“Help me, someone help me. Is there anyone there?”
The cry of anguish from a child lost in the dark who wants their mother? The nervous call of an injured person stuck on a cliff edge hoping to be rescued by the emergency services?
No, not either, this was the ceaseless call made by my mother day after day, night after night.
You would be forgiven for thinking she was somewhere hideous and shocking, in a living hell where no one came to see her and where she was abandoned; a near invalid her physical health had deteriorated to such an extent that she could no longer heave herself out of the armchair into the wheelchair that had become her only means of getting around her flat.
Her journey to this semi disabled state is another story of fear induced reluctance to have a hip operation that may have kept her mobile for the rest of her life, but the resultant lack of treatment meant she fell into the category of a ‘vulnerable adult’.
And with her failing physical health, her mental health was starting to decline and living on her own without any family nearby, the only visitors she had were carers who at best would do what was necessary in the 15 (very often no more than five) minute visit but more often than not, would give her a cup of tea (even if she didn’t want one), a handful of pills and put some cream on her delicate skin.
Her story is one of many hundred, probably thousands as we all live longer but our quality of life diminishes.
I was unsure about covering this topic but following a conversation with several friends who were facing the dilemma of how to care for an elderly lone parent, I thought I might share my own feelings of guilt, stress and anger; the common factors in this life equation and perhaps salve the conscience of those people who are going through tough times.
For it’s not just the elderly person who suffers, it is their family, friends and the people around them as our family structures disintegrate, brought about by the economic reality of sons and daughters finding a job and starting their own lives, very often miles away from their parents.
There are of course now plenty of available services that help family members look after their elderly relatives albeit remotely; online food shopping, mobile hairdressers and opticians, meals on wheels and a GP can usually organise the medical side of things like chiropodists. In fact the more you can arrange the better, although there is the added danger a person can become confused and concerned, and in some cases scared by a stranger coming to see them.
My father died in September 2012 and whilst my parents’ relationship was based on companionship at best, when my mother ended up being entirely on her own as well as being housebound, the stress soon took its toll.
By 2014 she was completely cut off from the outside world and the regular daily phone call soon increased to a few per day and then many more. A few extracts from my 2014 diary:
January 6: rang me 19 times today while I was out, a couple of vague senseless messages left on answer phone. Social worker says she does not meet criteria required to go into a care home. Whilst she is still able to cope in her own home and she has care workers going in, there is no hope of finding a residential place for her.
January 10: she rang several times, she has no concept of time and forgets that she rang me just minutes earlier.
January 12: terrible day, lots of hysteria and sobbing and anger. She is so depressed but refuses to discuss going into a care home.
January 13: had odd call this evening, she asked me what the day and date was then begged me not to tell anyone she had been so silly.
January 14: usual calls making me feel so guilty.
January 15: she rang 7 times today and left two messages pleading for me to go round and “have a cup of tea”. She no longer understands how far away I live.
January 17: visited her, she said she’d been woken at 6.30am by someone ringing the doorbell.
January 20: she rang me asking me to order some ice cream wafers on her next Tesco order. All she eats now is toast and ice cream wafers.
January 21: she rang me 3 times in space of 5 minutes asking the same question – who cleans the flat?
January 22: went over and arranged for her local bank manager to visit so I can have authority over her bank account. She always puts on an act when people visit, as if nothing is wrong and she’s perfectly happy.
January 27: she rang several times, obviously lonely.
February 2: she rang in tears saying her knee hurt and asked me if she should take paracetamol. Trouble is she can’t remember if she’s already taken some and forgets to take them regularly to keep the pain at bay. She will not accept she needs to build up the pain relief.
February 3: she rang, is worried about getting breast cancer.
February 7: I had to rush over there she was in a terrible state.
February 8: several phone calls, she’s getting het up about the carers and what they should be doing.
February 15: Went to see her, she wasn’t dressed and was in chair with nothing on, what on earth do the carers do?
February 20: she has DVT and had to go to hospital for blood test. She was in a terrible state.
March 3: she rang 12+ times today mostly about the cleaner.
March 5: she rang 14 times today.
