Caregivers Corner, Treatments for Advanced Disease, Results, Side Effects, etc. (Part 4)

I guess "the caregivers" are getting low in number, don't see very many postings on this tread any more. It's kinda lonely out here, without anyone to talk to......so many "warriors" have laid to rest and the caregivers have made new paths for themselves.....but there still are a few of us left.....I think?

Gizzy n'me (Rob) was a real warrior and caregiver all in one, he had to be...but he was always here, posting on one thread or another, sure do miss him. RIP ...

By now...

Sal

Tednsal- Sal,

I think maybe I should begin to post in here more and not in the main threads. Its tough being the caregiver and I am worn out lately. Not from the care but from the uncertainty from everything that has gone wrong with hubby's case.....

The latest? At the very least he has a draining sinus, which may be a fistula. Monday I am asking for a referral to another outside provider for second opinion on his GI issues and found one who will work with the prostate specialist recommended by someone on here to ascertain if issues are cancer or chemo related or both, or maybe neither.

Surgeon wants to do an I&D of the incision but paul is resistant. I don't blame him. Every single time something goes wrong and its not clear if it connects to intestinal tract yet but obvious adhesions to abdominal wall there and some signs it may be.

He is down, I am down, I am tired and today have a headache and no energy to speak of. My house is a disaster and my room looks like tornado hit. Tomorrow I have dinner company and can't find my mojo to get anything but little bits done.

Wishing there was grocery delivery and wishing I had a better support network here or even a friend to come over once in a while. I realized I haven't had one person here but my cousin who is actually the one visiting tomorrow (She moved to Dallas just after I moved here!!). Wishing I could afford a cleaning service.

The worst is that so much on my mind I have dropped balls here and there- I need to try to do more couponing to save money, research cheaper sources of medications than we are paying, paying bills on time, etc.... There HAS to be better options available to save money. Not to mention major food waste which I hate because I overbuy trying to get Paul to eat but he doesn't (I do some and it shows!!) then it goes bad. I need someone to help me stay focused and all.

It won't happen anytime soon......

I figure if I start preparing for Christmas now maybe I just might be ready when that comes!!

Hi Susan,

there is never enough sleep for me. Last night it was maybe 3 hrs. I know I need more but 4-5 seem to be plenty sufficient for my body lately. It's going to have to be.

My girls are all in New England and we are here in ATL so nothing they can assist with. Social worker is one covering for the regular one who just went out on maternity leave and not very good. Asked for info on possible transportation help to get paul to and from appts so I miss less work- she sent me 3 phone numbers. One company was closed and as far as I can tell the other two were wheelchair transport at full retail cost and not something covered! He isn't in a wheelchair and the costs were well over $100 each trip. Hell I could rent him a limo at the prices they charge. Also asked about physical and occupational therapy in home as he is homebound and so very weak. She sent me a list of 3 mental health counselors that do home visits... that are not in our insurance network so even if she got the therapy part right we would be paying out of pocket! I brought this to her attention and asked if she could help me further and well lets just say I haven't asked for any more help from her! Wasted my time....

Tomorrow wound care nurse... lots to bring up with her... We want an outside referral to a surgeon for second opinion given he still has so much going on, want a fistulagram done to determine if that's a fistula or not... many others. Next week its cardiac week, infectious disease, etc.

His monthly PSA was done today. Went from 0.47 to 0.43 over the last month. Seems to be an awful slow drop, which could actually be same. A couple months ago one was accidentally run twice and once was .85 and one .90 so who really knows.... But I am good with those.

Lupron shot end of week too...

Kristy,
I feel your fatigue. My. Does atlanta have Uber yet, the ride sharing cum taxi service. Could be the help you need with transportation.

Also, there is a new on-line app here that connects neighbors called Nextdoor Woodside. I think it may be national now. It might be a way to find some short term respite so you can get some time to yourself. And a heart to heart with your bosses? I have told mine my husband comes first and i will be taking more time off than usual to do things while he is feeling well. They were extraordinarily generous in their response.

Sometimes we don't ask when we need help. You don't get if you don't ask. The generosity of people--sometimes even strangers--is a beautiful thing.
And make the dinner potluck. Real friends will understand!

Hi Kristy,

I hear your frustrations. I’ve been on this journey with my husband since 2005. Earlier this year he was hospitalized and had stints put in and his PSA climbed to 227 while on Jevtana. Now he is back on Trelstar (hormone shot every 3 months) and Xtandi and his PSA has dropped to 12.6! He is still having some difficulties but one never knows. It’s a rollercoaster ride and some days I thought I just would not make it, especially when my own health started to be affected. I work full time as well and if it wasn’t for this forum, friends and family I could not make it. You need to have support because you need it. All of us here supported each other even if we cannot post frequently. A few of the regulars have left, but many of us still remain.

Take care and please don’t hesitate to ask for anything.

enjoylife (Cathy)

Unbelievable! Why must everything be so darn hard? It's just not right to have to repeatedly ask for help to find out it's been there all along. Thats wrong in so many ways. Where is the compassion that you hope for in these types of situations - anything to make the way for Paul and you just a little...bit...easier. COME ON PEOPLE!!!

