Planning For The Future: Tips For Caregivers
Making health care decisions for someone who is no longer able to do so can be overwhelming. Thats why it is important to plan health care directives in advance. To help plan for the future, you can:
- Start discussions early with your loved one so they can be involved in the decision-making process.
- Get permission in advance to talk to the doctor or lawyer of the person youre caring for, as needed. There may be questions about care, a bill, or a health insurance claim. Without consent, you may not be able to get needed information.
- Consider legal and financial matters, options for in-home care, long-term care, and funeral and burial arrangements.
Learning about your loved ones disease will help you know what to expect as the dementia progresses and what you can do.
Get Dementia Elderly Care When Necessary
We mentioned that scheduling me-time and maintaining a healthy lifestyle are two ways to handle the stresses of caregiving. But with all the demands of looking after a loved one, how do you possibly make those items a reality?
Hiring respite caregivers can help when caring for a dementia parent at home.
Respite caregivers enter into you or your loved ones home for a few hours a couple of times a week. They have training in skills specific to taking care of elderly adults with dementia.
While the caregiver looks after your loved one, youll have free time to take care of yourself and rest before jumping back into caregiving.
Now that you know how to personally cope with a parent with dementia, lets look at how to practically care for a parent with dementia.
Ten Tips For Communicating With A Person With Dementia
We arenât born knowing how to communicate with a person with dementiaâbut we can learn. Improving your communication skills will help make caregiving less stressful and will likely improve the quality of your relationship with your loved one. Good communication skills will also enhance your ability to handle the difficult behavior you may encounter as you care for a person with a dementing illness.
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Join A Support Group For Dementia Caregivers
Talking with others who are also caring for a loved one with dementia at home can also help you cope with caregiving.
Joining a memory care support group is a great way to:
- Get encouragement from others
- Enjoy social interaction with others in your position
If youre not sure how to find a support group, the Alzheimers Association website can help you get connected to online groups and resources in your community.
Notice And Manage Frustration
Caring for a parent with dementia may require flexibility, resilience, and patience. A person may feel frustrated, but this does not mean they do not care about their parent.
However, if a person is feeling extreme frustration on an ongoing basis, this can affect their well-being and the care they give to their parent.
A person may wish to try the following tips to help manage frustration:
- Learn to notice the warning signs of frustration: These can include shortness of breath, headache, overeating, or increased alcohol consumption.
- Take steps to calm down physically: A person can temporarily remove themselves from a situation and take some deep breaths before responding. Meditation, taking a bath, or listening to music may help a person physically relax.
- Recognize negative thought patterns: A frustrated person may be more prone to overgeneralizing, taking things personally, or ignoring the positives in a situation. Recognizing these thought patterns allows a person to view things more calmly and compassionately.
- Communicate clearly and assertively: People may become frustrated when they feel unable to express their own needs and limits. Instead of suppressing these feelings or losing their temper, they can aim to calmly assert their feelings and needs without blaming others.
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The Challenges And Rewards Of Alzheimers Care
Caring for a person with Alzheimers disease or dementia can often seem to be a series of grief experiences as you watch your loved ones memories disappear and skills erode. The person with dementia will change and behave in different, sometimes disturbing or upsetting ways. For both caregivers and their patients, these changes can produce an emotional wallop of confusion, frustration, and sadness.
As the disease advances through the different stages, your loved ones needs increase, your caregiving and financial responsibilities become more challenging, and the fatigue, stress, and isolation can become overwhelming. At the same time, the ability of your loved one to show appreciation for all your hard work only diminishes. Caregiving can literally seem like a thankless task.
For many, though, a caregivers journey includes not only huge challenges, but also many rich, life-affirming rewards.
Caregiving is a pure expression of love. Caring for a person with Alzheimers or dementia connects you on a deeper level. If you were already close, it can bring you closer. If you werent close before, it can help you resolve differences, find forgiveness, and build new, warmer memories with your family member.
Caregiving can teach younger family members the importance of caring, compassion, and acceptance. Caregiving for someone with dementia is such a selfless act. Despite the stress, demands, and heartache, it can bring out the best in us to serve as role models for our children.
Why Someone With Dementia Asks To Go Home
Alzheimers and dementia damage the brain and cause a person to experience the world in different ways.
So, what we hear as I want to go home is often a request for comfort rather than literally asking to go somewhere.
