Are you a caregiver of a person with Alzheimer’s disease?
Or are you living in dread of becoming a caregiver of someone with Alzheimer’s disease?
Of course, patients with Alzheimer’s disease (AD) deserve our love, compassion, understanding, and support. Even though the disease is slowly eroding their well-being and quality of life to the point that one day they will forget about everything, we don’t leave them “alone.” No one wants to be alone, especially in a darkening world.
But being a caregiver of someone with AD could be understandably difficult too. It could take a toll on our own physical, emotional, and mental health.
As Alzheimer’s Association described the ordeal, “Alzheimer’s takes a devastating toll on caregivers. Compared with caregivers of people without dementia, twice as many caregivers of those with dementia indicate substantial emotional, financial and physical difficulties.”
The organization further presented the following facts and figures:
- 83% of the help provided to older adults in this country comes from members of the family, friends, or other caregivers who don’t receive payment for the service.
- 48% of all caregivers who provide help to elderly people deal with a person afflicted by this disease or other forms of dementia.
- Approximately 30% of caregivers are 65 years old and above.
- Women make up approximately two-thirds of caregivers, with daughters making up one-third of dementia caregivers.
- “Sandwich-generation” caregivers also make up one-quarter of dementia caregivers, meaning they take care of an elderly person and at least one child.
- When it comes to household income, 43% of caregivers have less than $50,000 a year.
But as this beautiful quote from Disney’s Lilo and Stitch reminds us, “Ohana means family, and family means nobody is left behind or forgotten.”
What do you do with a parent who has Alzheimer’s?
The first thing you should do is educate yourself about this disease. This knowledge will prepare you for what lies ahead — you’ll know what should be done in terms of tasks and schedule. You’ll also learn what to expect, so you can exercise whatever virtue is necessary for endurance.
This is regardless of whether you make the choice of caring for your parent at home or entrusting your parent to a memory care/health care facility. You’re not fading away from your parent’s life. Your parent may soon forget about you due to the devastating effects of Alzheimer’s. But it’s your love that can stand strong.
Here are some things you can expect to happen with a parent with Alzheimer’s due to dying brain cells, according to the National Institute of Aging:
- Easily gets worried, upset, and angry
- Behaving depressed or without any interest in things
- No longer interested in appearance, stops bathing, or wants to wear the same clothes every day
- Habit of hiding things or thinking other people are hiding stuff
- Thinking about things that aren’t in the surroundings
- Habit of pacing a lot
- Displaying unusual sensual behavior
- Misunderstanding what you or other people say or do
- Hitting you or other people
The behavior of a person with AD can also be affected by negative emotions (sadness, anxiety, stress, fear); health-related problems (sleep troubles, new medications, infection, pain); and other physical dilemmas (hunger, thirst, constipation, hearing/seeing difficulties). They may even be extra sensitive to noises that come from TV and radio.
After preparing yourself mentally and emotionally, you should also start organizing your parents by making their environment simpler and safer. Request the help of another family member or a friend in checking the house; this way no area needing improvement gets skipped.
Now, it’s time to tackle legal matters. This is the second recommendation from Cameron Huddleston, an award-winning journalist and finance specialist after advising acceptance of AD diagnosis and understanding how the disease will impact your parent’s life, along with your own. Arrange for your parent’s meeting with a trusted attorney, and this is particularly important before the disease reaches its middle or late stage. Your parent must have mental competence if legal documents have to be produced and signed, such as a will, power of attorney, and an advance health care directive.
Next, you should have a discussion with your parent about long-term care options. You and your parent may agree on care at home or at a healthcare facility. You should also make a plan on how to pay for long-term care.
Last but not least, don’t hesitate to get support, whether it concerns legal or financial matters. You can also seek the assistance of a geriatric care manager to help you with your parent’s care, insurance claims, crisis management, and how to gain benefits from community and other relevant programs. And don’t forget to reach out to support groups and other people who care about AD persons and their families.
What do you say to someone with Alzheimer’s?
