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Monday, 3 October 2016

Question of the Month: Decisions and Regrets

It's time for Question of the Month, where a group of bloggers answer a (hopefully) thought-provoking question. This is the last one I'll be hosting, so I thought I'd make it the most personal. The question is:

"What's a decision you've made in the past that, logically, you know was the right decision to make, but which you still feel guilty or regretful about?"

I asked this because some months ago, my Grandma was diagnosed with cancer. Her health began on a rapid decline that was sometimes hard to watch. She had to have her voice box removed, and had to breathe through a hole in her neck. That unfortunately didn't stop the cancer though, as we later discovered that the rest of her body was riddled with it. Plus, while it was never actually diagnosed, it was pretty clear that she was descending very quickly into dementia. It started with her freaking out that her keys had been stolen and ended just a few months later with her sitting and scowling at the wall for hours on end, unable to walk and only being able to communicate by banging her cane on the ground.

Her kids spent a lot of time discussing how to proceed with this. They knew she would HATE going to a care home and that she would fight against it passionately. She was only ever comfortable when she was at the house in which she raised her family. Eventually, they felt they had to. She was living in that house on her own and she couldn't look after herself. At the very least, the hole in her throat through which she was now breathing (called a stoma) would require cleaning almost hourly, and she was in no shape to do it herself.

Just as they'd predicted, she hated it. She became insufferable and depressed. This was before the dementia had set in, so she would let her family know repeatedly (despite not being able to talk) how awful it was there. So eventually, my dad and his brother decided to do something about it. Despite being incredibly busy people, My Dad, my uncle, and both of their wives worked out a roster so that they could bring Grandma home and ensure that someone could be there around the clock to take care of her. They split it into morning and evening shifts, with the men usually sleeping there overnight. They set up an office space with internet so they could still take care of some of their work while they were there. And, because they just couldn't find anyone who was free to look after her on the Thursday day shift, they asked me (and I agreed) to help out as well.

The nurses at the care home thought we were crazy. They thought it was a terrible idea and were so convinced that she couldn't get the same level of care at home as what she could there, that they even threatened to procure government intervention and keep her there against our will. But a quick bit of research told us that that wasn't possible. So we took her home and began to be care nurses ourselves.

Every Thursday for a couple of months, I would bring my gear over to Grandma's house and do my work there while watching over her. Occasionally I'd take her for a walk in the sun. Every two hours I'd administer a serum to help with her pain. And every four hours, I'd put on some rubber gloves and get her to cough all the disgusting built-up phlegm from her stoma into a tissue. I'd try to find films and music that would keep her entertained so that she didn't bang her cane at me while I was working to point at something that was freaking her out and that I couldn't do anything about. And when the nurses visited to give her her daily truckload of pills, I'd have communicate with the other carers to keep on top of all the different doses of everything she had. It was heartbreaking ever time I had to leave. At 6 o'clock, I'd have to pack up my stuff and head off to host a quiz night. The next person wouldn't be able to come in until 7:00, which meant she'd be on her own for an hour. As soon as she saw me pack up my laptop, she'd jump up and start banging her cane, pointing at the ground to indicate that she wanted me to stay. She'd have a look of terror on her face as if she was about to lose the last person she had left in her life. "I have to go to work!" I'd plead, to which she'd furiously shake her head and point at the ground again. I worked out that I'd just have to repeat that a few times before it sank in and her voiceless cries of "stay here" turned into "when are you coming back?"
"Next week," I'd assure her, but she just got even sadder at that.

The nurses that made the house visits were endlessly impressed with what we were doing. They said they'd never seen anything like it and that they thought we were all crazy (in the best possible way). But eventually, her health just got too bad. We had to put her back in a place where she had access to trained medical professionals. So in early January this year, we bit the bullet and put her back in a care home.

Now, just a few weeks earlier, I'd booked a holiday in South East Asia with my friends. The plan was to spend five days in Singapore, then go to Thailand for another six days, where our friend Brooke would be there celebrating her 21st birthday. It would be the first time I'd been overseas since I was 14, and the first time ever without my family. It would also be my first time travelling to Asia, so I'd get to cross that off my bucket list. I was very excited. Then, two days before the trip, Grandma had to be transferred to a hospital. She'd collapsed and was having unusually bad trouble breathing. I remember being in the hospital's Intensive Care Unit, sitting in a family waiting room, while a doctor came in, explained the situation so far, and then, as tenderly as possible, brought up the subject of whether or not to resuscitate her. Dad was shocked by the question and told them to resuscitate her as if he shouldn't have had to say something so obvious. Even though I didn't agree, I totally understood how he was feeling, and I knew it was his call to make. Despite all this, I don't think the thought of cancelling the trip ever crossed my mind.

