After the biopsy

malloyproducer
malloyproducer Member Posts: 6
in Head and Neck Cancer #1
Hi all,

Thanks for all the support I've received thus far about my Mom's recently diagnosed BOT cancer, which has spread to her larynx and at least one node. The biopsy came back positive for squamous cell and due to size and spread it's stage 4. Don't know anything form the pathology report about how the cells looked. A trach was placed during the biopsy to protect her airway.

She was to meet with an Emory oncologist Wednesday but is still in the hospital. She really didn't want a G-tube but at 85 lbs and aspirating about anything she eats it's become a life-saving necessity.

Her hoarding is presenting such a major obstacle in her treatment and recovery. She refuses to let me remove a single item from her home without her permission and the conditions there are such that she literally cannot live there anymore - shouldn't have been living there for the last decade.

I found her a bed in a rehab facility Medicare will pay for (at least for 30 days) and she's agreed to go there but wants to return "home" periodically to check on the place and insists on returning there after her days have expired - whether she's receiving chemo or radiation or anything else. Sorry to vent here, but I'm so angry, tired and frustrated.

I've spent most of the last 5 days making calls and sending faxes and email to anybody I thought could help here get a Medicare bed in a rehab facility and a G-tube and she's acting as if I'm forcing her to do these things out of some odd selfish desire to be rid of her.

It's so difficult. And I'm her only living relative. She owns two adjacent houses (her deceased parents' and her own) and can't live in either of them due to her mental illness. Now the cancer comes and I'm scared about that, and even afraid of a positive outcome if it means she returns to that "house" with the rodents and the 6-foot piles of garbage.

So I keep hoping something will happen and she'll allow me to help her clean the place - yet again. Maybe if she's inpatient and undergoing treatment something will click and she'll realize she simply cannot go on living like that. But I kinda doubt it.

Hope the radiation oncologist she sees next week will make her understand the reality of the situation, and the imperative to take better are of herself from now on - or allow others to help.

Thanks for listening/reading. I sincerely hope you are all well and on the road to permanent remission! Lost of love and light and positive energy to everyone.

Kathy

Comments

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #2
    few words
    Kathy,

    Well your situation is among the top most intense and difficult I’ve read. I pray that you are given the strength and wisdom to continue with your Mom’s care. I thank you for your caring words and positive energy, but please take care of yourself and your Mom.

    Heart felt wishes for good fortune, bless you and many prayers

    Matt
  • Ingrid K
    Ingrid K Member Posts: 813
    #3
    CivilMatt said:

    few words
    Kathy,

    Well your situation is among the top most intense and difficult I’ve read. I pray that you are given the strength and wisdom to continue with your Mom’s care. I thank you for your caring words and positive energy, but please take care of yourself and your Mom.

    Heart felt wishes for good fortune, bless you and many prayers

    Matt

    Power of Attorney
    WOW, Kathy, you sure have your hands full. The cancer alone would be enough to handle, but her extra circumstances sure make it rough.

    I don't remember if you mentioned in your other posts, but you must try to get Power of Attorney for your mom. You need to be able to get her out of a bad/unsafe situation and you may need to force the issue. Tough Love is hard, but it would be in her best interests. Do you have any friends that are attorneys and could advise you ?

    I hope you can get some help and wish you and your mom the best.
  • phrannie51
    phrannie51 Member Posts: 4,716
    #4
    Ingrid K said:

    Power of Attorney
    WOW, Kathy, you sure have your hands full. The cancer alone would be enough to handle, but her extra circumstances sure make it rough.

    I don't remember if you mentioned in your other posts, but you must try to get Power of Attorney for your mom. You need to be able to get her out of a bad/unsafe situation and you may need to force the issue. Tough Love is hard, but it would be in her best interests. Do you have any friends that are attorneys and could advise you ?

    I hope you can get some help and wish you and your mom the best.

    WOW....you do have your plate full!!
    One thing I remember when my mom was in a nursing facility, and the 30 day question kept popping up...was we'd move her to the hospital for a few days, and then get a new 30 days started at the facility. Course, she wasn't fighting everything either, she knew we were trying to care for her...but you might be able to look into this "playing with the system".

    I can't imagine having to deal with a hoarding situation...they are so hard nosed about their "stuff"...it's got to be exhausting for you.

    I agree with Ingrid on looking into getting a POA....like Ingrid said, tough love is hard on the enforcer...but YOU know you love her and are working in her best interest, if she knows that or not. Your concience is clear, your motives are clean...it's all because you love her...let that be your lead.

    p
  • jim and i
    jim and i Member Posts: 1,788 Member
    #5
    Kathy,
    My heart goes out to
    Kathy,

    My heart goes out to you during these trying days. Mental illness is so stressful on those who love the person with the illness. She will probably never accept that this is for her own good and that you are not out to harm her. That is probably the hardest thing to endure. You may have to put her in a nursing home during treatment, medicare will pay if the doctor rules her unable to live alone. I do not remember your mothers age but I do not think that matters. I do not think she would survive the home since her immune system will be way down and infection is so easy to set in. Explain to her oncologist her living situation, or her primary care doctor. If they order it she can blame them not you.

