Many Alzheimer’s caregivers are deeply dedicated and feel like they can handle anything. Usually they are often so burned out they can’t even imagine how anyone could assist them. In addition, they may be reluctant to ask for help because they don’t want to impose and because they’re afraid people will refuse to help. Reaching out will help avoid getting burned out. We have put together some information on how to get the assistance the caregiver needs.
Caregiver burnout is unfortunately very common when caring for someone with Alzheimer’s Disease. You can alleviate that burnout with an offer to help. It doesn’t have to be much but it does need to be consistent. So if you really want to be of service, instead of just saying, “Let me know if there’s anything I can do,” you may need to volunteer for a specific task(s).
Here are a few ways to help –
- Help clean the house
- Take over a meal you’ve cooked
- Do the laundry
- Do the grocery shopping
- Pick up medicines from the pharmacy
- Volunteer to run other specific errands
- Mow the lawn and/or do other yard work
- Visit and just let the person talk about feelings
- Stay with the Alzheimer’s patient for a few hours so the caregiver can leave the house and do something enjoyable.
- Take the person with Alzheimer’s out for a drive
With a little thought you can certainly come up with additional ideas to help. The last two items listed are especially important because they will give the caregiver some badly-needed time alone to rest and recharge his/her batteries. But whatever you select, try to be specific and try to volunteer to do it on an ongoing basis.
If you would like more information on how you can help someone avoid getting caregiver burnout, this page has additional resources that will help.
This number of elderly Americans has far-reaching implications for our nation’s public health system and will place unprecedented demands on the provision of health care and aging-related services. Public health efforts to promote health and functional independence are critical strategies in helping older adults stay healthy.
Research has shown that poor health does not have to be an inevitable consequence of aging. Older adults who practice healthy behaviors are more likely to remain healthy, live independently and incur fewer health-related costs. An essential component to keeping older adults healthy is preventing chronic diseases and reducing associated complications.
The Centers for Disease Control and Prevention report that about 80 percent of older adults have one chronic condition, and 50 percent have at least two. Infectious diseases (such as influenza and pneumonia) and injuries also take a disproportionate toll on older adults. Efforts to identify strategies to prevent or reduce the risk of disease and injury and to widely apply effective interventions must be pursued.
Fall prevention can save lives and keep an older adult self-sufficient in his or her home longer. According to the CDC one in three adults 65 and older fall.
Following these tips can save a lot of older adults from falling.
Falls may occur for a variety of reasons, one of which is lack of exercise. The CDC states that, “physical activity is the most important factor to healthy aging.” For important health benefits it is recommended that older adults need at least:
- 150 minutes of moderate-intensity aerobic activity, which translates to 30 minutes a day 5 days a week (i.e., brisk walking) every week;
- Muscle-strengthening activities on two or more days a week that work all major muscle groups (legs, hips, back, abdomen, chest, shoulders and arms).
- Or, 30 minutes a day 5 days a week of vigorous-intensity aerobic activity and weight training muscle-strengthening activities on two or more days a week that work all major muscle groups.
What is Parkinson’s Disease?
Parkinson’s Disease (PD) is a progressive, neurological disease that mainly affects movement but can also affect cognition. Parkinson’s disease results from the destruction of nerve cells in the brain that produce the chemical dopamine.
Caregiving for People Living with Parkinson’s
Caring for a loved one with PD can be a challenging job, especially as the disease progresses. Get prepared, take care of yourself, get help (don’t try to do it all yourself), work to maintain a good relationship with your loved one, and encourage the person with PD for whom you care, to stay active. These are the most common tips to follow when dealing with a loved one suffering from PD. We also have put together a Parkinson’s Caregiver Sheet to help you as well. Early Parkinson’s Disease (PD) usually requires more emotional support and less hands-on care. It is a good time for family members/caregivers to educate themselves about the disease.
Many resources are available online. The Parkinson’s Disease Foundation (PDF.org) has a lot of information about the disease. Another good source of information would be to accompany the person with Parkinson’s to their medical appointments and ask questions of the doctor, nurse and social worker. The areas to assess include your loved one’s needs – both your perceptions and theirs, your home environment, and your own health, emotional state, and other commitments. The caregiver has to determine how much they can and can’t do themselves and what type of outside support is needed. It is also important to assess current and future financial issues such as health insurance coverage, employment (both caregiver and the person with Parkinson’s), managing expenses, and if/when to get Power of Attorney.
