Caregiver needs advice

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PA_grandma
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   Posted 12/6/2010 12:21 PM (GMT -6)   
What should I do...
I'm apparently bossy and/or a control freak.
 
My husband was diagnosed with prostate and Hodgkins (stage 4's) His testing, meds and appointments are overwhelming.  Also, current early treatments seem to be making him foggy.  This fifty year marriage is in trouble by me 'telling him what to do'.
 
Do I back off and let him do  (or forget to do) what's required.  I'm really at my wits end.
Joyce

Purgatory
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Date Joined Oct 2008
Total Posts : 25393
   Posted 12/6/2010 12:58 PM (GMT -6)   
Do you have your husband's legal Medical Power of Attorney in your name? My wife is mine, and I am her's, in case either one of us aren't in the best frame of mind to handle personal medical decisions.

Patients normally have the right to make wrong decisions, my 83 year old mother is prime example of that. She goes to doctors all the time, but refuses to comply with any reasonable doctor's orders, and she refuses randomlly to take prescription meds that are critical to her well being., My younger brother is her Medical Power of Attorney, and is clueless on medical matters, so he feels that its her choice and no one should interfere. My wife is a well experienced nurse, and knows my mother is a walking time bomb.

There's a grey area between patient's rights and someone stepping in to make the right decisions on behalf of the patient, even if they wont

Hopefully, you and your husband are in a position to talk this through and come up with some kind of working compromise? I hope so.

David in sc
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos marg
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06 11/10 Not taking it
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/23/10

Steve n Dallas
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Date Joined Mar 2008
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   Posted 12/6/2010 1:14 PM (GMT -6)   
Try backing off a little and see what happens.

compiler
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Date Joined Nov 2009
Total Posts : 7269
   Posted 12/6/2010 2:25 PM (GMT -6)   
Well, your post is a bit vague.
 
It would seem you should be demanding on all things medical, at least with regards to medications.
 
I'm assuming that it is crucuial that he take all the medications at a prescribed time/dosage. If it's a lot of stuff, you have to work out some system.
 
I know...easy to say... but important, it would seem
 
Mel

PA_grandma
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Date Joined Nov 2010
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   Posted 12/6/2010 2:29 PM (GMT -6)   
David, thanks for your input. (Steve, chime in)
 
No, we have nothing firm at this time.   All of this legal stuff (Wills etc)  were in the works a year ago and even have the rough draft in hand.  We got side tracked and never completed.  Poor attorney hasn't even sent us a bill.  I WILL follow up on that.
 
John is sounding a lot like your Mother...and when I tell him stuff, I'm nagging.  Today I'm so pi**ed that I've backed off about the PFT test appointment he needs to make and the referal before his next Chemo.  I wonder when or if he'll do it.   I already made the white blood test appointment... too late to leave that for him.  He's not keeping track of the meds and the time he takes them.  I made a chart.... nah... I could go on.
 
Sorry to rant.  We're just beginning this journey. 
Joyce

PA_grandma
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Date Joined Nov 2010
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   Posted 12/6/2010 2:37 PM (GMT -6)   
Mel, just saw your post.

John had his first Chemo the day after Thanksgiving... and yes, there was a defined time period to take the anti-nausea medication. That's done with.

Yesterday Onc Doc sent him to emergency because of 101 fever. (6 hours of testing)
A scrip for Levaquin (VA Hospital, where he gets meds - doen't carry it ). Walmart $138 for 7 pills. He said...forget it, I don't need it. No temp today.

compiler
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   Posted 12/6/2010 2:42 PM (GMT -6)   
Sigh.... all I can do is wish you good luck. That is a difficult situation.
 
