"Help" Is Not a Four-Letter Word
It's been stated before, but it bears repeating: Consider hiring a geriatric caseworker who can help you determine what kind of regular professional help you can use in caring for your senior.
Supportive care options include facilities and programs to which your loved one will go, such as senior centers and adult day care programs, and services that will come to him or her, such as meal delivery, reassurance visits, and home care. Services are provided professionally and on a volunteer basis. Contact the Eldercare Locator or the National Association for Home Care for information.
If you primarily care for your loved one at home but could use a break periodically, the Senior Corps will provide a trained volunteer to come and stay with her once a week. Local religious groups may offer similar volunteer help.
If you are going away, are temporarily unavailable, you can arrange for professional respite care. This temporary care service can be provided at home or in a nursing facility. Check with your local Area Agency on Aging or any home health care service.
If Mom mainly needs company and activity, she may be fine spending her days at a senior center, many of which will pick her up, provide lunch, and drop her off at home at the end of the day.
Adult day care programs are a compromise between living at home and full-time assisted living for seniors who need supervised care. In a typical program, a van will pick up your father at about 9 a.m., drive him to a facility where he will socialize, have lunch, engage in activities, and possibly receive routine medical care, and then drop him off at home around 5 p.m.
Ideally, an adult day care program has one supervisor for each six clients, four if the clients are very impaired. The program should also have a social worker and registered nurse on staff.
Give your loved one time to adjust to anything new.
|"My father hated the idea of going to a day program. I was really surprised at how much he got to like it after a while."|
Grandma will be more likely to enjoy a program that offers the right activities -- something that interests her and suits her abilities.
Does your local high school offer courses in home economics? The school might give credit to a student for helping you care for your loved one.
All home care is not equal. Options range from having a caregiver live in the home full-time, to rotating several workers who live outside the home, to having part-time help for when you are not available or need a rest. The type of care you arrange will also depend on your senior's needs, whether it is housekeeping, personal care, or medical supervision. Contact your local Area Agency on Aging for information on the different levels of care available to you.
When hiring caregivers, check references carefully. Personal recommendations are best. When speaking with past employers, ask about the biggest mistake the person ever made, especially if the caregiver is getting a glowing overall report. No one's perfect.
Call elder care agencies in the morning, when they seem to have more time to give you their attention.
Don't let any caregiver just "take over;" your loved one should remain in charge as much as possible while getting necessary help.
Be clear from the beginning as to your expectations of a caregiver. Be specific about duties: answering the phone, watering the plants, handling mail, dealing with pets, shopping, cooking, and so on. Also, find out about the caregiver's expectations for the job. What tasks are they trained to do? Are there tasks that they cannot (or will not) do?
Dad will no doubt have complaints about his caregivers, and some of these complaints may be quite serious. You need to take all complaints seriously. Even if the exact version your father gives you may turn out to be only part of the story, your investigating will assure him that he is being respected, and caregivers will know that you are paying close attention.
If you've accused a caregiver of bad behavior and it turns out you were wrong, let him know. This is really important. Good caregivers take pride in their work, and being wrongly accused of something can be devastating to anyone.
Consider using one of the many concealed video "nanny cams" that are on the market.
Make sure caregivers understand your instructions. Don't just write them on notes; discuss them as well to make sure the instructions are clear and to determine agreement.
If you are supposed to relieve a caregiver and you're running late, always notify her. Have a backup plan in case this happens. Remember that the caregiver has a life and possibly a family, too.
Make out (private) "report cards" for each of the caregivers you hire so you can refer to these later if you need them. If there's something a caregiver does especially well, note that. Keep notes on the objections you had to prospective caregivers you didn't hire.
Have regular meetings with all caregiving staff. If there is more than one caregiver, you'll be better off if they know one another and can communicate, especially when there are scheduling problems. Now and then, try to extend the hours of one or another so that they overlap. They might have a lot to teach each other.
Make sure your father is familiar with anyone who will take care of him. Dad should always have a say in who cares for him. Remember that caregiving can be a very intimate process. It will all go best if you agree up front on the personnel involved, to the extent that that's possible. At a minimum, introduce caregivers to Dad before they actually begin work.