Take Care of Yourself
Probably one of the most important, and sometimes difficult, things caregivers can do is to take care of themselves. This includes maintaining mental and physical health by making and keeping your own medical and dental appointments. As a caregiver, it is important to keep your job whenever possible as it provides not only financial help and possibly insurance coverage, but also a sense of self-esteem. Join a support group for caregivers if possible. Support groups help you meet people who are going through what you are going though, vent frustrations, give and receive mutual support, and exchange resource information and coping strategies. Whenever possible get your sleep, take breaks, make and keep social activities, and try to keep your sense of humor.
Get help? Don’t try to do it all alone. By getting help, a caregiver can lessen their sense of isolation, and it gives you more confidence in your own caregiving ability. Having help increases your ability to think creatively and helps you get those needed breaks. Help is available through local and community services. For a fee there is in-home care for help with cooking, bathing, dressing, and meal preparation. Additionally, a social worker from your health plan or hospital can connect you with other services.
Foster A Good Relationship
Lastly, maintaining your relationship and communication with the person with Parkinson’s can be the most challenging and rewarding aspect of caregiving. As Parkinson’s Disease progresses, the roles change and the person with Parkinson’s may go from being an independent head of the household to a very dependent person requiring a significant level of care. However, research shows that despite high levels of strain, caregivers with good quality relationships have reduced depression and better physical health. Remember, as a caregiver your service to your loved one is beyond measure in terms of love, depth of care, and concern.
Driving is perhaps the ultimate symbol of independence and control. An elderly person is likely going to feel trapped if they are required to give up driving when they are accustomed to that freedom. Loss of control is a fear for anyone, especially for aging parents, who may be also feeling loss of control of their physical health.
From studies on the subject, we know that most people will relinquish the keys when asked to do so and when the time comes. But there are still a sizable number of seniors who adamantly refuse to even consider it, in spite of accidents, and urgings of family.
If you are facing the problem of an aging parent who should give up driving and you don’t know how to begin, here are some tips:
1. Get in the car with an aging parent whom you suspect is not safe behind the wheel. Observe their driving. They should be able to follow the rules of the road without prompting. Keep notes. Notice how your aging parent handles turning, changing lanes, maintaining safe speed and being alert for oncoming traffic. Your observations can become part of the discussion about your parent’s driving and you can explain why you are afraid of their driving now. Here is a checklist to help you. Driver’s Checklist
2. Acknowledge that this is difficult for your aging parent and approach the subject respectfully. You can say, “Mom, I know this must be hard for you, but we need to talk about your driving.” Then use whatever incidents you are aware of that led you to understand that Mom should not be driving. Accidents, vision problems, dementia, and small strokes can all be very good reasons to give up the keys.
3. Figure out alternative transportation. Whether it will involve hiring a driver, using community-based senior transport services, or having family members pitch in, you do not want to leave your parent feeling trapped and deprived of their normal outside activities.
4. Request retesting for the driver’s license. Many people who should not be driving can’t pass the driving test, but have a license that is not going to expire for awhile. Retesting will reveal that they should stop driving. A physician can make the request as well. Contact your local DMV website to find out what is needed in your state to request retesting.
5. Have a family meeting about the subject of driving. If you are worried, and others in the family will back you up, it may be enough to convince your aging parent to give up the keys. Be politely insistent. The safety of everyone on the road is at stake.
Even if the conversation about giving up the keys is difficult, it is important to initiate it. Your parents may not have the courage to stop driving and may need a prompt from you to take that painful step. Your kind help can keep your aging parent and others a lot safer.
A hoarding disorder is a persistent difficulty discarding or parting with possessions because of a perceived need to save them. A person with a hoarding disorder experiences distress at the thought of getting rid of the items. This usually results in excessive accumulation of items, regardless of actual value.
Hoarding often creates such cramped living conditions that homes may be filled to capacity, with only narrow pathways winding through stacks of clutter. Some people also collect animals, keeping dozens or hundreds of pets in unsanitary conditions because they can’t care for them properly.
In the homes of people who have a hoarding disorder, the countertops, sinks, stoves, desks, stairways and virtually all other surfaces are usually stacked with stuff. And when there’s no more room inside, the clutter may spread to the garage, vehicles and yard.
Clutter and difficulty discarding things are usually the first signs and symptoms of hoarding disorder, which often surfaces during the teenage years. As the person grows older, he or she typically starts acquiring things for which there is no need or space. By middle age, symptoms are often severe and may be harder to treat.
