Carer Story: When Is 'Ageing In Place' No Longer Safe?

Supporting Others

OldYoungHandsKindly shared by Mary J 

My mother had been a widow for 15 years and, despite some concerns within the family, seemed to be looking after herself reasonably well. We didn't realise things weren't as good as they seemed, because Mother is a very private person, and would never tell anyone if she had any medical problems or was not coping. She had home help, but this person chose not to report the declining state of Mum's house or wellbeing, as doing so (we believe) would have deprived her of the presents Mum gave her, and the fact that she didn't actually have to do anything other than make conversation with Mum (who would not allow her to do any housework).

Health issues

Round about this time Mum started complaining of constant fog, and how difficult it was for her when driving. I suspected an eyesight problem and contacted her doctor, who said he couldn't help unless she approached him. Mum finally went to the local eye clinic and was prescribed new glasses, but was given an incorrect prescription, which only made the situation worse. After some firm talking from my brother she went back and was given a correct prescription.

Family worries

Then Mum fell down some steps and hurt her head. She walked the two kilometres to her doctor, had the wound cleaned and dressed, then walked home again! She would not come and stay with either myself or my brother. Over the next few weeks Mum continually talked about pain in her shoulder and back, so I asked the doctor to give her a proper examination (with no clothes on rather than feeling around the many layers of clothing she always wore).

Discoveries

What followed was horrifying and basically the beginning of the family taking control. Mum wore up to seven layers of clothing, as she was always cold, even in hot weather. Because of these layers the doctor had assumed she was carrying weight, but we discovered that Mum, who is 5'1", weighed just 38 kilos. Unbeknownst to us she had been living on biscuits, although her fridge and freezer were full of food. We had been giving her fresh vegetables from our garden, but they were never eaten. It was much easier to open a packet of biscuits than to cook a proper meal. Eventually Mum had to re-sit her driver's licence and have an eye test. Thankfully her licence was cancelled due to Mum's poor eyesight (we worried about her driving), but the loss had a severe psychological effect on Mum. The diagnosis was Age Related Macular Degeneration, and she was almost blind due to a cataract in one eye.

Painful fall

Mum's life changed forever when she tripped over a hose on the front lawn and broke her hip. She hadn't seen the hose, and blamed a tradesman for leaving it in her way. This blaming behaviour became common. Mum had surgery to repair the hip instead of a full hip replacement. This caused her a lot of pain. Mum was in hospital for four weeks, then transferred to another hospital for rehab before coming to live with us for a month. While at rehab she was assessed as being capable of taking care of herself, an outcome that rather stunned me. Earlier we had been advised to take photos of Mum's house and property as evidence of her diminished state, so I suggested the assessor view these as evidence of our concerns. She declined to do this and would not accept that Mum had a mental health problem.

New concerns

While Mum was with us we were able to observe her mental state. We knew she hoarded food, and on cleaning out her house we couldn't believe what we found. The house was in a shocking state (this is another story) but we ask why the home help never reported the smell of animal urine, rotting food in the fridge, and dust so thick it had to be scraped off furniture. Without going into too much detail, it took four of us three months of working each weekend to clean Mum's house. Both my brother and I have had nightmares about what we found in that house, and we have both had to have professional help to overcome some of the horrors of a house riddled with maggots, dead insects, dead flies, animal waste, and mountains of rubbish. We didn't realise what was happening as Mum rarely answered the door, and when family came to take her out she would always be waiting at the gate.

Not coping

After a month of Mum living with us, the situation became untenable due to Mum's mental state and the fact that it took two hours to get medication into her twice a day, and several hours to shower and dress her. Eventually we got help with the showering, which was a blessing. Mum was hoarding food in the bedroom, and this was the straw that broke the camel's back.

I found a rest home with a spare bed and we literally had to dump her there. This sounds cruel, but we were dealing with someone whose mental state left no option. Mum had been in the rest home for a fortnight when the manager contacted me saying they were having difficulty with her, as she was ‘non-compliant'. She would not wait for help with toileting or dressing and had another fall, popping the screws in her hip. The hospital did a patch-up job and discharged her five days later, as it had no spare beds. The result of this was that four days later Mum fell again after trying to shift an armchair using her hip.

Back to hospital she went.

Group meeting

This time I had had enough, and asked for a meeting with all those involved with Mum's care. We are grateful that this time everyone was caring and cooperative, as we achieved the desired outcome. Mother went to a wonderful private hospital where she got the most amazing care. But after three months I received a call saying that she was, in their words, ‘too good' for their level of care, as they specialised in people with dementia. We were asked to find an ordinary rest home for Mum. This threw the system into chaos, as people generally go from rest home to hospital, not the reverse. Mother also had an unpleasant open wound on the top of her head which she said the doctor had treated. In fact the doctor had just prescribed an ointment for what turned out to be an aggressive cancer. He also didn't give Mum a follow-up appointment, or ask her to remove her hat on subsequent visits.

Mum had had this wound for a year or more and it never seemed to get any better, so when she was in hospital the last time I organised for it to be looked at. The plastic surgeon said he had sent her an appointment to have it dealt with, but she hadn't turned up. When questioned about this she said she had no way of getting to the hospital. Her mental state prevented her from asking either my brother or myself to take her, even though we had offered on many occasions. The upshot is that she was treated in hospital, had two operations and skin grafts, and suffered horrendous pain, all unnecessary had she received appropriate treatment.

Financial abuse

Due to Mum's poor eyesight she was extremely vulnerable to being taken advantage of by dishonest people. My sister-in-law and I each witnessed this when accompanying Mum to the supermarket. At the checkout Mum was told the price of her purchases, and emptied a change purse onto the counter, telling the operator to take what she needed. The goods came to $3.95 and there was at least $12 in change; the operator took it all. When I stepped in, suggesting she return $8 to Mum, she became quite indignant. This sort of thing had probably been happening for some time, as Mum always tried to get the same checkout operator.

Another example is the man hired to help Mum with her garden. He pulled the tops off the weeds and covered them with earth and collected $10 an hour for this. The bank was a problem, too. Each time Mum accumulated $1000 in her cheque account the bank would agree to open a new account for her, so by the time I took over her finances she had seven savings accounts! She would go to the bank daily for a balance, so I assumed she was well known to the staff. It came as a surprise when I went to get her finances sorted out to learn that the staff didn't know her well. I have read the legislation, and even contributed to a consultation about elder abuse and neglect, so am very aware of both my mother's and my rights.

My husband and I also attended a great course hosted by our local Alzheimer's group to try and understand Mother's situation. Now that I have seen how she lived and was treated in her community by professional people, I feel that I am in a position to share our story, and hope that other families will not have loved ones suffer as Mum did. Just as importantly, I hope other families don't have to go through what we did.

Healthier and happier

Mum is now in a private rest home which provides the highest level of care. She is healthier and happier than she has been for many years. We love our Mother very much, and even though some days are difficult, we enjoy her company and feel that we can get on with our lives knowing she is eating properly, and living safely and comfortably.

More attention needed

Ours might seem a complicated story, but I feel that doctors (GPs in particular) need to be empowered to discreetly override a patient's wish for privacy and make meaningful contact with the family. People employed as home helpers should also have an obligation to report anything untoward. Working together can bring great results for all concerned. I know that education is the key to achieving a team approach to caring for older people. I guess the dilemma is how to do this effectively.

© Family Care NZ

Photo: Shutterstock.com, Kacso Sandor