An end to the Mother-daughter Journey

Mother had been in Residential care three and a half months when I began to get regular phone calls from the staff regarding Mother. Mother was distressed, saying she couldn't breath! Mother was crying, saying she was dying. Each time I went in and stayed with Mother till she was settled and comfortable again. Sometimes she seemed vague, not very with it, and rambling. She had also taken to singing when she couldn't find words to talk. How clever of her to find a way, I thought.  Staff said Mother sometimes sang all night!  

Mother would rally after about 20 minutes, saying "I don't know where I have been or what I was saying, but I'm back now!" being her usual bright self again.  In retrospect "I'm back now" was a common statement after her mind returned from what I can only describe as 'dementia wanderings/vacancy'. They became more frequent. Often she didn't quiet remember who I was, but knew she knew me. Her long term memory was fine, just in the wrong time zone often! Mother would be so surprised to hear she was 90 and I was her daughter. Once I showed her her pure white hair in the mirror, then she believed me and was so amazed.

The disease is a whole body disease, which I lost sight of until Mother entered her final terminal stage. She had precious lucid moments which became fewer in time each day. Mother slept more, rambled more and regressed to little-girl more. Her great grand-daughters (5 & 7 years old) came and played their ukuleles to her while they sat on the floor by her bed and sang to her. Mother stopped her rambling to listen, then went peacefully to sleep. The girls felt proud they had sang to Great-grandma to comfort her enough to sleep. Other times when she cried out "mummy", I would gently respond "mummy's here" and she would settle.

It was a precious irreplaceable time; just to sit with her and hold her hand, feeling her presence even though she was past communicating. She still was Mother, her presence was part of my experience from birth, and so comforting. We would sing to her and pray with her.   Finally after ten days Mother passed peacefully in her sleep. My youngest brother had spent all afternoon sitting with her and I sat with her all evening, expecting to stay overnight again, when she quietly went. We had been expecting it for so long, it finally was a shock when it actually happened. I remembered when Mother told me she would be dancing when she turned 100, so at her funeral we had the song "we will dance"; a song about dancing in the streets of gold in heaven. It is reassuring that Mother had faith in Jesus as her Saviour. We expect to meet her again, as with faith in Jesus, death has lost its sting and there is hope.  May God Bless you Mother.

A wake-up call. Has the Carer failed?

Mother was fast approaching her 90th, a milestone that she so desired. Many times I had wondered if she would make it to 90 alive, but was determined to do all in my power to assist her achieve it. She continued to have 24 hour care from me.
Since she stopped walking, mother could not remember how to turn herself. She was on an air mattress in a hospital bed, but I found she still required 3-4 hourly 1/4 turns, side to side overnight. If she was turned all the way onto her side, she found her arthritis in her hip, knee and shoulders would become very uncomfortable under her weight, so 1/4 turns worked well, enough to lift her off her sacrum and assist bowel motility. If not turned like this I found Mother would wake crying out in pain from bowel gas build up through lack of motility. She would think she was in labour and be calling for me to "do something". After a short explanation and turn, the pain was relieved immediately and Mother would then go back to sleep after a while.
Alternatively, Mother would barely wake when turning her regularly 3-4 hourly, which was the best option. I set my phone alarm at first, but soon began waking automatically when a turn was due. I had also moved into a bedroom next door to Mother, so I could hear her if distressed.
By now Mother had forgotten how to ring her portable electronic bell. Occasionally I would wake with a fright as I heard the bell going repeatedly as if there was an emergency. When I got to Mother, she had discovered the button marked clearly "call bell" and pushed it to find out what it was for. Fortunately Mother took to calling "cueee, cueee!" when she forgot about the bell, so I removed it. After Mother's unique call, on arrival in answer, she would proudly informed me that was how her mother would call the children home when she was a girl. Mother found it empowering and preferred to use that way to call me now.