Hoarding disorder affects emotions, thoughts and behavior. Some of the signs and symptoms may include:
- Persistent inability to part with any possession, regardless of its value
- Excessive attachment to possessions, including discomfort letting others touch or borrow them or distress at the idea of letting an item go
- Cluttered living spaces, making areas of the home unusable for the intended purpose, such as not being able to cook in the kitchen or use the bathroom to bathe
- Keeping stacks of newspapers, magazines or junk mail
- Letting food or trash build up to unusually excessive, unsanitary levels
- Acquiring unneeded or seemingly useless items, such as trash or napkins from a restaurant
- Difficulty managing daily activities because of procrastination and trouble making decisions
People with hoarding disorder typically save items because:
- They believe these items will be needed or have value in the future
- The items have important emotional significance — serving as a reminder of happier times or representing beloved people or pets
- They feel safer when surrounded by the things they save
Hoarding disorder is different from collecting. People who have collections, such as stamps or model cars, deliberately search out specific items, categorize them and carefully display their collections. Although collections can be large, they aren’t usually cluttered and they don’t cause the distress and impairments that are part of hoarding disorder.
If you think a loved one may have a hoarding disorder, check out these FAQ’s about hoarding that should hopefully answer any questions you may have.
CHILDREN OF HOARDERS: Informative web site for families and children of hoarders.
The Official Do and Don’t List for helping hoarders.
Arthritis can be painful and difficult for the elderly to deal with so it’s good to know how to help those with arthritis when necessary. Knowing about the different types of arthritis can also be very helpful. It’s the best way to assist those with arthritis.
There are two different types of arthritis, rheumatoid arthritis and osteoarthritis. Rheumatoid arthritis causes swelling of the joints as well as joint damage. It’s an autoimmune disorder that can best be treated with medication. Osteoarthritis occurs when the cartilage between the joints disintegrates. This causes the bones to rub against each other. Both types of arthritis can cause the joints to become inflamed and stiff which makes it hard for those with arthritis to move their joints. Arthritis most commonly occurs in the joints of the hands, wrists, knees and feet which can make it hard for those with arthritis to move around or pick things up.
Medications are the best way to manage arthritis, but many seniors forget to take their medication regularly or only take it when their pain becomes excruciating. It’s important to make sure that they are familiar with the medication.
- Make sure they are taking it as prescribed so that their symptoms can be kept under control.
- Many seniors also have trouble opening their medication because of their joint pain so it can be helpful to put the medication into an alternate container that is easier for them to open.
- Cold packs or heat packs are also very helpful for relieving joint pain from arthritis.
Strengthening the Muscles
Strengthening the muscles surrounding arthritic joints is another way to help alleviate pain. Many doctors and physical therapists can suggest exercises that can be completed at home on a regular basis that will strengthen their muscles and allow for easier joint movements. When seniors are not exercising their muscles they should try to limit their movements that require usage of the joints that are affected with arthritis. Having them move slowly and fluidly is also helpful because it puts less wear on the already damaged joints. Also, it’s important to discourage the lifting of heavy objects and encourage them to rest their joints as much as possible.
Another thing to consider when dealing with arthritis is a diet and exercise plan. It is important for those with arthritis to watch their weight. Excess weight can make arthritis symptoms worse since the extra weight puts more strain on the muscles and joints. Encourage them to exercise on a regular basis or exercise with them so that they can stay in shape and maintain a healthy body weight. Another way to help them watch their weight is by making sure that they eat healthy meals on a daily basis. Fresh fruits and vegetables are loaded with antioxidants which can help slow the progression of arthritis and aid in metabolism.
Finally, one thing that can be done is to make sure that things in the home are easily accessible. Keeping scissors on hand for opening packages can be very helpful for those with arthritis because the pain and inflammation can make opening things very difficult. Electric can openers and tools for opening jars are also useful, especially for those who do not have a live-in caregiver. Seniors might not think to buy these things on their own, but purchasing these items can be an inexpensive way to help. Following these tips can help assist in the managing of arthritis pain. Please keep in mind that joint pain and inflammation can make even the simplest of daily tasks extremely difficult. Being very patient and helpful will make caring for them a lot easier. If taking care of them is still troublesome, then speak with their doctor to get additional information or consider hiring a home care service provider in the area.
This is part three of a series that offers some helpful tips to avoid caregiver burnout when dealing with someone suffering with Alzheimer’s disease. Learning as much as possible about Alzheimer’s can help alleviate burnout and make life easier for you and the person afflicted with this disease. This part discusses realistic expectations and setting up a game plan. This is the final part of that series.
Not having a clear picture of your situation or the prognosis sets you up for rude awakenings or a lot of unnecessary struggle. Once you know what to expect, you can adjust your expectations accordingly. This process also makes it easier to accept his fate.
Learn as much as you can about Alzheimer’s and stay abreast of what to expect at different stages of the disease. Talk to others who’ve lived through the caregiving experience on message boards or in support groups. You’ll be better able to deal with what you’re going through and gain a peek at what could lie ahead.