The kindest thing to do is to meet them where they are, focus on comfort and reassurance, and respond to the emotions behind their request.
The goal is to reduce your older adults anxiety or fear so they can let go of the idea.
Helping them to calm down also gives you a chance to check ifdiscomfort, pain, or a physical need is causing this behavior.
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Dementia Care: Keeping Loved Ones Safe And Happy At Home
Of the 5.8 million people in the United States who have Alzheimers disease and other types of dementia, many remain at home, an option thats been shown to help them stay healthier and happier and live longer.
But home care isnt always easier caregiving often falls on the shoulders of family members and friends. And these well-meaning loved ones can burn out without the proper support, experts warn.
The care of dementia is actually the care of two people: the person with the illness and the person taking care of them, says Johns Hopkins geriatric psychiatrist Deirdre Johnston, M.D. But when Johnston and a team of researchers studied more than 250 Baltimore residents with dementia and their caregivers, they found a staggering 97% to 99% of both groups had unmet needs.
Keeping your loved one safe and happy at home with dementia home care can seem overwhelming. But dont lose heart: Plenty of help is out there, for your loved one and for you. Here are some tips that may help:
How To Consider What Your Parent With Alzheimers Would Want
When faced with making decisions on behalf of someone with Alzheimers, who has lost the capacity to make the decision, youll want to ask yourself: What would Mom want?
To answer that question, youll need to do the following:
- Review any existing living wills, advance directives, POLST forms, or other documentation thats been completed by your parent.
- Consider your mothers values and preferences regarding medical and life care, based on what you know of her. Use a specially designed conversation guide, if possible.
- You might be able to invite her to express preferences to you, if shes able to do so and if it doesnt cause her too much distress.
Reviewing existing advance directives and other documentation
In an ideal world, every older adult would go through an advance care planning process and specify some preferences in writing, before becoming too disabled by Alzheimers disease.
For more on how older adults should address advance care planning, see 5 Tips to Help You With End-of-Life Planning.
By the way, you said you have a will but it wasnt clear to me if this was a living will, which is a type of advance directive that provides some guidance regarding a persons preferences for care before she dies.
Considering your mothers preferences and values
Even if you already have an advance directive or living will available, I recommend going through a questionnaire that will help you think about your mothers preferences and values.
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Finding Comfort In Embracing The Now
Despite the changes that occur with a loved one, Drew says connecting with them in a way that resonates with them can be meaningful for both parent and child.
People with Alzheimers can retain a core sense of self deep into the disease when their brain is still affected. There are things we can do to help support that rather than an environment that shuts them down, she said.
For example, Drew recalls a woman who found that talking to her father about the next-door neighbors from her childhood, reading him his favorite poems, and playing him is favorite songs, resonated with him, and as a result brought her comfort during visits.
Even though he couldnt say her name, he knew she was there for him and that she was one of his people. They were able to have a wonderful connection that was built on a lifetime of being family even until the end of his life, Drew said.
She refers to this approach as person-centered care focusing on the person over the disease.
Calandra practices her own form of person-centered care by tapping into her fathers love of humor.
When I visit, I like to make him laugh. Even though his laugh is different, I know hes happy because he smiles and laughs when I say silly things, Calandra said. I hold on to the fact that he still recognizes me and my voice.
Tips For Home Safety For People With Dementia
As a caregiver or family member to a person with Alzheimers or related dementias, you can take steps to make the home a safer place. Removing hazards and adding safety features around the home can help give the person more freedom to move around independently and safely. Try these tips:
- If you have stairs, make sure there is at least one handrail. Put carpet or safety grip strips on stairs, or mark the edges of steps with brightly colored tape so they are more visible.
- Insert safety plugs into unused electrical outlets and consider safety latches on cabinet doors.
- Clear away unused items and remove small rugs, electrical cords, and other items the person may trip over.
- Make sure all rooms and outdoor areas the person visits have good lighting.
- Remove curtains and rugs with busy patterns that may confuse the person.
- Remove or lock up cleaning and household products, such as paint thinner and matches.
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Learn About Burnout In Alzheimers Caregivers
Dementia care is incredibly demanding and emotionally challenging. Deciding to care for a loved one with Alzheimers at home is a huge decision that affects all aspects of a family caregivers life. Taking steps to prioritize self-care is crucial for your well-being and that of your care recipient.
