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Being diagnosed with Alzheimer’s disease can be terrifying, not only for the individual but for loved ones who will take on the role of caregiver. Everyone involved is thrust into a maelstrom of emotions and decision-making.
NewBridge Services Senior Assistance for Independent Living (SAIL) guides families to useful services and programs available in their community. Through NewBridge@Home, caregivers can receive counseling to help them cope with their family’s new reality. Both programs are free to Morris County residents age 60 and over. [Normally provided in clients’ homes, both programs are currently operating via telehealth because of the COVID-19 pandemic.]
During Alzheimer’s Disease & Brain Awareness Month, NewBridge SAIL team leader/case manager SueAnn Schierloh and registered nurse Margaret Macrae answer questions about adjusting to the caregiver role:
SS: They can expect to feel lots of emotions: anger, depression, fear, isolation, a sense of loss. For some people, there’s a sense of relief, because now there’s a diagnosis and they finally know what’s been causing the problems, what they’re dealing with.
MM: At the beginning, Alzheimer’s presents as forgetfulness or confusion, so it’s hard to tell the difference between it and normal memory loss from aging. (If the onset of confusion is sudden and extreme, the cause is more likely dehydration or a urinary tract infection.) Once a diagnosis is made, caregivers need a lot of education, and an acceptance that this is going to progress.
MM: Clients are highly functional in the early stage. This is a time for the caregiver to become educated about the disease and medications that may improve memory [for a period]. People entering the middle stage of Alzheimer’s need a firm daily routine. It helps for caregivers to write down what to do and what not to do. One client’s daughter leaves sticky notes around the house. By late stage, taking care of a person with Alzheimer’s involves a lot of physical work. They may be at risk of falling or wandering. They require 24-hour care. Some clients can get nasty, even dangerous. It’s total exhaustion on the caregiver’s part. Caregivers may come to the point of realizing, this is too much for me. I can’t do this alone anymore.
SS: Patience. It’s so important, yet so challenging. That’s especially true when the person is having mood swings and going through behavioral changes. You want to allow them to be as independent as possible, but you have to balance that with safety — and that’s a very fine line. Flexibility is key: you have to be able to adapt because circumstances are always changing.
MM: There are times you need to walk away, to sit outside or lock yourself in the bathroom for a few minutes. If you can, get help from family members or a home health aide to give you a break. It’s OK to take time to take care of yourself.
SS: Share thoughts with relatives and friends, or keep a journal. Getting feelings out of your mind can have a very therapeutic effect. Try meditation and mindfulness practices. Exercise. Even if you can’t leave your home, you can talk to a therapist via telehealth, and join an online support group. One other point: avoid alcohol. Trying to numb your feelings will only cause more problems.
SS: NewBridge helps families develop a plan and provides emotional support. A case manager meets with the client and family, and does a full assessment (including a medical evaluation) to determine what services are needed. NewBridge SAIL is a referral source for services such as home health aides, grocery shopping, transportation, and bill-paying. For clients with Alzheimer’s, the number one need is for home health services. Both clients and caregivers can receive one-on-one counseling through NewBridge@Home.
MM: We help people deal with what’s going on here and now, and prepare for what lies ahead.
SS: Support, education and empathy. Build a support network, educate yourself about the disease’s progression, and never lose empathy for them.
The Alzheimer’s Association website is an excellent resource for caregivers.