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:

:grouphug: :grouphug:

So moving Maureen and a lovely reminder to us all to cherish every moment of life.

Well seen you were a Principal of English, Maureen as your diary is so movingly told. I'd love to be a fly on the wall during those phone conversations with the authorities! Please keep us updated and meantime my thoughts are with you and Alan and just think that it won't be long now until your pamper day out at Wimbie. :strawberry::wino: :hug:

Beautifully written Maureen and if it were to be published it would be a source of inspiration to those in a similar position to you. Once again, I marvel at your fortitude and resilience...you are amazing. I know who I would turn to if I needed help and encouragement to conquer a difficult situation! Also love the title of this thread! Take care. :hug:

Oh Maureen, my heart goes out to you both. You have such a gift of writing.
It brought tears to my eyes as it will to many.The love for each other shines through.
It's good that it helps you to write about it .Keep going - we all care a lot.

Much love :love::grouphug:

Aaah Mo!!!! So glad your writing is a source of therapy for you. Make sure you keep all of your musings saved somewhere safe as well. It takes me back to caring for mum, which I'm so glad I was able to do.

Keep doing what you're doing, you're an amazing woman and write away on here as much as you need.

We all love and care about you both. :flowers::hug:

Amazed that you are reading this. Thought I'd just jot down my thoughts and eventually someone would visit this thread. You are on the ball, impressed as I sometimes forget to look at all threads. Your comments are lovely and Lynne and Susan I hope it's not upset you, bringing back memories of your struggles caring for loved ones.

It is our 53rd Wedding Anniversary. I buy two cards and show them to Alan. He asks for a pen. Tears come easily often and there are tears as he struggles to write as I hold the card and try to guide his hand. It is practically indecipherable but he carries on. He used to write the most loving and romantic messages, words that didn't come easily but could be written so beautifully. I kiss him and say that's lovely, thank you and he lies back in the chair exhausted with the effort. During the day when he's awake I talk about our wedding day. How it was the hottest Whit on record the days before, how it was hot and sunny as we went into church and when we came out after a long Nuptial Mass the heavens opened and we had to dash back into church until the rain subsided and we were able to take photographs outside. He remembers and recalls other events of the day. We hold hands as we reminisce and he looks happy. Later we listen to music together. It's been a lovely day though as I sit next to him I can't help wondering how many more will we have.

Beautifully written and very poignant. I have never had the pleasure of meeting either of you but can't help be moved by your story. I sincerely hope that the future is no harder than it needs to be for both of you.

The District Nurse comes for another blood test. He smiles at her and says hello. The tennis from Monte Carlo is on. I turn down the volume as she chats. She comments that he must like tennis. Yes he replies but Maureen loves Andy Murray and he comes first in our house! She laughs and says she's sure that's not true. The GP visits, he's the second string at our surgery, young and very interested in PSP. Alan is the first patient he's met with this condition and we discuss it at length. He comments on the photographs in the room showing supergramps standing, smiling, looking so different. Photographs taken at my 70th birthday, with our children, in New York, San Diego and with the Captain on our last cruise. On Sundays the Eucharist Minister Frank visits bring Communion for us both. He grasps both hands as he greets supergramps and Alan responds with a huge smile. He's always pleased to see him. Sometimes he is able to follow the short service, attempting to pray, other times he just stares upwards blankly. He tries to make the sign of the Cross not always successively but he's always happy he's received Communion. One day we get a visit from our local priest. Alan is having a good day and during the hour and three quarter visit he chats with Fr Tom who promises to come and see him again..................................Visitors are few and far between these days. When he came home from hospital in. January I sent an e-mail to the Old Codgers, a forum for retired Fire Fighters in Merseyside saying I would appreciate visits from ex-colleagues. To date he has had two visits. So many men have told me they will visit, from the two rugby union clubs, from our local but they don't come. He is on the Sick List at our Parish Church and the information reaches two parishes.....but nobody comes. My friends say they will visit, people I have known for many years.....but they don't come...........Thankfully I have two friends, one I've known for many years as we worked together and one I met through this forum. If it wasn't for Janet and Pam aka MurrayAOne I wouldn't see anyone except for family. These two true friends have been a source of solace to me and it's with them and Pam especially that I get to enjoy conversation, a few glasses of wine and the knowledge that I haven't been totally abandoned.

My thoughts and prayers are with you and Alan. Congratulations on your Wedding anniversary. When I met you in Ghent it was obvious that you both loved each other, and I must admit that I fell in love with Alan as it was clear to see his courage and generosity of spirit. You are both such wonderful adverts of what makes a successful marriage.
As to the lack of visits from former colleagues I believe that they don't know how they will cope, not that is a good enough reason as they should put your needs above their fears.
If I was nearer I would visit, but be sure you are both very much in my thoughts and prayers.:hug::cheers:

Thank you Mickey for your beautiful reply. I know we are in your prayers always.

I want to thank you for introducing me to the wonderful poem of Dylan Thomas.
In my ignorance I had to look it up on the internet.It brought me to tears & memories were reignited.:thanks:
I hope you had a happy day today together. Wish I was able to visit. Just remember that we are here to listen & care.
Lots of love Jean xxxx:grouphug:

Thanks Jean, glad you appreciate the poem which isn't surprising as you are a woman who appreciates the Arts. X At least no one has noticed gently instead of gentle. I should pay more attention to what comes up on screen. I don't know how to correct it, not that it matters.

