jennifers
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Rose,
I’m so sorry for your loss. Dad passed the same day, so I hope they met up on their journey. I believe our dear Dads are watching over us and never far away, and hope you find peace in the difficult days ahead.Thinking of you.
Jen
I am so sorry to hear of your loss, and pray you and your daughter find peace in the difficult days to come…
Jen
Dad is now in hospice (since Monday). It’s beautiful (there is a waterfall and bird houses right out his wondow – so fitting since he loves birds), and a beautiful spiritual room surrounded by windows that back onto a wooded area – we spend a fair bit of time in this room with him. The people are amazing – I honestly can’t say enough about them. If Dad so much as coughs they are immediately in his room checking on him (and us). They give him his regular pain medications (which he really doesn’t seem to need anymore, although we would never risk stopping them in case the pain comes back), and give breakthrough whenever he cries out or sounds at all uncomfortable. They change him regularly (in diapers), move him around (but laugh that no matter how often they do it, he still manges to get onto his back), bathe him, shave him, and talk to him so sweetly and kindly whenever they are in the room… I could go on for hours.
Dad is now unresponsive. He spoke a few words when we first got to the hospice (asked Michelle and I if someone would always be with him, and then asking if insurance covered hospice – ha ha). Shortly after, he stopped speaking and is basically completely unresponsive. Yesterday someone was in singing some old music that Dad would love, and as soon as Michelle said how much dad would enjoy it, his bed was immediately moved into the room by staff so we could all sit with him and listen. He may not be able to speak, but he had tears running down his face as amazing grace was sung. Needless to say I had a moment right then, and had to leave for a few minutes. It was beautiful but emotional moment.
We are taking turns staying with him, and have kept our promise that he will not be alone for a second. I pray he goes peacefully, knowing that he is surrounded by love. It was a scary transition, and so hard watching them take him away in the ambulance, but now that he is there and we see how well we are all being cared for, we don’t regret our decision.
Now that I see what a hospice experience SHOULD be like, it makes me all the more angry on behalf of those who do not get this level of care. Lainy – I am so glad and honestly so proud that you are fighting on behalf of Teddy and any others that have been neglected, and I hope changes are made quickly.
Thinking of you all.
Jen
Lainy – I have to share another moment from today with you. He said that one of the things he saw was a nice big table with lots of food… it made me cry, and I very much appreciate that Teddy and the others are there, waiting to greet him for that wonderful meal when he passes over. I’ve never told him about that, so there’s no way that a memory of me telling him is what is making him think of it. That moment alone would have made me believe in their “other” world, but there have been many others today. He spoke of other people he talked to when he was “dead” that Mom had to tell me about because we’ve never heard of them.
So many beautiful moments today. He said that he’s on his way soon because they have work for him… he’s not sure what the work is yet, but he’ll find out when he gets there. He made sure we knew that we aren’t coming with him yet, and wanted to make sure we would all be going to the same place. We told him we aren’t coming now, but that he can visit us. We told him that we will be coming in time, and that he’s going ahead to get things ready for us. He smiled, and said oh boy… I’ll be busy, that’s just perfect. He keeps talking about the curb he has to step off to get to the other world (the step is on a nice boulevard, apparently). He hasn’t stepped off yet, but he’s going to soon. He is also in NO pain. We are giving him his meds just in case, but he is completely comfortable.Andrea – I’m glad your Dad experienced many of the same things… it’s a beautiful thing, and I think it has brought us all closer to accepting that he will be gone soon. I hope you are doing okay, I’m thinking of you too!
Jen
Dad is still at home, but near the end. He hasn’t been out of bed since Thursday. He had a few very aggitated days (or more particularly, a few aggitated nights). We (myself and my siblings) are all staying here, and have been since Thursday. He is mostly confused, and he is hallucinating. He has had a few moments of complete lucidity, and we’ve all had those conversations with him that we needed to have. He is still having those moments, and uses them to tell us he loves us and that everything is okay.
We have a night nurse now, and it’s wonderful. Mom and I didn’t sleep at all on Thursday night (and Mom for a few days before when we weren’t here to help), because he was trying to get out of bed, which he absolutely can’t do at this point. I don’t know how Mom did it – I was physically, mentally and emotionally drained after one night of talking to him and counting his breaths (3 breaths at a time, and then nothing for 42 seconds… it was the same all night). Last night we all slept, and I only woke up at 3:30 when I heard Dad talking. He was having a wonderful conversation with someone I couldn’t see, talking about how he knew his beautiful children would be good, among other things. He had a great night.