You’ll learn from experience to be realistic about expectations for the person with Alzheimer’s. Keep outings with friends relatively brief and uncomplicated. Figure out what kinds of food, activities, music, and other daily routines work — and stick to them.
Be realistic, too, about your expectations for family members. Distant siblings may simply not be able to devote the same time to caregiving as those nearby, for example. Children may be disturbed or frightened by the changes in a grandparent and shouldn’t be expected to understand the disease and pursue the same kind of relationship as before.
A Game Plan
Alzheimer’s disease is progressive, which means that while the person with Alzheimer’s may stabilize for a long stretch of time, he’ll never recover lost abilities. He’ll only gradually worsen over time.
It’s one thing to understand the progression of the disease but a different matter to put a corresponding action plan in place. Having a plan makes the emotional transition easier and helps everyone understand the needs involved, financial and otherwise.
You may not be able to address every possibility, but you can start by researching what’s likely to happen when — and your corresponding options. Start by dividing your planning into stages:
- What needs to happen at this stage in terms of care?
- Who will provide care?
- Where will he live?
For example, soon after diagnosis you’ll need to arrange access to medical, legal, and financial records, as well as the transfer of decision-making authority to you, another family member, or a close friend. By the end stage, someone with Alzheimer’s needs round-the-clock care, and you can start to figure out where that would take place and by whom.
Start conversing with family members about these things now, even if they’re difficult. Get the input of the doctor, a geriatric care manager, and other professionals involved in her case. Knowing all about Alzheimer’s disease will save everyone time and help get things coordinated.
If the person with Alzheimer’s is a member of your family, your immediate family is likely to be your primary source of support and relief. Siblings often trade off care duty and share financial obligations.
But there are tremendous emotional benefits to a united family, too. Decision making is much easier when families are in general agreement. You’ll also be less likely to feel guilty or isolated, second-guess yourself, or waste mental energy feeling resentful or unappreciated if you can all work toward consensus (or at least mutual respect).
Having the support of your partner and children, if you have them, similarly removes a huge source of stress.
Work to keep everyone on the same page regarding the person’s condition and the important decisions that must be made. When there’s friction, consider bringing in a third party — such as a respected relative or a neutral geriatric care manager — to mediate.
Be aware from the get-go that Alzheimer’s caregiving can become a source of marital conflict if your partner feels that you’re neglecting him for your “other” family. Take care not to discount criticisms in this vein. And do what you can to keep your other relationships strong. You may need to bring in outside care to achieve this goal, and you shouldn’t feel guilty if you do. Your relationships with your partner, family, and close friends will likely outlive the person with Alzheimer’s if tended well.
Alzheimer’s-related services offer practical and emotional support that can transform a difficult time into one with pleasant moments, too. What’s more, learning about respite care, caregiver training, and assistive devices to make physical care easier has been found to ease stress and delay the need to place a loved one in a nursing home, according to a 1997 Urban Institute report.
You’ll particularly need outside support if you’re coping with wandering, sundowning, or disturbed sleep.
You may be surprised by the variety of people, programs, and devices available to make your life easier, many of them at little expense. Start by conferring with the doctor of the person you’re caring for and branch out to specialists, geriatric care consultants, therapists, and community programs such as respite care. Alzheimer’s disease associations and support groups are often free and a great way to receive emotional support as well as to learn caregiving tips and ideas.
For some great tips on how to communicate with your loved one with Alzheimer’s check out this great resource.
Most people simply dive in to the responsibility of caring for someone with Alzheimer’s disease and then take it one day at a time. That sounds like the best course of action right? Before you find yourself combating both his disease and your own emotional strain and battle fatigue, be sure you have these stress-busters on your side. If you don’t cover yourself first then your no help to him.
You really do need to come first on the priority list, not last. It’s almost too easy to neglect your own needs when you’re juggling caregiving, a job, a marriage, and children. But just as with tending to a child, caring for a sick person can be depleting. If you fail to keep an eye on your own mental and physical health, you’re vulnerable to everything from colds and other illnesses right up to burnout. No one can keep up with the round-the-clock demands of Alzheimer’s care — even in the early stages — without periodic relief. Indeed, caregiver burnout is a primary reason Alzheimer’s patients enter nursing homes. Make time for yourself every single day, even if it’s just a 20-minute walk while a neighbor pays a visit. Don’t abandon all your former interests and hobbies to support someone with Alzheimer’s. You don’t have to eat the same food as him (especially if he’s down to simple, easy-to-manage foods), but neither do you have to subsist on drive-thru fare. Stock up on nutritious, easy-to-grab snacks if time is an issue. Getting enough sleep is a special concern: To help yourself fall asleep, try incorporating some relaxation exercises or meditation into your nighttime routine. Some people benefit from yoga, tai chi, or deep breathing exercises. A good tension release is progressive muscle relaxation, a technique that calls for tightening and relaxing all of your major muscle groups, one by one. Your wind-down can be as classic as a warm bath or a good book. Whatever your choice, make it routine — at about the same time each evening, if you can — to help your mind associate the activity with rest. Reorganize your bedroom so that it’s a haven rather than a cluttered workspace. Get a medical exam yourself, and be sure to tell your doctor about your situation. She may be able to give you some strategies to deal with stress and anxiety, and can help you identify signs of clinical depression and, if needed, treatment options.
