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Therapist strongly suggested Hospice

KarenMG's picture
KarenMG
Posts: 109
Joined: Jun 2017

Needless to say, I'm blown away and it's not helping me to climb out of the black hole that my Oncologist put me in with his harsh portrayal of my situation. No one can tell me that he could not have sounded so negative and dire. He crushed my spirit. I have felt like giving up and just way more physically sick since I saw him. Even had such a bad night afterwards that I was seriously considered hurting myself in some way. Things have gotten a tiny bit better but I cry a lot and do not want to do anything. I feel more pain and shortness of breath, and night time is horrible.

I had planned on taking a big trip but now cannot get the ambition to go shopping for clothes and etc. Totally fear the whole flying process and that I will get sick. This may be just negative thinking...I DON"T KNOW! I do know that I truly hate him now and never want to go back to him but right now I don't think I have many options. I really do not have anyone to help me make a decision.

As far as Hospice goes, I think it's great as a former Hospice nurse. However, I don't think my therapist would be the one to say that I was ready for that now. I'm pretty sure I would totally give up trying if I started with Hospice. I do have an appt with the NP at the cancer center and could talk to her about all this. I definitely would talk to her about how and why did my Dr speak to me in such a negative and hopeless tone. I do feel like I need more pain meds, maybe something different. Maybe help from the social worker. So far they have offered no help but a support group that they are starting to charge an office visit for. I think that is wrong...

So once again, trying to figure out where to go from here. It really is hard to make a decision when you have no mature adult in your life to help. (My sister has still not even checked on me). My best friend cannot handle it when I tell her things are not going well, so she just bugs out. One thing for sure is that my head is getting fuzzier and I do need some help sorting all this out.

I have not totally thrown out the idea of a big trip but with my anxiety, I'm having difficulty with the whole planning and fear of getting sick and travelling.

It's all a bit overwhelming. I'm just thinking that I need to go do my funeral pre-planning and all that entails. Don't know how I will be able to bring myself to do that!!

Once again, your thoughts would be appreciated!

My best, Karen

 

 

Butt's picture
Butt
Posts: 355
Joined: May 2018

The problem is that many people with advanced cancer sooner or later go downhill. You don t have a reliable support. Yes, you mind can be fuzzy and unfirubtaly down the road you may feel even worst. I posted a while ago that you still will need some doctor on file if you need pain meds. It can be another oncolgyst 10 miles down the road. You need to try to do logistics for a situation when things can start going south. This is something many people don t get and it has nothing to do with you specifically. Many older people need some reliable adult who will assist with logistics of health care and monitor that they are doing the right things. Home care is expensive But there are many agencies who do it. It is not easy to do logistics. It is not only about legal documents. It is about who will pay your bills if you are not capable to do so. There are so many details that are specific to each person and because you are alone it makes things more complicated. I am not good with social workers.i simply didn t find them really helpful but more annoying. My insurance assigned to me a social worker who called here every 2 weeks  to ask how I am feeling. I ask her how exactly you can help? Or she can connect me with nurse who can answer medical questions. My oncologist can answer them to and nurse practitioner can answer them to. So, if you have some moment of clarity just think about the next step. Butt. 

NewHere's picture
NewHere
Posts: 1340
Joined: Feb 2015

If you are feeling healthy and good, once again, get on the plane.  There is no downside to going.Go to Hawaii.   All this can wait a bit.  Or you can attend to it then go.  You owe it to yourself to go to Hawaii, regardless of what is happening.  You can call hospice, if you feel so inclined, and put it in place quickly ahead of time.  Same with the other things.  If it is weighing on you, book a plane ticket and hotel for a week from now, then do the other things. 

You don't go, you will kick yourself in your tushi.  You do go, you will have a great time and have a great memory.  

  (As mentioned, I have not yet gotten the hospice speech and I am doing okay, but as of now things are still growing despite 6 months of chemo.  Still keeping fingers crossed.  And I need to attend to the same things as you mentioned at some point.  I may be a bit irrepsonsible in this respect, but I can wait still I am starting to slow down and feeling more "sick" to address those things.)

 

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Karen, I'm so sorry you're trying to deal with this but I think we all understand. If I were you I'd do the planning a funeral thing. Not because you may need it soon but because it'll be something you can then put aside. Regarding your possible trip, would you go alone? If so then no wonder it seems intimidating. If you have someone to go with you who understands your limitations and fears and can be counted on to take care of things if there was an issue, then you should try to go. Maybe making plans like that will take your mind off of the ugliness at least for a little while.

The hospice thing, as a former hospice nurse you know what that's all about. At my last cancer support group where I live we had a speaker from the local group who explained that it's not necessarily all about being in a hospice at the end. It's about home care and having people to do things with and for you and visit and make your life better while you're still at home. The term hospice is, to me, rather negative sounding and final.

I hope you make the right decision for you and get yourself out of this funk soon. This is all hard enough without being depressed on top of it.

Hugs,

Jan

Lovekitties's picture
Lovekitties
Posts: 3372
Joined: Jan 2010

Some times our current mental situation colors how we hear things.  Perhaps your therapist was thinking that Hospice would give you the support network that you need.  As a former Hospice nurse you know that it is not a "forever" commitment.  The only catch is that you cannot be in active treatment.  You can however change your mind and go back into treatment should that be your desire and you find a doctor who has a plan.

End of life planning is something everyone should do.  Whether it be funeral planning, making a will, designation who gets special things, etc.  If you own things or have responsibility for another, it is just good to do.  When I was diagnosed I had a will that hadn't been updated in over 20 years.  I started making a binder of all the things someone would need to know if I became unable to perform daily financial activities.  I updated my will.  I made sure my loved one knew my funeral preferences.  I felt amazingly good about getting that all done, for the time it would be needed.  It all should have been done before and updated annually or with significant life changes.  Doing it does not mean I am anticipating leaving this earth soon, it does mean that when I leave, I will make it easier for those left behind.

Your interpersonal relationships seem to be weighing on you as much, if not more, than your health condition.  As they say,  "it is what it is".  At this point I seriously doubt that you will be able to change those relationships into what you want or need.  Being alone in this world while surrounded by people who are supposed to care is very depressing.  I get it.  There have been times in my life when I thought the best thing to do would be to go to the nearest airport, find a great destination and just "disappear". 

If you are not going on the Hawaii trip, then I think you need a pet.  A dog can give unconditional love in return for attention.  Cats tend to be more independent.  If you don't feel you can take on a dog full time, check with your local animal shelter and see if you can be a "walker" or "pet friend". 

Your doctor and therapist are just giving you their honest opinions.  There is no easy way to give news we don't want to hear.  If you don't like what you hear, then you have to find others who may give you hope. 

I understand depression "paralysis".  I have had it.  I make a list of the things that I should be doing and then try every day to do one thing on the list and cross it off.  For those things that are too big to accomplish in a day, break it down...like for the Hawaii trip...get some brochures...buy one item of clothing (on-line shopping is great!).  You will soon find that making progress encourages additional progress.

I hope that you can find your way to some happiness.

Hugs,

Marie who loves kitties

 

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