Then, the day came. We all slept at the house of my friend Kelsey overnight and woke up early to head to the airport together. We checked in our luggage, found our gate and waited there for an hour, at once both nervous and excited. Then... I got the phone call from Mum.

'It's Grandma,' said Mum. 'She's stopped responding. We don't know how long she has left.'
'Oh no,' I said, my mind racing. My friends, aware of my Grandma's current state, stopped talking to each other and listened. 'I... Should I cancel the trip?'
'I don't know Michael, is that possible?'
'Let me make some calls. I need to find out what my options are.'

Over the next 20 or 30 minutes, I made some hurried calls to my insurance company and my travel agent (the travel agent being difficult because Kelsey had handled that for all of us). I was now in a race against the clock to figure out whether I should get on this waiting plane, I abandon it and be with my grandma in her final moments. From what I could gather, I could get a refund if I had to cancel it. But the insurance company obviously couldn't make any promises before a claim was lodged. Then there was the wishes of my family to consider. Everyone always says things like "He/she would have wanted you to be happy," But in the case of my grandma, I wasn't sure. She was clearly very needy, and may have seen it as an insult for me to go off and have the time of my life. And what about her kids... One of my Dad's strongest characteristics is the enormous sense of responsibility he has for his family. Even if my Grandma would have wanted me to take the trip, would he? Eventually, I was back on the phone to my Mum.

'I don't think the money will be a problem,' I said. 'It might even be an option to take half the trip and then if she passes, I can make my way home.'
'I think you should do that,' replied Mum. 'The truth is, we don't actually know how long she has left. It might be hours, it might be weeks. And I've spoken to Dad. To him, it's more important for you to be at the funeral than at her deathbed.'
'Are you sure? I feel the need to be at her side. It doesn't feel right to go off and have fun instead.'
'Like I said, it's more important to us that you're at the funeral. We usually have the funeral about five days after the death, which means you'll have plenty of time to get home. It's what she would have wanted.'
'Well... Okay. I'll go.'
'Stay safe Michael, I love you.'
'I love you too.'
I tucked the dreaded situation into the back of my mind and let excitement flood back again. We got onto the plane left for what would be a very big moment in my life.

Twelve hours later, sitting in my hotel room with the others, having worked out how to activate my new Singaporean SIM card, I called home to let my family know I was safe. The phone was on speaker mode and the others could hear the conversation.
'How's Grandma?' I asked after a while. There was a long pause. Then, through a cracked, wavering voice, my Mum replied
'She's gone.
My friends' grins dropped at the news and I hurriedly took my phone off of speaker mode out of respect for them. I didn't want to bring them down their holidays as well. Apparently she'd crashed shortly after our departure from Adelaide. It wasn't very complicated - her body just gave up and she couldn't be revived. I'd just arrived in Singapore, but now I'd immediately have to make arrangements to get back home.

My Dad agreed to hold the funeral off an extra day so I could enjoy the time I had planned for Singapore and then just fly back home instead of continuing on to Thailand. I had a real blast in Singapore, but it was slightly soured by the constant, frustrating phone calls I had to make over the course of five days to arrange a flight back home in a way that would suit the insurance company. One time I even finished a phone call while setting off on a ride in Universal Studios, trying to hear the travel agent's voice over the loud music and rushing water. But I eventually made it. I arrived home on the Saturday morning and attended the wake that night. At the funeral the next day, I was given a eulogy that my Uncle had written, but was too self-conscious to read out. It may have been the fatigue, or the guilt, or just the combined emotions of everyone in the room, but when I got up and read the eulogy out, it hit a lot of nerves. Many people approached me afterwards to congratulate me on such a moving speech.

I don't regret getting on the plane. My family and I came to that decision together. It would have been nice to be with my Grandma at the last moments of her life, but like we agreed, when didn't know when those moments would come. It could have taken her another three days to finally pass, and no one would expect us to stay there for that long. But I'll always feel a sense of guilt about it. No matter what anyone says, the guilt will be there. It's just something I live with now.

45 comments:

  1. That's a tough call. She had people with her though. She might not have known you were there. You were home in time for the rest of your family and that's what matters.

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    1. Yes, I agree. It's hard to remember that should wouldn't actually know what I'd done for her. But I wonder if that changes the matter.

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  2. Oh Michael. Such a hard time for you all. At least she knew she was loved. And you did come home for the family, who needed you more than she did. Which sounds harsh, but isn't meant that way.

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    1. No I understand. You're right, I came home early because the family needed me.

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  3. Michael, my love, I understand how you feel. I've been there. Guilt can eat us up, and it does no good. I've also worked in a nursing home. I admired the families who took their loved ones home for as long as they could, but sometimes the patients returned to us or they died in a hospital instead of being with us, who knew them and cared about what happened to them. You did the best you could. It's amazing that you were able to handle her medical needs. Very few people can do that. I congratulate you and your family for your efforts and send you my best.