So sorry you're having to deal with so much. This shouldn't be happening. To anyone.

We've emailed back & forth a bit. Enough for me to know that you are an incredibly strong woman who loves her husband more than can be said. So much, that tomorrow, when that alarm rings you'll get up, take care of whatever Paul needs, get ready for work and then you'll do your job. I hope you have the good fortune to run into some people who have the same ethics you do, Kristy. You deserve that.

Hang in there. You have people who are rooting for you. You are not alone.

Best,
Susan

If any of you have a moment we have a second-time posting from a newish member who is struggling to help his father who has recently developed pain from his bone mets. Both Luca and his dad live in Italy. He'd probably like some advice and some company.

Here's his thread: www.healingwell.com/community/default.aspx?f=35&m=3217377

Hope you are all bearing up OK. I read this thread but don't post much. But you are all amazing.

PeterDA

Thanks, I had never heard of them!

PS Did I let you all know Paul had his fistulagram Friday afternoon and its not a fistula, just a very deep infection right against the fascia wall. It tunnels a bit and is still draining a lot. Its pretty big and literally that fascia is so thin right there.

I admit the words "I am not your Mom!" have actually left my mouth .... awful .... It did help at the moment :)

We do whatever it takes, right? The occasional spot of mothering isn't so bad, when you consider.

It seems at times, someone doesn't like to be reminded of things. Especially when it comes from their Mom...sorry, I mean wife! That happens, and when it does the non-listening partner must bear the consequences. What can you do? Nothing. You made the right choice to just let it go. You can only do & say so much before resentment comes into play and that can come from either person.

I did/do have to work on asking myself "Does that really matter? Do you really need to prove a point or do you just want to be RIGHT!?. Sometimes I just want to be right. And other times I just get angry. Who doesn't

Get some sleep!

Welcome fnp256

Long walks and screaming at the wildlife is good therapy. I live on a mountain and scare rabbits and California Quail often. And who knows what the coyotes think?
Hope you and your husband have moments above the hubbub of work and family to reconnect and feel close to one another. This "in sickness" part of the vows has come way too early but at night, under the covers and snuggling, helps us both.

You can do this. You can do this. Because rising to the occasion is in every spouse's job description. Stick around. Good women here.

Well, I see a lot of conversation has been going on since my last posting on 10/03/14. I'm sorry you all are here and it's not the best place to be at times, but sometimes it's a little comforting to know that there are others "out there" in the same boat as you and who are also experiencing those same feelings.

Being "everything" has really worked on me physically and emotionally, I must admit. I believe I have developed a blood pressure problem. I asked to have mine checked when husband was having his vitals being taken last week when he went in for his Xgeva injection (which he didn't get because his calcium was low). My reading was 150 something over something and nurse said are you anxious or upset? Maybe, just a little anxious upset everyday.......LOL

Talk about screaming, crying is my venting....but I can't do that around husband, sometimes on the way to the grocery store, I talk to myself and cry a little. We went to visit eldest son over in Savannah a week or so ago and stayed in a beautiful condo by the beach on Hilton Head Island. Made sure condo had a recliner so husband could sit comfortably, straight back chairs and couches are not comfortable for him. He had GI problems and wasn't feeling as good as we had hoped for, so he didn't enjoy the trip as well as I had wished for. Wanted him and myself just to get away for awhile, change of scenery. Was able to talk with eldest son at length about how I am just "emotionally spent", that it's a lonely place when you have no one to actually sound off to, and no friends (since we have moved here just nine months ago). Knowing that husband is not doing as well as one would hope and know deep down that we are on "borrowed tome". It's "gut wrenching" to have to face that fact day after day and still try to have a smile on your face.

Being the "everything", (mother, sitter, housekeeper, medical adviser, medications specialist, secretary, scheduler, domestic engineer, dietitian, and any other category that I have failed to list is what we as "caregivers" have to look forward to everyday. My husband has his pills laid out for him everyday, but do you think he remembers to take them? NO, do you think he will fix himself something to eat, if I'm not here to do it, NO. So I hesitate to go anywhere and when I I do and come back home, it's 20 questions form me, did you eat, did you drink enough, did you do this or that? Then he get's mad at me and says to quit "nagging" him.....what's a person to do? So ladies, we are all doing the best we can with all of our limitations, we will "maybe" make it in spite of everything stumbling block that get's in our way.

We have had our issues with doctors and treatments that we thought were necessary. That was why we have left the "world famous" Vanderbilt University. Haven't had any problems until we moved her and became a patient at that facility. Needless to say, we are not associated with them any longer and husband is doing better then when he was a Vanderbilt patient. You must be pro-active and ask questions and be insistent, after all we are dealing with a loved one, not just someone off the street.

So Kristy (kukukai00), Susan (myman), Cathy (enjoylife), Margot (Haliday) and fnp256, to name just a few of you guys....take care of your "warriors" with the strength and courage that I know each and every one of you have.....and pave a clear path for all of those who will follow us.....

Peace, Love, Hope and Faith to ALL....

Sal