The Learning Curve

My mind is such a muddle today. I have been tired and sad and searching for answers, all to no avail. Mom came to spend four days with us. My sister is having a new shower installed for easier access for Mom now that she is living there. Mom had to have surgery at the end of March and we our fears of further decline have been realized. Surgery went very well although took longer than expected with a little more repair work needed. So she was under anesthesia for twice as long as first predicted. But the repairs were made with no problem. She woke in the hospital very confused but docile. Pain management went very well while there although she had vivid dreams and hallucinations. Pain meds were changed with discharge and off she went to rehab. But she became more and more confused, fearful and depressed. The rehab, although thought to be about the best around was fair at best. She came in as a post op patient but did not receive the attention needed for pain management and simple physical care. She would get up in the night, the alarm would go off and nobody came. She was not bathed or monitored when she was given a meal. She did not know where she was or I fear, who she was. Her name was never put on her door and the staff, when they came in, called her by a different name and she smiled and responded in confusion. We took her out of there after only 3 days and moved her in with my sister. The ride since then has been wild. 24 hour care is needed and my sister has shouldered much of this. Caregivers are in for about 20 hours a week. Not enough for my sister to get a breath or any rest. We are learning as we go how to schedule care and monitor progress. Sundowning! Mom began to exhibit symptoms of paranoia and terror from late afternoon and into the evening. Crying and wailing and praying to die but fearing death. We were at our wits end until a visiting nurse suggested we check information on something called Sundowning. Well, Bingo! that is exactly what was happening to her. I went online to read other accounts of this problem from other family members and caregivers and found that the pain med we were using for management could be part of the problem. We stopped the med and the sundowning has improved a great deal. We have also found that Mom will complain of pain one moment and then when we offer an OTC remedy she says she doesn't have pain, so she is no longer reliable to be able to know if she herself is in fact in pain. Physically, Mom is recovering but mentally the decline continues. While she was here I did not leave the house except to take the dogs out for a quick walk. Each time I came back after about 5 minutes, she was anxious and worried because she didn't know where I was. Repetition is only repetition. She retains very little and is easily frightened and confused. Her mood is negative and her tongue sharp. We coax her to eat and she eats only a few bites. She forgets that she has eaten sometimes so we have to keep close track of every bite and every fluid intake. It is devastating to watch the constant anxiety and her only relief coming in the form of negative mood or commentary. Her doctor has now prescribed an appetite enhancer so we have great hope that she will start to enjoy some foods again. I make soups and other comfort foods and portion them and freeze them for she and my sister and my other sister brings sweets often. There is always something offered and we find that something simple and sweet is more welcome than say, spinach. Remember when you were a child and vegetables generally came from a can and we all hated them and made faces or fussed when we had to eat them? That is the behavior we see from Mom now. Full circle I think. We are dedicated to finding positive things to talk about. We will continue to remind her of good memories and hope that, as time goes on, she will become more contented and try to find some positive energy in her life. By the fourth day she did begin to talk about going "home" and she meant my sister's home. She seems to accept that this is the only option for her and is beginning to give me hope that we will turn a corner for her to be more contented and find peace. Until then, we will hang on for the ride. So what is on my needles you ask? Lacy, complicated knit shawls that keep me focused. One in wonderful dove colors. Another a soft yellow with silver thread running through it. I have begun beading summery flowers in French Beaded Flowers and bead knitting a brides evening purse. If I sound scattered, be assured that these projects keep me sane and I am grateful for the distraction. All will be well. All will be peaceful. But the learning curve is sharp.