These are the scary days when you may be on your own with your loved one, but you don’t need to do it alone. Here's what to know if you're caring for a loved one with Alzheimer's.
Sometimes, taking care of a loved one with Alzheimer’s makes you feel good because you are giving love and comfort. On other days, you may be overwhelmed with new challenges. Changes often happen bit by bit over a long period, and you may not realize how much you have taken on.
Alzheimer's disease is the most common form of dementia. In the first stages, people with Alzheimer’s will forget recent events or the names of familiar people or things. They may no longer be able to do simple math or have trouble making a grocery list and finding items in the store.
Find caregiver support
These are the scary days when you may be on your own with your loved one — doing a bit more each day. Find a support group with people caring for someone at a similar level of functioning. The Alzheimer’s Association (1-800-272-3900) runs support groups, including many who help with early-stage dementia.
Consider calling in a geriatric care manager who will come to your home and suggest what you need. The National Association of Professional Geriatric Care Managers (1-520-881-8008) has listings.
Design a schedule that allows you to flourish and keep up with other friends, families, interests, and obligations. The National Adult Day Services Association (1-877-745-1440) will help you find day care to help ease your stress, which may pick up patients and mind them during the day and return them home. You can also get a home health aide to come for a few hours a day — building up the hours as needed. Medicare will cover some of the costs. Before you pick an agency or particular aide, ask for references from their customers. At Medicare's Home Health Compare, you’ll find local agencies with ratings based on patient surveys and other information.
If you are the main caregiver, make sure you get a holiday: Respite services provide short visits from a few days to a few weeks in a nursing home or other facility. Find them through the National Respite Locator Service; Medicare or Medicaid may cover the cost of up to 5 days in a row of respite care in an inpatient facility.
You’ll need to get practical help before your mother or husband reaches the middle stages. That’s when people often need help getting dressed and controlling their bladder or bowels. By then, they may not recognize family members and friends, and can’t be left alone because they may wander off. It is often hard to sleep. They may make threats, accuse others of stealing, curse, kick, hit, bite, scream, or grab things. In the late stage, patients may not be able to walk or sit up without help. Sometimes they cannot talk, and have trouble swallowing and refuse to eat.
How to care for the caregiver
Even with help, it’s easy to get so busy that you don’t think about yourself. The job becomes even harder when the person you're caring for gets angry with you, hurts your feelings, or forgets who you are. Feeling discouraged, sad, lonely, frustrated, confused, or angry are all part of the picture.
- I'm doing the best I can.
- What I'm doing would be hard for anyone.
- I'm not perfect, and that's okay.
- I can't control some things that happen.
- Sometimes, I just need to do what works for right now.
- Even when I do everything I can think of, the person with Alzheimer’s will still have problem behaviors because of the illness, not because of what I do.
- I will enjoy the moments when we can be together in peace.
Alzheimer's Disease Education and Referral (ADEAR) Center
Alzheimer's Foundation of America
National Institute on Aging Information Center
February 15, 2018
Janet O’Dell, RN