Our dilemma: what to do?

A knowledgeable resource said that the nursing home’s major goal and effort is to keep Margie alive, and so they force food into her. This is against my explicit directions repeated often that she is only to be fed as long as she wants food, and as soon as she indicates “no more” stop feeding! This same source says that if the food was not forced on her she would be dead within weeks.

Her Directive to Physician says, “Where the application of life sustaining procedures would serve only to artificially prolong the moment of my death and where my attending physician determines that my death is imminent or will result within a relatively short time without application of life-sustaining procedures, I direct that such procedures be withheld or withdrawn, and that I be permitted to die naturally.” She signed that almost two decades ago.

To qualify for Hospice her physicians signed legal statements that her death will result within a relatively short time — six months. “Procedures” to me includes force feeding. Nursing homes are not going to change, I think, so what shall we do?

Slowly shaking her head

Today as she has several days scattered over recent weeks when I say our family password, she shakes her head slowly negatively. When I say things that she usually enjoys, she either has no expression or she shakes her head slowly negatively. When I caress, the same no. As I read her face, her expression, her eyes, her actions, I wonder if she urgently wants this nightmare to end. Knowing her as I do, our interaction for so many years, and how often when she could speak, she said I want to die. I don’t see this negative message every time I see her, but more often in recent weeks. As Alzheimer’s robs her of what little she has or feels, how desperate it could make her feel.

Very quiet days

In the several days since that unusual experience of Margie being alert so she responded to my talking about my eye surgeries, she has been very quiet. When awake only slight recognition, and minimal response.

Surprising awareness & understanding

How much does a person with Margie’s dementia understand? Often I feel very little. Today an experiment: several weeks ago I had cataract surgery that, using a new kind of implant, gave me 20-20 vision! A week ago I had LASIK surgery on the other eye and it is improving! So today since Margie was awake and alert I explained to her in simple language–not at all childish–about the 2 surgeries and how clearly I can see. She smiled and glowed as I told her; she looked excited. As I prepared to go after we had chatted, she indicated she wanted a kiss on her lips so we did. I will try sharing experiences in the near future.

Brief joy mostly distant

 

Today Margie responded instantly, recognizing our family password, but soon seemed less present and less alert. I caressed her and spoke to her and she gave some response to some of these, but her mouth was closed so there were no smiles and she seemed only partly present. Then she reached up slowly with her left hand to run her fingers through my hair and then slowly across my face. There was no smile but her eyes were open, just not alert. I continued occasionally caressing and talking, but with minimal response. Her hand through my hair and on my face was joyous, but her minimal alertness concerned me.

Is Alzheimer Good Friday?

Margie’e frequent response to greetings was, “I’m up to no good.” I had forgotten this retort until a friend reminded me recently. Yesterday she was alert and responding so I said to her, “Are you up to no good,” and she brightened and gave me a look that made me think she had some memory of using that phrase. Daily words or events remind me of living with Margie — her quips and thoughts and actions. Life with Margie was full of joys and surprises. Now she is often deeply asleep, but sometimes her eyes are open and she quietly responds to words and caresses. So much is gone; so little remains.

This is Holy Week. Richard Rohr suggested today we live mostly in Holy Saturday. That prompted my title for this post.

Two patients!

I need to remember that I am a caregiver for two people! I am a caregiver for Margie in every way that she will recognize or appreciate. But I am also a caregiver for myself. So often we hear or read of a caregiver who died before the patient being cared for. But it is more than my taking care of Margie; it is my own mental health and well-being. I must keep reminding myself to nourish my friendships, get together with friends, go out to events especially with ladies. If I am not healthy, cheerful and happy, a whole man, how can I take care of Margie?

Songs connect

Margie was more alert and awake this afternoon, so I asked the attendants to put her in her wheelchair. While waiting for them to come, I sang “When the Saints come marching in” and Margie tried to sing with me! She moved her lips and some sound came out some of the time but she seemed to be shaping many of the words with her lips and she was tapping the rhythm with one hand. Music has an amazing availability when so much memory is gone. While she was in her wheelchair I caressed and said familiar words that she enjoys; she reached to touch me, and tears came to one eye.

Ask caregiver ‘How are you doing?’

A good friend asked me how Margie was doing and I told her. She then asked, “How are you doing?” With emphasis on you. Since she is a good friend and very knowledgeable I answered honestly but also briefly–lonely but keeping busy and a few other thoughts.

I think all of us when we talk with a caregiver need to do what my friend did, and ask of the caregiver, “How are you doing?”

Meanings?

Today an interesting contrast: Margie vigorously pushed my hand aside when I tried to caress her, but when I sang a favorite song she nodded her head to the rhythm. I wonder if her pushing away my hand is really a deep wanting to push away this Disease that has imprisoned her. Even with her profound memory loss is she dimly aware of not being able to walk or talk and of having to have her diaper changed? For the Margie I’ve known all these years this must be hated. Is her striking out the best expression she has for her anger at the Disease and its effects?