Do Not Go Gently into that Good Night or "It's Life Jim, but Not as We Know it"

I wake up in bed alone as I have done since January. No supergramps smiling at me as he gets up early and gets ready for his day. Those days are long gone, well before January but I still remember them as I lie here wondering how he will be today. I think back to the trips and falls, to the signs of something going wrong, to the epilepsy diagnosed years ago but now well-managed by medication and to the 23rd November 2016. On that day we finally had an explanation, a diagnosis. We were told at the Walton Centre by a very kind Neurologist that my lovely, funny, kind husband has Supranuclear Palsy, a degenerative brain condition. I'd never heard if it but since then know a lot about it. I have researched it, joined a forum and the more I read of other sufferers and carers' experiences the more prepared I am for what is to come. :sad::sad::sad::sad::sad::sad::sad::sad: It is April and Alan is once more in hospital. I am unhappy. Each day I go in and find his table away from him so he can't reach for his drinks. I give him a full breaker and he drinks it greedily. He was thirsty! I feed him every day with his evening meal. A nurse passes by one day and comments on the clean plate. I tell her he has a good appetite and she tells me he doesn't at lunch time. I question this later and told that he's very often asleep. You have to wake him I say inwardly screaming with anger and frustration.........................I make a decision which I tell the GP: He will never go back into hospital. He will never be left alone in a room as he was this year, never be thirsty and missing meals......................Are you happy I ask and he always replies Yes, I'm happy at home with you. This is where he is staying!

I get up, my routine always the same except when he goes to the Kershaw Centre. Quick shower, dress and downstairs. I go in to him, he's asleep though he wasn't at 5.40 when I hear him cailing me via the monitor. Maureen, Maureen he calls. I wait and soon he stops and gentle snoring reassures me. This happens a lot and when I asK him why did he call me he says he didn't want me to oversleep for the carers. Patiently I tell him once again I have an alarm and my days of sleeping in I are over. He smiles.

I look around and see what is virtually a hospital room. The bed with rails dominates. The bed which supergramps has been known to call his cage. His electric reclining chair is near the patio doors and he usually sits there in the mornings. I see everything here that he needs. Chests of drawers brought from upstairs
and a large built-in cupboard at the bottom house meducation, toiletries, towels, pyjamas, bedding, pads and clothes. Instead of our lovely glass occasional tables I see a wheelchair, commode, laundry basket and Zimmer frame. I muse on the fact that he rarely uses the Zimmer now as he really is unable to walk any more. I feel sad thinking of this man who would walk 5 miles every morning after bringing up my breakfast and the papers; who would happily walk into town, would walk to the pub every Friday evening to watch Super League and is now unable to stand on his own. The large Standing Frame which is used to transfer him is also in the room, a permanent reminder of his condition. ....................I brush back my tears, swallow hard and get ready for the carers. Another day has begun.

Very moving Maureen, God bless you both. xx

Beautifully written. Sending you both our best wishes from fentiger and myself xx

Hang on to the good memories, Maureen, and laugh when you can. My thoughts are with you.

I will be recording my musings from now on. Somehow it helps and to know that so many friends care is a blessing.

He sleeps a lot, a symptom of PSP. Other symptoms are slumping to one side, staring, the inability to speak clearly though his Yes and No are usually clear and audible. It is a bad day.....he is unresponsive and his lovely blue eyes are vacant. He stares upwards and doesn't respond to gentle questions. He is washed and dressed and put back into bed where he is immediately asleep. I wake him up throughout the day to give him drinks and food. Perhaps later he rallies and I sit with him holding his hand. He grasps mine tightly. Sometimes I ask him if he wants some music and we stay holding hands listening to his favourites. The volume has to be high and the voices of Sinatra, Ella, Sara Vaughan, Willie Nelson, Neil Diamond, to name just a few resound around the house. He is happy and gradually falls asleep again. Gently I extricate my hand from his and go and do a few jobs.

It is a good day. He smiles at the carers, he answers their questions and smiles and thanks them. They all think he's lovely and I honestly couldn't manage without them even though I've had to train them all in various ways. Please don't leave the soap in the bowl of water, please empty completely the liquid medication, please keep towels for top and bottom separate. I make lists for them, I explain that I recycle so don't want everything discarded in one bag, I listen to them on the monitor.............They're used to me now and I've only had two banned from the house.:big grin: Alan watches TV, he can no longer read. I read to him, usually rugby, cricket and Andy related articles of course. He can no longer use or speak on the phone which often causes some irritation on my part.........The phone rings: Can I speak to Alan Stewart-Jones. I ask who's speaking. ...It's usually someone from the Health Authority. I explain that he is unable to speak on the phone then told because of patient confidentiality the conversation must end. Hold on, I say, this is his wife and his carer and I need to know why you are ringing. I ask if they are aware of his condition and not everyone is. I explain and then told this call is a reminder of an appointment be has. I reply that I'm well aware of the appointment as have already received two letters! It is on the calendar and wouldn't it save money and time if these reminders weren't made. You can always opt out I'm told. I opt out! Supergramps asks who was on the phone and I explain and tell him what I have said. He grins and says They don't know you but they soon will. He's having a good day!

Oh! Maureen, how beautifully written,it really made me shed some tears as could relate to some of your musings after having lost my mother to Alzheimer's, your heart just breaks seeing them like that, so my heart goes out to you. Sending my thoughts and prayers and a big :grouphug:. But most of all Maureen don't forget to laugh as it sure helps a great deal :grouphug: