Shit Storm

Posted on by Harlon

My mother was being extremely difficult this morning.

As hard as I was trying to reassure her, she was fighting me,

every word I said.

She is anxious and scared and has every right to be.

So do I.

My friends are all saying take care of yourself

and hope that I am finding the support I need.

I would give myself a B+ at taking care of myself

and I have no fucking clue what it means when people say

“I hope you are finding the support you need.”

Caregiving is difficult, especially when you are not just

visiting and caring

but actually living the experience with them,

actually giving care 24/7.

It doesn’t even feel like caregiving sometimes.

It feels like I am just watching her decompose.

I wish someone asked me what do I need?

What could someone do to actually help me out on a practical level?

What might make things a bit easier for me?

But they don’t.

Because they don’t know what it’s like to actually BE HERE.

It’s probably better off for everyone if they didn’t.

I want to be good at this, and everyone to feel fine with this,

everyone but me.

69 thoughts on “Shit Storm”

  1. Amazing post! Not many individuals out there understand what it actually feels like to take care of your parents/grandparents. Not just take care of them, but live with them and experience every moment together. It’s a tough task; you have to devote a lot of your time, energy, and love. It’s not only about you anymore, but about them as well. But in the end, it’s an amazing experience, one that definitely makes you proud for being the person you are!

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    • Thank you, what a great comment. II agree it is an amazing experience, a choice I made that I will never regret. There are certainly times where I feel tested, but it is a rich experience to be guided by love and caring. Peace, Harlon

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  3. Wow, I haven’t had a chance to catch up on your beautiful words lately as I’m currently a caregiver for my Dad and just recently, for my Mom. Your words are resonating and the comments left echo what became clear for me, I do need to take time for myself, to realize that this is new terrain and we are all learning as we go. It helped to share my worry and fatigue with a dear friend, in doing so, I also feel more calm and grounded. My thoughts are with you both and I hope that you will find joy in the loving as well as in the caring…

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  5. My soul goes out to you, dear friend 💕💞. I can only imagine what it’s like to walk in your shoes. There probably aren’t words in written/spoken language to describe it. You help me to see it, though. The most beautiful writing often comes from places of pain, that much I have experienced. I sincerely hope you are able to get a break to take care of You and re-center yourself, whatever that may mean to you and however it may benefit you 😘. Sending you warm vibes of strength and hugs. I may not know what your shoes feel like to wear, but I’m more than happy to walk beside you, even hold your hand whenever you like, even if it’s through these ones and zeroes known as computer circuits 💓💘💓💝🌷

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  6. Perhaps just knowing that you are heard will lift you up for a moment. I hear you and through my own experiences i get this. Unfortunately, no-one to truly good at this…I think I took it this way…I can do what I can and it will never be enough…I lived with that and just kept on trying…frustrating and empty. Taking care of yourself…only you know what that is…and once you figure it out spare no means to get it. You are a good person.

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  7. No one is good at what ypur going through. 😑it is quite the struggle. I do believe in you. You’ve always been impressionable. I think you got this. If I was closer I’d gather all our nearby WP friends and Get you out for a while to take the edge off 😐

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    • It would be fun if we were closer and we could go for a coffee and a stroll.
      You are right, for me writing this post , in itself is an act of taking care of myself. It’s also incredibly helpful the comments I get. I like what you said that “no one is good at going through this” and I found comfort in that. I don’t need to hold myself up to any standard, I can only do the best I can.
      xo Harlon

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  8. So many good suggestions here! I’m glad you wrote about this giving people a chance to share ideas and experiences. When people say they hope you’re getting the support you need, you can respond honestly by letting them know that you’re not and what you need and asking if they can help. Take those questions you want to be asked, (what do I need? What could someone do to actually help me out on a practical level?What might make things a bit easier for me?) and brainstorm the answers on paper. Then ask your friends, your mother’s friends, neighbors for help. They might say no, but they might say, I can give you two hours on Saturday. Schedule breaks a couple times per week or more to nurture you and relax. When you’re with your mom, remember the good times. My dad used to love to tell stories about the old days. Maybe your mom will do that. You could even share some stories here if that helps. Big hugs coming your way!