Mel

clocknut
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Date Joined Sep 2010
Total Posts : 2680
   Posted 12/6/2010 2:44 PM (GMT -6)   
This reminds me of my Mom and Dad. Mom would go out of her way to prepare meals that were in line with his diabetic diet, and he would either refuse to eat them or sneak or binge on all the wrong foods. She felt much like you do, and though we're a large family, none of us ever came up with a solution that was workable. After a while, though, I can see where the healthy partner would just say, OK, it's your life. I've done all I can for you. I've seen first hand how tough this can be, and I wish you well. You can lead a horse to water, or you can at least show the horse where the water trough is, but you can't make them drink it, and you can't drink it for them. Honestly, short of some counseling sessions, I don't know that there's a simple solution, and I'm sure it's a situation faced by many couples as they grow older. I will add, though, that while you have responsibilities to him as a spouse, you also have a responsibility to take of yourself, both physically and psychologically. Your anger and frustration are very understandable. Good luck. If we can't come up with a way to help him through his trials, maybe we can help you a bit.
Age 65
Dx in June 2010.
PSA gradually rising for 3 years to 6.2
Biopsy confirmed cancer in 6 of 12 cores, all on left side
Gleason 7 (3 + 4)
Bone scan, CT scan, rib x-rays all negative.
DaVinci surgery late August at Advocate Condell, Libertyville IL
Negative margins; negative seminal vesicles
Continence OK after 7 weeks. ED continues

PA_grandma
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Date Joined Nov 2010
Total Posts : 3667
   Posted 12/6/2010 3:39 PM (GMT -6)   
Clocknut,
Your post about your Mom & Dad made me smile
(almost the first one of the day...thanks)
 
I'm letting this situation drift for a day or two and see if my irritation subsides and his acceptance increases.  After that... I'll only 'suggest' .
 
My own agenda has added fuel to this fire.  A cat bite from our injured former feral, rabies shots, tetanus, Health Department requirements.  We have had a lot going on at the same time.  It has helped to vent here and get the feedback.
 
Hope you are doing well.
Joyce
 
 

Worried Guy
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Date Joined Jul 2009
Total Posts : 3741
   Posted 12/6/2010 3:46 PM (GMT -6)   
PA-grandma

50 years is quite an accomplishment.

How about a bit of a compromise...
You can set up his meds for the week in those pill holders with the day and time (Morning, Lunch, Dinner) They sell them at the Dollar Store.
Once the week's meds are set up, you leave the whole tray of pills on the kitchen table. Yep, all week they sit out on the table where he can see them every time he sits down. It will be very obvious to him (and you) if he forgets.

This is a stressful time indeed. My heart goes out to both of you.

Jeff

Steve n Dallas
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Date Joined Mar 2008
Total Posts : 4848
   Posted 12/6/2010 4:41 PM (GMT -6)   
PA-grandma -
1) smack him around some more and then run like the wind idea
 
2) treat him like one of the grand kids
 
3) Cry alot till he comes around...Make him think doing what you want him to do would be better then a lot of crying...
 
All kidding aside, he has to participate in this deal and he knows it...Sounds like its a little much for him right now... Or has he always been this way smhair
 

PA_grandma
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Date Joined Nov 2010
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   Posted 12/6/2010 5:00 PM (GMT -6)   
Jeff:  Yes fifty years, can't believe it's been that long 'till I look in a mirror.  Had its ups and downs, but wish there could be another 50.
Good advice about the pill holders.  We have some on hand already.  It's as much about making and keeping appointments and tests as well.  Oh well, I'll hold his hand (gently)
 
 
 
Steve: Your humor is contagious.... just can't run very fast anymore.  Haven't tried the 'tear' routine recently, but will pull that up, for sure.
Yes, I guess John has always preferred to be in control.  Now, losing some functions must be very hard for him.  I'll try to be more patient.
 
Thanks, guys
 
Joyce
 
 
 
 

goodlife
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Date Joined May 2009
Total Posts : 2692
   Posted 12/6/2010 8:37 PM (GMT -6)   
Joyce,

I'm sure you understand how hard this is on your husband, but maybe not entirely. Those of us who have heard the words "you have cancer" probably understand a little better. The room kind of stands still, everything gets quiet, and we don't hear much else.

There are multiple ways to respond. We can just say Oh shoot, what's the use, I 'm going todie anyway, and just quit. We can try to learn everything we can about the disease and make the most informed choices we can, and fight this sucker until the bitter end.

Depression is a fairly common reaction that we don't necessarily control. As men we don't like being out of control, so it just makes it worse.

I would recommend that as best you can to come alongside John, and appraoch it as a shared problem. Direct commands to take his medicine or to do something compound the problems, as he percieves he is not only not in control, but now forced to take orders, even tho you are not doing it for that reason. The spouse has a really tough role. At times, it is thankless. We men can be terrible patients.

On the other hand, most of us realize that going through this is really tough without a spouse or partner to help us through it. I will be forever grateful to my wife ( a nurse ) for her quiet way in which she allowed me to think I am in control, yet has coached, prodded and helped me alomg every step. Love is a wonderful motivator.

