighting. Have her favorite robe and slippers handy. Consider relaxing music, a neck or back massage to put her at ease. Scents are a natural in the bathroom. Consider a light, soothing scent, nothing too strong. Make sure the water heater thermostat is turned down to prevent the possibility of accidental scalding. Make interesting conversation while you help her to bathe to keep her relaxed and divert her attention. Consider buying a toilet seat in a contrasting color to make it easy to find.
In the kitchen
Make certain sharp or breakable objects and household cleaners are put away. If necessary, consider using child-proof latches to discourage rummaging through drawers, but consider leaving one drawer just for her with safe and interesting things she can take out and examine when she is looking around for things. You may wish to use sturdy unbreakable plastic dishes. Consider installing a “kill-switch” on the stove to prevent her from attempting to use the oven or stove top without assistance. A small kitchen table can be a great place to visit and to do activities together.
The backyard
If you do not have a fenced-in yard, this is the time to do so. Ideally, she should be able to safely go outside and have a comfortable, secure place to walk about or just sit and relax. Have a way to lock the gates.
Use heavy, comfortable lawn furniture that cannot be easily moved or tipped over. A table and several chairs will provide a comfortable place to have a cup of coffee. You can also use the table for outdoor activities.
Raised flowerbeds are a lovely addition. Bird feeders and birdbaths can provide an opportunity for interesting and enjoyable observation for you both. Go outdoors together as long as she is able. In chilly weather, bundle up but try to have some time outdoors and fresh air everyday.
Ask for help when you need it>
Make arrangements in advance for respite care. Adult day care programs can be a valuable source of activities, socialization and even health care services and monitoring for the patient. They can provide a crucial respite for the caregiver. In-home respite may also be a possibility. Ask family and friends to give you a break on a regular basis.
Ms. Rye writes for the Western and Central Washington State Chapter of the Alzheimer’s Association.
Are You Strong Enough to be a Caregiver?
American families provide about 80% of the care that older family members need. The amount of help needed by some older people can be extensive.
However, 75% of caregivers reported only minimal or moderate amounts of strain or stress.
When strain did occur, it took the form of deteriorating physical and mental health, difficulties in family relationships or reduced social activities and isolation.
Nearly all caregivers experience some problems: 80% say some aspect of caregiving was difficult, tiring or emotionally upsetting; 60% said they had no clear idea about what was best to do in the caregiving situation; more than half said there were too many demands made on them.
The most basic strength that individuals bring to caregiving is their health---the physical and emotional capacity to meet an older person’s care requirements.
There are several ways in which health plays an important role in caregiving. It takes physical strength to maneuver a person in and out of bed and help them in the bathroom.
People in good health have the stamina and energy to provide care over an extended period of time.
Many caregivers have multiple responsibilities. The physical drain on a woman caring for a parent at home, doing all the housework and holding down a job outside the home is enormous. Yet this situation characterizes many women---91% of caregivers are daughters---who are caring for their parents.
Good health also includes emotional well-being. Being emotionally strong and stable plays a critical role in the caregiver’s ability to provide care, day in and day out.
In a study by the Benjamin Rose Institute in Cleveland, Ohio, researchers found there are several things successful caregivers do to maintain their physical and mental health:
-Arrange for a break from your caregiving duties on a regular basis.
-Stay socially active. Maintaining activities you enjoyed before becoming a caregiver is important and is a big help when your caregiver duties end. Avoiding isolation is critical to long-term caregiving.
-Do whatever is necessary to get enough rest. The cumulative effects of inadequate rest quickly diminish your stamina, patience and general health. Prolonged loss of sleep can cause personality changes in some people.
-Maintain a positive attitude toward yourself and your situation. Caregivers in the study who experienced the least stress were those who felt in control of the things that happened to them. They maintained a very positive outlook by focusing on the small successes they had achieved in caregiving. Plan short-term goals so you will see results more easily and more often. Many aspects of caregiving cannot be controlled. Accepting things as they are can be helpful when caring for a person who has a chronic illness where improvement is unlikely.
-Find an outlet for your worries---talk to a trusted friend, write in a diary, join a support group.
Making Bathrooms Safer
By Anna C. Yost and James Martin
Home bathrooms often need adaptation so the elderly person can remain independent. Ensuring bathroom access and safety may require room adaptations.
Bath
Falls often occur as people get in or out of the tub. Non-slip suction or rubber silicone appliques in the tub will help prevent falls. A non-skid, latex-coated bathmat on the floor beside the tub provides firm footing.
Grab bars for the tub
Grab bars around the bathtub are a necessity for safety. These bars should be institutional-grade, stainless steel and installed according to the manufacturer’s directions for firm, solid support. These bars are expensive, but under no circumstances should towel rods or improperly installed grab bars be used as bathtub aids. They will not support a person who loses balance.
If the tub is free-standing at both ends, a vertically placed pole on the access side of the tub may be used. This pole should be about one and a half inches in diameter and extend from floor to ceiling.
Tub seats
A variety of portable seats, chairs and benches are available if sitting on the bathtub floor is difficult or impossible. One type of seat has side flanges that adjust to fit any shape and size tub. Inside-the-tub chairs with backs for greater comfort are also available. A transfer bench with adjustable legs allows the bather to sit on the bench that extends outside the tub and then slide their legs to the inside of the tub.
Any chair or bench must have non-slip rubber tips on the legs and be comfortable. When using these seats in the tub, a hand-held shower head is almost a necessity to direct the water where needed.
Toilets
The standard 15 to 17-inch height of toilet seats creates a problem for many people, especially those with arthritis, hip, knee or back problems. Elevating the seat from five to seven inches will give better leverage in regaining a standing position.
There are several types of removable and permanently-fixed raised toilet seats available from supply companies. A molded plastic seat is the simplest way to increase seat height by about four inches.
For a more permanent raised toilet, a plumber can put the stool on a wooden platform made to fit the toilet bowl base. If building a new bathroom, consider a wall-hung toilet that can be hung at any height.
Grab bars at the toilet
Grab bars around the toilet increase safety and many types are available. The choice will depend on available wall space near the toilet, nearness to other fixtures in the room and the needs of household members.
Basic types of toilet support bars include wall-mounted on a side wall, wall and floor mounted, free standing and slip-over guard rails.
Faucets
A single-lever mixing faucet can control temperature and flow of water better than dual controls.
Ms. Yost is with the Department of Consumer and Family Economics, University of Missouri-Columbia and Mr. Martin is the director of Physical Therapy Education, University of Nebraska Medical Center.
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