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A Difficult Decision

By Paulette Kaufman

The decision to place a loved one in an assisted living facility is a difficult but frequently unavoidable one. Even though the choice may be absolutely necessary, the person forced to make the decision for their spouse or parent often feels an overwhelming sense of guilt.

When the time came for me to decide to place my mother, who suffers from Parkinson's disease, into assisted living, I knew as a nurse that it was the best decision for both my mother and me. All the same, I felt an enormous amount of guilt, and when I came home after helping my mother move into her new community, I broke down, sobbing.

Today I work as a marketing counselor for the facility where my mother lives–so I see her every day and know firsthand that she receives excellent care–yet there are still times when I fail to hold back the tears.

Many caretakers who decide to put their loved one in an assisted living facility think they have failed them somehow, even if they have already spent years caring for them and simply cannot do so any more. I had been taking care of my mother for three years before bringing her to live in a long-term care community, helping her with daily tasks and spending every other night at her house. I even managed to make it a family effort, with my son easing much of the burden during his summers home from college. My mother did not want to leave her home, and I did all I could to see that she would not have to leave.

But eventually that time came. In a fall my mother broke her foot, but she hid the injury from me. A fall like my mother's is especially worrisome because Parkinson's is an incurable disease which progressively and inevitably gets worse. Patients are often able to minimize the ill effects of the disease for a time, but eventually they will require frequent or constant assistance from a caregiver. My mother's fall was a sure sign that she could no longer live on her own. When her doctor discovered that her foot was broken, he told her this in no uncertain terms. Now it became my responsibility to help her find a new home, and though part of me wanted to take care of her just as she had taken care of me as a child, I knew that I did not have the capability to care for her as her Parkinson's progressed.

In some respects my mother and I have been fortunate, in that she was aware of her doctor's instruction and conscious of the reasons for entering an assisted living facility. Children and spouses of Alzheimer's patients, on the other hand, must bear the full weight of responsibility when choosing the option of assisted living, though many spend months or even years denying this fact. Usually, when it comes time to seek out an assisted living facility for an Alzheimer's patient, that patient has already reached an advanced stage of the disease and likely exhibits a number of disturbing symptoms. If the caregiver has decided that it is time to consider assisted living, the patient may already be in need of help with dressing, shaving, eating, and even using the bathroom. Perhaps the patient has become delusional, convinced for instance that the caregiver wishes to harm them. These are all common symptoms of Alzheimer's disease, and, like Parkinson's, such symptoms will only get progressively worse. Recognizing that a patient whose Alzheimer's has reached such a stage and may need to enter an assisted living facility is positive. Unfortunately, I have met many people who think they can convince their parent or spouse of their need to enter an assisted living community, when in fact it is only the children or spouse of Alzheimer's patients who can ultimately make the decision.

Compounding the grief is that patients who have reached an advanced stage of Alzheimer's often lose awareness of recent experiences and surroundings, and may even lose recognition of their caregiver and other loved ones. Because of this, the patient will probably be confused by the move and unaware of the suffering of the child or spouse responsible for placing them in assisted living. Like I did, people begin to cry at times. Depression and anxiety, caused by guilt, sometimes become acute.

But there are a number of things that one can do to diminish feelings of guilt. In my case, besides visiting my mother every day, I always make sure that she has fresh flowers in her room. When she was able to, she spent a lot of time in her garden, and the flowers help her to experience a bit of the garden all the time.

On Sundays, I spend the day with my mother in my home, picking her up early in the morning and taking her back to her assisted living facility in the evening. I try never to miss a week.

Beyond that, it helps to remind oneself of the advantages that an assisted living facility affords. Working in the community where my mother resides provides me with some added insight into those advantages, for which I am grateful. Besides the obvious–the physical aspect of care–there is the always-important social aspect of continuing care communities. My mother, even before entering the facility, was very antisocial, and I even made a friendly bet with the staff that they would not be able to get her out of her room. For three and a half years I was winning that bet, but six months ago, after much persistence on the staff's part, they finally got her to participate in the events.

One day recently, while I was with my mother, she took out a quarter from a drawer in her room. Though Parkinson's makes it difficult for her to speak, she managed to say, "Cards"–my mother had won the quarter playing cards. She never used to play cards.

Despite moments like these, which remind me of all that an assisted living facility offers that I alone could not, the guilt and the grief never entirely go away. But I know my decision was the right one, and I know that I am not alone in feeling involuntary pangs of guilt. My hope is that others in my position share these same realizations.

Paulette Kaufman is currently Director of Sales at Keswick Pines, a Lifecare Center in New Jersey, which offers assisted living and comprehensive health care programs to residents, providing personal assistance, nursing care, pain management, and memory impairment support. Ms. Kaufman's mother has been a resident of Keswick Pines for four years.

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