I thought I was coping, until one afternoon I began to feel very cold and shivery, then I had rigors overnight. My temperature was very high (40.2 C). Paracetamol would have minimal effect, easing the terrible headache only. I felt very sick and in a dilemma concerning Mother's care. I rang the government agency, who agreed to give me the second person required to assist with Mother twice a day so I could have a break from her main physical cares activity. I kept Mother in her bed, watching TV in her room, so I was near and was able to stay in bed, between getting Mothers meals and giving her turns 3-4 hourly.  No reason was found for the fever which settled with antibiotics from the Dr.  I found I was feeling drained and lacked energy afterwards, wishing Mother's respite time was sooner, but had planned it for a time I wanted to be there for my best friend having radiotherapy. A month later the side of my face became very swollen and painful. On x-ray an abscess had formed in my jaw at the base of a 3-year-previous Root Canal procedure; that had not gone to the tip of the root properly. The dilemma for me was that I could not afford the Dentist. 

Since caring for Mother, my financial situation had suffered, particularly after losing my job. I rang my eldest brother to discuss the situation and was told he would see to the dental bill, but I needed to consider that attending to Mother 24 hourly was now affecting my health and maybe it was time to consider putting Mother into Residential care!! The Government agency (NASC) also recommended I consider this option!

Mother was booked in for her usual respite care, which I had been hanging out for, but my health did not last that long so NASC put Mother into emergency respite a week early to relieve me. I went back on antibiotics, but was feeling very run down and vulnerable. The Residential home had a lovely room for Mother, but could not guarantee having a space for her if I took her home again after respite, to see if I could cope. I wanted her to go into that particular home as it was the only one that Mother had been in for respite care previously and came home in the same good condition as she had gone in.

I had tended to put off respite when I found Mother coming home worse off. The cost to me of the relief was having problems and the extra hard work to get back on top of them, once she returned, deteriorated.

I felt I had no choice but to be practical and see Mother settled into her nice room while it was available. I also felt a terrible failure not being able to last till Mother turned 90. I had fallen 3 weeks short to my frustration, but was in no condition, too exhausted, to fight it out.. I put Mother into Respite and went to keep my friend company, have daily walks together around Auckland and relax with some good books while looking after our health. We even had a meal in Simon Gault's restaurant at the 'Viaduct' as a special treat.

Mother enjoyed the change of surroundings and was settled when I left, knowing I was visiting my friend, whom she remembered from my childhood. While away NASC rang to tell me they had assessed Mother for permanent placement sooner than arranged. This meant I had to find a job because Carer DPB (my basic living expenses support while caring for Mother) would now stop. My stress level escalated to a higher level as a whole new ripple effect hit me with changing circumstances.

On returning home after the two week break, I knew caring for Mother had become too much for me and I had to be practical. It was heart wrenching. The grief was raw! I still believe that if more respite days were available, when a client became so dependent and was high need hospital level care, as Mother was, I would not have got so run down and exhausted. 28 days a year was not enough! With ambulance transfer costs, two weeks at a time was minimal, and twice a year was not enough. Every three/ four months would have been better. Then maybe I could have coped with Mother till death, as originally planned according to Mother's wish. Looking after Mother at home was still saving the Government money compared to in a Residential home.

Mother was acting like an abandoned baby every time I saw her, saying "I feel like I don't belong to anyone anymore", since realizing she needed to stay there, where she had fresh staff every shift looking after her. I gently explained that it had become too much for me to do alone sadly. Being an ex-nurse, she understood. Family support was not forthcoming, and no offers of help were received the whole four and a half years Mother was with me. Once in the Residential home, I still needed to go every day to ensure Mother's needs were met and all carers were aware of the standard of care expected to keep her healthy. 

I finally got a position at the local hospital as a casual reliever. Then I would call in to see Mother on my way home from work. She would look so proud seeing me arrive in my uniform and say she could "show off to the other residents now!". Mother seemed to settle as she got used to the carers and made new friends, becoming her usual giggly mischievous self with them. She turned 90 years old in her new room, enjoying family visits, amazed every time she was reminded that she was now 90. One day she said, "and when I turn 100, I'll show them, I'll be dancing out there!" (indicating the driveway in the garden outside her window).

Photo taken on Mum's 90th.