I have been responsible for caring for Mother since she came to live with me. It became more difficult when she lost the ability to walk. I needed to turn her 3 hourly as she was unable to turn otherwise and was very high-risk for pressure sores, which have been successfully avoided to date. Mother is in good health apart from her deteriorating memory, movement and heart conditions. She has made 90 yrs old! But not without a cost; to my health; I'm sorry to say the journey has taken a deviation I did not want to or had envisaged happening... I was walking by faith, trusting in God after-all!
Mother, as I have spoken about in previous detail, had become very heavy to manage over the 4 plus years I have looked after her. The effect on my health, apart from exhaustion had been swollen joints from the strain of turning her overnight. Then I began to get rigors, with temperatures 40.2 degrees C. The Government NASC and carer support agency were excellent in providing a second person to take my place to wash, dress and get Mother up daily, and again to return her to bed at night, temporarily. I still had to drag myself out off bed to cook and provide her meals, and also to turn her overnight despite how ill I felt. I eventually came right after a week of misery. It really knocked me psychologically and emotionally as I began to wonder if I could last the distance, fearing failure in my hopes to care for her till the end.
Mother also had began 'sun-downing' which may be explained as possibly a combination of poor brain perfusion and tiredness, along with time perception becoming so slow it became disorientating for her. From about 3:30 pm onward Mother would become restless and agitated, but not knowing why. Whether she was in bed or up in her chair didn't seem to make any difference. Company, distractions, reassurance and cuddles didn't make any difference. I felt I was failing in my mission of keeping her happy and content. Some days she seemed to look at me as 'the enemy' which I believe symbolized an outlet for her grief at not being able "to do things", or be independent as she desired. She began to hate the hoist and what it represented gave her more reason to grieve. She did not believe any explanation as her memory was not able to verify the fact she could no-longer walk. It was heart breaking, and to become the brunt of her grief was emotionally very hard to bear. I pressed into God, prayed and resolved to carry on. The family isolation only served to make it a more heavier burden and so isolating. Weekly visits from a dear friend was like a breath of fresh air; my only social contact on a regular basis. Mother and I had become 'prisoners-at-home'.
About a month later, while my dear friend was overseas, I found my jaw extremely painful with an abscess. It happened a week before Mother was booked into Respite relief, which I was hanging out for. I had planned it to co-inside with a time I had committed to supporting my best friend in treatment for a brain tumor. What a dilemma! Suddenly my needs were conflicting with Mothers. An X-ray confirmed an abscess in a root-canal that had been done incompletely way back in 2011! (The fill had stopped short of the end of one root, which was where the abscess formed). The easy answer would have been to have the tooth pulled, but I needed my teeth, so chose to have the root canal re-done after a period of antibiotics. I worried I couldn't afford the dental bill. I rang around family to inform of my and Mother's happenings. The outcome was that they considered my looking after Mother was affecting my health, so I was encouraged to put Mother into Respite a week earlier (Govt. NASC emergency respite relief) and to consider having her assessed while in, for permanent placement. "There was no guarantee of a placement if I didn't leave her there, as bed availability was in demand", I was told by the authorities. Everything happened so fast and I was in no condition to resist. They thought they were helping me, but it only opened a can of worms as far as the implications for me went. I felt circumstances took everything out of my hands.
Suddenly I was faced with
- dealing with Mother, preparing her clothes, labeling all etc for suddenly going into permanent care,
- dealing with sorting out all her financial affairs regarding funding application and financial assessment for this, which involved a thorough assessment of where her money had gone from historical assets.
- dealing with the multiple agencies and equipment suppliers currently involved,
- preparing for the changes financially for me , with the carer-support funding stopping
- dealing with the need to re-enter the work-force as soon as possible, and the stress of this
- dealing with 40 minutes of drilling at the dentist,weekly for three weeks until my abscess was cleared and tooth root re-filled,
- Supporting my friend, which was very important to me
- feeling emotionally, mentally and physically drained concerning Mother.
- feeling a failure that I had abandoned Mother and let her down in my promise to look after her till death.
- feeling the family isolation more acutely and worse than ever.
Since Mother has been in Residential care, the grief has been intense. She wants or expects to come home every time she sees me. She feels abandoned and doesn't remember explanations. She told me she "doesn't feel like she belongs to anyone anymore". I just want to gather her up and bring her home. The financial stress continues. Although told I am accepted back into the casual work-force, I have been waiting three weeks for the CEO to sign the contract! Why the delay when the Hospital is short-staffed? Mean-time I have been living on fruit and veg from my garden and lost 5 kg in weight. I have since turned 65 yrs old - retirement age in NZ and feel robbed of preparation time, while life on hold to look after Mother, now am feeling discarded. The worst part is being alone at home. The first time I have lived alone since leaving home. The cost on relationships has been the greatest, contrary to my belief of encouraging multi-generational family interactions as being valuable and most precious experiences for all ages. What is my purpose now I ask?