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    • Dear JoAnna, I love how you picked up on all the signs of a trail I was leaving so I could find my way back and keying in on how to illuminate my path forward.
      I read your message over a few times, simply because you made me feel better.
      That is what we can do for each other.
      Eight billions hugs, Harlon

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  9. Take care of you for giving your loving strenght to your mum. Keep Time for something good for you. Ask help from friends or Family or nurses (i don’t know how works your medical system..) take moments for breathing.
    I’m so far from you, difficult to give you more than words. But you have my sweet thoughts and love, hugs and blessings for you and your mummy. Praying for you both to get peaceful mind. Kiss for you.

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    • Your thoughtful attention to my post and your gentle words are helpful. They make me feel connected and grounded.

      Since I’ve written this post, I’ve gotten much better at asking for help – and that does help.

      No matter what, I will never look back at this time in my life and say that I have regrets – and how many of us get a chance to say that about our lives.

      Bises,
      Harlon

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  11. You are a great son for taking care of your mom. I also took care of my mom and when she passed, I had peace in my heart that I did everything I could for her. Looking back now, as difficult as that time was, I wouldn’t of done anything different. As everyone has expressed, take breaks if you can, it really does help immensely to recharge. I will pray for your and your mom.

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    • The great thing about blogging is how people can give me some fresh insight into something that I may feel stuck in.

      Taking time for myself, I am now realizing – thanks to your comment and others – is very important for my well-being and for my Mom’s.

      Thanks for shining some light on my path..

      Peace, Harlon

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  13. It’s a great sacrifice looking after someone, especially a love one, your mother, for 24/7. What you are doing is not easy, it’s thankless, it’s humbling. I’m humbled by you Harlon. If only I was closer, I’d be there in a heartbeat. Tell me if there is anything I can do x

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    • Thanks for commenting Rosaliene. I feel like I am just doing what is the right thing to do, and as difficult sounding as this post sounds, there are the moments of joy that I share with my Mom as I get to know her as a person, and learn about her history. The world has changed so much in her lifetime, so her sensibility and perspectives are refreshing.

      I do also think you touched on an important issue, that is sensitive for a lot of people, but it is about dying with dignity rather than keeping people alive just so they suffer.

      There is so much in this world I think we could be doing better at, and dying and death is one of them.

      Much love, Harlon

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  15. Harlon, I remember in one of your older posts seeing a photo of your mom and she has the warmest most contagious smile. ❤
    For some of us, who are more introverted and need alone time, living and dedicating ourselves to someone 24/7 can be especially difficult. I am not sure if it would be helpful or not, but had you seen/read any of the work by Stephen and Ondrea Levine? They reveal the richness that hides in illness, care-giving, death.
    On a practical level, when things get tougher, ask a local friend if they can start a meal train or caring train. It is amazing what people do when we just ask.
    Hugs,
    Kristina

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    • Dear Kristina, thank you for many things, mainly for being you but also the extra nuggets you added in your comment. Thanks to referring me to the work of Stephen and Ondrea Levine? I do believe and I do feel the richness lives in illness, care-giving, death. For me, it can get corrupted by our healthcare system or by stress so I will check them out.

      Since I’ve posted this, I’ve done a lot of asking for help, between you and me, the response has been disappointed, I guess people are uncomfortable with death or this is how you know who your true friends are. Anyhoo, everyone has “busy” lives these days and I won’t judge anyone, but you are right – it is amazing how some people just step up to the plate.

      Like you!

      xoxo Harlon

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  16. Been there. Multiple times. Family by blood. By choice. By marriage. It’s a horrific place to be!! It’s sickening to see how little people know about caregiving. Chronic illness. Or how little they show up if EVER. I am now sick from taking care of everyone else! So don’t wait for someone to help you. You must actively seek out help. When she’s resting. Set up days. Get a therapist. Or a cna to be with her. Once a month. For three full days. Get away!! Relax. Slept. Swim. Then at least two days a week. Get away. MassGe. Lunch out. Visiting friends. 1-5. You must find a way to build strength. And not be responsible for every breath she takes. Please seek time away. She needs that. And so do you!!!!