    Love,
    Janie

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    1. That was a peculiar problem in this case - the care workers believed they could give better care than we could, which in a medical sense was true. But they couldn't quantify the benefit that being with loved ones would give her.

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    2. Absolutely! When I worked in the nursing home, I loved all my patients, even the grouchy ones (I think I loved the grouchy ones even more because they needed it), but I was always so happy for the patients whose families visited every single day without fail, and especially the families who took our patients home. Sometimes, though, they returned because the families couldn't handle the medical care. You and the rest of your family did amazing things. I applaud you. I've felt guilty about a number of events in my life. The guilt has eased as I've aged and realized I did the best I could.

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    3. This comment has been removed by the author.

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  4. Michael, sometimes it is just a matter of accepting the guilt and not continue to beat yourself up forever. You did the best any grandson could have done and that is spent the Thursdays with her while she was alive. I think that showed a level of selflessness you need to recognise, and hopefully find a way to reconcile the guilt. Thank you forsharing your reflection.

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    1. Absolutely, I recognise that. At her funeral we shared a moment to congratulate ourselves for handling her downfall the way we did.

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  5. Every family is different. Being possibly a little older than your parents and a caregiver, I'm glad you took your trip. You did what needed to be done by showing up on Thursday and being her caregiver. It is important to be of service when people are alive.

    Your staying home for her passing did not enhance your grandmother's life. A funeral is closure. But I don't think attending the funeral is as important as many would insist. It is what you did when she was alive that mattered.

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    1. I think if I was in her place, I would have been glad my grandson took the trip.

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  6. Really difficult decision. Such a hard subject as everyone has different opinions of respect and "right thing" to do. Easy for people to say just "do this/that" but until your in that situation it's 1000 times harder to make that call. I stand by your decision.

    Lydia

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    1. Totally agree. Often when you're in the moment, what seemed right from the outside doesn't feel right any more.

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  7. Michael, such a sad situation. I totally respect you and your family for loving her so much and caring for her on your own as long as you all did. I'm sure she appreciated it immensely.
    I think you made the right decision. She would've wanted you to go experience the country and have fun. She was well aware of your love. Of that there is no question.
    The guilt: oh, the guilt. Guilt is such a tough emotion...and usually a useless one. With death there is always some measure of guilt and I think that's just one of the side effects of it.

    Thank you for sharing your story. It was very moving.

    Michele at Angels Bark

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    1. I'm glad it was. Maybe it can help someone make a similar decision in the future.

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  8. First of all I'm really proud of you for writing with such honesty. I couldn't bring myself to blog about my brother's death. Secondly, you're obviously a very loving grandson and a wonderful family to have done so much to try and keep her happy and out of the home. And because you are so caring you're always going to live with that sense of guilt, that belief that you didn't do enough. If you use your logical mind you will see that you did the most you could have. I think you and your family made the right decision about your going on that trip. Glad you made it back for the funeral. I wish you would continue hosting the blog hop. Thank you for writing such a moving blog post.

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    1. Thanks for that K. I'm sure the hop can survive. Maybe I could even keep running it without participating.

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  9. An incredibly hard choice to make. If if had been me, I would have wanted my grandchild to go on the trip. It was amazing that your family worked so hard to make her comfortable during those last months.

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    1. Yeah most people have said they'd want their grandchild to go. That's comforting.

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  10. Having been through a situation somewhat similar with my grandmother (but I couldn't even get home for her funeral) I sort of understand what you went through. Continuing to live while a loved one is dying or has died, can be difficult. But that's life, Michael, it what we do. We go on living. None of us should ever feel guilty for that.

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    1. I'm sad to hear you couldn't get home for the funeral. That would have been so hard.

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    2. The thing is, within days of her death (and I mean this literally) I was in a very dark place -- not just because of her death, there were several other things going on with me. And when I was at my darkest and seriously thinking of ending it all, nothing less than a miracle happened and I believe she came to me to pull me up and set me on the right path. One of my cousins (a Viet Nam vet) went through a similar experience where she came to him at his darkest moment. So, in death she was able to rescue two of her grandchildren, something she wouldn't have been able to do had she lived.

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    3. That's an amazing story. And I've only gotten half of it :P

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  11. I think you did the right thing. Your family sounds very close. If I were your grandmother or parents, I would have wanted you to take your trip. Sorry for the loss of your grandmother.

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    1. Thank you. She's survived more hardship than a war veteran, so we viewed any time we had with us as a bonus.

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  12. It was a tough call. Life has to go on for the living, but then you have the situation of what others will think and how your decision affects them. Probably best to let to of the guilt, but I know that's not always as easy as someone saying it who didn't have to deal with it.

