A Working Carer's transition from employment to a benefit: Part 2

I have been looking after Mother full time since her heart reached a critical point with poor prognosis. It has been a year since I made the decision to take unpaid leave from my job and during that year Mother has continued her slow decline. She is totally dependent now, unable to stand, or change position in bed. A 'Standing Hoist' is assists me to stand her for transferring to a chair. Mother can feed her self, but needs supervision due to intermittent swallowing difficulties.

It is a privilege to be there for her and I don't regret the decision at all. Mother requires Hospital level care and if she went into a Residential Home for care, as she is entitled to, it would be much more expensive for the Government. Residential Homes are contracted by our Government funded District Health Boards to provide aged care. We have paid our taxes to cover for this, so I am not ashamed to be on a Benefit to care for Mother. I am actually saving them money by looking after her.

My 12 months leave without pay finally came to an end and I hoped for an extension, as my employer had been informed I had requested 2 years and I was under the understanding that if I took 1 year I could extend it if needed. I had heard of another taking 2 years of with a child with cancer. Someone had been employed on a short term contract to replace me and I had hoped they may want to extend their time, before moving on. Unfortunately employers these days are more used to the 12 month parental leave contracts, and do not consider the mature experienced Baby-Boomer end of the work-force that have elderly parents that may need care. Funny that, how managers are one ended in how they look at an issue.

It has been an adjustment to survive on a Carer's Benefit. Government Benefits are income assessed and designed to cover basic welfare e.g. Food & shelter, just enough to survive. I don't begrudge this and am thankful to be able to have the choice to look after Mother full time. Surviving is a challenge though. It is all very well to have food and shelter, but also can be very demoralizing because life can become very restricted due to considering the cost before doing anything.

My surprise for surviving on the benefit is to find my creativity resurfacing. When the going gets tough, something within me rises up to fight back. Hence we enjoying eating home grown carrots, cabbages, broad beans, celery and silver beet from my garden. I have been making my own bread daily using a 'George Foreman' Bread-maker and enjoy the creative home-made production range from kibbled wheat, wholemeal to Mum's favorite of French bread with wheat germ and rolled oats added. Mum's wise saying many years ago, when talking about surviving the Depression years, was "you'll never go hungry if you have a sack of spuds and a bag of flour in the house". I have found more than one use for the coffee percolator also. Using green tea with lemon to make tea, adding a 'Shot' of lemon, ginger & manuka honey to it and a dash of tropical breakfast juice makes a large jug of tea that can be kept fresh and hot for hours without the problem of bitter after taste that coffee or tea gets when stewed. Its very handy to grab a cup when busy. I have found a way to cut my own hair also using layers and electric clippers with different sized combs. No-one would guess I hadn't been to the hair-dresser as usual, and I saved the cost! Well life on a tight budget for a season is teaching me lessons I wouldn't have learned before. It is scary but fun having the challenge to use resources I would never have considered before.

Adjusting to Change: Non-mobile Stage with LBD

Over the last summer months, I noticed Mother appeared to be leaning more heavily on her arms as she used her walker and becoming more doubled over. She was becoming slower and slower as she walked. I couldn't understand why she was so bent over and reasoned; that it was hot,  that she was feeling the heat and not coping with it. I kept the wheel-chair close for when she decided she needed to sit before her legs gave out. Then one morning Mother just couldn't stand, no matter how much she tried with our help (that is the support carer and myself), she could not lift her seat off the bed more than 1 cm! In retrospect, Mother would always say her "bottom was getting heavier". Now I know what she was trying to say.

I rang the Dr who came and saw Mother, then sent her to hospital for investigations. Mother could move her legs normally in bed and believed she could stand, but all attempts to move from sitting position to standing failed, even with expert assistance! Nothing could explain it except blocked messages in her 'planning part' of her brain through Lewy Body Disease. Mother's brain had lost it's ability to produce the complex messages that directed her body through the process of standing. She could move her legs in bed, but when assisting to lift Mother onto her feet, they would become limp and just hang there. Mother had no idea of where her legs were placed or how to move them! The physio at the hospital told me she had seen this pattern before in Lewy Body Disease. It had shown the beginnings in a similar way to Mother with that person leaning heavily on their arms to walk and doubled over. It was not what I was expecting to happen at all. I didn't know mobility could just stop overnight like this. Mother also showed 'spinal' or blocked message symptoms of Urinary retention with over flow and signs of reduced bowel mobility.