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    • Thanks, and thanks to all who read this, I appreciate the very practical advice people are providing from the kindness of their heart. Like I said in my post, I think I am doing a B+ job; I do see a psychiatrist just so I can talk, I treat myself to monthly messages, at the end of the day when I have some time to myself, I sit in the zero gravity chair in the backyard and look at the stars.

      There was one point that you made (well you made many actually) but one really resonated with me:

      Please seek time away. She needs that. And so do you!!!!

      You are right, we both need that, and so it shall happen. Thanks so much for making this part of my life better.

      xoxo Harlon

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    • I agree Val, and I am learning to put practice into purpose. It’s amazing how a change of scenery can recharge the batteries and renew the mind and body. Much love, Harlon

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  19. Harlon, I can relate as well, because I was the 24/7 live-in caregiver for my Dad for 3 and 1/2 years.

    Yes, you need a good and well deserved break – not just one break, but many for the future as well – a plan on how you get to get away from it all.

    Here is what I did, what I can think of for now, (and I am not writing in social work speak, but in my own ‘Randy’ speak) :

    • I booked family members to take over the caregiving – they stayed over for 3 to 5 days and I got away – this occurred about once every 2 months – I was lucky to have 4 siblings who could help – they agreed to the importance of why I was helping our Dad – so, it was not easy for them either – at times they had to take vacation days from their work and drive 8 hours to replace me. This required planning, coordinating, detailing and, at times, persuading.

    • Do you have any help from your area’s CCAC? I know they can be a real pain to get any coordinated assistance, but when it is set-up, it can be very beneficial. My Dad was not keen on the idea at first, but after a few visits, with me there too during the initial visits, he got to know the helpers and started to look forward to their visits. Personal support workers are supposed to be in the home to do work, physical labour type of work, but often they provide a social time for those needing assistance – so often they’d do their work and then they’d chat or play cribbage with Dad. At first, we only qualified for 2 hours per week, but by the end, we had 6 hours per week. It would have increased more, but Dad never got to the palliative care stage and dropped from a heart attack/stroke just as things were getting really horrible.

    • I booked myself into volunteering for 2 hours per day, twice per week, at our local museum. During the last few months of Dad’s life I had to almost stop volunteering because things became so bad, but until then, it provided me a small break and a reason why I had to leave the house.

    • The neighbours also helped. They liked my Dad, and became close friends. We’d plan it out. When I was volunteering at the museum, they’d often drop in for a coffee with Dad: providing him with some social time, me with a break, and they’d be checking in on him.

    • During the last 6 months or so, Dad was getting all mixed-up with some sort of dementia, but even so, I got him to agree, (with my siblings full knowledge and support), to use his money and privately pay someone to help, (I think it was $15 per hour). They would be there to cover me when I had to go out and do some run-around, or volunteer, or whatever. I think for about a 4 hour stretch at a time, at about once per week. We actually hired one of the personal support workers from the CCAC’s agency – that is a no-no – but they turned a blind eye. (Just wondered where that saying came from, ‘blind eye’, and then laughed, because Dad was blind in one eye.)

    • I was looking into respite care at one of our local long-term care facilities. This was coordinated via the CCAC. Dad, of course, was not too keen on the idea. But, my nerves were getting pretty shot to hell, and with very little sleep, I was at the point of needing more help. After 3 years, my siblings were also still helping, but they were kindly saying, “you can’t keep doing this Randy, he is getting worse,…”. Thus, respite care was the next option.

    • Almost every night, I’d set Dad up on the tv with whatever shows he wanted to watch. I’d either watch the shows with him, or go in the next room and do internet/emails or something. I’d be within earshot if he needed help, yet kinda getting a break from him at the same time.

    The main point, is that you need to take care of yourself somehow. And, unfortunately, ‘taking care of yourself’ does not mean to the extent as if you were happy-go-lucky, single, 30 year old, having a great time living in a downtown city. It means, taking enough care of yourself, for now, that you can get through this part of you and your Mother’s lives, without your health going way downhill too.

    Lastly, (and tears are starting to form as I think of this), taking care of my Dad was by far the hardest thing I have ever done in my life. Hands down. But, I know I made my Dad’s final years much more comforting. It was so rewarding in so many ways – for both of us. I don’t have children, so I don’t know what it is like to raise kids, but, I was happily surprised when my sisters said that raising kids does not compare to being the live-in caregiver. I think it is my most worthy accomplishment in life. Although it was never on my bucket list, it is now a huge check off the bucket list. On my death bed, I will be able to smile, content in knowing I was a good son. (Not perfect, because I fucked up at times, but I tried my best, and overall, I know he lived a better last few years.)

