So Where Are We Now...

Mom has grown weaker and seems to be sleeping a lot more these days. She is having a series of issues that have caused me concern, but the Hospice Nurse has advised me that all are expected symptoms of the disease. Her circulation is decreasing, so her hands tend to turn blue if they lay in her lap for too long. Her right hand is curling more and more, but I suspect that is partly due to the fact that it hurts her and she doesn’t use it as much. She is having more difficulty swallowing, even with liquids. The nurse has indicated that we might have to start pureeing her food to make it easier for her to swallow as time goes on. Of course her language skills are deteriorating and sometimes she will engage me with a sentence or two of completely garbled sounds that are not even words. Then she looks at me, waiting for me to respond; clearly thinking that she has spoken the words that she was hearing in her mind.

We have taken her off her pain medication for right now in an effort to see if that was what was causing her to be so sleepy. It has not seemed to make a big difference, but we are looking at other methods of addressing the pain that don’t involve ingesting medications. A cousin suggested a heating pad or heated rub, like Tiger Balm or Bengay. We had tried the heating pad in the past, but that tended to irritate her more than it helped her. She is not very tolerant of heat. I worry about the heating rubs for much the same reason. At some point we will have to decide if she is in more pain than she needs to be and if so, we’ll go back to the medication to keep her comfortable.

As her food and liquid consumption has continued to decline, we have taken her off of her insulin. The danger of her sugar dropping too low in the night far outweighs the occasionally high blood sugar numbers that we get some days. At this point, she is not going to suffer from the impact of high blood sugar, but may well suffer from a diabetic coma if her sugar drops too low.

She really isn’t leaving her room now, and, in fact, isn’t leaving her bed other than to be carried to the bedside toilet and back. Today we actually bathed her and changed her diaper in the bed because she was so tired from the morning toilet routine and the nurse’s visit. She didn’t want to eat dinner tonight, but did get half a sandwich down and her cookie! Most days we are lucky to get 12 to 16 ounces of fluids in her, but today we got an ounce or two more. Her bowel movements are being impacted by her lack of movement and the reduced intake of liquids, but we are compensating with a stool softener and a very gentle laxative. We don’t get daily movements, but they are becoming less painful when she does have one, so we are happy with that.

I keep telling my caregiver’s that, when they ask her a question and she answers yes or no, that she really has no understanding of what the word she’s spoken means most of the time. They didn’t believe me until they started to act on the answer she had given them and end up in a tussle, with her responding negatively to what they thought she wanted them to do. Now-a-days, I ask her a yes or no question, no multiple choices, as she can’t even process that any more, and then I gently try to act on what I think she has indicated. I judge what she really wants by the way she responds to my actions rather than to my questions. It makes life more interesting, but she still engages with me that way.

It’s interesting what processes and what is missed in her mind. She can’t process most jokes, but she still processes physical humor quite well. For example, I will make a smart comment and then roll my eyes. She doesn’t react to the comment, but giggles openly at the eye roll. Hence, TV shows with lots of physical humor seem to appeal to her more than shows without it. The old TV show “Monk” is one that really triggers reactions from her, because of the physical humor and because the lead character makes so many tormented and silly faces.

She is still very affectionate with those around her; kissing hands of visitors and playfully threatening, while giggling, the nurses and caregivers who are assisting her with her daily needs. It is not unheard of to be patted on the head when you are bent over trying to put on her socks. She is a loving person, by nature, and that nature is still on full display.