This morning he is MUCH more with it. Although he can’t follow a conversation for more then a few seconds, his questions and comments mostly make sense. He heard Mom laugh in the other room, for example, and smiled and said “Cheryl just laughed – I love her laugh”. He said he had a dream about his Dad, and that it was good. He said “it wasn’t good then, but it is now”… he didn’t have a good relationship with him when he was young, so that was great to hear. Then he told us that there are 2 worlds, and asked if we understood that he was between them. He asked us a lot of questions – is it going to be the same there? Will trees be the same colour and will the house look the same? How do I get there? We told him we don’t know how it will be, but that it will be beautiful, and he can come visit anytime he wants. We said we don’t know quite how he gets there, but that when he’s ready and is tired, that he will go to sleep and wake up in his new world. He said he’s been in both worlds, but is in this one for now. He’s scared to leave, but I don’t think he will be for long.
I have shed some tears this morning, but I don’t think they are entirely of sadness. I am happy that he has seen this other world, and that he was happy when he was there. Clearly I’m sad because I know it’s coming soon, but I know it’s going to be okay, because HE is going to be okay. We’ve had some great and funny moments with him over the last few days (like him telling me “I’m not confused, but the rest of the world sure is), among many others…
Love to you all, I will keep you updated. I’m sorry for those who have lost loved ones in the last few days, and those that are close. We are in this together, and I’m thankful for every one of you.Jen
I am so sorry for your loss, and pray for peace for you and your family…. I’m glad he didn’t suffer in the end, and I’m sure he’s smiling down on you.
Jen
Andrea,
I think of you and your family so often, and I’m sad that you are having a hard time right now. Father’s Day is going to be difficult for so many of us for different reasons, and I hope you can find a way to hold on to memories of your Dad while making new ones in the process. It’s such a hard balance.
I love that you are dreaming of him, and I’m sure he’s right with you during every one of them. Whether you remember exactly what the dreams are about or not, I hope you know that he’s with you and maybe trying to bring you a bit of peace and letting you know he’s okay the best way he can.
I hope the holidays coming up keep you busy (but you still have some time for yourself), and I pray that you get through this difficult time quickly, and knowing that Dad is smiling down on you always.
Thinking of you!
Jen
TJ,
My Dad is getting closer to the end every day, and throws up any time he eats or drinks anything (often including his pills at this point). He has an obstruction, which isn’t allowing any food or liquids to pass through him. They were hoping an enema would clear things up, but the blockage is too high up, and he is now on steroids to try to help things. I hope this isn’t the case with your Mom, and I agree with Marion and Lainy – it should definitely be addressed with the doctor.Because Dad is in the end stages, they will do nothing but try a few different medications and keep him comfortable, since even an IV or subcutaneous fluids are more then his poor little body can handle, but if your Mom isn’t at that point, hopefully there is more they can do.
Thinking of you.
Jen
Do you have a lot of photos of your Dad? At Christmas time, I did a photo book of my family’s life with him (on a website called shutterfly). Pictures from when we were kids right up to present day. It was very emotional looking through all the pictures, but I think it was very therapeutic for me at the same time. Once it was done, I had a book printed for Mom and Dad, one for each sibling, and for a few other family members. Maybe you could work on something like that? It will be a great keepsake for you, and you won’t be able to help remembering all the good times surrounded by all those memories….
I hope you are able to figure something out. I know your Dad will be smiling down on you no matter how you decide to spend the day!
Thinking of you…
Jen
Well, it’s become clear that Dad won’t be bouncing back from this one. 2 nights ago he fell getting out of bed, hitting his chin on the dresser. My brother (who moved back home to help Mom) heard it from the basement and got upstairs by the time Mom got out of bed… it must have terrified them both. They got him up, and while they were trying to make sure he was okay, Dad told my brother that Mark (a family member in Newfoundland) was close to dying. Mom had to tell him that he had already passed away (the day before – Dad already knew), and I guess Dad started to cry. My poor brother hasn’t had an emotional breakdown in a while, and I guess that did it for him, and he had a rough night. Later that night he got up again, emptied his bile bag, and forgot to close it, so Mom’s bed was covered in bile in the morning.
He won’t wake Mom up, but he really can’t get up on his own now (I don’t know how a man so thin could possibly stand on his own), so she’s scared that he’ll take another fall. The nurse asked if Mom would like someone there during the night to sit up, but Mom declined. I understand why, since that would really upset Dad. He is also having far more confused moments, although other times he is entirely lucid. He also keeps asking Mom to get his bags ready (I just wish he was going somewhere where he would need them
).
It’s hard to say how much time he has left, but he’s not eating at all, drinking very small amounts, sleeping most of the day, but still able to get up, swallow his own pills, use the washroom (which happens very rarely now), etc. A friend stopped by last night and he stayed in his chair in the living room for probably close to 45 minutes. He kept falling asleep, but did have a conversation with him without getting confused at all. My little girl was almost in tears with a look of such concern on her face looking up at Papa in his chair and saying “Papa owie” over and over again because his chin is a mess from the fall (and the fact that he’s getting a bit agravated and refusing to let anyone clean it for him). It was so sad.