March 14: long telephone conversation with social worker who was at flat with mum. It’s so desperately sad, she feels so alone and afraid. I really feel for her but she will not accept there is a problem.
March 16: she rang to say the carer had left her bedroom window open and she was freezing.
March 20: the social worker rang, a plan has been agreed to help improve things for her but of course mum doesn’t like any of it.
March 25: she rang at 6am in a terrible state. They’ve delivered a special reclining chair that she hates, it’s meant to be used as a bed as well as a chair so she can fall asleep at night. She was completely hysterical about it. She had calmed down by the evening.
March 27: repeat performance, mixture of desperate hysterical calls with her crying her eyes out to saying she should go into a home to asking me to call out the doctor. It’s relentless. She doesn’t understand what the incontinence pads are for. It’s as if she lost all sense of reasoning. Social worker called and told her she has to use the chair and let them use the hoist to lift her up.
March 31: After yesterday’s phone call from a neighbour who had to help her, another neighbour rang today, they had heard her calling for help and found her on the floor. The social worker set things up including someone to stay the night for next two nights. Mum was inconsolable and kept telling me she wants to end it all.
April 6: went to see her, she was in the hospital bed they’ve put in her room. It all looked so sad and final. It’s as though her whole body has completely seized up.
April 8: when I got back from shopping there was a message on the phone “help me, help me”. I rang her back, the ambulance were there. Seems she was screaming out there was a man’s body on the floor and the neighbour heard. She was taken to hospital. I went straight over. She was very upset and wanted to go home, she wanted to “call it a day”.
April 11: there was talk of releasing her back home! The social worker talked about respite care but seems they won’t take her because of possible dementia so it’s progressed to a place in a residential care home. Things are suddenly moving very quickly.
April 15: she’s back home.
April 16: another bad day, the care agency have complained about what they have to do, they said they were “pissed off”.
April 19: I arrived at the flat and could hear her shouting “help me, someone help me”. She’s not eating or drinking and keeps saying she wants to die.
April 21: call from hospital, she was admitted in the early hours of today, seems neighbour called the ambulance.
April 24: it’s her birthday. I visited her in hospital, she’s so unhappy.
April 25: call from social worker, they have a place for her at a care home local to me but I won’t believe it til it happens.
April 29: phone call from hospital, she’s on her way! I had to rush over to the home to sign paperwork.
May 2: another visit, another session of her saying she wants to end it all and once more I left her crying her eyes out.
May 13: visited, they said she’d had a good morning but when I walked in she started crying. She’s saying some odd things, it’s like she doesn’t realise she’s in a home, she’s blocking it out. She keeps asking me why I’ve done this to her.
May 16: she went for the jugular today, when I walked in she said “you can take that grin off your face” and said if my sister was there she’d know what to do. She said some really horrid things and I’m afraid I lost my temper.
May 18: I took her TV over but she was in a horrid mood and attacked me again with “I hope you’re happy now” and “why did you do this to me?” just on and on. I walked out.
From the day she moved into the care home I visited virtually every day; I dreaded going, anticipating the verbal abuse, the anger, the upset, but after a few weeks she became less hateful and with the continuing good care she received from the staff her health soon improved and whilst she has never walked again, after around six months she began to settle into a routine and having initially refused to leave the bedroom, she started to go down into the lounge.
Now just over two years later she gets on well with the other residents and on the whole, the staff.
The pressure on me has lifted and the life she was living is now a distant memory. She blocks out a lot of what happened and continues to live in her own world but if that is her coping mechanism then so be it.
Reading my diaries I realise it was not just my mother who was in a dark place but also me, and the stress of dealing with what was going on was without doubt damaging my health and putting a burden on my young sons. There was also the strain that was being placed on the neighbours who understandably felt more than a little bit angry. Finally there was the burden being placed on the emergency services; the police, the ambulance, the GP and the hospital.
So what is the answer? I honestly don’t know but for anyone else who is going through the immense guilt and distress of dealing with an aging relative, rest assured you are not alone and all I can say is when it gets too much, find someone to talk to.
You can always drop me a line.