How Do I Get Past the Modesty Issue?

katclaws_moApril 26, 2005

Hi everyone, I was reading the post about incontinence and protective undergarments. My mom has moderate Alzheimers and my Dad was dx'd with Multiple Myeloma last June '04. He was on two chemo therapies that didn't work and just began the last possible chemo drug (Thalidomide)available to him on April 1st.

We know the chances of remission are very slim at this point, but we still have hope. This latest chemo drug makes him extremely fatigued. He lost a lot of weight and eats little. I can usually get him to eat a good breakfast, but after that one meal it's downhill from their. But at least he is drinking a lot of fluids now. One of the major side effects of this drug is constipation. He doesn't have "solid" movements(more like a slurry) (Sorry to be so graphic) but still seems to feel like the bowel doesn't completely evacuate. Almost like the lower bowel gets impacted, but nothing solid seems to form. He recently started using suppositories with minor success. I have to be careful when I give him senokot, because then it cause diarrhea and real loss of control. We will see one Dr. tomorrow, but we don't see his oncologist until the end of May. I will try to find out more how to handle the constipation/diarrhea/loss of control at that time. Also, hopefully by then, we will know if the Thalidomide is slowing the MM progress. (please keep special thoughts for us)

Even though I'm supposed to be the caregiver, my Mom is still able to help with his toileting, believe it or not. She helps to clean him up and wipe him, because he doesn't have the strength or flexibility in his arms like he used to.

If this were my Mother (and eventually it will probably come down to that, I will feel comfortable enough to help her with this aspect, being that it is woman to woman) but THIS IS MY DAD!! I feel embarrassed for him and myself. We do try to make light of the situation, but I think he knows how uncomfortable I feel. I have helped him shower, by placing a towel over his private parts while he is seated on a shower seat and then wash him with the shower wand.

I try to help him maintain his dignity.

But so far, when it comes to him having bowel incontinence and accidents, my mom has helped him more. He does use the protective undergarments, but at times there still is leakage. And now he can't even tell if the urge to go is there or not. I'm sure this is a combination of the chemo, pain medicene (oxycontine & oxycodone....very heavy duty) and of course, the mutiple myeloma itself.

It's like I can handle everything else. Preparing & dispensing medicene for both, getting them to & from Doctor appts. Making calls on their behalf, paying bills. Keeping their medical information updated for each doctor/onc. or VA visit. Make or pick up most of their meals (I'm a terrible cook--but neither have much of an appetite anymore,anyway), picking up prescriptions, keeping watch over them during the day & night. Seeing to every other need I can, but this one issue regarding my father.

How can I get over my stupid modesty issues? I still lock the bathroom door even if I were home alone--LOL

Has anyone else felt this way? How do you overcome it and just do it? I have to put his needs first, but I Thank God that even with my mom's Alzheimer's she is doing everything to help her husband of 55 years and he is so very grateful.

Sorry, this is so long & I'm rambling on here, but as you all know this is a hard journey to walk.

TIA & Blessings to All, katclaws

PS. On a happier note we are expecting our first grandchild--a little girl in July. She will also be my parents' first great-grandchild too. I am praying that my Dad will be with us long enough to see her be born. It is all so bittersweet.

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((((Kat)))) i 2was wondering how your dad was doing. as you know my DH has MM also, but he seems to be doing pretty good right now (knock on wood). He also was on the Thalidamid, I can't remember how long he was on it though, quite awhile though we think. yes that and the pain meds do cause constipation. Right now DH isn't taking any thing for the MM, after he got off the Thalidamid, he was on Velcade...has your dad had that yet?? he was on it for a while, then dr took him off it, his feet and legs were causing him so much trouble (neuropathy), but his counts have remained stable quite awhile, thank God, we really believe that God has touched him! DH takes Miralax for his bowels, seems to work good for him. the first time he tried it, he didn't think it worked, so stopped it. then months later we tried again, and he's been taking it ever since, he only takes about a Tablespoon every night. I put it in a glass and add a little water to dissolve it, then fill the cup with diet twist-up from Walmart, but you can use other stuff, pop, or juice, etc. doesn't have much taste to it. as a matter of fact, our 10 yr old DD has to take it and she takes a LOT more than DH does! sometimes it takes a couple of days for it to start working though, but you can increase or decrease the Miralax, you might want to ask his dr about it, even his reg. dr could prescribe it! oh another thing when DH was losing so much weight and didn't want to eat, I would make him milkshakes and put in Carnation instant breakfast, for more protein, or if your dad likes Ensure or Boost, you could mix it with the milkshake. DH never liked either one of those, and could tell it was in the milkshakes! but didn't mind the Carnation instant breakfast in it though.