Good luck on your journey, and feel free to vent here anytime.
Goodlife
 
Age 58, PSA 4.47 Biopsy - 2/12 cores , Gleason 4 + 5 = 9
Da Vinci, Cleveland Clinic  4/14/09   Nerves spared, but carved up a little.
0/23 lymph nodes involved  pT3a NO MX
Catheter and 2 stints in ureters for 2 weeks .
Neg Margins, bladder neck negative
Living the Good Life, cancer free  6 week PSA  <.03
3 month PSA <.01 (different lab)
5 month PSA <.03 (undetectable)
6 Month PSA <.01
1 pad a day, no progress on ED.  Trimix injection
No pads, 1/1/10,  9 month PSA < .01
1 year psa (364 days) .01
15 month PSA <.01

142
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Date Joined Jan 2010
Total Posts : 7082
   Posted 12/6/2010 9:28 PM (GMT -6)   
Joyce,
 
I am not quite alone, but there is no wife, no kids, so I depend on friends for kicks in the arse (which they give me regularly). I can't offer much help on spousal support, and am not much to follow orders, except that for now, I have such a long list of things on my bucket list that I can't afford to check out just yet.
 
Hubby may need to be reminded that there is a reason to continue to be here (you, family, helping at the food bank, getting all those stamps in the album, finishing the fence on the north forty, finally drinking that 50 year old bottle of scotch, whatever it is he likes to do), and that he still has something to say about being able to do that. After that, I agree on the slight "backing off" as a tool. Do it figuratively. Keep up with what is going on.
 
A good trick that was pulled on me - "OK, if you want to check out, at least save some cash for the favorite charity bequest, finish the will".
 
I am the poster child for bad patients. I only follow doctor's orders that don't hurt so much. But if I filled a prescription, I'll take the pills. They will not get my money easily.
 
Just an old bachelor's point of view.
 
 

geezer99
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Date Joined Apr 2009
Total Posts : 990
   Posted 12/6/2010 10:13 PM (GMT -6)   
It sounds a bit like me and my wife (but of course I am not as bad as your husband) She got tired of nagging me to take my pills and set alarms on my cell phone – the alarm goes off, I cuss, but I take the pills.

At the end of the day we sit together and plan the next day – a good chance for her to remind me of appointments. She even reminds me of ones several days in advance. Since this is called “planning the day together” rather than “reminding the stupid old fart” it seems easier for me to take, and because we both keep calendars, I have a duty to remind her of things too.

I think the big thing is to start with an affirmation of love. We only have 25 years together, but remembering that it is love that binds us is important to every difficult conversation

Ed C. (Old67)
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Date Joined Jan 2009
Total Posts : 2461
   Posted 12/6/2010 11:00 PM (GMT -6)   
Joyce,
I sympathize with you,m my wife is diabetic and is required to take her medication twice a day. If I don't remind her she will skip it. I have posted signs on the refrigerator and the stove to remind her but she still will skip taking it. She often complains about pain in her foot but yet refuses to go to a pediatrist. It is a constant battle with her. I get tired of the whole thing. Hang in there and don't give up.
Age: 67 at Dx on 12/30/08 PSA 3.8
2 cores out of 12 were positive Gleason (4+4)
Davinci surgery 2/9/09 Gleason 4+4 EPE,
Margins clear, nerve bundles removed
Prostate weighed 57 grams 10-20% involved
all PSA tests since (2, 5, 8, 11, 15, 18 months) undetectable
Latest PSA test (21 months) .005

PA_grandma
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Date Joined Nov 2010
Total Posts : 3667
   Posted 12/7/2010 6:06 AM (GMT -6)   
It was so good to get up and hear from gentlemen's point of view!
....But first, had to clean two litter boxes...  three 'males' in this house to care for.
 
Goodlife: I admire how your wife 'quietly coached and prodded'.  Will work on that approach.  As the owner of a busines for the past 36 years my 'style' has been one of a 'boss'... but that doesn't work here. (and maybe my employees didn't like it , either)
 
Old bach...142:  You sound a lot like John!.  He has chuckled that 'now I can do the things I always wanted to do'.  Also, he's for NO PAIN... even waits for a band-aid to fall of on it's own...
 