What’s the key to effective communication? Understanding the person’s point of view.
The Alzheimer’s Association posted this on their website: “People living with early-stage Alzheimer’s would like you to know:”
- “I’m still the same person I was before my diagnosis.”
- “My independence is important to me; ask me what I’m still comfortable doing and what I may need help with.”
- “It’s important that I stay engaged. Invite me to do activities we both enjoy.”
- “Don’t make assumptions because of my diagnosis. Alzheimer’s affects each person differently.”
- “Ask me how I’m doing. I’m living with a disease, just like cancer or heart disease.”
- “I can still engage in meaningful conversation. Talk directly to me if you want to know how I am.”
- “Don’t pull away. It’s OK if you don’t know what to do or say. Your friendship and support are important to me.”
Now, here are more tips from the National Institute of Aging for communicating with an AD patient:
- It’s important to keep things and situations simple. Say or ask just one thing at a time.
- Tell the person that you’re there to help and provide reassurance that she or he is safe.
- Be more sensitive to the person’s feelings rather than words.
- Avoid arguing or attempting to reason with the person.
- Don’t show your emotions, like anger and frustration. Breathe deeply to control yourself, or leave the place for a while if it’s okay.
- A sense of humor will be good in communicating with an person with AD.
- When you’re doing a simple task like setting the table, ask for that person’s help to boost his or her self-confidence. You will also be appreciated for acknowledging his or her abilities.
Where is the best place for Alzheimer’s patients?
At the early stages of Alzheimer’s, the person can still live without requiring a lot of assistance. This means, you can still provide the love and care you’d like to pour out to your parent or member of your family who’s afflicted with this disease. Sure, there will be changes in your lifestyle and surroundings to adjust to the new situation. But your family can also take this as an opportunity to grow even closer.
The middle and late stages are the most challenging. The patient’s needs and behavioral changes may already require the help of a professional caregiver or a memory care/healthcare facility. You may also opt for hospice or palliative care.
In making this decision, you must always consider the needs of the patient. You and your family would surely want to hold on till your loved one’s last breath — to be there when it’s time — and home will feel like it’s the proper place. But if the patient is very ill and personal caregiving is not really enough, that’s when you should allow yourself to “accept” what’s happening and choose the best professional care within your means.
You can not stop what is inevitable. No one among us can do that.
What we can do, even if it tears our hearts apart, is entrust our loved one to the best hands that we can seek.
How do you commit someone with Alzheimer’s?
This is a decision that you and your family have to make together.
You should have late stage and end-of-life planning. You may opt for hospice and palliative care, which your ailing loved one may most likely prefer as well.
According to HelpGuide.org, “Hospice is traditionally an option for people whose life expectancy is six months or less and involves palliative care (pain and symptom relief) rather than ongoing curative measures, enabling you to live your last days to the fullest, with purpose, dignity, grace, and support. While some hospitals, nursing homes, and other healthcare facilities provide hospice care onsite, in most cases it’s provided in the patient’s own home. This enables you to spend your final days in a familiar, comfortable environment, surrounded by your loved ones and supported by hospice staff.”
How to manage an Alzheimer’s patient who wanders
“Wandering is a common behavior in patients with Alzheimer’s disease or other forms of dementia. And once the individual begins to show signs of wandering behaviors, they are at a high risk of wandering away or becoming lost. This behavior can be very distressing for caregivers and dangerous for the individual,” explained by the University of Pittsburgh Medical Center on their website.
This world-class health provider and insurer also teaches what you can do to prevent a person with Alzheimer’s from wandering:
Create a secure environment
- Install locks on doors.
- Install alarms on doors and windows.
- Secure your car keys.
- You can also child-proof your doorknob covers.
- Don’t leave the person alone at home or in a car.
- Get a location tracking device for the AD patient.
Ways to manage a patient’s restless behavior
- Give the person activities to occupy time.
- Encourage the person to do physical exercise regularly.
- You should make sure the person concerned gets enough sleep.
- Inform the person’s doctor about behavioral changes or increased frequency of confusion.