as for the other problem, don't really have an answer for you! i know it would be hard to do, i know when my mom was sick with pancreatic cancer, I had to help wash her, an was uncomfortable too!, i let her wash her private parts! I help DH take his shower, but thats different than it being your dad! Maybe someone else has some ideas for you!! good luck to all of you!!! DianePA

    Bookmark   April 26, 2005 at 8:53PM
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Katklaws-(love that name)-How does your dad feel about you cleaning him up? I think that is the first thing I would worry about...I do this for my uncle when he is incontinent...he doesn't say much about it and I know he is somewhat embarassed by the situation, but I think we have come to the inevitable conclusion that it is something that needs to be done. At this time it is a fact of life. I think by trying on your part to maintain his dignity, that is the only thing you can do to make it any easier. I never thought I would be doing this, but... As odd as it sounds, thinking about possibly doing this for my dad...makes me uncomfortable. Perhaps that's because I never had to do it for him. Simply stated, I think it's all what you get used to doing and what is necessary for both of you, all circumstances considered.

    Bookmark   April 26, 2005 at 9:55PM
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Kat, I can't speak to the modesty issue because I never had to do that for my dad and very little for my mom. But in terms of the "regularity": I have found that apple pectin supplements, sold in health food stores, are excellent in forming bulk. Most diarrhea is caused by not eating enough fiber and bulk-forming foods, contrary to what you might think. Also, acidophilus (another supplement) is helpful in restoring the "good" bacteria in the colon. Of course, check with his doctors beforehand.

I went to Mexico five years ago and was fine while I was there, but a week after returning home I was in the bathroom every five minutes. The doctor never found anything wrong (naturally) so I started researching natural supplements and that is how I came on the above. Also, garlic capsules are a natural antibiotic, in case there is any sort of infection going on. But again, check with his doctor before administering any of these supplements since he is on so many other meds.

    Bookmark   April 26, 2005 at 10:43PM
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Kat., I don't know what to tell you. I take care of Mum and do the urostomy change once weekly, barring a "failure". Suffice it to say, I've seen way more of my mother than I have since I was minutes old. :) . It's NOT the same as your situation! but you deal with the necessity of any given situation as required.

My own experience is that once I simply took bold strides to deal with an urostomy failure or to "check" to be sure Mum had adequately cleaned her, uh, "personal" area, I was "over it". The first time is the toughie. You simply have to put YOUR feelings on hold and you have to deal with the reality of the caregivEE's situation.

Take a deep breath. Tell yourself it has to be done, and handle it the same way you would if it was a toddler in need. JUST DO IT and then forget it. If YOU make it a "matter of fact" occurence, your father will, too. And he'll be thankful and willing to ask for your assistance in coming weeks. All of us, as caregivers, have to "rise to the occasion", putting our own silly hang-ups on the back burner. The first time is the hardest.

Relax! do it and you'll be fine. Trust me!

    Bookmark   April 30, 2005 at 12:33PM
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That might break the ice a little. I have worried about this with my dad too. Our eyes have met several times as we have had to deal with more intimate details; we are both thinking, do we have to do this??? But, the other day, we were at his urologist, and the tech did a bladder sonogram. He just barely lowered his boxers. After the tech did the sono, I just automatically stepped up grabbed some paper towels and started wiping off the gel. Dad never said a word. I also think that he's less and less aware of what's embarrassing to him, but still, this experience broke a bit of barrier for what I think I can be comfortable doing... Maybe you could assist your mom in a similar way????