During the holidays, remember any paid caregivers (nursing home aides, day care workers, shuttle drivers, for example) who help make your loved one's life better. Make sure that your gifts are thoughtful.
Let caregivers see photos of your parent in earlier days. Caregivers and others will more easily connect with her if they are reminded of the vitality she once had.
|"A year after cousin Pauline was diagnosed with Alzheimer's, Maureen came to live with her and Joe, Pauline's husband. Maureen was a dedicated, caring professional, but Joe is not the easiest person to live with -- he tends to withdraw and then appears hostile even if he's not. We were afraid we'd lose Maureen, and she was a real gem. One day, I went over there for dinner and I got Joe to take out photos of Pauline back when we all went on vacations together and Pauline would win every swimming race we ever had. Maureen was touched that Joe was sharing these with her and surprised when he started going on and on about the old days -- talking a mile a minute, saying more to her than he had in all the weeks she'd been working there. Things were a little different after that. For one thing, I think Maureen looked at Pauline with a new kind of respect. She also was a lot more understanding of just how much of a vivacious, energetic person Joe was missing."|
Call at various times of the day to check on your parent and on the caregiver. Don't allow your calls (or visits) to become predictable. Showing up at unexpected times is a good idea, especially in the beginning. Of course, you don't have to say you're there to check up. Think of excuses to drop by.
If you're doing something nice for your parent (baking something special, picking up a small gift), consider doing the same for the caregiver.
If Grandpa is embarrassed about his nursing companion in front of the friends he encounters when he goes out for his walk, tell him to introduce the companion as "my friend." The real nature of the relationship is no one's business.
Caregivers provide your family with so many of the resources you need to keep your life and that of your parent vital. How much do you know about their families?
Make sure a home caregiver is comfortable in your home, that she knows she's welcome in the kitchen, on the patio, and so forth. Would a small refrigerator or microwave in the room she occupies (or elsewhere around the house) make her job easier?
Be realistic in your expectations for caregivers. Don't expect more of other people than you could ever do for yourself. In fact, accept that no paid caregivers, no matter how dedicated, are going to care as much as you do, and you will never be 100% satisfied with their care.
Assisted Living Facilities
Hunting for an appropriate assisted living facility for your loved one can be among the most traumatic experiences you will face in your life. The emotional end of it can be overwhelming; the financial and business end of it can make your head spin. Hire a geriatric care manager to help you through the maze of paperwork and choices. You can locate geriatric care managers in your area through your local Area Agency on Aging. To find geriatric care managers online or to learn whether your parent is eligible for free geriatric care management, contact Living Strategies or the National Association of Professional Geriatric Care Managers.
Senior care facilities usually have waiting lists. Learn about which of these facilities are available to you before you actually need them. Know that they come in all shapes and sizes.
Common fears seniors experience in entering assisted living include loneliness, neglect or abuse, and loss of dignity. Listen to your loved one's concerns and discuss how you will address them. Most of these fears can be allayed by researching facilities beforehand, developing a plan for monitoring when your senior is in residence, and sharing your plans and information with your senior.
"I was shocked at how receptive Dad was to the nursing home. Mom would have hated it -- it's small and you get almost no privacy. But he loves the intimacy and says it always makes him feel safe to hear the sound of other voices."
If you promised your parents you would never put them in a nursing home but find now that circumstances prevent you from keeping that promise, remind your parent often how things have changed and why this is necessary. Talk about the fact that years back, when you made that promise, the well-run, clean, safe, and cheerful nursing homes that abound today were rare. Remind them that you will still be there for them, just as you are now.
You'll need an attorney to go over contracts, check the legitimacy of fees and pricing schedules, and alert you to your rights as well as those of your parents. You'll save plenty on the lawyer's hourly rate if you choose one with plenty of experience in elder care.
Your local Area Agency on Aging will send you a list of facilities available in your state. Visit any that are possibilities and even a few that aren't.
The very best way to judge a facility is to ask yourself one important question: how would you feel about living there? You can get a copy of the most recent inspection report on any nursing home facility in the country by contacting Medicare.
Visit facilities at various times of day.
|"The daytime staff at my father's first nursing home was fantastic -- really caring and personable. Then I visited one time at night -- what a difference! The little staff that were around were unmotivated and unhelpful. We switched, and I visited the second one at night beforehand."|
There are assisted living facilities that provide multi-tiered levels of care for senior residents according to their needs and as their needs change:
- Residents live self-sufficiently in an apartment or a town house within the assisted living community (Tier 1).
