Since Ma was placed in care on 4 July until now, I’ve watched her slowly deteriorate.
Today I visited to find her with her head in her hands confused and unhappy. She was so happy to see me and told me of ‘people’ in her bed; ‘people’ taking her things and waking up in a place different from where she went to sleep. She started to cry and told me how she was so unhappy and felt so bad but couldn’t tell me in what way.
The nurse who was giving out her nightly medications gave them to me as she didn’t want to distress Ma further. I talked to Ma about them and she agreed to take them. I gave her a hug and we went outside to side in the sun and feel the breeze on our faces. We sat and talked. She couldn’t remember me being there yesterday or that she’d slept in the bed the night before. She was distressed because she couldn’t remember and she felt insecure. She told me I was the only one she trusted. She broke my heart.
On Wednesday last week she was very confused and weak and she ended up going to hospital to get checked out. They did scans and x-rays and bloods. The bloods came back with infection and showing that her kidneys were failing. The doctors were wonderful and we talked about the need for comfort rather than invasive procedures and opted not to do a urine test. Sounds easy? Just wee in a jar. Not with Ma. Her legs weren’t working and last time they had to try and get her on a pan on the bed and she screamed. They were going to put in a catheter but decided against it. Too much!
In the end they gave her IV antibiotics and arranged transport back to the nursing home. I arrived to find her tucked up in bed… Ma hasn’t slept in a bed since she entered the nursing home back in July. She has slept in her chair every night which is why she now has pressure sores on her bottom. I stayed the night with her and she never settled all night. She’d drift off to sleep and her legs and arms would twitch and wake her up. She would call out and talk about things that weren’t there. She cried and told me she had had enough and wanted to go. She broke my heart. I wanted her to be able to go.
Around 5am I told her I would go and she started crying. I said I’d stay. My sister relieved me around 9 and I went home and bawled my eyes out.
Saturday morning arrives and my man turns up with flowers for me and for Ma. We went to see Ma and she was sitting there asking to be taken out! I will never get used to the roller coaster ride. I’m barely dragging myself around and she’s raring to go. We pushed her along the path on the common and my man demonstrated his prowess on the exercise equipment and she laughed and laughed and made jokes. I could hear her joy. She said how she loved having the sun and breeze on her face.
She doesn’t eat much now and is down to just over 70kg from around 90kg. She has difficulty swallowing.
Tomorrow we are supposed to go to the Ulcer Clinic. Do we go or do we not bother any more? Her legs are now stable. The doctor has cut back on her medications because she has very low blood pressure now.
When do you say enough is enough? They talk to me about ‘comfort care’ just managing the symptoms. I wish I knew how much longer we had. I want to spend as much time with her as possible but I’m not sure how much time that is. I know that I’m now ready for her to go. Seeing her suffer mentally and physically breaks my heart. In the past, I’ve been selfish in wanting her to stay. Now I just want her to be free from pain, confusion and suffering.
She breaks my heart. My wish for her is to know that her family loves her. I hope she gets that wish.
aged carer experience 