A dreaded few hours one morning

Mother's dementia has been reasonably stable and the focus has been on managing her heart failure which fluctuates daily. I found myself thinking Mother's physical problems were worse than her dementia. The reality that I cannot take anything for granted was brought home to me one morning with a sharp wake-up.

One day last week, Mother was up at 5am and was her usual bright self when I assisted her. Mother said she had been "travelling all over the place" (in her dreams) chuckling as she walked to the toilet, then on return was resettled, happy to have more sleep. Mother woke three hours later, and after her support carer (m) arrived to assist with showering her, Mother worriedly confided that she didn't know who she was. Telling (m) that she knew she lived with people who cared for her, but didn't know who they were. On questioning, Mother knew she had two daughters, but didn't know where they were. She did not recognise me when (m) came and got me.

I was shocked, but calmly sat and listened, filling in the missing bits as Mother talked. She eventually recognised her head was all mixed up and as the morning went on, Mother's memory gradually cleared enough to recognise I was her daughter by lunch time. I guess this is the first of more episodes to come as her dementia deteriorates. I shared this event with another friend whose mother had Alzheimer's. She said that they prayed their mother would never forget who they were, and their prayers were answered. Although deteriorating, till death a year ago, my friend said her mother always remembered her children. I resolved to pray and hope for the same blessing.

Since that episode, it was a joy to walk in one morning to be greeted by Mother as normal. Then she said "you are my lovely baby daughter. Do you remember when you were a baby and we had an outside toilet. Father would hit you hard for wetting your naps?" I said "how could I? If I was in naps, I was too young! I'm glad I don't remember that!" We both laughed.

"I'm Me and I'm Back!" Mother announced this morning.

The last two weeks have involved watching Mother go through an increase in heart failure with all the tiredness, lack of appetite, clamminess, shortness of breath and times of near collapse indicating she was in a very intrepid stage of health. Intense monitoring, high protein diet and medical management was necessary in hopes to prevent progression into the feared Pulmonary Oedema or Cardiac Ischaemia effects that could be fatal. Mother has also been confused at night and on waking, often not her usual morning bright self and her memory had deteriorated for simple daily repetitive tasks she usually did automatically. This required an alertness to the extra help she needed, as well as regular checking for when up confused at night and had become routine. In the back of my mind, her Lewy Body Dementia symptoms pattern was often over a fortnight, but her physical symptoms had dominated. Her sudden change in hearing-processing effects gave a clue, so I wondered. I met with Mother's Dr and he confirmed that her health has progressed to a stage of symptom management only. Her respiratory centre, we know had deteriorated and was a indication of the condition of her whole body systems. He also reminded me that her dementia is a disease process that does deteriorate inspite of all the preventative measures we like to initiate. We decided to commence an antibiotic to cover any unknown mild infection (i.e. sinus or UTI) that Mother has not been able to tell us about. It was guess work, but worth a try as that could explain an increase in confusion. The Digoxin was stopped also due to side-effects and gradual deteriorating renal function. We both agreed that Quality of Life was our aim concerning Mother. I felt so sad as the impact of Mother's mortality and life-stage hit me again. Last night I settled Mother as usual and prayed with her asking Jesus to keep the confusion away. Praying is something Mother had done in her working life as a nurse. I remember her telling me, when she worked in a geriatric ward, that she sensed some of the elderly were afraid to go to sleep at night incase they never woke. So she, along with other staff members, always prayed with them on settling. I thought that was a lovely way to comfort the aged in their need and thought Mother deserved the same comfort, so praying had become part of her settling routine; shared between a Christian care-giver, my husband and myself. Mother slept all night, and woke 5am still dry, and alert! I commented on this as I helped her get out of bed. Mother looked at me and announced confidently "I'm Me again and I'm back". I pray she stays 'back' with us, realising that some of her LBD pattern had probably just happened again, hidden by her medical issues. At breakfast Mother mentioned casually and matter-of-factly, that she had been 'talking with her bridesmaid' who had been visiting her (in the night). My husband and I looked t each other and smiled. We were back to 'normal' of sorts. Her life has been on a complex roller-coaster ride of symptoms, that I hope will settle for a while, but realise there are no promises.