Caring for an adult child

Our daughter Miriam was born in 1962 with Down Syndrome. My husband and I were 25 and 24. Our twin sons Foster and Raymond were born in 1964.
Miriam's birth: Miriam was the first baby our GP delivered. I remember that day asking the nurses 'is she all right?' I looked at the space between her eyes, how she held her arms and legs like a frog. That first night I asked the nurses again, and again. The nurses must have contacted the doctor because the next evening at visiting time he came into the room, I looked at his face and said, 'she is not all right, is she!'
A few months before Miriam turned 40 she had a stroke which left her initially severely paralysed on her right side. Three months after the stroke she came back home to live (she'd been in a supported flatting situation since 1995). She'd had a full life which now had been drastically curtailed. My husband and I again became her full-time carers in a different way.

Caring for an adult child: A child that stays a child, perhaps a 'young 10-year old'. But also an awareness of how that child is nearly the same age as I am now due to the accelerated ageing of DS people.

The last few years Miriam has had a lot of medical problems, often resulting in operations. Gall bladder, eye operations. Ever since the stroke she's had to wear a splint on her right leg but her foot/ankle never came back to 90 degrees. Consequently ulcers under her feet. In 2009 she had an operation to have her Achilles tendon lengthened. Wasting of her leg, massage. Last September she had a bad fall and we are now back to carer support for showers etc six days a week as well as 3 x per week physio exercises. She now also has to wear a knee brace. We cannot leave her by herself any more, sitters and problems. MoH helpful but with closure of the ISIS facility no alternative care place can be found.

Aspects of caring:

Emotional level: protective, aware of her feelings – her inability to voice her thoughts. Careful to be a translator, her 'voice', her autonomy.
Social limitations: not the same flexibility as peers. We now need to get sitters to stay with her whenever we want to go out. I learned also that I have to check I don't make her wellbeing my main topic of conversation.
Personal level: I want to cope for as long as I can but have to accept that in my mid-seventies I am sooner exhausted than I was ten years ago.
Coping techniques: Acknowledging the stress incurred. As hard as it is I need courage to let others know that I am stressed. I've learnt to be more aware of my needs. I am grateful to be able to meet friends for a good natter and am lucky to have lots of hobbies: writing, reading, music, swimming, walking, gardening, Pilates. There are not enough hours in the day.
Financial: Stressful, using alternative remedies, costly appointments both for Miriam and me. Prescriptions by doctor often generic, and I end up paying heaps more for the original medication. I'll never forget the audiologist who suggested I needed a regular massage to help with tinnitus.