Our Bed

[Mrs_Elton]

Well it's me again. Unable to sleep I am sitting at the computer letting my fingers pound the keyboard in an attempt to offload my fears and worries. An attempt to let them disappear into cyberspace, wafting through the black eeriness of the unknown, but then there's the problem......that's where we are, living in a world of uncertainty, the unknown, my fears and worries are just circling around me and my family. We're in some kind of vacuum where nothing can escape. My thoughts are all over the place, it's hard to focus on one thing......so I'm just going to type, let the words fall out and wherever they land then so be it. My husband is dying. The father of my two beautiful sons is dying. I don't know how long it will be, more than what the doctor said in December and less than what we were thinking last week. Last week he was walking, he was talking, he was eating, he was contributing. This week he can barely walk, he occasionally talks, he rarely eats and is sleeping 95% of the time, if not more. Something is happening in his head, either the tumour is growing or the swelling is increasing and placing too much pressure on his brain. He is not fuctioning, he is not able to function, like he could function last week, well 3 days ago to be honest. Mother's Day he was up and about, sure he slept for a few hours, but he ate well, joined in with the family celebrations, contributed to conversation. Then he went to bed........the headache started, the restlessness began, as the hours passed medication wasn't helping and then the nausea started. Dry wretching at first, then the vomitting. Now his medications had no chance of being effective, he couldn't keep them down long enough. He had an injection for the nausea and of morphine for the pain. Nausea stopped, thankfully, pain reduced but didn't disappear. Then it began to increase its spread to his entire head. I got up to go and get some medication for the breakthrough pain, as I turned the light on I could see he was having some kind of 'episode'. I thought he might be having a stroke. His eyes were in some kind of frozen stare, his body was locked and he couldn't communicate with me at all. I didn't know if I should ring an ambulance or the palliative care team. I rang the palliative care team and then phoned my neighbour to come and sit with me. After a few minutes, not sure how many, he was able to move a little and could respond with some grunts, not words at that time. After a bit longer he could speak a little but would basically make a one or two word response and then fall asleep. The palliative care nurse arrived, between the two of us we struggled to get him into a sitting position. He couldn't support himself at all and fell back onto the bed as soon as we let go. We got him into a sitting position again and the nurse squatted on the floor pulling him towards her to keep him upright while I set about stripping the top half of the bed (as he had lost bladder control during the 'episode'). When I picture it in my head, I think of the nurse as a tent peg, her and hubby's arms are the rope (stay?? is it called??) and hubby is the tent. Without the tension she created with her arms pulling his, he would have collapsed in a heap. His whole body was leaning significantly to the left, he had very little strength. There were several 'absent' moments, where he seemed to look straight through us. Once we had him settled in a dry singlet, incontinence pants and a clean dry bed, he slept fairly peacefully. The nurse wrote up her notes and left, my neighbour left and I fell into bed for some sleep. An hour later, he was experiencing tremors, so I got the 'medication drops' that had been left for that purpose and gave him the amount the nurse had drawn up before she left. I got back into bed, but the tremors continued. I waited for, and hoped, the medication would do its job. Next, he told me he needed to use the bathroom, it was a mammoth effort to get him sitting up, then standing up with the aid of a walking frame, we tried several times to get him moving but his feet/legs just couldn't receive the right message. Without going into all the detail (in an effort to maintain some dignity), the round trip to and from took about 25-30 mins and a whole lot of energy on both our parts. I would fall back into bed and within 15 minutes he would tell me we needed to repeat the journey. This pattern continued from about 4am through to 9am. It was highly exhausting. The palliative nurse and doctor came to see him about 10ish, he is now catheterized and has a pump connected to administer his medications. A hospital bed, together with a number of other aids to enable home nursing, are being delivered between 9-10am this morning. The nurse will come daily now. It will be more practical to use the hospital bed, it will certainly make it easier for us to care for him........but........we've moved to the next stage.......he's not just 'sick in bed' now. Our home is now a hospital, our lounge room is now a hospital room. I can't write anymore. I'm not even going to proof-read this (as I would normally do) before posting it. I've got some of it out of my head, probably only for a little while, but in that little while.. I am going back to 'our' bed, to lay beside my husband because this may be the last time that I can, in our bed.

