Thursday, 8/22/2013 - We are spared from the rains while getting her into the car, but drenched by a cloudburst as we lift her out of the car during the fourth transfer to her wheelchair. It is quite chilly in the neurologist’s office when we arrive for Marie’s annual check-up at 1:25pm. We are still damp and cold at 2:10pm when the staff asks us, “You do realize that your appointment is not until 3pm?” The relative who made the reservation misinformed us and is not available to carry it out. The Doctor and her staff very kindly bump us up ahead of the next customer in the waiting room, who also very kindly accepts our apology. Marie is a bit tired already, what with listening to all of those requests for her to use her muscles and operate her limbs and such. Maureen and the Doctor begin to fill in the notes from the last year’s care program. Marie has a long list of prescriptions, what the two of them call a “cocktail” of pills which are given each day. Around about 18 to 20 years ago she contracted viral encephalitis, which settled in on the membrane surrounding her brain. This has left her with a partial complex seizure disorder and a loss of her short term memory. She will be prone to seizures for the rest of her life and this “cocktail” has proven to be effective, in that her seizures are very short lived, occur infrequently, and are not very violent at all. The main point of this visit to the Doctor is to get all of Marie’s head medication prescriptions renewed so that the relative who handles the bills and cash flow can reorder them in bulk, at the least price he can obtain. When Marie has one of these seizures, which only occur every four to six weeks apart, Maureen has a checklist of questions to ask her mother as a way of determining what kind of shape she is in and how aware Marie is of who, what, and where she is. This procedure quickly assesses whether or not she has had a stroke. The short term memory loss is not treatable. Marie can remember places, events, and faces from the past more readily than she can recall what she did 30 minutes ago. In general, her memory is highly selective as well, especially when she is in a disagreeable mood. The Doctor turns to Marie to do some tests, like heart and blood pressure and eye responses and reflexes, etc. Then she settles in to ask Marie a few questions. “How old are you?” - “April 26, 1926.” (The date is her birthdate. It’s the answer to one of the first post seizure questions) “How old are you?” - “I don’t know.” “Who are you?” - “Marie.” And, “Who am I?” “The Doctor.” (She doesn’t recall the Doctor’s name) “Who is that?” (pointing to Maureen) “A friend.” And, “What’s her name?” - “I don’t know.” “You don’t know her name?” (no response) “Who is that sitting next to you?” - “The husband.” (She won’t say my name) “Who is he married to?” - “My friend.” This is not a neurological problem or a memory difficulty. This is Marie, refusing to publicly recognize her own daughter. The friend’s husband then introduced a few subjects for discussion. There is quite a long lag time between when you request that Marie move a limb or change position and the signals get to her muscles, if they get there at all. Much of the time she exhibits a lack of motor control over most of her body. The muscles on the right side of her body have a tendency to contract and stay contracted. Her head is tilted to her right, almost on her shoulder, for most of the day and the muscles are so tight that they won’t release. Her brain also doesn’t see that she is viewing the world sideways. She sleeps on her right side, curled up like a cheese doodle. Getting her to lay flat in the bed and straightened out is a daily and constant struggle. When I ask her to look down at her knees, which adopt a 45 degree angle to the bed, they appear to her as if they are straight up, pointing to the ceiling. The Doctor doesn’t think that any battery of tests and scans would reveal anything which could be corrected or improved upon, especially considering Marie’s age and general condition. Who would not agree? The goal is to keep Marie as comfortable and happy in her own home for as long as possible. We are back in the car, heading home and Marie is flexing and exercising her legs during the drive. This pleases me no little as we still have three more transfers to accomplish before we can get her back into bed for a nap. We take the opportunity to have lunch together at the kitchen table before the last big push topside. The conversation varies in subjects, but Marie is most interested in talking about how God looks after all of us. From our personal conversations over the last three years, I know that she feels almost disappointed that she has not joined him in heaven yet. Now, I wish to pass along a tip which I discovered during this outing with Marie. Sometimes when we execute the transfers, I am behind her and lifting by gripping the waistband of her pants. This assures that she won’t drop if her legs buckle and break a hip. The new thing I found is that when I am in front of her, lifting with a hand under each armpit, I can use my knees pressing against her knees, to keep her legs from buckling out from under her. Try to file these tips away for the future, if you should find yourself in the business of eldercare. We are all back home, safe and sound, and very grateful that there is no lasting damage or injury to any of us. Friday, 8/23/2013 - I received a phone call in the morning from one of the three nephews who live nearby. They are each wonderful young men who have been most helpful with coming by to visit and help with Marie’s care, as well as taking time from work to assist in carrying her up and down the stairs. There is a chairlift now that we can use. The nephew was calling to find out what time he needed to come over to help get Marie to her appointment. He had received a text message from the relative who booked the appointment, asking that one them would come to our aid, but he gave them the wrong day altogether. This has us all wondering if this relative has something happening to his own health, which he hasn’t divulged. He’s not very communicative about his own comings and goings anyway, but he’s usually pretty precise, especially at criticizing other people.
Posted on: Sat, 24 Aug 2013 15:35:07 +0000
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