    Praying for your peace and your mothers acceptance.

    Debbie
  • katenorwood
    katenorwood Member Posts: 1,912
    #6
    Good thoughts of healing are sent.....
    Kathy,
    One person, to do the job of many. Oh girl, I think that getting (POA) is a good start, but does your state have state people that could step in to help. Can't believe I said this, like to keep things in the family myself....but with your Mom's many health issues you need extra hands. Have you talked with any hospital or clinic social workers...believe it or not that is why they are there. Take a breath, and please take care of yourself...thinking of you Kathy, and praying all will resolve soon ! warmest regards, Katie
    Forgot to add Kathy....my prayers go out for your Mother too...!
  • Mrs. Sarge
    Mrs. Sarge Member Posts: 206 Member
    #7
    jim and i said:

    Kathy,
    My heart goes out to
    Kathy,

    My heart goes out to you during these trying days. Mental illness is so stressful on those who love the person with the illness. She will probably never accept that this is for her own good and that you are not out to harm her. That is probably the hardest thing to endure. You may have to put her in a nursing home during treatment, medicare will pay if the doctor rules her unable to live alone. I do not remember your mothers age but I do not think that matters. I do not think she would survive the home since her immune system will be way down and infection is so easy to set in. Explain to her oncologist her living situation, or her primary care doctor. If they order it she can blame them not you.

    Praying for your peace and your mothers acceptance.

    Debbie

    Maybe Health Department?
    It's worth thinking about the Health Department shutting up her home until such time as it can be suitable??? As her only relative, I know it's rough, but you have to do what's best for her, as she did when you were young, what was best, tho you didn't understand it, as most kids don't. Role reversals are hard!
  • Tim6003
    Tim6003 Member Posts: 1,514 Member
    #8
    Mrs. Sarge said:

    Maybe Health Department?
    It's worth thinking about the Health Department shutting up her home until such time as it can be suitable??? As her only relative, I know it's rough, but you have to do what's best for her, as she did when you were young, what was best, tho you didn't understand it, as most kids don't. Role reversals are hard!

    All the above...
    I can't add to what's been said exept to say your mom is fortunate to have your care. Prayers is all I can offer ..so whispered one as I read your post.

    Best,

    Tim
  • malloyproducer
    malloyproducer Member Posts: 6
    #9
    Thank you so much
    I am so glad to have found you all. I really do feel so much better having a place to share these concerns and hopes. I'm trying to remain optimistic about my mother's situation, and you all do help tremendously.

    I do have a Power of Attorney over her business affairs, mainly to pay her bills. I do have a meeting with my family lawyer to see if it would extend to cleaning up her house(s) without her permission. It says I have the power to act as her agent, but I'm not sure that would extend to tossing out her things, even though 99% of the "things" are obvious trash. But I am checking, thanks much for the suggestion.

    I've also called a local "hoarding task force" the hospital Behavioral Science Dept. told me about and hope to hear back from them soon. We must have a pretty serious packrat problem in metro Atlanta to have our own task force! I'd never heard of it. so I hope to get some answers from them as well.

    She's still in a fair amount of discomfort from the biopsy and trach placement last Thursday. And she goes into pained spasms anytime they come to suction her trach. I simply cannot imagine her trying to manage something like that at "home." Even if she had a "normal" home. What in teh world to people do if they have no family? Or no medical coverage? I just can't imagine.

    Something kind of funny/bizarre, depending on how you look at it, happened today at the hospital. The GI surgeon tried to install a G-tube and couldn't find Mom's stomach. Not kidding. I know she's lost a lot of weight, but I also feel certain she still has a stomach (!). The doc said that sometimes - when older folks become extremely thin - their organs can shift around and make it difficult to perform these simple procedures. So they're waiting until they can do the procedure tomorrow while guided by a fluoroscope. There's really nothing funny at all about this situation, but I really almost laughed out loud when they said they couldn't install the tube because her stomach had "moved."

    I guess it's good news that she's still willing to get the G-Tube at all, given her resistance. Then she's to be discharged Thursday to a rehab bed for at least 30 days. Thanks for the suggestion about going back into the hospital to extend the Medicare days - I had thought about that as well. It might turn out to be a real necessity - not just working the system - depending on how she does with the radiation. Seems they're going to begin with that, then probably add chemo soon after. We meet with the Emory Radiation Oncologist next Monday for the "treatment plan talk."

    Now that I've settled her temporary living conditions and gotten her to accept the G-tube, I finally have time to actually think about the cancer. It is just so very scary as, of course, you all know too well. Some info from the task force, my lawyer, and her oncologist should help. Sure hope that we can breathe a little easier in days ahead - in all senses of that sentiment.

    Thanks again for you thought, suggestions, concern and comfort. I hope you're all having a wonderful week.

    Love & Light,
    Kathy

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