    Bookmark   May 15, 2005 at 10:12PM
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My heart goes out to you for caring for both of your parents. I've also experienced caring for two ill parents. My dad died of Alzheimer's Disease in 2002, and I'm caring for my mom now. I understand how difficult it is to get past the modesty issue, and I know how important it is to try to maintain your dad's dignity. I did the same thing you're doing now--having him sit on a shower chair and covering his private parts with a towel. I made sure I had everything ready before we got started. It helped me to just focus on getting it done and over with. I kept up a running dialogue to try and distract him. I know that it's a different situation because of my dad's level of confusion. It will get easier with time.

I have a recipe for a natual laxative that might be helpful for your dad. The fiber should hopefully help him to have more solid bowel movements without straining. Constipation is a problem for my mom because she passes out on the toilet when she strains. A home health nurse gave me this recipe. This has really helped my mom. Check with your dad's doctor to be on the safe side. I hope this helps your dad.

1 cup applesauce
1 cup unprocessed wheat bran (not bran cereal)
3/4 cup prune juice
Mix ingredients together. Take two tablespoons of the mixture every evening for a morning bowel movement. Drink a large glass of water. Add more prune juice to the mixture as necessary.

Kat, I wish you the best in caring for your parents and congratulations on the upcoming birth of your granddaughter. (((Hugs)))


    Bookmark   May 16, 2005 at 2:56PM
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I just want to thank everyone for their advise, suggestions and caring thoughts. And thank you for supporting me as your fellow caregiver. It means so much to me.

We are now using the prune juice and stool softner daily and it has helped my Dad tremendously. Thank you Aunnie for your "Constipation Cocktail" I'm printing it out just in case.

I've also talked more with my Dad and he understands that if/when things get to that point, I will do what needs to be done re: the modesty issue. i just want him to be able to keep his dignity and if we have to use humor, we'll do that too.

Diane, my Dad was on Velcade. It worked for about 2 months, but then he had to be taken off of it. I think if he were younger and stronger, he would have had a better outcome. The 10 day "rest" period just wasn't enough time for him to "recover" before he could go onto the next round of Velcade. I truly hope it works well for your DH. It is an excellent new drug for MM. They fast tracked it because it had such a high positive response rate. Now they are starting using it in more clinical trials for other blood cancers. I visit the Leukemia & Lymphoma Society BB almost daily. Lots of great information there.

My Dad seems to be doing so much better though, on the Thalidomide. He is eating & drink fluids better and generally feels better than when on the Velcade. I think they try to go easier on the elderly patients when it comes to chemo.

Anyway, a big hug & thank you to all for your input.
And, if you wouldn't mind, please keep my Dad (and Mom) in your Special Thoughts & Prayers. We go to my Dad's oncologist on Thursday and will know more if the Thalidomide appears to be helping him. This is the last available treatment available to him. I have put this in God's hands and trust in Him, but I am still hopeful for even a short remission.

Good Wishes & Blessings to All,

    Bookmark   May 24, 2005 at 3:49PM
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Aunnie, how are you doing? i just had to jump in, the recipe you gave was the same one that the nurses hgave us when they used to come to our house and it does work.
Katclaws, iM the official urinal dumper-outer here and i get to empty the commode. al just says i betcha you never thought you'd be doing this. (no i didn't), i just say it's my job. al always has his "legs" covered, he does not want anyone to see what is under that sheet or blanket. i wash his hair at the kitchen sink - and its not fun and it makes a mess this is because of bathroom is too small for him to get in with his wheelchair. i think it's more embarassing for the patient than the caregiver.

    Bookmark   May 25, 2005 at 12:45AM
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Well the only way the son tolerates my doing all this and more is I am his MOM!! He says I saw it all a long time ago, so we are just back to what I did when he was a baby.
When my mom was ill, I could care for her, and even showed my dad how to bathe her. We had a shower bench and loaned that to her so she did not have to stand.
However, when my dad started his problems, I will admit he had enough thinking capabilities to clean himself, but I had to clean the room, floor and walls. He just got it everywhere, still don't know how. I don't know if I could have done private area cleaning, I do it now, but not the same.
You have my best thoughts that you manage to do this without trouble--or at least not a lot of trouble.

    Bookmark   May 25, 2005 at 2:57AM
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