Cargiver needs advice

Joyce
Sorry to read of your husband's multiple diagnoses. The daunting task of being organized & keeping track of medical info for more than one dx becomes ever more challenging. From one control freak wife to another, we all have our "burdens" to carry and, hopefully being a control freak would be our worst burden!

While I'm not quite sure what advice you're seeking, I'll answer based on my experiences. I kept a simple notebook that fit in my purse and took it with me to every appt I attended with my husband (he had no problem with me attending doctor visits, etc). Each page was dated, had docs name, questions to ask and notes I made about the visit. During medical consults we used a small hand-held voice recorder to record the visit (after first obtaining the docs permission to record the session). Any medical procedures, tests, etc, were recorded in the same manner in the notebook. We also asked for a copy of the doctor's notes/report after any visit in case there were specific instructions to follow. I've referred back to my "notes" numerous times and they were easy to find since they were all in one place & dated. I was able to add more pages if necessary to the notebook. My husband listened to the voice recordings we made multiple times to verify facts that we "remembered differently." If your husband is not allowing you to attend appts, it may be time for you to have an honest private discussion w/his docs and voice your concern that he has been "foggy" and/or unable to follow medical instructions. It is easier to have this discussion with his doctor if your husband has given you/signed a durable power of attorney for healthcare. Keep in mind that certain meds may have a side effect of forgetfulness, memory loss, or fogginess, etc.

Many cancer centers and charitable organizations (LiveStrong, The Wellness Community, ACS, just to name a few) may still offer free organizational notebooks/materials with dividers and tabs just for organizing/tracking the enormous amt of info related to cancer dx, tests, appts, care, etc. While I came across some of those organizational tools, my simple system worked best for me. If your husband is "foggy" on following instructions related to his cancer care, all the more reason to have it on voice recording and/or in black and white so as to minimize any confusion.

Take a deep breath and give him his "space"--he needs it--and so do you. Following his doctors' orders and taking meds as prescibed, etc. is critical to his health & well being, especially if he is foggy, confused or forgetful. He is lucky to have such a caring and concerned wife, control freak or not.
All the best,
mrs pjd

PA_grandma said:

Mrspjd
Your response is VERY helpful.
Thanks so much for taking the time to explain how you survive.

John (my husband) has no problem with my participation at doctor visits or chemo therapy.
I am a 'note' taker...but your technique is by far superior and I plan to follow to the best I can.

At this time his Prostate cancer is being treated only with hormone injections, until the Hodgkin's lymphoma is under control. Maybe if I can learn to 'suggest' or 'remind' instead of sounding like I'm nagging, things will improve. Right now, I'm waiting for him to make a PFT test appointment. Have mentioned it umpteen times. Have paper posted on the fridg. Do I let it slide?

I see you joined this forum this year. I hope your husband is doing well, and appreciates you too. Please share anything that you've found helpful.
Joyce

thanks
Glad the post was helpful to you. We do love these guys and want them to be around for a long long time.

Kongo said:

A Male Perspective
Joyce,

I think mrspjd gave you some great advice. From my perspective as a man, your husband may be going through a lot of normal reactions to his condition such as denial, regret, wishing there was another way, frustration with diminishing options, and some degree of mourning for a lost youth, loss of his health, and so forth.

In my own case when my wife tries to be "too helpful" I sometimes feel resentment. I do not want to be treated as a child and while I know that is not what she intends and I want and need her support, it sometimes comes across that way to me. I want to feel independent and "still in charge" and not be nagged but I still know I need her support and love.

You might gently try to get your husband to take more responsibility for his care by laying out the medications for him to take each day and posting a calendar with appoitnments on the refrigerator or something but not push him too hard. I am sure he knows what he is supposed to be doing. Give him a chance to do it without letting him think he has lost the ability to make decisions about his life and how he want to live it.

Men resent losing their masculinity and like to be "in control." Most men do not want to be "mothered." The health situation with prostate cancer and Hodgkins already takes a major swipe at his sense of himself as a man. Unconsciously, he may be taking some of his frustration (and fear) about his medical condition out on you. Try to find as many things as possible in your life together that he is "in charge of" so that he can validate his usefulness and self worth.

I would also suggest that if you have a chance to talk privately with his doctors that you raise these issues as I am sure they frequently have dealt with similar issues and may have some relevant suggestions for you and your husband.

Best of luck to you both.

I may have missed the mark on this one and Kongo’s perspective & suggestions are on target. His post addresses what most women (wives) know, but often forget—we are not your mothers, but your wives & partners. (Not considering the Peter Pan Syndrome—that’s another discussion board!) No amount of nagging or bossiness, no matter how constructive & loving the intent, whether directed to children or spouse, will result in beneficial outcome. Dignity and respect, with a creative approach, are keys to a win/win outcome.