Geezer:  'Plan the day' together is an excellent approach.  The cell phone won't do it.  The only one we have is in the van...never turned on... used only for emergency.  Hard to get us old timers out of the dark ages.
 
Ed:  Wow, we're both in the same boat.  You, too.. get tired of it.  Hope we can both find a way to see this through.
 
In general... the day ended fairly well.  John joined me in my room to attempt the Jeopardy answers even while the football game was on in the living room.  Guess he's telling me something... or maybe the game was one-sided.  AND...he listed last night's meds that he took after I went to bed on the chart list
 
Thanks, guys...I'm ready to face the day.
Joyce

Cajun Jeff
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   Posted 12/7/2010 7:05 AM (GMT -6)   
Joyce,I just signed on and was reading the advise of all the guys here. As a Man speaking they are on target. Know that we are hear for you. Sometimes it is just healthy for you to be able to vent and not have your hubby or family know some of your frustrations.

For sure you are in a difficult spot the care giver sometims has the most difficult role in this game of life. Feel free to rant any time you want to. So many time we see ourself in your husbands shoes and how we have treated our wives.

Hang in there Joyce we are hear for you.

Cajun Jeff
9/08 PSA 5.4 referred to Urologist
9/08 Biopsy: GS 3+4=7 1 positive core in 12 1% cancer core
10/08 Nerve-Sparing open radicalSurgery Path Report Downgrade 3+3=6 GS Stage pT2c margins clea
r3 month: PSA <0.1
19th month: PSA <0.1
Only issue at this time is ED

Steve n Dallas
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Date Joined Mar 2008
Total Posts : 4848
   Posted 12/7/2010 7:19 AM (GMT -6)   
Food for thought-> Print this thread out and leave it in a spot where he'lll read it by himself...Maybe seeing how concerned you are might bring him around.

PA_grandma
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Date Joined Nov 2010
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   Posted 12/7/2010 7:41 AM (GMT -6)   
Jeff: glad that I have a place to vent (felt a little guilty that I was being selfish). You know, I was 'trying' to do the right thing...but ... oh well, you know...

Steve: GREAT idea about printing this out... John's not active on the computer

p.s. If you have any interest in seeing what 'we' look like.... google ' lawn display ' (not displays with an 's' on it). We usually are first. The top bar has 'about us' in the center. This is supposed to be our busy time of year. Yah, sure...our poor son is left with all the work load. Good (and bad) that the economy is slower this year. I do go in mornings for a few hours.

Cajun Jeff
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Date Joined Mar 2009
Total Posts : 4119
   Posted 12/7/2010 12:31 PM (GMT -6)   
Well It must be the second comming. The top link was a pic of the nativity. You must be Mary and Your hubby is the baby Jesus! I laughed out loud when I clicked the link.

I know it was my error but wanted you to enjoy my mistake.

Cajun Jeff
9/08 PSA 5.4 referred to Urologist
9/08 Biopsy: GS 3+4=7 1 positive core in 12 1% cancer core
10/08 Nerve-Sparing open radicalSurgery Path Report Downgrade 3+3=6 GS Stage pT2c margins clea
r3 month: PSA <0.1
19th month: PSA <0.1
Only issue at this time is ED

PA_grandma
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Date Joined Nov 2010
Total Posts : 3667
   Posted 12/7/2010 12:35 PM (GMT -6)   
Nah, Jeff... he's the donkey (or ass)... don't mean that, of course.
He (we) are doing better today.
John took his meds and MADE the PFT appointment AND the referal. We're on a roll..

(Glad I gave you a chuckle)

goodlife
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Date Joined May 2009
Total Posts : 2692
   Posted 12/7/2010 10:40 PM (GMT -6)   
Joyce,
 
Did you let him think it was his idea ?
 
Thanks for letting us peek into who you are.  I won't let my wife see it, because she would have a set on order already.  Do you offer an HW discount ?  (just kidding )
 
Some neat pics of you and the donkey.
 
Good luck on your journey, and I hope you can push it behind you a little to enjoy the Holidays !
 
Goodlife

PA_grandma
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Date Joined Nov 2010
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   Posted 12/8/2010 7:24 AM (GMT -6)   
Goodlife,
Even in the best of years... by the time the holiday comes around, we've pretty much had it...it's a year round subject for us.
 
Anyway, have a 'good one' yourself!
(no discounts tongue )
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