On the 23rd April 2016, my then 83 year old Mum had a severe stroke. This was in a major artery on the left side of her brain, which has taken the use of her right side and speech. She is unable to support herself even to sitting, is doubly incontinant and due to the fatigue, she cannot manage to swallow enough puree diet daily to survive, so she has a PEG feeding tube. She was in hospital in the Stroke Unit for 10 weeks. As she needed 24hr Nursing care we had no other choice but to find a Nursing Home that could give Mum the care she needs and deserves. She has been discharged from any visits from Dr’s unless she is ill.
Pre Stroke, Mum was quite a youthful active type of person involved in all kinds of groups and activities. She seems to be quite comfortable and content most of the time. Maybe she has resigned herself to the situation. We discovered Mum was able to write left handed, unfortunately the words didn’t always make sense but she can copy what you have written and write numbers you ask her to. She can match words and pictures, play nought’s and crosses both on the kindle and white board, play dominos and other various games. It is easy for her to let us know what she doesn’t want, but can’t make us understand what she wants.
I contacted my local Stroke Association in desperation 10 months post stroke, to see if they had any help or suggestions for me. I had a visit from a lovely Lady who left me a pack to read, with a communication leaflet. She felt we aught to get speech therapy back to review Mum’s swallow and see if they have any further recommendations. She also felt it would be good for me to speak to other people or carers who were going through similar circumstances.
The Dr referred Mum to SALT. We had regular contact with the SALT team for a while. They started to see her just as we had a surprise for both Mum and I when she discovered she could sing! They encouraged this and to to use fraises she could complete, along with some other activities when Mum is up to it. I was left with activities and exercises to follow through with Mum but she sometimes refuses to participate or finds it too tiring. She is now discharged from the team again.
This is our Story, we didn’t think we would still be in this situation three years ago, but we are, Mum is a strong woman, with her own way of doing things. Over time she is fathoming her own way of communication. Pushes away if she doesn’t want something or someone or holds tight to your arm if she wants you to stay. She is still unable to press her bell for help ( or won’t) but has mastered that if she cries someone will come to her aid! She now says yes and no, but sometimes says yes when she means no. I just wish someone could tell me how much she understands.
I go most days to see Mum as I would have done pre stroke. We are lucky that we have the support of my husband, my two daughters and son in law plus wider family and friends who help us to get through this. She became a ‘Great Grandma’ for the first time last year and her visits give Mum a real focus as she is able to sing nursery rhymes with her and loves to hold her hand and have kisses.
As yet I have not made contact with carers groups as I feel I don’t fit the ‘criteria’ the nursing home are her carers. I already have power of attorney, Mum is self funding and coming to the end of her savings, so I am about sell her house to continue with her care. I Just wanted to hear if anyone is going through similar circumstances or may have any suggestions for help with our situation.