It’s been a long journey since mum broke her hip nearly eighteen months ago, and was then diagnosed with Vascular Dementia earlier this year. At one time I used to visit once a week and we would generally go for a pub lunch or afternoon tea, now I visit twice a week and have trouble finding things to talk about. As time goes on she has less and less interest in the outside world, friends and family and no longer follows her beloved soaps on the telly. Her frailty and disability mean that leaving the flat involves a great deal of effort. An able bodied person would feel tired contemplating the difficulty of getting her ouside and into the car.
Initially Careline, with its accompanying red buttoned bracelet was a safety back up; now it is pressed with increasing regularity and ambulances arrive and paramedics pick mum up from the floor when she has fallen and persuade her to go to hospital when they think it necessary. There are the other occasions when she summons help but can’t hear the responder at the other end, so of course they send in the emergency services as a precaution – what mum refers to as the army and the navy arriving. We’ve given up dashing over when Careline phone telling us that mum has been buzzing: we are aware of our physical and mental weaknesses and the need to try to conserve our strength. As she still refuses to move to residential care, we remain on alert, anxious and worried what each day will bring.
When we were visiting every day after mum’s discharge from hospital with a repaired hip, we soon realised that we couldn’t carry on indefinitely. The almost daily hospital visits, plus more than three weeks of going to her home every day (in my case remaining until she was safely in bed at night) began to take their toll. So we scaled back, in my case to twice a week as I have already mentioned.
I could feel myself becoming tired, ratty, irritable and tearful, but believed I needed to do my best for my mother. Whenever I felt exhausted it somehow never seemed like exhaustion when I moved on to the next level of even greater fatigue. For some months I (who rarely have trouble sleeping) have been suffering from various degrees of insomnia.
I gleefully pounced on the opportunity of taking a course of stress management workshops provided by my local Carers organisation. Believe me it is easy to do the theory, but trying to practise positive thinking, flip the negativity and fit in relaxing meditations is not as easy as you want it to be. We all bonded well and it was therapeutic to discuss our caring roles and their challenges with others in a similar position.
I also attended dementia awareness workshops, which will lead to another regular support group. In addition I have been seeing a counsellor for about a year and trying to work through problems that go back to my childhood and are now compounded with everything else happening in my life.
The final straw was when I needed to visit my GP at the weekend and the waterworks welled up again. She insisted on anti-depressants and I didn’t argue. If they take the edge off the anxiety and the stress I don’t care. This hamster is unable to climb out of her wheel at present, so she keeps whirring round and round and swallows her pills like the good little girl mummy taught her to be.
It’s been a difficult time. When visiting mum a few weeks ago she was having trouble getting out of her chair; I put this down to a mobility problem and helped her up. The following day I had a phone call from Careline (the company that responds to her calls for help when she presses the button on her bracelet) telling me that she was again unable to get out of her chair. Knowing her afternoon carer would be there before me I let it go and hoped for the best. A little later my sister phoned to say that mum had pressed several times (in fact about 12 in total) and that I should go over. When I arrived she was in bed and four attempts at standing up proved futile, so I phoned for an ambulance. She was duly taken to A&E, diagnosed with a UTI and sent home with antibiotics.72 hours later I had a phone call from a paramedic who was with mum, as she had again pressed for help numerous times. She was persuaded to go into hospital, diagnosed with a chest infection, and remained there for three days.
From our point of view, which was endorsed by her carers and other health care professionals, she really needed to be in a care home. My sister tried to persuade her of the benefits of one we had found not far from where she lives, and that would also allow her to take her cat, her ‘baby’. Still she dug in her heels and insisted she wanted to go home, so back home we went.I organised another assessment with her social worker for the following Monday and in spite of everything he pronounced that she still had capacity and could not be forced to go anywhere she didn’t want to go to. So the two of us continued to operate on high alert with our anxiety and stress levels building, wondering when the next fall or hospital admission would occur.
We didn’t have long to wait before the buzzer was pressed more and more frequently and she was again admitted and kept in for two nights. Her discharge home was not an easy one. She was delivered by patient transport, which was actually a man driving a minibus, and not a paramedic or somebody with any kind of medical training. She beckoned to me with a face like thunder and screamed that she had been waiting since 9 o’clock that morning – it was now about 2pm. I had to help her down to her waiting Zimmer frame, but she was not strong enough to use it to walk into the block and her own flat, so I had to dash back in again for her wheelchair. When I asked the driver if he could just make sure that she was steady until I got back, I was informed by one of the other passengers that he was ‘only the driver’.
By 4am the following day she was again calling for help; an ambulance was duly summoned but she remained at home. Since then she has been more tired and lethargic and when I visited earlier this week she didn’t even have the energy to get out of bed.On the advice of the Alzheimers Society we have bumped up her care so that somebody is with her throughout the night, and we are trying to arrange for care during the rest of the day. At least the presence of another person will stop the panicky demands on Careline, who are often unable to elicit a response because of her poor hearing, so feel they must send another ambulance. One major problem is that the response time can be up to four hours.
We are still working on the idea of residential care, but not sure how on earth we will manage it, especially if she is too weak to get out of bed and walk to the car. In addition the home will initially only assess her during the day and overnight.It is apparent to everybody but her that she needs to be looked after in a caring environment where there are skilled people, friendly faces and nutritious meals. Where there will be somebody to reassure her when she gets worried and confused and above all where she will be in a place of safety. We haven’t given up hope yet, but we have to contend with her independent stubborn streak that makes her too obstinate for her own good.