Joyce’s thread is titled “Caregiver needs advice” instead of “Wife needs advice”--a possible clue to the special situation she may be dealing with—a husband/partner that, for a wide variety of possible reasons (i.e. depression, personality issues, Rx med side effect, degenerative neurological disease, etc.), perhaps resulting from the cancer dx, may be obstinate, unwilling, unable or uncooperative in managing his own care. Assuming here that life w/dignity is the choice, this makes things infinitely more challenging as the “healthy” partner finds him/herself in the dual role of wife & caregiver.

As a care manager for an elderly parent with a degenerative neurological disease, I know first hand the challenges resulting from this dual role situation, albeit, parent/adult child. Anyone faced with such a behavior/personality changing situation, whether with a spouse, parent, etc., might benefit from info found on a caregiver website/discussion board, especially from a charitable neurological disease organization, or from a face to face caregiver networking/support group. When confronted with personality changing behaviors/diseases, these resource venues can offer practical & creative solutions to replace ineffective & frustrating caregiving practices.

Kongo said:

Mrs
I too wondered about the title Joyce chose for her thread and whether that was an oversight or a subtle indication of the nature of the complicated relationship she has with her husband. If Joyce sees her role as primarily that of a caregiver instead of a wife and her husband doesn't share that view, it could be one of the issues that is causing fricton.

Spouses develp very complicated relationships on many levels after so many years together and when you add the side effects of medications or degenerating health issues on top of that it is very difficult to sort out.

My thoughts are that if her husband is capable of taking a more active role in the management of his needs at this stage in his life then "Wife needs help" rather than "Caregiver needs help" might be a way ahead. Of course, if he cannot do these things, then Joyce has a particularly heavy burden to shoulder and could benefit from a support group or other resource as you suggest.

Joyce, I hope you can provide more information on your situation and let us know what your thoughts are in this matter.

All the best to you.

LOL, but no laughing matter
Kongo,
Indeed male/female-husband/wife relationships are complicated enough, and when impinged upon by health challenges such as cancer or similar burdensome factors, that just makes things all the more challenging & testing, especially when long term relationships have established patterns & "roles." Another possible consideration you neglected to mention related to Joyce's husband's part in taking a more active & responsible role in his own healthcare is "husband is capable, just won't grow up," although that might fall into the "wife needs help and lots of patience" category. So much for Men are from Mars, Women are from Venus...or is it the other way around...

PA_grandma said:

WIFE needs help
Oh my goodness, so much to absorb. Feeling like I'm in group therapy.

Well, lady & gentleman... that's in interesting point...wife or caregiver? Can I be both at the same time? I'll examine this question after (or during) a good night's rest.

My predicament came about after John recently started his first rounds of treatment. The hormone therapy for prostate made him quite 'foggy'. Couldn't pull up the names of his diseases or treatments or doctor. He seemed to age years in just a few days. Then started chemo for the Hodgkins and the white cell booster injections. More changes. I thought, this is the way it's going to be...forever. I was frightened to have him drive the car. He went right on by our driveway and would have missed a familiar stop sign if I hadn't screamed. I drive now... caregiver or wife.

These side effects have subsided in the past day or two. He's more my 'husband' again. Made his PFT test appointment (reminder on the fridg) He even went to our business this morning to update the paper work. (Yes, he's in charge of the 'books'. Don't want to worry about that, yet).

This Friday, chemo again...next week, hormones.... So I expect another down slide, but at least now I feel it's 'temporary'. I do plan to search for a caregivers support group.

Look forward to having your fresh look at my 'mothering' and all insight into my negative behavior is welcome. ~ Joyce

What a Star
Joyce, you seem like a real keeper and you certainly have your hands full in dealing with a very tough situation. I certainly did not mean to imply that you were exhibiting any "negative" behaviours and I am in no position to judge that one way or the other. I am sure you are doing the very best you can and from the additional information you've provided here I understand perfectly why you are doing what you do. Hopefully, John's perspective will improve with time and will make your job easier. Chemo, hormones...wow, what a mix. He is surely going to get pulled in a dozen different directions mentally as he goes through these treatments. He's lucky to have you.

Kongo said:

What a Star
Joyce, you seem like a real keeper and you certainly have your hands full in dealing with a very tough situation. I certainly did not mean to imply that you were exhibiting any "negative" behaviours and I am in no position to judge that one way or the other. I am sure you are doing the very best you can and from the additional information you've provided here I understand perfectly why you are doing what you do. Hopefully, John's perspective will improve with time and will make your job easier. Chemo, hormones...wow, what a mix. He is surely going to get pulled in a dozen different directions mentally as he goes through these treatments. He's lucky to have you.

more like a saint!
Joyce,
Your sense of humor and openness in coping with the roller coaster of emotional and physical changes as a result of John's cancer treatments, including ADT, is to be commended. Sometimes the cognitive side effects of ADT/hormones can be so subtle that no one other than the wife will notice, but those effects (such as fogginess) are real and scary at times. Hoping that the caregiver support group and/or the face to face PCa networking/support group that you seek out will provide some coping mechanisms that allow both of you to have an improved quality of life, such as you've known previously.

All the best.