:wave::love::sad::sad::grouphug:

Spring turns into summer and I have filled the deck with hanging baskets and pots. I have to confess that they have been bought preplanted but they make colourful display that suoergramps can see from his chair or his bed. He was always a keen gardener and over the years we had a fantastic vegetable patch and grow bags filled with all sorts and many hanging baskets and pots everywhere. I've just done what
I can. He's had a bad time lately and during Roland Garros seemed to be changing. He no longer goes to the day centre as he was having bad days there and in the first and second week of the French Open had phone calls telling me he wasn't very good. He was coming home totally exhausted, being brought out of the bus with his head almost touching his knees. He sleeps far more now but still has his good days..............

I tell him I have the chance of a ticket for the final thanks to Roy and would love to go if Andy reaches the final. Bless him he says you must go, you deserve it. It wasn't to be. I tell him I am going to Wimbledon on the first day with Pam though I keep forgetting to inform him of the cost. I'll probably keep forgetting!! His speech is getting worse and we both get upset when I can't tell what he's saying. It's not all the time but most of the time now. I kiss and hug him and he clings to me. A couple of afternoons I have lowered the bed rails and I lie down next to him with his arm around me. He falls asleep and so do I. He asks me when can he go back upstairs to bed and I tell him I'm not sure, it might be a while. It is breaking my heart.

:grouphug: For You Both!!! :grouphug:

Heartbreaking Supergran. Thoughts to you both. It is a true love story and very hard for you now. Stay strong when you can.:hug:

Thoughts and prayers are with you both. :grouphug:

:grouphug:

Continuing to keep you in my prayers :grouphug:

Physiotherapist arrives. Not from Whiston Hospital I hasten to add but from St Helens. She is lovely, very kind and efficient. She does some stretching exercises with Alan as he sits in his chair. Arms, back and upper body. She asks for the zimmer frame and gets him to stand. The effort and concentration from him brings tears to my eyes. This man who was always fast on the rugby field, he had a sidestep second to none, who could score tries and run for ever is now struggling to stand upright. He's had enough and he sinks back for a rest. A few minutes later and he does it again. His effort is so obvious, his aim is to please. He sits down and she asks him to raise each knee, marching on the spot she calls it. He copies her but slowly and sometimes does the left leg instead of the right. I give him a hug and Aleksandra calls it a day. She has visited three times and this is her last session. I will now have to apply again, go on a waiting list and....wait! I know what to do and will carry on with the exercises as I have been doing for the last few weeks. I am unable to do the standing exercise with him as need another person. After a drink he lies back in his chair and immediately falls asleep. He is exhausted.

What a hero for trying so hard x

Not a praying person, but know how hard it is to struggle to do something when the mind is willing, but the body is not cooperating. All power to Super Gramps for trying. My thoughts are with you.

How did I miss this thread?! I have just read it all in my lunch break at work and now my eyes are so full of tears I can hardly see to type this. I always knew you wrote beautifully Mo but this is different because it so heartfelt and personal. Every day I see patients whose lives are being changed by illness, but what we don't see is the lives they lived before, the people they once were. Every health care professional should read this blog, it is an inspiration!

I wish I lived closer and could be someone else to visit you, but as it is I am thinking of you always. Much love xx

Like you Caro I have only just read this thread, and I had a lump in my throat when I had finished reading it, I can only say as always my thoughts and prayers are with you Maureen.

Thanks Caro and millypops. I am comforted and grateful for your comments. I know that you have always supported us from the beginning which means a lot to me.

My heart goes out to you as it is so hard to watch, but as always Maureen, thinking of you & Supergramps sending lots of :grouphug::grouphug:

Well, this is a progressive condition and things are definitely progressing. For the last three days my lovely husband has not been able to get out of bed. The carers can't use the hoist as he is unable to grasp the handles. He has been barely awake but opens his mouth when instructed for medication, food and drinks. He seems unable to open his eyes and hasn't spoken much. He just lies there and my heart is breaking watching him. I wonder what it's like for him, how he feels, does he think. Sometimes when I ask him how he feels he mumbles "All right". He never complains, never looks miserable, doesn't have pain but he is living in a twilight world, not living...just existing. My emotions are of deep sadness, frustration and sometimes anger that the love of my life is no longer with me but just lying in a hospital bed unaware of things around him. I watch cricket and rugby and remember how we shared a passionate interest together. My mind goes back to trips watching Lancashire cricket team, test matches at Old Trafford, rugby matches, both codes and I am sad that he can no longer watch and enjoy these sports that were a huge part of his life. Today I am feeling angry, unhappy and guilty. The carers point out to me changes on his feet. One heel has what looks like a large blood blister. This has certainly not developed overnight and I am furious that the carers over the weekend haven't noticed changes in his skin. I feel guilty as I didn't see it, leaving everything to the carers. I phone the District Nurses and am promised a visit some time today. I phone the Care company to relay my concerns. They have already been reported by the carer who spotted the skin changes. I phone Social Services saying I need to talk about changing carers. I am sitting with Alan, have been for the last hour and a half and he hasn't opened his eyes even when I give him a drink. He now has problems swallowing and it takes more time feeding, administering medication and getting drinks down him. A nurse was here last week to assess and advise and the GP visited also. He couldn't have communion yesterday as I was worried he would choke. The condition is progressing and quite quickly. I g o on the PSP forum to find out how people have died. It's usually from pneumonia caused by swallowing problems. I don't know what to think. I shall just carry on providing love and comfort. I hug and kiss him and tell him I love him but recently he hasn't responded which upsets me. He is leaving me and my heart breaks. I hate this disease.