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.

Adjusting to Change Stage 4

It has been nice to be home as a full-time carer with Mother. The sad part, of course, is witnessing the slow gradual deterioration that occasional takes a step down. This happened over the Summer period. I noticed Mother relying on her arms more as she walked, and she became heavier to manage getting in and out of her chair or bed as moving became more difficult for her. I was worried about the heat wave we were having, and blamed that. I was so focused on Mother's heart issues that I lost sight of her Lewy Body Disease.

As time progressed, one morning, Mother lost the ability to stand! She went to Hospital for investigations, and the outcome was Lewy Body Disease, with messages for 'standing' blocked. There were more changes in her brain scan also, producing some Stroke symptoms. Loss of mobility had come on gradually, but wasn't obvious until standing ability just stopped one day.  Bowels and bladder were also affected, so caring for Mother was now like for a 'Spinal' person. I feared managing Mother at home now she was so heavy, as I didn't want to wreak my back. I even went as far as putting a room on hold in a Residential Home for Mother! 

During the time Mother was in Hospital, the OT and Physio persons were great. They introduced Mother and me to a 'Standing Hoist' which supported Mother's back and knees as she was gently raised on to her feet for transferring from bed to chair etc. I became involved in managing Mother's cares and confidence in managing her grew as I realized I had to change my thinking and be more realistic with Mother's new routine.

Eventually I realized Mother would still be better looked after at home, and discussion with her Consultant confirmed my thinking. The Hospital OT arranged for a hoist to be delivered Home, after inspecting Mother's room for the space required for it's use. Mother required Ambulance transfer home and a new phase in caring for her began.

Mother now requires two persons for her Hoist transfers (this is a mandatory safety requirement). NASC hours for a support carer to assist me with Mother's care haven't changed. Mother has all her cares on her bed now before we get her up with the hoist into her chair for the day. She feels safe at home and I'm glad to have over-come the mental hurdle to cope. Family support remains distant and unchanged.

Answers Found

Mother often would ask “why?’ repeatedly when she became distressed over the stupidity of Politics, seeing disasters and suffering, observing wars, famine, corruption and poverty on TV. I would be at a loss to explain it myself. We both had faith in God, but He represented love. How could this be happening? It didn't seem fair.

I looked at my own life since taking on the care of Mother. I admit there have been difficult times as I had to adjust to suddenly stopping work, when enjoying my job and not intending or feeling ready to stop yet. The sudden change of plans and removal of my ‘independence’ as I became tied to 24 hour care-giving left me feeling lost. What was happening to my life?

Mother may die soon. Facing her dying was scary. How would this journey end?  Life seemed out of control. Sometimes, when tired from disturbed nights and not being able to switch off in case needed, I would feel sorry for myself and have to work on my attitude. Life had thrown me a curve ball and it didn't seem fair.

Other times during my life I had observed others seem to have really great lives, the sort I could only dream about. Others have got away with corruption, evil and oppression. Death has always been an enemy, to be feared. It was depressing and I didn’t feel comfortable with ‘life’ in a world that is so unfair. 

Then one evening I was watching a new channel on TV (‘FirstLight’) and found answers so simple yet revealing a deep inner truth to me. It excites me, so I just have to share it here. 

As a Christian, I always knew the bible promises one day Jesus will come again. Silly how I never connected before that when Jesus comes, He will put things right! Wars, poverty, injustice, pain, illness, death, loss, grief, hunger, suffering, loneliness, rejection, hate, inequality, aging, strife, oppression, lies, violence, stigmatization, corruption, will all be dealt with and put right!  What a wonderful revelation. Thank you 'FirstLight'.

One day all that is unfair in life will be put away and Jesus will put it right. What a hope to look forward to. At death Christians like Mother can say “goodbye until morning”. It’s not goodbye forever. Christ shall come again and we shall all be raised. What a reunion! When I see all that is unfair, I know this world is not my final home. That is my answer to unfairness in life here ☺

Adjusting to Change Stage 3

Mother was stable and manageable. I felt we were in a good routine and I knew her well enough to nip any infections in the bud. The regular assisting Carers were trained enough by now to know Mother's routine and standard of care expected by me. I even found myself thinking "I may be able to do more hours at work and save for my son's graduation in the USA". Well that thought went out the window fast when everything changed one day.

May 21st 2012; Mother was happily sitting at the kitchen table (on her walker) after assisted shower and breakfast. I tidied her hair that had just been washed when Mother began to act uncomfortable. She said she wanted to lay down, so I quickly pushed her on her walker to her room to lay her on her lazy-boy chair. Just as we got to the chair, Mother suddenly collapsed (like she did before at the hair-dressers). I was all alone and Mother looked dead! With an adrenaline rush of strength, freaking out, I managed to lift her 80kg body off the walker seat and lay her on the floor, on her side as I knew from experience that she may vomit when (hopefully) she came round. I pressed her emergency alarm and then covered Mother with a warm blanket and supported her with cushions. The St John Ambulance personal spoke to me through her alarm bedside speaker and reassuringly said the ambulance was on its way. I could see Mother's pulse had returned and she was breathing again. As the Ambulance officers were lifting Mother onto the stretcher, Mother woke and said amazed "Oh, I'm on the floor!". She then vomited every where and was taken off to the Emergency Department at our local hospital. I followed with a change of clothes etc.

The outcome was that Mother is now at a stage where her Aortic Stenosis is now severe enough to be causing collapses more frequently, she is damaging her heart each time as with a heart attack, and she will take longer to get over it (if she does). Her likely-hood of sudden death was now within two years. I knew this day was coming, but was stunned when it did. Mother spent 5 hours in ED before she was well enough to take home. We went home, knowing that returning to ED with collapse was not an option in future, as Mother was now at a terminal stage of her disease processes. A referral went to the Emergency Response Team and Palliative Care for all the support I needed to look after Mother at home.  She spent most of the next 5 days sleeping a lot. She was tired and weak, just like someone who had had a large coronary. I spent my time dealing with visits from Ministry of Health (NASC), Occupational Therapist, Social worker, Doctors, Nurses and the Care Agency arranging a smooth transition of care for Mother's needs.

Mother has recovered enough now to walk to the lounge some days, but most of the time we use a wheel-chair to move her around the house. Her day is spent lounging in a lazy-boy chair (comfortable enough to sleep in), either in her room or the lounge. She has a Roho cushion on her chair for pressure relief as she is prone to pressure points. Mother now has an electric hospital bed with a pressure relief air mattress. She loves her new bed with foot and head elevation at the touch of a button. Raising and lowering it assists her to get out or protects our backs as we tend to Mother's cares including bed bath. Showering is only done when Mother feels up to one, and two of us are present to work as a team in military precision to minimize time Mother is up. The shower can bring on a 'funny head' and near collapse if any longer. There have been a few near misses as Mother's unpredictable fluctuations in Blood Pressure are triggered by her Aortic Stenosis. The other symptom she gets that can also come on suddenly is Shortness of breath and a  wheeze ( has been called Cardiac Asthma) from Pulmonary Oedema. Palliative Care are only a phone-call away if needed. Mother's ability to do simple tasks requires supervision and guidance in most activities now. I have a portable 'door bell' which I keep near so she can press the button at her end when she needs me. That has assisted me to sleep a little better at night.

I know I have taken on Mother's care for such a time as this and have taken 'special leave' (unpaid) from my job to look after her. Mother feels safe with me around, and is so happy I am here all the time now. She has been openly discussing death and Pastor is visiting regularly. Mother has reaffirmed her faith in Jesus, so we are assisting her to prepare for her future. More next time.