    Too bad you can't keep this blog hop going on your own, but I realize that some things are more important that blogging stuff.

    Arlee Bird
    Tossing It Out

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    1. It's okay, the guilt is alleviated by the fact that I know I made the right call.

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  13. My mom has dementia so I do understand what you and your family went through. You are very lucky that the entire family was able to do shifts and be able to near her each and every day. All too often the elderly do not have this support either because the main caregiver is just 1 person or they actually have no one to help them. I work F/T and my hubby is home but has his own disabilities. In my mom's case, she can still talk but she was a smoker who almost burned my house down. I really struggled with having to place her into long term care. I ended up getting very sick and almost had a breakdown because i felt horrible. She was down to 79 lbs and was so very accusing. Now she is a healthy 130 and although her memory is fading every day, I believe, if she would have stayed home, she would have died. In my own experience, having her go to long term care was the best thing but I did not have the support that you had. You made the right choice and can say that you and your family gave your all. You also needed to take that trip...it was not a want but a need and you have to make that choice. Even if it was a very quick trip and you had to return, those few hours were much needed, I bet. It helped you get through the next few days. You will have an even better understanding once a few years pass. The main thing is she was cared for, loved and all of you did the utmost you could. This is a silent heroism that few think of as heroism....but it is.

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    1. Thank you. I'm sorry you found your situation so hard, but it sounds like (like us) you handled it as best you could.

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  14. Wow, that's a tough one. There's no real right or wrong here because your heart is in the right place. You were there for your grandmother when she knew what was going on and, later, you were there for your family. You did the right thing by living your life. If you didn't feel some unease about it, that would be truly sad. That's what makes us human; the fact that we feel pain because we can't do it all and be there for everyone all the time.
    I mean this to be positive an hope that's how it's coming off.

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  15. This chocked me up and it was something that in some ways I can relate to, my grandmother is in a nursing home she is 95 and it is a worry whenever someone goes away on holiday that she will die why we are away but we can't put our lives on hold as she could live for another 5 years or die tomorrow, she has this growth on her ear and at her last birthday the doctor said when it appeared they didn't do anything about it because they didn't expect her to live much longer that was 3 years ago. She has had Alzheimer's for the last 17-19 years

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    1. Your grandma sounds similar to mine - constantly defying the odds to survive everything life throws at her.

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  16. Wow, that was a tough call, and I can understand how you'd feel guilty, even if your family agreed you go. As cheesy as it sounds, I think those Thursdays you spent with your grandmother mattered to her way more than you being at her bedside while she was unresponsive.

    Those homes, btw, are the worst. My grandma is 93, had a pretty bad fall, and had to stay in a care facility earlier this year while her arm was healing. They absolutely insisted that she stay there, and tried to make us feel like she was completely incapable of taking care of herself in any way, and also implied that we were reckless if we didn't do it. They treated her like a child. What's more, it would have required us signing EVERYTHING over to them, even her HOUSE. That doesn't even make any f***ing sense.

    Ultimately, we gave them the finger and she moved in with my black family (if you ever saw that hilarious post) and they've been taking awesome care of her. And she's happy as can be.

    Long story short, your family rocks for being 'crazy' and not taking the easy way out by shoving your grandma off in some home to be ignored and depressed.

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    1. Her home?? That sounds SUPER dodgy, allow me to stick the finer up at them from here.

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  17. There's no "right" or "winning" or even "best" thing to do when a loved one is dying an agonizing death. None, Michael. My brother was by my Dad's side until he took his last breath. I didn't make the short flight home until it was time for the funeral. I'm sad about the whole thing. I don't feel guilty, just grateful to my brother. That's not to say that I don't have great respect for you. Guilt happens out of love. Ideally, guilt softens in time to regrets - which are more gentle and human and easier to deal with. Warm thoughts, condolences, and may loving memories ease your pain in the days ahead.

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  18. Tough choice to make! You and your family did a wonderful job caring for your grandmother. She was well looked after at the end and there was nothing further you could have done for her. I think taking that trip was the right decision, otherwise, you'd be filled with regret later. Sincere condolences for your loss.

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    1. Yeah the regret would have far outweighed the guilt.

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  19. So sorry about your grandmother. I think you were a loving grandson to her. I think it was a good decision to make your trip. I don't think you should have any regrets about it.

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    1. Thanks Sherry. I definitely don't regret it, but the guilt is still there.

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  20. I hope this finds you and yours doing well. May we display your header on our new site directory? As it is now, the site title (linked back to its home page) is listed, and we think displaying the header will attract more attention. In any event, we hope you will come by and see what is going on at SiteHoundSniffs.com.

    ReplyDelete

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