- Residents live in an apartment or a private room where services such as meals, housekeeping, and medication supervision are provided (Tier 2).
- Residents receive nursing home care with twenty-four-hour supervision (Tier 3). This arrangement avoids the stress and disruption involved in displacing seniors and/or their surviving spouses as their needs change.
Every nursing home is assigned a long-term care ombudsman employed by the state's Area Agency on Aging. It's the ombudsman's job to monitor the home for abuse or neglect and to mediate relations between staff, residents, and families. Contact the nursing home's ombudsman with your questions and concerns.
Especially when your mother first enters the facility, it's important to let her know you're there for her while at the same time stepping back and giving her a chance to bond with her new surroundings. Often, feelings of guilt cause us to be overprotective.
Make friends with other residents, and tell them all about your parent. Especially if Dad is modest about the fact that he was once the top Latin dancer in the country, he may attract new friends he wouldn't make on his own.
It takes about six weeks to get used to a roommate. Don't be surprised if you find Grandpa adjusting to a personality you never dreamed would mesh with his. Sometimes opposites get along best, since they have fewer territorial and power issues.
If possible, have a friend go with you to check out a place that you're seriously considering. A friend's caring but less personally attached perspective will come in handy.
Get to know someone in each department at the facility. Make friends with the guy in the kitchen, the lady who manages the laundry, the gardener, the hairdresser, and the housekeeping people. They're all members of your new family.
It usually takes residents six months to get used to living in a senior facility. Give it time. But if you're sure that everything points to the fact that this is the wrong place for Mom, get her out and find a more appropriate place.
Edit your loved one's medical diary to create a condensed version that might be of interest to the nursing home personnel.
Holidays don't have to be celebrated all in one day. If you're from a large family, you might not want to overwhelm Grandpa with too many visitors at one time. Organize the family into well-spaced visits, and take a whole week or month, for instance, to celebrate Thanksgiving.
If someone is treating your parent in a way that you think is wrong or which you don't understand, ask questions before you accuse.
|"I went crazy when I heard Patsy, who takes care of Mom, yelling at her at the top of her lungs as I walked in the room. But when I pulled the curtain, Mom was sitting there smiling up at Patsy as she struggled to get her hearing aid on!"|
One gift at a time is better than a barrage of presents. Be mindful of the limited space your loved one has available.
Think about how you will structure your visit before you go. If two activities are planned, make sure you have time for each. Have a backup plan or two and go armed with plenty of flexibility.
Try not to show your disappointment if your parent prefers to rest quietly instead of going on the elaborate picnic you planned.
Keep your loved one aware of the passage of time. Mark off the days on a calendar as they pass, and decorate the room as various holidays approach.
Make Grandma's room (or her half of the room) as homey as possible. If all of her favorite things just won't fit, bring in a few and then replace them with others as the seasons change. Seeing missed objects will be like seeing old friends.
Send mail often, even if you visit in person. Older adults love to get mail, especially if they get to read it in front of their friends and share any good news.
If your parent is placed in an activity group that you think is inappropriate, give it some time before you intervene.
|"Mom in a volleyball group? This is a woman who hated sports with a passion. As it turns out, their version of 'volleyball' involves throwing a ball around from one person to another, and she doesn't seem to mind it at all. In fact, she enjoys the company and even boasts about her new involvement in 'sports.'"|
Each time you visit, (surreptitiously) check Mom's skin for irritations that may lead to bedsores. Massages are not only a good way to prevent bedsores, but they also provide some great shared moments of intimacy.
Be your father's advocate. Let him know that you are there to fight for him at times when he can't fight for himself. Make sure he knows that you will always defend him and that you are always going to be there for him.
Get to know every member of the staff, and address them by their names. Let them know who you are. Before you address anyone on the staff, introduce yourself, even if you think they should know your name by now.
Keep notes on your visits. A history of specific complaints might come in handy down the road.