I will be there a lot this weekend and depending on how he is doing and if there are any changes, I think I will be taking some time off work soon to be there and help Mom out. She needs a break, even if it’s just to go grocery shopping or getting a restful sleep without worrying about Dad.
Thinking of you all.Jen
Dad’s condition worsened over the weekend. He barely managed to get out of bed at all, and ate next to nothing. I guess last night he told Mom that he knew she didn’t want to hear it, but he’d rather be dead then feel the way he does right now. My wonderful, strong, and amazing Mom told him that it was okay, and she understood. Can’t be easy words to speak, but it’s heartbreaking watching him in so much pain.
It was Mom’s birthday on Sunday, and he didn’t get up at all… I went in to say bye and he could barely open his eyes to tell me he loved me. My Grandma (Mom’s mom) called me last night really upset about it as well… he’s very much a son to her, and she said it was so hard saying bye and feeling his ice cold hands on Sunday… what a hard time this is. He said that he still wanted to do chemo on Thursday (I honestly don’t think it’s possible —- I think last week wiped any energy he had right from his body), so my sister and I are going over tonight to tell him that if he’s doing it for us, to stop and to be comfortable… even though I’m sure he knows, maybe it’s time that he hears from our mouths that we are going to be okay, and that it’s okay if he’s tired. He’s still breathing normally, and no other “end” signs, but I don’t think it will be long. We will see what his nurse says today. On the other hand, we’ve thought it was time before, and he bounced back… maybe it’s just taking him longer with the chemo. We will see what this week brings, I guess.Thinking of you all…
Jen
Dad had chemo on Thursday and I guess last night was awful… he was throwing up and felt horrible all night, and then didn’t eat today. I feel like this is just going to take too much out of him, but he is determined to get through 2 weeks and see if there is an improvement with the pain, so we will support him 100% with his decision.
Lainy – reading about Teddy’s experiences reminds me so much of Dad’s. It’s like he’s taking almost the same path, with a few extra turns (like choosing chemo). Like Teddy, it has been so important from day 1 for Dad to know that things are in order, and for the most part they are.
Andrea – how are you doing? Is your Mom handling things a bit better now? I hope you are doing well, and you are getting excited for your trip. I think of you always!
Gavin – hospitals really are exhausting. I hope your Mom is doing okay, and the hospital visit wasn’t for anything serious! I definitely take a few minutes for myself every day (although I must admit that lately, those few minutes involve holding my sweet girl and watching her sleep (it’s quiet and peaceful… she’s not running, jumping, yelling, or saying no every 2 seconds)!!
Nancy – we think of you all the time. I hope the scan on the 23rd shows positive results, and the chemo has worked it’s magic for Doug. I’m glad he was so well for the wedding… I’m sure many amazing memories were made that day. Hoping to see a few pictures on Tamia’s facebook soon??? Please let Doug know we are thinking of him as well!!
Jen
Hi Everyone,
Quick update! Dad just got out of the hospital yesterday. They had to keep increasing the methadone since he was taking so much break through meds and still having a lot of pain. Hopefully they have it under control now, but we’ll see. They have decided (which shocked us all), to give chemo a try starting on Friday to see if it could help with the spread, and possibly make him more comfortable. It’s entirely with the understanding that if it makes him feel awful that he can stop at anytime. Right now only 2 weeks are booked, and we’ll see if it helps with the pain at all. He’s so weak that it really surprised us that they considered it at all.He sleeps most of the time, but at least when he’s sleeping he’s not hurting. He’s tiny (no idea what he weighs now, but it’s certainly not much) and he’s not eating, but they told him that he really needs to work on that, so I know he will try his best… he always does what the doctors tell him to! Mom is done work now, and is happy to have Dad at home. It’s exhausting being at the hospital all the time (who thought sitting could be so tiring), so it’s nice that they are are able spend time together at home together where they belong.
Dad mentions every time any one of us see him that he needs to sit with us all together so he can discuss funeral arrangements. Mom and I were talking about how maybe he’s sensing that the time is coming and needs to talk about all of this now. We are all fine with whatever brings him peace, and if planning it all out (right down to songs) is what he wants to do, then that’s what we’ll do!
Thinking of you all!!
Jen
Ashley – Lainy said it all… fight for your Mom, make a fuss, and stand your ground. You and your family will be in my thoughts and prayers tonight and in the days to come….. I hope you can all find peace, and kick some doctor ass in the process.
Jen
