Alzheimer's disease and dementia can be a challenging journey, not only for the person diagnosed but also for their family members and loved ones as well. Each new day can bring new demands as you assist your loved one cope with changing levels of ability and new patterns of behavior.
Caring for a loved one with Alzheimer's disease can seem overwhelming at times, but there is help and support available through many different avenues that will guide you as you navigate the demanding road ahead.
Start by learning about ways to care for a loved one with Alzheimer's disease, as well as where to find support, and how to determine the long-term care options that are best suited to you and your loved one.
Park Health’s specialized Alzheimer’s unit features specialized healthcare professionals that are specifically trained regarding Alzheimer’s/dementia care, the disease process and personalized care. Alzheimer’s Specialty unit workers Ben Morris and Jennifer Doty have a special patience and compassion required to work with the residents of the unit.
Preparing for Alzheimer's and dementia care is not admitting defeat but rather accepting the diagnosis. As you come to grips with an Alzheimer's diagnosis, you may be dealing with a whole range of emotions and concerns. You'll no doubt be worried about how your loved one will change, how you'll keep him or her comfortable, and how much your life will change. You'll also likely be experiencing emotions such as anger, grief, and shock. Adjusting to this new reality is not easy. It's important to give yourself some time and to reach out for help.
Support is essential when we are caring for a loved one with any disabling illness. The more education and support you have, the better you will be able to help your loved one with Alzheimer's. Learn about ways to work through emotions, plan for support, and prevent burnout.
Keeping this in mind, it is important that early stage Alzheimer's care preparations are best done sooner rather than later so the patient can be involved in decisions. It may be hard to consider these questions at first, as it means thinking about a time when your loved one is unable to be involved in the process.
Putting these preparations in place early helps make a smoother transition for everyone.
Depending on the stage of diagnosis, include the person with Alzheimer's in the decision-making process as much as possible. If their dementia is at a more advanced stage, at least try to act on what their wishes would be.
Questions on who will make healthcare and/or financial decisions when the person is no longer able to do so? While a difficult topic to bring up, if your loved one is still lucid enough, getting their wishes down on paper means they'll be preserved and respected by all members of the family. Consider meeting with an elder law attorney to best understand your options. You'll want to consider power of attorney, both for finances and for healthcare. If the person has already lost capacity, you may need to apply for guardianship/conservatorship.
How will care needs be met? In our busy and demanding world, family members can no longer assume that a spouse or other family member can take on care giving. Care giving is a time consuming commitment that can quickly become overwhelming. The person will eventually need round-the-clock care in a secure facility. Family members may have their own health issues, jobs, and responsibilities to other family members.
One of the most painful parts of Alzheimer's disease is watching a loved one display behavior you never would have thought possible. Alzheimer's can cause substantial changes in how someone acts. This can range from the embarrassing, such as inappropriate outbursts, to hallucinations, paranoia, and violent behavior. Also, as a caregiver, you'll need to be increasingly vigilant for the person's safety in the home as they lose their memory. Everyday tasks like eating, bathing, and dressing can become major challenges.
Painful as some behaviors are, it's critical not to blame yourself or try to handle all the changes in behavior alone. As challenging behavior progresses, you may find yourself too embarrassed to go out, for example, or to seek respite care. Unfortunately, difficult behavior is part and parcel of Alzheimer's disease. Don't isolate yourself. Ask for help from the medical team and reach out to caregiver groups for support.
It's the nature of Alzheimer's disease to progressively get worse as memory deteriorates. In the advanced stages of Alzheimer's, round-the-clock care is usually needed. Thinking ahead to these possibilities can help make decisions easier. Every family is different but knowing your options can help you make an informed decision.
There are several options for extending care at home:
In-home help refers to caregivers that you can hire to provide assistance for your loved one. In-home help ranges from help a few hours a week to live-in help, depending on your needs. You'll want to evaluate what sort of tasks you'd like help with, how much you can afford to spend, and what hours you need. Getting help with basic tasks like housekeeping, shopping, or other errands can also help you provide more focused care for your loved one.
Day programs, also called adult day care, are programs that typically operate weekdays and offer a variety of activities and socialization opportunities. They also provide the chance for the caregiver to continue working or attend to other needs. There are some programs that specialize in dementia care.
Respite care. Respite care is short-term care where your loved one stays in a facility temporarily. This gives the caregiver a block of time to rest, travel or attend to other things.
As Alzheimer's progresses, the physical and mental demands on the caregiver can gradually become overwhelming. Physical tasks like bathing, dressing, and assistance with toileting may require total assistance. The level of supervision required also increases with time. At some point, you won't be able to leave your loved one alone.
Nighttime behaviors may not allow a caregiver to sleep, and with some patients, belligerent or aggressive behaviors may exceed a caregiver's ability to cope or feel safe.
Every situation is different. Sometimes the gap can be bridged by bringing in additional assistance, such as in-home help or other family members.
Family members should not feel guilty when this time comes. If moving to a facility seems like the best plan of care caregivers often feel a sense of letting their loved one down. If the health and safety of either the caregiver or the person with Alzheimer's is being compromised, it is definitely time to consider other options.
If the person with Alzheimer's is living alone, or the primary caregiver has health problems, this option may need to be considered sooner rather than later. It's also important to consider whether you are able to balance your other obligations, either financial or to other family members. Will you be able to afford appropriate in-home coverage if you can't continue care giving? Talk to your loved one's medical care team for their perspective as well.
If the best choice is to move the Alzheimer's patient to a facility, it doesn't mean you will no longer be involved in their care. Quite the opposite, you are making sure your loved one gets the care he or she needs. You can still visit regularly and stay involved in the person's care. Even if you are not yet ready to make that step, doing some initial legwork might save a lot of heartache in the case of a crisis where you have to move quickly. The first step is finding the right place for your loved one.
There are two main types of facilities that you will most likely have to evaluate: an assisted living facility or a nursing home.
Assisted living is an option for those who need help with some activities of daily living. Some facilities provide minor help with medications as well. Staff is available twenty-four hours a day, but you will want to make sure they have experience handling residents with Alzheimer's disease. Also be clear about what stage your loved may need to move to a higher level of care.
Nursing homes provide assistance in both activities of daily living and a high level of medical care. A licensed physician supervises each resident's care and a nurse or other medical professional is almost always on the premises. Skilled nursing care providers and medical professionals such as occupational or physical therapists are also available.
Locally, Park Health addresses the needs of short term rehabilitation, long term care, and, as of February 2011, Alzheimer's disease. Park Health has unveiled a brand new secured specialty ambulatory 16 bed unit for Alzheimer's/Dementia patients.
Park Health's specialized Alzheimer's unit features specialized healthcare professionals that are specifically trained regarding Alzheimer's/dementia care, the disease process and personalized care.
This unit provides 24 hour structured and individualized activity based programs, a private dining room with a panoramic view of wooded area with natural wildlife, spacious 24 hour activity lounge, a secured outdoor activity area in a beautifully landscaped park-like setting where a feeder daily attracts birds and wildlife including deer and wild turkeys.
Instead of room numbers there are shadow boxes outside each room for family photos and personal memory items that help patients identify their own room.
Along the walls in the recreation room and in the dining area customized artwork such as Frank Sinatra, the Three Stooges, Babe Ruth and other famous persons from the patients life are hanging. These and other items throughout the unit are specifically chosen to 'spark' memory.
For more information about Park Health's Alzheimer's specialty unit or a tour please call or visit Heather Balcar at Park Health 740.695.4925.