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Caregivers,,,,where are you???
WELL, ITS TIME, CAREGIVER OR NOT,
Check in,,,,hows it going::: Lorrie, Julie,Clara, Karen,Heidi,,MARGOT,and everyone, sometimes I wonder who are taking care of the men on the forum,
maybe you men could tell us about your wife, or substantial other and how they are? That would be,Zach, Leigh, Rah, Joe , George, Sailorman, etc. how are your caregivers doing…. Pat is taking care of herself ,and doing a good job!!
Ginger -
15 Replies
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Lorrie,
I promise I won’t think of you as weird, rather I’ll consider you to be a unique friend! We all have our quirks and you are allowed, too! Keeping you guys in my thoughts, God Bless, Holly
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Hi all- Well they have cancelled the scheduled Chemo for Monday again as Bob is too run down. Also, he has been fighting a cold. The cough is awful so he got a script for some insanely expensive syrup. We have no benefits so it hurt to pay for it- it better work- it has a lot of side effects. The Xrays were good but they sent him for more especially of the chest. We are so appreciative of the Cancer Hospital in Kitchener- it’s so well run. I wish we had gone there when this nightmare started- maybe things would be different………
I guess I’m going to have to breakdown & get some anti-depressents or something-I’m coasting & isolating again. Someone tried to hug me the other day & I lost it. I’m not good with hugs when things are bad- I need to keep a distance to keep it together. Weird huh?
Have a good evening everyone- Lorrie
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Hi all- I’m here too- I made a quick post this morning. We are hanging in. I should have some news tomorrow- I’ll stop by- I just found this thread. regards to all, Lorrie
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“Guys don’t like to discuss this kind of thing”. this sounds a bit like a generalisation to me! there’s a very active mens section on this forum (more topics and replies than the women’s section btw ;) )where you’ll find discussions on everything from diapers to ejaculation and emotional issues. we have some very active male members on the forum who are amazing in their candour about the most private of issues . but i think we blokes are in an exponentially improving situation as far as talking about our feelings goes. or maybe that’s just the men i hang out with. we talk about all kinds of things.
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Karen,
I can really identify with your thoughts and frustrations. After the scan in May and then the visit to the urologist for the cath. it really hit home what is going on. I even have started doing some things to prepare for that dreadful day because I do not think I will be able to handle everything at that time. My daughters have been helping me with that too.My daughters do pop in and help me some and even have offered to get someone to come in every other week to clean. Last night I told my daughter that lives here to let the cleaner come to her house today that I might need her later. Just felt that with my daughter’s job and they moved into a house that they are remodeling, she needs it worse than me. I can at least keep the areas we use decent. I am sure it is even harder for you with those beautiful little ones but just enjoy them. They grow up way too fast.
Since we are having a “bitchy” time, maybe today will become a day of laughter. I try to make sure I laugh at something every day and also share it with Bob.
Take care of yourself.
Love and prayers,
Clara
Caretaker of husband, Bob.
Stage IV
Diagnosed Jan, 2007 -
I know that I am not a spouse of someone with BLC and I cannot even imagine what that is like….I can give my two cents as a daughter. I lay awake at night with my mind racing and worrying about everyone and everything. I do not want my father to be in pain and the thought of him suffering makes me crazy. I am panicked about my mother being left alone and worry that she is not strong enough to carry on without him. I am scared and it encompasses every moment of everyday. There is not escaping it. I go to my parents as much as I can and I help with rides to the dr. and chemo and I stay with him when my mother needs to work. Getting married in 4 months has taken a backseat and all I care about is him being well. I pray harder than I ever have (for all of you as well)….and I just keep telling myself that miracles can happen to good people….and he is a wonderful man.
sorry for the downer…
xoxoxo
Melissa -
Some days we just want to have some one listen not tell us what we need to do. We know well enough what we have to do. For just a little while we need to have a place to share what is really going on and not have advice. Advice is different than support. Support is listening and not judging. When I was in training to be a therapist my advisors told us “unsolicited advice is never welcome.”
Volunteer Coordinator
ABLSC -
Bitter must be going around with the caregivers,, when you carry the emotional load for 2 its a heavy job!!! Who cares, we go on anyway,,RIGHT!!!somedays it really drags one down,,so get up and do it all over again…Ginger
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Pat,
you crack me up…LOL…:laugh:
Now for a little glimpse to my mind….
