Home Forums For Caregivers Only First Post – Stage IV Forum

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  • #21004
    wcacoustic
    Participant

    Hi there, I got some more info from the doctor so just posted in the Stage IV forum under “Chemo Started – Ipi to Follow?”. I hope you all are well and not experiencing anything like the dark, wet weather we are getting around Vancouver. I seriously think I would prefer snow at this stage!

    Looking to go half-time at work to free up my schedule more to assist Dad. Between my brother and my schedules we should have good coverage. The trick is to keep Dad motivated, this is his journey and I don’t want to overwhelm him with ownership but like most people he is comfortable with routine and old habits, even though they might not be the healthiest or most helpful. Caregiving sure is a balancing act, trying to keep the mood light, the loved one motivated, and the latest and greatest information at our fingertips. My respect to you all :)

    Aaron

    #59017
    zephyr66
    Participant

    Hi Aaron,

    Yes, it is a juggling act for sure. Trying to do so much, but not too much and never take away from the person we love. I so hope your dad fights hard and the treatment works. Glad you are part of the forum. Take care of yourself. Glad your brother is able to help out.

    Sylvia

    #59018
    DadZGirl
    Participant

    Hi Aaron,

    Good to hear from you. Not sure if it helps or not, but in caring for my Dad it has been very important for him to keep even his smallest routines like coffee in the morning, breakfast by nine, nap time at 1pm. We find he does better if he stays on track with his routine. We just let him live his life the way he wants to as much as possible, bad habits and all. What has been important to him seems to be the little things, he doesn’t have and won’t make a bucket list. Says he has done everything he has ever wanted to do. We are careful to give him privacy as much as possible and independence as much as possible while being softly in the background, gently suggestive when necessary and supportive of his wants and needs. It has been tough for me as his kid to become his Caregiver but he has slowly allowed me to be “in charge” when I need to be and he trusts my judgement. We are careful to always treat each other with respect. Although there are some habits I wish he would change, it’s simply not worth the fight. For me it’s kind of like driving from the backseat. When there are issues that need to be discussed or decisions to be made we always work together – we let him decide and then we support him. We never protect him from information about his health, we include him. And I always make sure the doctors address him, not me. Dad says I am Technical Support. Find out what is most important to your Dad and how you can help him that would benefit him the most. This will be an ever-changing role and task for you as you move forward. Communication is the key! Best wishes to you and your brother and your Dad!

    #59019
    Catherine Poole
    Keymaster

    Excellent advice! Thanks for sharing this for Aaron and many others on this journey.

    #59020
    Gilly
    Participant

    Great advice DadZgirl – and it applies for anyone I think – not just parents and children – I am a spouse and I think “technical support” is a great title – although we all know it’s a good deal more than that !! All the best to all of you .

    #59021
    abdorma
    Participant

    Laura,

    Such great advice for any of us doing this work but I was particularly taken by how thoughtful and caring you have been in defining your role in your dad’s disease. I think it must be a tougher row to hoe when roles are beginning to reverse a bit. I salute you for doing such a great job of making sure you are respectful of your dads wishes yet making sure he is eating well and taking care of himself the best possible ways.

    He is lucky to have you and we are lucky you are among us with your wisdom. Thanks for sharing!

    ann

    #59022
    wcacoustic
    Participant

    Thank-you all, wise words to be sure! An interesting observation, and not sure if others have noticed this as well, but during this immense challenge I am finding my “inside rational voice” arising with much more clarity. I have been putting my usual “frantic” energy into the background research and preparations however have presented a much more mellow version of myself to Dad, focusing mostly on sharing information and just spending time as a family. Perhaps it takes this type of adversity to strip away the hectic background noise of every day life and bring into focus what is most important at this moment…

    I hear what you are saying about the importance of routine. When I stayed with Dad lots in the beginning I would try not to upset his routine, however I am now staying there less and checking in more frequently which hopefully helps preserve his personal space. It is a bonus that my brother is very level headed and mellow which also helps maintain a relaxed atmosphere. Dad always loves having us around and doing things for him but he is fully capable of doing so much for himself at this point so I believe it is important to have him continue to steer the ship. The important thing is that he knows we are here any time he needs us, and ready to assist even more as his needs become greater.

    Thank-you all for your wisdom and support, it is so much appreciated. I truly hope this email finds you all well,

    Aaron

    #59023
    DadZGirl
    Participant

    Aaron,

    So glad to hear things are working out so well and you are so in tune with yourself! It is especially special that you and your brother can do this with your Dad – all of you together. Thinking of you all 3!

    Laura

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