"Dementia? No. She's still very sharp."
The neurologist looked at me pityingly. He brandished a clipboard holding the exam he was about to give to my mother to see what stage of dementia she was in. It was right after Christmas 2014, and she had been admitted for a blood transfusion (I had been begging them to give her one ever since her hemoglobin level had dropped to 7, but the regular doctor didn't want to do that--even though my premise is that with pernicious anemia and COPD, she just wasn't getting enough oxygen anywhere by that time) and for pneumonia. They were running medical tests on her because they believed she had NPH, a normal-pressure hydrocephalus that causes pressure on the brain, incontinence, a failing gait (translation: lots of trouble standing and walking and getting started walking), and dementia.
She looked at me in bewilderment. "Nonsense!" she said, as always. "I'm fine."
But as he asked Mama the questions, it became evident that I either had been covering up for her (unwittingly) for some time, and/or she'd been concealing the extent of her loss of knowledge.
"What year is this?"
She looked at me. "Um . . . 1989."
"What month are we in?"
"October."
"Now, you know better, because we just had Christmas," I began, and they shut me off. "If you want to stay in here, don't help her," the nurse said sternly.
"Who is the US President?"
"Um . . . O-something. The colored man."
I winced. She hadn't talked like that since the late sixties. She never said "colored." Where had that come from? Yet the doctor just made a note and went on.
She did know that we were in Richardson, Texas, that she lived here at our address (which she remembered perfectly), what Daddy's name was, what her mother's name was, and where she was (the new hospital). She could no longer sign her name legibly, draw a house (you're supposed to be able to draw a house like a little kid will draw), or read aloud to the doctor. I think she was blowing off that last one, because later when we had occupational therapists testing her, she could read questions aloud and then answer them fairly well--at least until August 2015.
The doctor turned to me. "She's in an intermediate stage right now."
"She IS eighty-five. Maybe she's just a little senile."
He managed a serviceable grin. "She has no short-term memory. She can't remember what happened ten minutes ago."
"Of course I can," she said haughtily. Her hearing might have been failing, but she could always hear things she considered insulting.
"How do we fix this?"
He chuckled. "When you find out, let me know."
"Her regular doctor thinks this could be due to something they can fix. Like her diabetes, or a drug reaction, or something. He already took her off several prescriptions and put her on the Alzheimer's drug."
"Well, I'll send him this report."
Everyone left the hospital room and my mother looked at me. "I want to go home."
"You still have an infection they're treating with the IV antibiotics," I pointed out.
But now I remembered things. On our family trip to Monterey, California, she not only had been unwilling to get out of the car to take rest stops (my husband got Depends and made her sit on them on the seat because she wouldn't wear them--she said it was too hard to walk to the rest stop bathrooms), but she'd been asking me some weird questions to which she should have already known the answers. She was well aware of where we were during the journey, but she zoned out quite a bit, which was unlike her. Had she really been going into dementia? Could we not find what was causing it and fix it?
The tests came back saying that her NPH could not be shunted away, as many cases of hydrocephalus can. ("The switch gets flipped back on," they said, in those who can be shunted to relieve the pressure of too much CNS fluid.) I asked what I should do and they just said, "We'll send home health to help you out for an hour three days a week. She'll go to rehab when she's discharged to get her walking better."
The rehab wasn't terribly successful. She was already disabled and frail, and she made very little progress. She spent her time phoning me and begging me to bring her home. I kept telling her that if she would do the therapy (including speech therapy), she could come home. She still made me come there every day and take her out on a drive in the van for most of the afternoon, including getting her fast food (which she mostly didn't eat, except for the diet Coke.) She started wasting away. Her pants would fall off as they walked down the facility's hall for therapy. The physical therapist told me, "Bring her some pants!"
"What size?" She'd worn size 14/16 for many years.
"About a ten, I'd say."
I managed to buy her the clothing, but at these facilities, even though you write the patient's name in BIG LETTERS on the inside waistband with a Sharpie, everything good gets stolen. I had to resort to going to upscale resale or Last Call and getting three or four pairs of pants and six tops at a time, just about every couple of weeks. When I complained to the staff, they said there was nothing you could do about that, that it was endemic. They also took the battery out of her cell phone. When I brought a replacement battery, they took and lost the entire phone. But she found phones in other people's rooms and at the nurses' stations, so she still called me. At first she would call 911 and beg them to send the police to rescue her from being taken against her will. This did not sit well with anyone.
Anytime someone would say she had dementia, she would say, "I do not!" as if we were fifth graders taunting her about being short or whatever. She really did not accept this onus. She could make good sense most of the time, still, back then.
