This is a grumbly kind of blog. The skies are gray the day is cold and I feel blue. I went into the hospital yesterday to see the physiotherapist who has been working with Ray, she had gone somewhere else (she also works in the community rehab team) so I couldn’t see her. Nor could I see Ray as he had gone to have an xray of the humerus to see if it had healed enough for him to do more walking etc than he has been doing.
I went into to see Ray later and he wasn’t talking to me. He was sitting up in bed with his eyes firmly closed ignoring me. I guess he had been taken to the hospital, wheeled somewhere until it was his turn to be xrayed, returned to the same spot until it was time to come back to his present place. All without being able to eat or drink or even asked about anything he may have needed. With his present lack of initiating speech I guess that is hard on him. If I had been notified I could have gone in and kept him company. He is now officially listed as having aphasia.
Today I again tried to see the physiotherapist again, this time she was away on a course and will be for the rest of the week! So I have no way of knowing how Ray is doing in respect to standing up, walking a few steps and sitting down. I feel as if I have been left out of the loop again. This is in a hospital plastered with signs asking: “Are you a Carer? We value you!” sure they do.
So I asked the nursing staff if someone could measure Ray and let me have a waist measurement. I need to know what size clothes he will fit into for the wedding, which is less than four weeks away now. I have access to a couple os suits that may fit him. I don’t think he will be able to do much but a hired wheelchair taxi to the service venue; a taxi to the lunch venue and a taxi home or back to the hospital is what we are planning. An expensive solution but I doubt they will have him to the stage where he can bend down and sit on the car seat. That will have to come in the home stage if there is one.
You can tell that I am beginning to lose hope now. I keep asking for prayer and I am praying for a miracle. I spend my time cheering Ray on, talking to the staff about how this all might be accomplished. The staff are very non-committal and I am getting strange looks and I think that in the end someone will be appointed to have a serious talk with me and that will be the end of my planning to get him home. I hope that I am wrong but no-one is telling me anything positive and Ray himself is just sitting, watching tv, eating, having a nap, no signs that he is enthusiastic about doing some exercise to make it possible for him to come home.
I might be a little vulnerable today as I had an upset tummy last night and didn’t get much sleep. I shouldn’t be worrying….well maybe I am, sub-consciously because I am trying to remain positive and picture him home here with me. It is a big ask, coming from so many negatives, the stroke, the chest infection, the broken arm – to being strong enough to come home again. I do have faith it can happen but so much depends on others, the therapists and on Ray himself.
Like all caregivers I am aware that so many people are worse off than Ray and I are. We do have some assets, like a roof over our heads, a small income, the advantage of medical treatment through Medicare. Though of course due to our budget restrictions we are not able to pay for private care or the equipment we will need to bring Ray home. I will hire equipment and hope that it is for a short time, until Ray gets his strength back.
I am praying for a miracle, I always do, for me and for others. Not a mighty big miracle just the sort that will see Ray making steady progress and result in him coming home once more. And I do mean once as I can see this re-occurring further down the track. Ray is not strong and although I will try to keep him from having falls I know that he can “fall into space” when he is right beside me. So his being here at home will be a day-to-day thing. One day at a time, one hour at a time, one minute at a time.
Sorry for this “sad sack” kind of post but it is where I am at – here at home alone and so sick of being forever a lady-in-waiting.