On the one hand, nursing homes are not dumping grounds where we can leave a loved one and wash our hands of all care beyond writing the checks and complaining about any failures we might find. On the other hand, there is no sense paying for care and then doing it yourself. It seems to me most families fall into one or the other of those mistakes.

I am walking with a couple. The husband is a resident in a nursing home that has a good reputation for care and offers some physical therapy which he needs. During the hospital stay, the wife rarely left his side. She slept in the room, fed him his meals, called the desk at every need, and nearly became ill in the process. Her doctor asked me to check on her. The day we met she had not been home for a bath, a meal, or rest for three days. She reluctantly let me sit with him for a few hours while she went home to take care of those and other things she desperately needed. Her husband did not progress far enough for her to take him home so the nursing home became her only choice.

She is following the same routine in the nursing home. She will not leave his side. She sleeps in the room each night and feeds him each meal. I am watching her exhaustion grow to frightening levels. This may become one of the many cases I have seen where the caregiver dies before the one receiving the care.

Turning over the care to others is hard. They will not do it with the same intensity or frequency you are providing and there will not be some person in the room at all times just in case the loved one wants some water or needs to go to the bathroom. The nurses will not instantly appear the second the call button is pushed. But, unless the condition is extremely critical, no one needs to be in the room at all times. If the patient was home, the wife would not be in the room at all times. There would be things to take care of in the house.

The best thing a family can do is form a partnership with the staff of the facility. As much as possible, let the staff take care of the physical needs of the loved one, while you take care of the emotional and intellectual needs. I am convinced the best way to get good care from the staff is for you to refuse to do it for them. They are human, if they know you will feed your loved one, why should they bother? If you are in the room at all times, why should they check? If you are going to call them at every need, they see no need for vigilance. You end up paying them to do the work you are now doing for them, and believe me, they will let you do it.

This does not mean, you are "Out of the loop" concerning the care. Every patient has a care plan and every family should go over that plan in detail with the staff and periodically meet to be sure the plan is being followed. I think it best to work behind the scenes to be sure the work is done, instead of doing it your self and then complaining about the lack of care.

Your role is every bit as important as the one played by the staff. Your job is to keep your loved one's mind alive and be sure they feel loved and appreciated. The family is the only connection they now have with the outside world and they need that connection constantly refreshed to fight off depression and loneliness. You are the only ones who will have the time for mutual projects that make the visits so meaningful and fun. 

I visited with a young mother who had spent several years caring for her husband and then was forced to move him to a care facility. She was having a struggle with feeling like she was abandoning him. During our conversations I casually mentioned that the nursing home would now take over the physical care and she could concentrate on being his wife. Tears filled her eyes as she said, "I hugged him last week, while he was in the hospital. That was the first time I had touched him like that in seven years. The care was so consuming there was never time. Now, I will have the time." That is what I call a partnership of care. 

__________

Doug invites you to log in and post comments at the end of each blog entry. He looks forward to hearing from you.