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Caregiving assistance for ALS: family and friends or paid help?
Do you rely on family and friends to assist you with your daily needs? Or, contract with outside providers?
Do you have any tips for our forum members who are thinking about finding someone to help with daily living needs?
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2 Replies
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Since we don’t have family living nearby, my husband is my full-time caregiver. When he needs to be away for any length of time, we utilize a local home health service called Bayada. Their home health aides have had special training in caring for patients with ALS.
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As they say, it takes a village! We rely on both. I have bulbar-onset ALS, and my needs are primarily food-related and communication. However, my husband has moderate dementia plus cardiac problems, so caregiving for the two of us can be quite a challenge. It’s a blessing to have both daughters nearby, but they have their own families and can’t do it all. We rely on paid caregivers four hours a day to manage my husband’s needs and to give me time for self-care. As my disease progresses, we anticipate additional paid hours.
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