Eventually when her insurance days ran out, we went home and she seemed okay for a while, but soon she began panicking all the time and could not be left alone at home. She got so that she couldn't be left alone in a room. I could get her settled in her chair at the breakfast table with the TV on a good channel, the dog at her feet, and a plate of food or snacks in front of her, and tell her I was going to put away the laundry I had just done. By the time I was down the hall, she'd be shrieking my name and standing up to hobble down the hall on her walker. She was terrified I wasn't coming back and afraid of being alone. I asked what she was afraid of, and she said she didn't know. The only times she remained calm were when I loaded her into the van, put the Pomeranian in his riding seat (a dog bed fixed in the middle of the console between the front bucket seats), and drove her all over Dallas and Collin County. She would ask to go to Highland Park or to White Rock Lake or to McKinney, and she'd recognize everyplace we went. She appreciated the flowers and the various beautiful things as we drove by. I needed to keep her calm to maintain my sanity, so we took a drive to tire her out most afternoons after our home health paid her a visit. (I will tell you later how worthless our home health turned out to be and why I think that was the case . . . but at least the attendants changed her diaper and wiped her down with the bath wipes and Jergens lotion, and made sure she chose an outfit every morning.)
We are not talking about a stupid person, or even a "normal housewife." My mother was a college-educated psychology major who had managed a deli for almost ten years and had run her own housekeeping business for several years after that. She was clever, smart, resourceful, and sneaky. The sneaky and crafty parts never went away until almost the end. She is the one who taught me never to break things and to be a taker-carer-of everything material, but in the end she would hobble through the house picking up breakables and smashing them against the wall or tables in hopes that I would come running. She'd even do it when I was standing right there (which is why we don't have any drinking glasses now except the ones I kept over the fridge where she couldn't reach them or in the china cabinet.) I ceased being able to do any sort of Web design or computer consulting because I couldn't stay in here and concentrate. I could do my writing (I'm a novelist) only in bits and snatches of stolen time. (I scribbled a lot on the backs of envelopes and on Post-Its.)
The doctors had put her on strong antipsychotics and calm-down pills when she was in the hospital, so when I gave her the night-night meds and got her into bed around 9 or 10 at night, she would usually drop right off. She had to have her television on all the time, although she had stopped being able to follow or understand it at least a year before. She couldn't read and couldn't concentrate on anything. She couldn't do needlework or crocheting/knitting as she used to. She couldn't do crossword puzzles. She would constantly beg for food because she was so hungry, but nothing seemed to stick with her and she continued to lose weight and have a "failure to thrive" diagnosis, no matter what I cooked or baked or ordered through take-out. (Her appetite did not fail until the last month of her life.) She thought of me as her hot-and-cold running slave who had to be within shouting distance anytime she was awake, or else she would struggle to her feet (and usually fall down--more on that another day) and try to find me. I didn't know what to do for her, although I devoted myself and my husband (to a great extent) to taking care of her needs for that last year and a half.
Towards Thanksgiving 2015, my husband cracked and began shouting at her and at me, and things became so much more difficult for me because he wanted to handle it the way they do in the Marines. "Get better NOW! Do not forget things! Have a short-term memory! Let my wife rest! You are killing her. Leave her alone!" "Sir, yes, sir," was never forthcoming. She would scold him in return or tell him he was wrong about her. "Get her out of here so I can live," he started to say daily. I had to juggle the two of them every evening until she fell asleep. This was far harder on me. If you are the spouse, PLEASE don't do this to your wife or husband who is doing the best they can. I have an ulcer now and am just now getting de-stressed (a little) from all this.
You may be dealing with a similar situation. Has your parent become unable to care for herself or himself? Has he or she come to live with you and perhaps is spiraling down in this same way?
I started this blog so that I could share my experiences (informally) with others who are in this same sinking ship. I am not a pro and my advice is not medically sound or anything like that. I am just a daughter who tried her best to take care of her mother up until the end. My mother stepped across the Veil into Heaven (behind my back--but that's another blog post) the day after Christmas, 2015, so I am still trying to deal with the details of her estate (ha--she was penniless, yet creditors come daily out of the woodwork claiming she owed them and that I should DO SOMETHING NOW) and with my own grief. I had no life at all by mid-2015, and for some time my best friends had been my mother, my dog, and my husband. I loved my mother and had always tried to take care of her as best I could, ever since my father died when I was fifteen. So I'm on a journey of rebuilding and regrouping. If you are, too, maybe I could help you, or we could help one another down this tough, rocky road.
Bless you and bless your patient. Remember--they are not giving US a hard time, at least not on purpose and by choice. THEY are HAVING a hard time.
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