Caring For A Parent With Alzheimers Disease: Whats Next After A Diagnosis
Home / Blog / Caring for a Parent with Alzheimers Disease: Whats Next After a Diagnosis?
Witnessing your loved ones health change over time is never easy. Its even harder to accept if your parent has been diagnosed with Alzheimers disease. Coming to terms with your parents diagnosis can be an emotional challenge and its natural to feel overwhelmed. Just know that youre not alone and there are a multitude of resources available to help you and your loved one with this life transition.
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What Support Is Available For Me If I Care For Someone With Dementia
When youre caring for someone else, it can be easy to overlook your own needs. But looking after your health and making time for yourself can help you feel better and more able to cope with your caring role.
Caring for someone with dementia can lead to feelings of guilt, sadness, confusion or anger. Unlike with other conditions, it can be difficult to share these feelings with someone with dementia, leaving you feeling very isolated.
Its important to acknowledge these feelings, and to remember that theres no right or wrong way to feel. If youre feeling anxious or depressed, or you’re struggling to cope, talk to your doctor who can let you know about the help and support available to you.
Consider Moving To A 55 And Older Or Retirement Community
While adding safety features in your existing home is a good option, another option to consider is moving to a community geared to older residents. While these communities may vary in cost, they often come with features that may help care for a loved one at home. Safety features such as nonslip tubs are already in place, and neighbors may have loved ones in similar situations. Many continuing-care retirement communities include areas that offer higher levels of care as a persons dementia advances. This allows a more active spouse to live independently on the same campus.
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Help With Incontinence And Using The Toilet
People with dementia may often experience problems with going to the toilet.
Both urinary incontinence and bowel incontinence can be difficult to deal with. It can also be very upsetting for the person you care for and for you.
Problems can be caused by:
- urinary tract infections
- constipation, which can cause added pressure on the bladder
Sometimes the person with dementia may simply forget they need the toilet or where the toilet is.
Research Alzheimers Behaviors And How To Manage Them
Sundowning and Sleep Problems
Many people with Alzheimers become restless, agitated, and irritable in the late afternoons and evenings. This is referred to as sundowning, sundowners or sundown syndrome. Explore these suggestions for managing the mood and behavior changes and poor sleep that occur due to sundowning.
- Encourage exercise and more physically demanding activities earlier in the day, as it tends to improve sleep quality. For example, move stimulating or stressful activities like bathing to the morning.
- Limit naps later in the day, but make sure the person gets adequate rest. Fatigue can increase the likelihood of late-afternoon restlessness and exacerbate sundowning.
- Set a quiet, peaceful tone in the evening by limiting family activities and other distractions. Eliminate loud noises, play soothing music, and minimize television watching, as it can be stimulating.
- Ensure the home remains well lit if darkness and shadows appear to trigger fear, pacing or other sundowning behaviors.
Read more:Alzheimers and Sleep Disorders: Expert Answers to 6 Common Questions
Hallucinations and Delusions
As the disease progresses, an older adult with Alzheimers disease may experience hallucinations and/or delusions. Learning how to respond to these symptoms is a critical component of Alzheimers care and often takes lots of practice.
Read more:Paranoia, Hallucinations and Delusions in Dementia Patients
Wandering
Read more:How to Stop Dementia Patients from Wandering
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Tips For Dealing With Parents With Dementia
When a person has a parent with dementia, they may find themselves taking on the role of a caregiver. Caring for a parent with dementia may be a comforting experience, but it may also bring challenges.
As their parents condition changes, so will a persons relationship and involvement. This changing relationship and new responsibilities can be an emotionally trying experience. Some people may find relief in having an explanation for their parents symptoms while also feeling grief, anger, or helplessness.
However, there are ways in which a person can seek help and adapt their behavior to support themselves and their parent.
Allow Time For Everyone To Accept The Diagnosis
A diagnosis of dementia can create a whirlwind of emotions. Its natural to experience feelings of denial, fear, anger, sadness, frustration and even guilt. While the ups and downs can vary from day to day, your emotional state should even out with time.
As no two people process such complex feelings the same way, allow yourself, your parent and other family members the time needed to work through these feelings. If the feelings become overwhelming or elevate to a deep depression that wont go away, seek help from a medical professional.
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