[Versaillon]

Oh Jill. Reading this, I cried and my heart breaks for you. To see someone you love so dearly, so deeply, go through something so wretched, would stretch even the most strongest of people. I don't know what else to say but please know that I'm thinking of you and your family. I'm sorry this had to happen. It's not fair. Love Jo xxx

[Jules2]

Hugss Jill, that must have been very frightening to experience that with your husband. Glad you have got some help. Thinking of you. Julie xo

[CATS]

Jill - Mrs Elton- my thoughts are with you.This is all very sad and very exhausting physically,mentally and emotionally. I experienced what you are talking about with my Dad - very undignified - but what else can we do- we love them. I may not be a 'good Catholic' attending Mass etc but I do pray and it is a comfort - so I am thinking of you and your boys in Prayer also. I never thought I would say this to anyone but - cyber hugs are coming your way. Take care xxxJ

[samex]

My thoughts are with you Jill. You must be emotionally and physically exhausted but I am glad that you have neighbours and friends to call upon to help when in crisis. I'm so sorry but I don't know what else to say but please remember that there is always someone here for you to outpour your thoughts to. Proof reading is never required. I hope that there are people to support you as well as you are supporting your husband. Take care, S

[thaker]

Jill My thoughts are with you. Nothing can prepare one for what you are going through and nothing I say can take away any of the pain and heartache you are feeling now. Just know that you have a support network and rely on them as much as you can to help you carry on. Am here if you need to talk. Sangeeta

[Mrs_Elton]

Thanks everyone, Today has been a better day, he is settled in the hospital bed and that has made things far easier on a practical level, emotionally may be a different story, tonight will be the first night in our bed without him there beside me. Sure we have had plenty of occasions where we have slept apart, times of illness with the kids, hospital stays, work committments, but this is different, this is very different. Greg has been more alert today, he slept for most of the morning but has been mostly awake during the afternoon. That is a huge improvement all on its own. He is communicating more, there are still times when he is confused and muddled, but yesterday we weren't getting any conversation. He has been able to eat today, again not much, but 3 times what he ate yesterday, so again improvement. The medication by pump seems to be working well, eliminating the peaks and troughs as oral medication wore out. Must go, plenty to do, but am feeling much better than I did 24 hours ago. Thanks, you're all champions!! Jill

[WishingStar]

Dear Jill, No words could adequately comfort you during this time. I was truly saddended to read your blog and to see that your husband has been moved to this stage of care. Glad to hear that he is doing a little better. It brought back memories of my own grandparents who when my grandmother was passing desperately wanted to stay in her own bed - she did until the last week, until it became impossible - the decision to move her was just so gutwreching for my grandad - as you have so described in your blog - such a significant thing to have happened in your journey. Thinking of you, Cyber hugs, Nicole xoxoxoxo

[#9]

Dear Jill, My heart goes out to you. Luv Reindeer xoxo

[caring_partner]

Dear Jill. I am so saddened to read what you are going through. Unfortunately it it something I may have to got through with my husband someday (who knows when) but as you would know it is something you dont want to think about. Sending love to you and your family. I know how brave you are. Take care of all those you love. Love Gail.

[jodielee12]

Hi Jill as i sit here and read your blog with tears in my eyes, there is nothing that i can say that will ease your pain. please know that i am thinking of you all. Linda

[Jewel_and_Mark]

Dear Jill, I send you my love and I am thinking of you, may you be blessed with unwavering strength to carry you and your family through this next phase of the journey. Jewel xx

[larn75]

Hi Jill, I want to cry so maybe you won't have to today, i want to scream so it releases some of your pressure. I want to punch a pillow if it can make you feel a little relief. I want to run and run so it takes you away from all this for a second or two. But none of this will make the slightest bit of difference. Instead I send you cyber hugs, love and strength, and the knowledge that you are not alone. There are many of us thinking of you. take care Jill Alana xx

[Mrs_Elton]

Thanks Alana, All hugs accepted with gratitude. Jill xo