The Ability to Ask for Help
Alzheimer’s care can be all-consuming, and it’s a common caregiver temptation — and mistake — to take it all on yourself. Having ample help keeps Alzheimer’s caregivers functioning longer and more smoothly. Of course, asking for help isn’t always easy. You may not want to bother others with what you see as a family matter or your responsibility. Sometimes it seems easier to do it yourself than to get another person involved. In fact, most people around you are more than happy to pitch in but often have no idea what they can do for you, so they may not volunteer except in a general way. When you do ask, they’re apt to be relieved that they can be of use and have the opportunity to show their affection for you or the person with Alzheimer’s. Make a list of everyone who might help you manage his new life, along with contact information. Always put Family and friends first on that list. Give thought to what kind of specific help each person might provide, no matter how large or small. For example, a neighbor might pick up groceries while she does her own shopping. A teenage cousin might be able to drive the patient to medical appointments or run errands. Add to the list every individual who volunteers or asks, “How can I help?” Include people who would help you simply by being an understanding companion to call or visit. Then make another list of all the tasks you feel responsible for on a daily basis. Of those:
- What can you delegate?
- What can you outsource to a paid provider (food delivery, cleaning services, pharmacy by mail)?
- Who can run errands for you?
- Who can spell you for a matter of minutes or hours?
If someone can’t help, they’ll tell you. But you’ll never know all that they can do to ease your load unless you first ask. When you can, take a longer break by recruiting someone else to take over the primary-caregiver role for a day, a weekend, or even longer. Remember, you don’t have to do it all yourself.
Aging is the single biggest risk factor for developing cancer. However, it also increases the risk of other diseases and injury and can affect a person’s well-being, independence, and feelings of self-worth. These are all issues that need to be considered when cancer treatment decisions are being made, as well as during treatment.
Disease and disability, which may interfere with cancer treatment and recovery, are more likely to occur in older adults. For example, age is associated with a gradual inability to accomplish daily activities, such as the use of transportation and the ability to go shopping without assistance or provide adequate nutrition for oneself. Older adults who need help in these areas have a lower tolerance of stress, including the stress of cancer treatment. By understanding what tasks an older adult can and cannot perform, it is easier to identify which form of treatment poses the least risk with the most benefit and how much supportive care a person will need.
Older people with cancer often have a different set of concerns younger people don’t face. Those concerns include:
Maintaining independence. For many older adults with cancer, the biggest concerns are being able to take care of themselves and feeling like they are still in control of their health and decisions. Cancer treatment may interfere with the ability to cook and eat independently, wash or bathe independently, walk, drive, or access transportation. Having to rely on others to care for them may not only be overwhelming but may not even be possible, especially if there are no family members or friends around to act as caregivers.
Feelings of social isolation. Older people with cancer are less likely to have a support system in place, often because they have relocated to a new home or apartment, do not live close to family, or have experienced the loss of a spouse, family members, or friends. Sometimes being isolated brings up feelings of depression and anxiety, which may interfere with treatment. Older adults may also have difficulty coping with problems associated with cancer treatment.
Financial concerns. For older adults, how to pay for the treatment and all the little things associated with it can drain financial resources quickly. It is important to discuss financial issues with family members, and check the internet as there are many resources available that can help.
Physical limitations. Older adults with cancer may have medical problems that limit their physical abilities and mobility. Creating a safe physical environment at home often helps. Simple measures, such as improving lighting, clearing clutter from the home, or installing safety railings in bathrooms, may help reduce the chance of accidents or falls.
Transportation. Access to treatment depends on reliable transportation. Older adults undergoing cancer therapy may have a difficult time getting to doctor appointments, especially if the person no longer drives and is dependent on other methods of transportation.
All these factor into the decision about proper care for your loved one who is dealing with cancer. Sometimes the best decision is to hire a caregiver to help with these.