Don't dismiss complaints just because they sound absurd.
|"Dad kept complaining about the snakes that were under his bed -- he could see them come running out every morning. I searched under the bed and even convinced him that there was poison under there, but the 'snakes' persisted. One morning I was helping him get breakfast, and Sylvia, who mops the floor every morning, came in and started mopping up around the bed. Dad went ballistic. 'There they are again!' he shouted. It was the mop, as it turned out. With Dad so groggy in the morning, I could now see how easily he was confused. I've asked Sylvia to hold off on releasing the 'snakes' until after Dad is up and dressed. It worked!"|
If your parent has a favorite way of doing something, don't be shy about telling the staff, no matter how "silly" the routine might seem. A favorite cup, the company of a teddy bear, or a special way of saying goodnight can make life seem normal again for an older adult whose life has been uprooted.
If Dad objects and becomes dejected when your visit is over, know that he will most likely recover soon after you're gone. It may help your peace of mind to call later and ask a staff member how he is doing. While you're guiltily picturing Dad staring out a window, pining away for you, he's probably absorbed in a game or TV program.
The housekeeping service usually takes care of everything. But if there are certain pieces of clothing that require special care and would be better off handled at your local dry cleaner, let the housekeeping department know and write the instruction ("hold for home laundry") right on the label.
If lots of people are visiting, they shouldn't all leave at the same time. Being left behind by a crowd can be devastating for your loved one, no matter how much fun the visit was.
Many senior facilities make it possible for residents to attend neighboring colleges and take adult education courses off the premises. Find out if that's a possibility.
|"We've had lots and lots of wonderful family parties here. We have birthdays and holiday dinners, and we even had a couple get married here once. But when Miriam Snyder got her college diploma, her graduation party was the best yet. She was seventy-three!"|
Lots of short phone calls throughout the day are better than one long one. Organize your family into a phone brigade.
Urge your mother to volunteer her services. Even those with mobility and other problems can help in the library, in crafts rooms, and at game time.
We predict that ten years from now, wheelchairs will come equipped with special compartments for laptop computers, since every older adult will know the value of being wired. For now, start out slowly, be patient during lessons, and limit your instruction to basics until Dad gets the knack of it.
If tipping isn't allowed, don't tip. The temptation to accept your offer might get someone in trouble. Find other ways of letting staff members know how much you appreciate them. Write letters of commendation to the management of the facility.
No matter how plush the nursing home or how modern the facility, the staff is going to be overworked. Help out when you can.
If Mom's favorite paintings just won't fit on the limited wall space she now has, consider donating them to the home or facility so that she can enjoy them more than she ever has before -- by sharing them with others.
|"She is so proud to see others admire the painting she's loved all these years, and we were all touched by the sentiment she asked us to add to the inscription under the painting: 'A shared blessing is a double blessing.'"|
Senior facilities change hands often. If you liked one you saw last year, don't assume it's still in the same condition. New owners often mean new policies.
Go to every meeting to which you're invited at least once. Having a parent in a nursing home can easily become a part-time job for you. Organize the brigade -- ask others to attend meetings for you and report back. If you can't attend, can someone tape the discussion for you?
Your loved one may greatly benefit from having a small refrigerator for snacks and a TV and DVD player. Rotate his movie collection often.
Let the staff know the conditions under which you want to be notified. Some facilities won't call you if your parent falls, for instance, unless you tell them to do so.
Arrange to take your parent outdoors as much as possible when you visit. No matter how well staffed the facility is, it's usually impossible to get everyone outside on those gorgeous spring days. Unfortunately, in the scheme of nursing care, this is generally not considered a priority.
Be honest with your parent about how long she'll be there.
|"That is the worst thing I see families do to the residents. They lie and say, 'Oh, Mommy, you will only be here for a few days.' Then the family goes home and the resident thinks we are crazy because we act like she will be living here. When she finds out the truth, she is mad and doesn't know who she can trust anymore."|
In addition to the obvious, here are some questions you might ask yourself when considering an assisted living facility:
- Do staff members refer to residents by name?
- Will you be able to have private time with your parent when you come to visit?
- What's the food really like? Eat a whole meal there!
- How many of the caregivers you see on the unit are privately hired and how many are members of the staff?
- Are visiting hours limited? Why?
- How often will your loved one have a chance to go outdoors?
- What sorts of care does this facility provide that may not be necessary now but which may become needed in the future?
- Would you like to live there?