As long as Mother could stand, not even walk, but stand, I felt managing her care was fine. I could transfer Mother to her wheelchair, or the shower bench or toilet without too much effort. But now Mother having lost her ability to Stand had huge implications for me. How was I going to manage?  I found that out while Mother was in hospital. She was introduced to a Standing-Hoist to transfer her from bed to chair etc with the aid of two persons. While in hospital, Mother also showed increased short-term memory loss and some swallowing difficulties. She also had lots of the typical Lewy Body hallucinations, particularly at night as soon as the shadows began to fall.

Insertion of an IDC (urinary catheter) had lead to a Hospital acquired urinary infection.  Interestingly Antibiotics for it took most of the LBD hallucinations away. They are infrequent now. Catheter hygiene care is important for prevention of infection, particularly when contaminated with bowel movements regularly. I found 7-10 ml of antibacterial liquid soap added  to her wash water has been effective in keeping her bug free. Disposable 'Baby Wipes' are used for cleaning up after Bowel movements and for washing the lower region, including the catheter with the prepared wash water has been very convenient and successful. Signs of the residual Antibiotic Resistant Pseudomonas from along the catheter/urethral tract leaking discharge onto her continence product have now gone.

 The short term memory loss raised the issue of safety for me because mother doesn't remember she can't stand. I use a sensor mat beside her bed or chair, which will alert me as soon as a foot touches the floor and a potential fall may be avoided. It reassures me and I sleep better at night as a result. Mother also pushes the 'test' button (on the sensor mat lead) to call me, which works well, with Mother confusing it for a call bell. One positive about her short-term memory loss is that she doesn't dwell on recent health losses as she doesn't remember. If its not happening now, it didn't exist. Once pain is relieved, "she never had it" when questioned. Once the hoist has disappeared, Mother believes she stood to transfer to the wheel-chair or walked to the lounge herself!

We have settled into a new routine at home now. Mother stays in bed longer in the mornings, having breakfast in bed, then laying back comfortable to enjoy the TV News and travel programs.. During this time her bowels will move just before her morning bed-bath and getting dressed and up with assistance of a hoist, the support Carer and me. Mother then comes to the lounge via wheel-chair, followed by the hoist to transfer her again to her electric Lazy Boy chair. She then has lunch watching the Midday News and spends her afternoon enjoying her favorite magazines and TV programs. She rarely gets visitors. The support carers that assist me twice a day are her 'visitors' she enjoys a chat with. She follows The Royal Family news with interest and joy.

Mother's very easily distracted and has difficulty following the story line when reading or watching TV. She reads much less now. I tape her favorite TV programs which enables her to follow them easier, if I fast forward over the advertisements for her.

Mother doesn't move much. She just lays there, semi-recumbent day and night. She cannot turn herself, so pressure area care is very important. Pressure ulcers have been avoided by vigilant skin care and the use of 'ROHO' cushions. Mother sits on one during the day and her heels rest on another. She has an electric pressure relief air mattress on her bed and still requires a 'ROHO' cushion under her heels/feet. Mother's chair is adjusted from head up for meals to laying back intermittently to re-disperse her weight for pressure relief when in her chair. Once in bed in the evening, Mother is settled on her side and turned again before I go to bed. I turn her again in the middle of the night and again very early in the morning in a 3-4 hourly routine. The turns are a 1/4 turn to relieve her sacrum area overnight, as she is on it all day in her chair. She doesn't cope with a side turn, as her arthritic knees, shoulders and hips become painful in a very short time. She finds a 1/4 turn very comfortable and sleeps well in this position. Mother also needs the turns to prevent gas pains from a sluggish bowel through lack of mobility. She would wake up crying in pain on nights she decided she didn't want turning, so ended up being turned after all. The regular turns have assisted bowel motility and regular daily bowel movements result.  She has avoided pressure ulcers so far. As Mother is very heavy, I use a 'slippery' sliding sheet for turning her.  When the support carer is present, we use it to lift Mother up the bed for re-positioning. I wouldn't be able to manage without it. We are coping well so far :)