DEAR HELPLINE, My mother has had Alzheimer’s disease for 7 years and has been living with me for the last four. I’m an only child and her primary caregiver. Mom has a home attendant for 12 hours a day, 5 days a week, which is great while I’m at work, and I take care of her the rest of the time. I want her to stay at home with me, but she’s been deteriorating lately and her needs are taking more and more of my time, especially during the night. Her doctor thinks she needs to be placed in a nursing home, but I promised her I would never put her there. I need her to be safe and well cared for, and I don’t know what to do. Any ideas? — Torn

Dear Torn,

It sounds like you have your hands full and are facing some very tough decisions.

In some cases, people with dementia can remain in the community for the duration of their illness, most often when services such as home care are in place. In other cases, it becomes necessary for the person with dementia to move to a residential care facility. When making this decision, the needs of the person with dementia need to be balanced with the needs of the primary caregiver, and her ability to provide care. It sounds like your mother has become more difficult to manage, especially at night, when you have no assistance. Increasing home care hours is one possible solution in keeping your mother at home. You can submit new paperwork (a new M11Q) requesting an increase in home care hours, but remember this is a process and will take time. Not only that, but the outcome may not guarantee your mother additional hours.

Perhaps nursing home placement is the best way to ensure your mother is safe and her needs are met. When trying to decide whether nursing home placement is best, there are a number of things to consider.

First, it is important to know that you need not make this decision alone. Speaking with your mother’s doctor may prove helpful, as he or she will ideally have experience working with people with dementia and will understand the myriad of complications the disease presents as it progresses. Mom’s doctor should be helpful in assessing her medical needs and her ability to remain safely at home. The Chapter offers a monthly meeting called “Easing the Transition,” which walks people through the process of nursing home placement. Friends & Relatives of Institutionalized Aged (FRIA) is an organization that provides information on facilities which could help you narrow down your search. FRIA can be reached at 212-732-4455.

Equally as important as ensuring your mother is receiving adequate care is taking care of yourself. If you are working all day and coming home and providing care to your mother for much of the night, where and how are you building in time for yourself? “Caregiver Burnout” is very real and could have serious consequences to your health, such as illness and exhaustion. One way to prevent burnout is to ensure you provide for yourself, too.

Reconciling your feelings about placing your mom in a facility can also be a complicated part of the equation. Sometimes, people let their desire to care for the person at home — or perhaps their desire to keep a promise previously made — overshadow the needs of the person with dementia as well as their own needs. If nursing home placement is the only way to ensure your mother’s increasing needs are being met, it is worth exploring, despite the feelings it may bring up for you. It is natural during this process to experience feelings of guilt, sadness and resentment. That said, sometimes promises need to be broken in order to ensure the person with dementia receives the care he or she needs, and that you can continue to manage her care as well as your own.

Also remember that caregiving does not stop at the nursing home door. While the venue may have changed, and your role along with it, you will still be an integral part of Mom’s care. You may feel some relief, no longer responsible for the day-to-day care, and you will certainly still be involved in ensuring your mother is taken care of.

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