Need help planning for this

wesleybeal
wesleybeal Member Posts: 4
in Caregivers #1

Hello,

My father was recently diagnosed with stage 4 lung cancer. I'm staying with him and my step-mother for a couple weeks now, and more down the road.

So far he's doing great. Generally very positive, and still getting about, doing his normal things.

I'm trying to prepare for what we'll all need to be able to do once that's no longer the case.

My step-mother has had some small strokes, and isn't able to really be independent anymore, let alone take care of my father (it's been the other way around for a while now), so family members such as myself will be stepping in, insuring that things and people are taken care of.

My problem is this:

I have no flipping idea what to get ready for.

While my father is remaining very positive, I'm taking responsibility, quietly, for preparing everything that needs to be prepared from the most pessimistic of outlooks. I want to be prepared, and have as much figured out and taken care of a head of time so it's less stressful for him and the rest of the family when / if we face whatever it is the future holds.

I've got something of a grasp on the financial side of things, at least in terms of what needs done. Also clear on advance care directives, durable power of attorney, and that stuff.

What I don't have a clue about is the needs at home. What will be required to maintain a daily life? Are there supplies I should be looking at getting? Will there be bathing needs?

What do I need to make sure that I, or whoever is staying with him at the time, know how and are capable of doing?

Any help / information would be enormously appreciated. I'm finding no answers anywhere to this sort of thing, and would feel so much more relieved if I at least knew we were prepared to handle whatever comes, from a material / knowledge standpoint at least.

Thanks,

-Wes

Comments

  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    #2
    Individual needs

    They vary so much.

    I understand your question but I believe you will just have to take a deep breath and take this a day at a time.  Talk to your parents and ask about the kind of help they believe they need.

    Buying groceries and running errands, rides to appointments, going out to eat or attend family functions are all needed.  Get help, though, and don't try to do it all yourself.

    Others will respond with more specific information.

    Remember to take care of yourself.

  • wesleybeal
    wesleybeal Member Posts: 4
    #3
    Noellesmom said:

    Individual needs

    They vary so much.

    I understand your question but I believe you will just have to take a deep breath and take this a day at a time.  Talk to your parents and ask about the kind of help they believe they need.

    Buying groceries and running errands, rides to appointments, going out to eat or attend family functions are all needed.  Get help, though, and don't try to do it all yourself.

    Others will respond with more specific information.

    Remember to take care of yourself.

    Thank you

    Thank you so much for taking the time to respond.

    Even though as you say your information is very general, it's so nice to hear someone just acknowledge I'm asking a question!

    I think my anxiety comes from - well, besides everything else - comes from not having had to care for someone who is unable to care for themselves before.

    My wife and I chose not to have kids, so I don't even have that experience to fall back on.

    I don't know if it is likely my father will be at a point where he is entirely unable to care for himself, or just needs some extra assistance, someone to run errands for him, that sort of thing.

    I wish someone could tell me: "In general, patients' energy levels are low, but they are otherwise functional." Or, "In some cases, patients are unable to eat/use the toilet/bathe themselves without assistance."

    Knowing the range of possible scenarios helps me to plan, understand what I need to know how to do, and prepare other family members for what they may need to do.

    Then I need to learn what sort of care those scenarios entail. As I tried to explain to someone yesterday, I've picked up from watching television that bed sores exist, and people restricted to bed need to be moved. But I don't know how often that has to happen. And worse, I only know about this one thing because it's been said on some television drama somewhere. What don't I know to do?

    So right now, while things are potentially much less stressful than they may turn out to be later, I'm attempting to anticipate what might be necessary to be able to do down the road. Figuring out how to have the financial, property, and advance care directive stuff sorted out is surprisingly easier for me to cope with!

    Astounding how hard it's been to get any kind of answers to this.

    Thanks for listening to me vent here for a bit.

    -Wes

     

  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    #4
    wesleybeal said:

    Thank you

    Thank you so much for taking the time to respond.

    Even though as you say your information is very general, it's so nice to hear someone just acknowledge I'm asking a question!

    I think my anxiety comes from - well, besides everything else - comes from not having had to care for someone who is unable to care for themselves before.

    My wife and I chose not to have kids, so I don't even have that experience to fall back on.

    I don't know if it is likely my father will be at a point where he is entirely unable to care for himself, or just needs some extra assistance, someone to run errands for him, that sort of thing.

    I wish someone could tell me: "In general, patients' energy levels are low, but they are otherwise functional." Or, "In some cases, patients are unable to eat/use the toilet/bathe themselves without assistance."

    Knowing the range of possible scenarios helps me to plan, understand what I need to know how to do, and prepare other family members for what they may need to do.

    Then I need to learn what sort of care those scenarios entail. As I tried to explain to someone yesterday, I've picked up from watching television that bed sores exist, and people restricted to bed need to be moved. But I don't know how often that has to happen. And worse, I only know about this one thing because it's been said on some television drama somewhere. What don't I know to do?

    So right now, while things are potentially much less stressful than they may turn out to be later, I'm attempting to anticipate what might be necessary to be able to do down the road. Figuring out how to have the financial, property, and advance care directive stuff sorted out is surprisingly easier for me to cope with!

    Astounding how hard it's been to get any kind of answers to this.

    Thanks for listening to me vent here for a bit.

    -Wes

     

    Have you looked

    At the information sites for cancer information and caregivers right here on the American Cancer Society website?  I find it is very useful.

    There is a lung cancer discussion board.  Visit there and I'm sure there will be a lot of good information.

    If and when you ever get to the before stage you will want to consider home health care.  

  • wesleybeal
    wesleybeal Member Posts: 4
    #5
    I have found this page to be

    I have found this page to be helpful:

    http://www.cancer.org/treatment/treatmentsandsideeffects/physicalsideeffects/dealingwithsymptomsathome/caring-for-the-patient-with-cancer-at-home-toc

    I see a need in the world for guidance for people that find themselves having to take care of someone, or in my case, getting prepared in case I have to take care of someone that is unable to care for themselves.

    Sort of a Dr. Spock's guide for grown-ups.

    This morning I feel I am reconciled with the fact that I just won't be able to anticipate all needs, and will have to ask people as things come up.

    I feel very lucky that some things that others find extremely difficult I'm dealing with alright. I've accepted and am at peace with what ever the result of his fight turns out to be. I can't "save" him from this - all I can do is provide support, and do my best to make sure this period of his life is the best it can be. I can compartmentalize well, and be there for him when I need to.

    What I find more difficult is working with other family member and friends grief and anxiety. I'm spending all my resources on him, and don't feel very good at assisting others yet, especially my step-mother.

    But I'm getting there.

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