In the Bed Vs. By the Bed

I have always felt that I would rather be in the bed than be the one standing by the bed. It seems like it would be so scary and there would be such an immense feeling of powerlessness. I have only had minimal experiences as a caregiver but have worked for Hospice and studied them a little bit. As always, my views on this topic come mostly from the patient perspective.

Experience 1:

I was called to a Hospice situation one day to provide respite for the family. I was met at the main house with a very weird attitude. Not unkind, just not the usual warmth and grief. I was told that my patient was in the guest house and that I should go over there instead. I walked there unescorted and was promptly greeted by two women. Before I could finish introducing myself and enquiring about the patient, they had already launched into the family drama that surrounded my patient.

Apparently, the woman in the first house was their sister/aunt and they hated her. The mother and daughter team were visiting from the west coast to see Mom for the last time. The real reason I was called there was to make sure that The Duo could leave and The Sister could enter without actually having to see each other. I was there to provide air traffic control.

I was introduced to the patient and she was barely conscious. She was on a lot of morphine and had no interest in me. I sat by her bed and made sure that she was ok while The Sister and The Duo traded places. About 5 minutes after the Mother/Daughter left, Sister entered with two of her children who were around 6-10 years old.

Sister visited with her mom and proceeded to force her child to kiss grandma. The child was scared and grandma was unconscious. Eventually my patient woke up and Sister immediately held her hand and began to tell her that she and The Duo were still fighting and that they would never get along. Mom whispered “I love you” and fell back to sleep.

Sister and her children soon left and I sat with the sleeping patient for another half hour or so. The phone rang and I answered, as instructed. It was The Duo and they were ready to come back. They needed to know if the coast was clear. I told them it was and they said they were on their way. They called about two more times on the way back from town to make 100% sure that Sister really wasn’t there anymore.

As soon as they crossed over the threshold, they resumed Sister bashing. I stood listening for about ten more minutes before I told them I needed to leave. They asked how Mom was and wanted to talk more about Sister. I again excused myself and almost ran to the car.

I cried all the way home and felt sick for another few days. If I had to pick one thing to have when I was dying it would be peace. Peace in my home, peace in my relationships and peace in my heart. That poor woman was days away from death and her children still wanted her to play the role of mediator and mother. Her job was done and it was their turn to provide the nurturing. They couldn’t see past their own agendas to give their mother that precious gift.

My patient died two days after my visit. I wish her eternal peace and I wish her family healing.

Example 2:

I have a lot of pride. I don’t like to wear hospital gowns, I don’t like to be nurse-handled and I don’t like pity. Before my transplants, long stays in the hospital were routine. I would go in with horrible lung infections and be given powerful IV antibiotics for weeks. I’m not sure which makes you feel worse, the infection or the antibiotics. There were many times when I felt too weak and too sick to take a shower. My mother would offer to wash my hair and I would always refuse. It just felt too vulnerable and my pride prevailed over the griminess I was feeling.

One day, however, I guess I had reached my limit. I told my mom I wanted to wash my hair somehow, someway. She immediately sprung into action and began putting together an elaborate system of buckets, pitchers and pillows. I positioned myself at the end of the bed and she poured water over my hair and it fell into the bucket below. She scrubbed my hair and it was as if I had been reborn! Never underestimate a clean head of hair; it can make you feel so much better.

Over the years, we have perfected this technique and do it often. (We now use a chair tilted by the shower.) The lesson learned, other than the healing powers of shampoo, is that this kind of activity is equally helpful for both parties. I got the obvious benefits but it was clear to me that my mother benefited too. She got to do something to make her daughter feel better. Those kinds of opportunities were not common. It brought us closer together and I am so thankful I pushed my pride aside so that I could let her help me. Sometimes the nicest thing a patient can do for the ones caring for them is to do just that.

My Advice to Patients:

When you are sick, it is very easy to fall into the pattern of constantly focusing on yourself and your current state. Being a caregiver is a very stressful and sometimes horrible position to be in. Remember to be aware that your caregivers have difficulties too. Remember that they can burn out and need some balance (a.k.a. get away from you). Don’t forget to look outside yourself and see all that they do for you and share your gratitude. Most importantly, be honest with yourself. Could you get up and get that drink of water yourself but you’ve just fallen into the habit of asking for things? Is your current complaint bad enough that you need to share it? If not, there’s nothing wrong with keeping it to yourself. Have you asked your loved one how they are doing today?

There is a fine balance between getting the support you need and becoming an overwhelming, all-consuming drain on those you love. Do for yourself when you can, respectfully ask for something when you can’t. There will certainly be times of stress and crisis when being polite may fly out the window, but remaining conscious of how hard those around you are working (emotionally and physically) can only be beneficial to everyone involved.