Oxygen Required

 

Do we take air for granted?

 

Our daughter is on oxygen now.

I knew this day would come, but now that it is here, I feel shocked. Sad. Helpless.

Hospice now gives her morphine. She isn’t in pain, but this drug helps the patient with breathing. The nurse tells me morphine brings relief to the person who struggles with air.

Our little one grows smaller each day. Her rib cage is prominent. How long will this stage last?  Only God knows.

I know where she is going, but I don’t know when.

Soon, she will breathe heaven't perfect, fresh air.

I tell her it is okay to go on to heaven and see Jesus, angels, her husband, and her granny.

She frowns when I say this. She isn’t ready to leave us yet.

Her dad and I have almost everything planned, and we try to prepare ourselves. This is not an easy thing to do.

Here are a few suggestions for caregivers when you reach this stage.

1.    Tell the patient it is okay to leave. Some patients are waiting for you to say that.

2. T ell them you love them, and you will see them again.

3.    Talk with professionals about what to do next.

4.    Make preliminary arrangements.

5.    Gather pictures for a slide presentation at the celebration of life ceremony

6.    Write the obituary.

7.    Does the person have a favorite song? Scripture? Include it in your program.

8.    Cry as much as you need to.

Naked Bodies

 Ablutions

We enjoy showers when we take one without help. Having someone give us a bath or shower is a different story. 

Washing a naked adult body can be a challenge for family caregivers.

While her father could still somewhat understand, one daughter told me, “I had my dad sit on a chair in the tub, and I would wash his hair and body. When that was done, I’d then hand the washcloth to him. I’d say, “Now you wash your private parts.” When finished, she managed to get him out, dry him off, and dress him.

A husband I know bathes his wife. They are married, so touching intimate parts are not new. But how about a stinky diaper? Yes, the husband changes it, and it is especially dramatic when the diaper is a dirty, nasty one.

Another man lifts his daughter from place to place, but when her body is intimately revealed, he leaves his wife by herself to take care of the job of changing diapers and bathing.

How about a mother changing an adult daughter’s diaper? Or a daughter changing diapers and clothes for a mother or father?

When babies need a fresh diaper, we think nothing of it. But how about when an adult needs one? Well….

Difficult stuff.

Everyone deserves the gift of dignity and privacy, but people with Alzheimer's lose that gift. Privacy is no more.

This disease is a progressive one. In the early stages, the person may get angry because they need help. Later, they might become embarrassed, but eventually, they grow obtuse. In other words, they don’t know what is happening.

But the one providing the care recognizes the situation. They see a deteriorating naked body and smell the foul secretions.  This must be difficult for a nurse or an aid in a facility, but it is far worse for a family member.

A nurse told me once, we grow accustomed to seeing the body in all stages and functions. Vomit, blood, urine, feces…it’s all part of being human.

Yeah, well, halleluiah for medical people who devote themselves to helping the rest of us.

I was in the hospital last July, and I don’t have dementia. Praise God for that, and I hope I never do. However, I was reminded how a person can experience the indignity of someone else hovering over their naked body doing things to it. I felt awkward, embarrassed, and ashamed.

Our dementia/Alzheimer patients can still undergo the same emotions I had.

And it is a sad state of living.

Tips for Caregivers

1.    Assure the person you aren’t looking at their private parts.

2.    Talk about the weather, the baseball game, sing a song. Distract the person from what you are doing.

3.    Be gentle.

4.    Do the job as quickly as possible.

Treat the person with respect.

Nearing the End.

This past July was a traumatic month.  I’d like to share a bit about what happened. We are near the end. Shelley is actively dying.

On July 3, we visited Shelley. I told her my birthday was the next day, and I sang the Birthday Song to me for her. It is our tradition. We always called and sang to each other on birthdays and anniversaries.

Did she understand? I don’t know. 

I sang more tunes for her. Some hymns, and I always add, “You Are My Sunshine.” I told her it was also America’sbirthday. Before we left, we quoted her favorite Scripture and prayed with her.

On July 18, Shelley’s daughter, hubby, and baby arrived from New Hampshire. We met them for dinner. On the way home—devastating news.

Shelley’s hospice nurse called, and we spoke by phone for the thirty-minute drive to our neighborhood.  She told us Shelley wasn’t doing well, and she expected her to pass at any time. When we arrived home, Paul and I stood in the kitchen, put our heads on each other’s shoulders, and cried our hearts out.  We’d been expecting such a call, but when it came, we found ourselves not ready. I slept with makeup on and clothes close by…just in case they called to say, “She’s going.” The call didn’t come.

The next day, July 19, Shelley’s daughter and family, Shelley’s sister, and us went to see Shelley. The sadness was profound. The family said their goodbyes.

On July 20, Paul and I went to see Shelley. She was in her room in bed, and it was a darkened place. One of the caregivers sat with her. I didn’t see him at first, but he arose from a straight-back chair to say hello. He didn’t say, but I instinctively knew he was there to be with our daughter if she went to heaven. He left, and I told Shelley, “You’re getting well, and you are going to be healthy again.” I meant she would be well in Heaven.  She must have understood me and thought I meant she was getting well here on Earth.

Over the next few days, Shelley plateaued at a new, declined level. Her hospice nurse said, “she’s a survivor.”  I replied, “She always has been. As a full-term baby, she weighed a whopping 4 pounds and 4 ounces at birth. The hospital nurses didn’t think she’d make it, but she did. I nicknamed her Tiny Tuffy.”

My heart breaks as I see her waiting for Heaven.

On my latest visit, she lay in bed. She stared at the ceiling and mumbled. I asked, “Who do you see? Do you see Jesus? Do you see Granny?” She babbled back, but I couldn’t understand a word she said.

Before I left, I placed my hand on her head and prayed. “Jesus, please make Shelley well again.” She replied with a resounding, “Yes!”  I said this phrase three times, and each time, she said, “Yes!”

She’s ready to go. I don’t know when she’s going, but I know where.

Points for Caregivers

1.    Your loved one can hear, so be careful what you say.

2.    Sing. Hearing and music are two of the issues that linger to the end.

3.    Be there if you can. I know she may go when I am not there. When the angel comes for them, they go alone, but I’d like to be there to hold her hand when the time comes.

4.    Guilt might come, but remind yourself, we all do the best we can.