I find it very hard to think about, or want to do housework or very much of anything since my husband is just lying in the other room dying…Just doesn’t seem that important…I have a girl come in once a week to clean the kitchen and bathrooms, mop the floors, and do a general clean-up…it is really cheap here in NC…under $10 an hr. She is here for 2- 2 1/2 hrs, and I just make pizza on Friday instead of ordering it…Maybe this is an option Julie & Clara?…I would take a cleaning girl over take-out anytime…
It is one thing to be a caregiver, another to be a caregiver, mother, spouse watching the person you love dying…No one could possible know unless they lost or are actively losing their spouse…I don’t care how much they think they can…This is so much deeper than facing the possibility that someone you love MAY die…This is reality THEY ARE DYING…to watch your beautiful, strong, amazing husband shrink away before your eyes, to know that in the near future you are going to roll over in bed and they ARE NOT going to be there…Not maybe they won’t be there…THEY ARE NOT GOING TO BE THERE!!! I want to SCREAM…:woohoo:
I wish I could go back and just worry about laundry and yard work…but my mind is consumed with larger issues…
Sorry if this sounds bitter…but today I am…just a little glimpse of what I and other loving wives/caregivers/future widows go through…
Karen
Caregiver for my Wonderful Husband Angelo, who has Metastatic Bladder Cancer.Life isn’t about how to survive the storm, but how to dance in the rain.
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HEY..you’re right..i’m my own caregiver..now i can belong here!! I can tell you it sucks. I’m like Shirley Valentine..most of my conversations are with one wall or the other. And i have to carry the dialogue for the wall! I’m still living in the 4 bedroom house with 3/4 of an acre and landscaping all around the house which i maintain…Housecleaning..whats that? I long ago decided that wasn’t on my list of priorities…i’m going to be on my deathbed saying “I wish my house was cleaner”? No joy from cooking now either…no fun to cook for one and who can afford groceries anyway? Oh yeah thats the other thing my income is now 2/3 less than it was 2 years ago. Obviously i haven’t figured out the single living arrangement yet. All the guys my age are looking for 30 yr olds….and they should get what they deserve (read what you will into that one) besides since they took all my hormones and my vagina what use am i anyway? And i’m not looking…i had the best. But really my diet of Starbucks Mocha, Hot Fudge Sundaes, and Pizza has got to stop.
Thanks for letting me in your group!! Pat -
Julie and Clara,
Julie, I wish I could get housework out of Gene, he can do it, but never did, so I have a big problem. I am glad Dick is better, remember he was having a hard time a couple weeks ago,,sleeping weird times, lathorgic..I hope he’s more attentive,,and feeling better.
Clara,
The older I get the less appealing housework is. We are looking at condo’s, but I will have a hard time leaving our home of 30 years to give Gene a break on the outdoor work…we have 3/4 of an acre, lots of perennials, my favorite. I guess the one thing that b/c makes you aware of is your age, and should I really be living in a big 4 bedroom home with lots of yard work,,hummmmmmm! In case I would be doing it myself…
Last year I promised myself I would get Gene to the Grand Canyon, so this October I will, along with family…my c-dif compromised our March trip so this is PLAN B,,,
Have a better day everyday girls,,we have our work cut out for us!!!
lOVINGLY,
Ginger -
I am here too, maybe I have just been posting in the wrong place.
Julie, I have trouble getting motivated for all this housework too. By the time you give med., fix breakfast, shower, help with dressing, the day is half gone. I am just so thankful I can be here though.
Every day is a true blessing.
A member of our church (92 yrs. old) just brought by peaches off of his trees and that just made my day to see him. His wife passed unexpectedly last year and they were such a delightful couple.
Ginger, Thanks for getting us back to the right place.
Clara
Caretaker of husband, Bob.
Stage IV
Diagnosed Jan, 2007 -
Checking in. Don’t have much to say. Trying to get an appointment with Dick’s PCP to talk about a different diuretic and starting an anti depressant. This is a better week than 2 weeks ago or was it 3. Had to change my thinking about what Dick was capable of. I was overestimating his ability to function mentally. He is somewhat better now. I am still having problems being motivated to do housework.
Volunteer Coordinator
ABLSC -
Bookwriter,
Your right,,the waiting is the worst, but it will be fine, no pain just a pain in the neck, the stress is so frightening. Your right again the men don’t get on much, my husband had to be weaned on and now talks to some on the forum facing an r/c…also we talk to patients at the Cleveland Clinic who need help emotionally. My husband was Stage 3 T-2,, diagnosed July 3rd 2007, surgery Sept. 14th, and lucky for us all clear with the path report. So we are closing in on one year, he is 67 me 62,,,he is back to normal,,at times he may be a little emotional but we went through alot as YOU well know… Nice meeting you and pm me anytime!!!!Ginger
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I just started paying attention to this website because Sailorman is going in for the radical cystecotmy tomorrow morning (and is drinking the bowel-cleaning stuff now). Before that we were waiting . . . waiting . . . waiting . . . the surgery was scheduled about a month ago. Waiting was not easy.
One thing I’ve noticed on this board and others is that women talk about these things much more easily than men. Often, it’s caregivers posting, and sometimes it seems as if bladder cancer mainly effected women . . . we know that’s not true. Guys don’t like to discuss this kind of thing.
I just want to say, guys, it’s OK. Nobody looks down on you for it. It’s good to discuss these things. Knowledge is power.
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