    I hope the words above do help. I gotta go. Life is extremely crazy right now. Can’t sleep. I’ve been up since 4 am. It is not all bad, just tons on our plates right now, and should settle in about a month. I state this on purpose, because, even though I am stressed right now, writing this piece provides me a break from my worries – a productive and useful break, where I hope to be helping someone else. Two hours ago I was having my own little freak-out, but I feel calmer now. Who knew?! So, thanks for the therapeutic blog.

    Take good care of yourself Harlon,

    Randy

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    • Thanks Randy & first of all, it was a wonderful treat to hear from you and to have you chime in. You’ve given me a lot of great advice, some of which I am now putting into practice, others just haven’t been practical (dealing with CCAC just makes things worse), but I agree that getting family members to step up (even assigning them chores) and also doing things for me – just taking a break makes this process easier and then I can celebrate this part of her life rather than be tired, anxious and cranky. Honestly, I don’t know what I would do with Netflix. It’s a great way to check out for the evening.

      You’re a gem, and I miss you.

      xoxo Harlon

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  20. Give me your permission, your address and phone number and I’ll drive over. My wife is asking me to leave, so I’m free. My old car can get me there, probably. Not sure what I can do, but you can use me.

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    • Thanks, and I agree, unless you’ve walked in these shoes it’s hard to fully understand, not that I wish that people walk in these shoes, but I have always been steadfast that by sharing our stories, we learn and we connect.
      Peace, Harlon

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    • Thanks Derrick, it’s a difficult time, but it’s part of life, and I think being real about it will help me as a person. I’m glad I am here and it’s nice to feel that I am making a positive difference in the life of someone who has been so wonderful for me. Yes, a difficult time indeed, but somewhere in it, exists love.
      Cheers & maybe have a Kingfisher for me tonight 🙂
      Harlon

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  23. I have been there
    Most times you’re
    Not talking to them
    You’re talking to their
    Disease,you love them
    And you want to do
    Right,but there isn’t a right or wrong
    Just love
    The most you can try
    To do is make her comfortable
    This is a hard core fight you
    Are in the middle of
    At this point
    The best is what you
    Are already doing
    Hang in there Harlon
    As Sheldon Always

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  24. Harlon, I have been in your situation with both my parents years ago. It is difficult and burn-out is real. If there is a Visiting Nurse Service in your area or Home Care workers that would help ease the burden. Even something like Catholic Charities or The Salvation Army which does offer these type respite services in New York. I wish I could do more for you. Fortunately in my case both my maternal and paternal aunts came to help me so I did have some family support. My prayers are with you.

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    • Thanks for your kind guidance. I am learning who to ask for help and when and how. Unfortunately, in-home palliative care support services supported by local agencies tend to create more stress rather than make things easier. I do think just talking to someone helps a lot, and turning to my faith and getting spiritual guidance might be a nice move for me.
      I appreciate your help keeping me on track 🙂
      Hugs. Harlon

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  27. Oh dear Harlon…it is not easy being the sole care giver. You need a break too. Garfield hugs and do try to get an integrated care agency for help even if it is for a few hours a week. Blessings and strength sent virtually to you Harlon💕

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    • Thank you. Sadly, we don’t have things like integrated care agencies in Canada. Boo! Hiss!
      It really is the emotional challenges more so than the physical, and our healthcare system is dictated by the pharmaceutical industry.
      More boos and more hisses from the studio audience. Thanks for reaching out, it means more to me than you know. 🙂 Harlon

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  28. I know what you are going trough. I was a caretaker for my father who had lung cancer. It does take a toll on the body being tired and more so on the spirit. One can feel helpless watching them into their descent of health and feeling powerless to do anything. It is much more than that. Do you have anybody that can take over to give you some free time? If I didn’t live out west I would off my help as I said I know what you are going through. I am going through it with my sister as well at the moment. I know to ask for help now even if it is two hours away from the scene or longer. Sending you strength.

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