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Topic Have you given up on getting your PD to the bathroom? Go to previous topic Go to next topic Go to higher level

By Lacy On 2010.11.14 00:56
I've come to the conclusion that it's more exhausting to try to get him to the bathroom every time he needs to go than it is to just change his Depends. As for bowel movements, then it's worth the effort.

He's been incontinent for several years now following prostate surgery and up until a year ago he was able to get to the bathroom easily and take care of everything on his own. This past year though he's declined to the point where it's very difficult to get him to the bathroom. I feel guilty not making the effort to get him to the toilet, but it absolutely takes everything out of me to do it! How do you all deal with incontinence?

By Pick On 2010.11.14 02:16
You have absolutely nothing to feel guilty about! Urinary incontinence is a leading cause of caregiver fatigue and the reason a lot of patients end up in skilled nursing facilities....their caregivers become so exhausted dealing with it that they can no longer care for their loved one.

My dad still makes it to the bathroom sometimes to urinate but he also goes through many, many Depends changes....sometimes every 10 min. We also have a fancy "no-spill" urinal that we use at bedside, chairside, sometimes even in the middle of the living room. At night we use an external catheter which is great when it works. Have you ever talked to your PWP's urologist about scheduled voiding? I find it helps but it might be different for prostrate patients.

By Emma On 2010.11.14 04:43
Ah... incontinence. It's a huge issue for us too. The problem we have with Depends is that my husband won't go in them, or if he does he then trys to immediatly remove them which ends up being a big problem too as he gets them all tangled up in his clothing or pj's. We talked to the doctor about a catheter but he discouraged it because of risk of infection. A plastic urinal has worked best for us at night but lately he has trouble getting to the edge of the bed and sitting up to use it. We don't sleep in the same room because of his REM sleep disorder so by the time I hear him on the monitor and get there things are already a mess. Toileting is also one of the big reasons that it's hard for us to go anywhere. It seems that a lot of our relatives have only a small half bath on the main floor of their houses and there is barely enough room for both of us to be in there. We usually try to just limit liquids before bed or going anywhere (we do keep a urinal in the car). I don't have an answer but maybe someone else will have a unique solution that we haven't thought about.

By Michele On 2010.11.14 07:08
Emma, I wish I had a solution. Frequent urination, or in my husband's case, frequent urges with or without urination, keep us at home a lot. Because he always feels like he has to urinate, it is difficult to go anywhere. I'm tired of going into men's room with him and refuse to do it anymore. We also keep a urinal in the van. Getting him into the toiler at home (seems like every half hour when he is constipated) is exhausting for both of us. We keep a urinal in the kitchen and the family room. We've tried just about every medication for urinary incontinence with little success. Catheters are too risky due to infection. It is a huge issue and one that restricts his life even more.

By Pick On 2010.11.14 10:12
Emma and Michelle,

I just want to clarify that the kind of catheter we are using at night is an external aka condom aka Texas catheter. They are non-invasive and slip over the penis like a condom--hence the name--and attach to a drainage bag. To my knowledge they pose little to no risk of infection (unlike internal catheters).

By Emma On 2010.11.14 11:04
Thanks, I'm not familiar with that type of catheter. I'm going to check into it, it might be worth trying.

By Lacy On 2010.11.14 11:15
We have tried the external catheter with no luck. They don't stay on and I've used everything short of super glue to make that happen.

I totally forgot about a urinal. We have one but not sure how effective it would be because he never tells me he has to go to the bathroom anymore, he just goes in his Depends. Guess that's the route we're taking from now on.

We, too, stay home a lot because of the incontinence. It's really very hard on him to go anywhere. We're lucky to get him to the doctors and dentist, let alone go visiting anywhere. Friends and family have been wonderful though.....coming by to keep us company.

By Pick On 2010.11.14 11:54
I always tell people that external catheters are great for the 10 min. they work haha. We've tried many different brands and so far the one that seems to stay on the best is "Freedom Clear" made by Coloplast. Its the self adhesive type and I just ordered a lot of 100 for about $1.65 a piece.

Another trick I've had success with in hospitals is to use an ostomy bag. Insert the shaft of the penis through the hole and use the adhesive "ring" portion around the base (after shaving, of course!). Unfortunately they cost at least twice as much as condom catheters, though.

By parkinit On 2010.11.14 23:19
We have several urinals by the bedside.

By overwhelmedinFL On 2010.11.23 10:46
This is my biggest issue when caring for my mom.. it is exhausting and I am 30 years younger than her so I thought it would be easier.

My mom does not help at all anymore when we get her out of the wheelchair..she about pulls me over. I can see we eventually could get to a 2 person assist..very soon.

My mom always wants to get out of the ALF and go shopping but I am exhausted just by 4 car transfers (in/out in/out) and one potty break... She does not understand how much physical work a trip to the drugstore is.. well maybe she understands but she just REALLY wants to be out.

I have been hoarding her money because I have no idea how long we will need her funds 5 years or 20 years..but something had to give. I now hire a nurse 2 times a month to take her out shopping at the mall. I get a WC accessible taxi and I let the nurse take her out to shop... Then when they come home I go over and we pick out one or two items to keep and I return the rest.. I am sure the stores hate me but it keeps my mom's desire to be out and shopping at a manageable level.

I wish mom could use a urinal... I know they have female ones but there is no way.. cognitively she is past that.

Transferring a person for potty visits is VERY tiring. If mom spends the night I use the bedside comode...I can take her right from bed to comode instead of (bed to WC..WC to potty...potty to WC...WC to bed).. That is a HUGE help... can some of you try those? For urine they are easy to keep clean. For BM you can line them with a grocery bag but since there is no water in there the odor can be a bit much... We use it for urine only.

By Emma On 2010.11.23 11:35
We have a bedside commode but they don't really work well for men who sit down to urinate. The opening in the seat is too small.

I know what you mean about how exhausting it is to move someone who is on the verge of needing a two person assist. When the person can no longer help the caregiver with moving their body it is like trying to move a cement statue. I can only imagine how tiring and uncomfortable it is for the patient. Our outings have been greatly reduced because of this issue. My husband weighs over 200 lbs. and sometimes I just can't do it.

By overwhelmedinFL On 2010.11.23 11:49
Emma..I don't know how you do it!! My mom is about 190 but she is only 5'2"...You not only have to deal with weight but height!

The hardest part is that any noise or visual distraction just takes all her focus.

My latest success in helping with the focus is telling her to watch my toes. I move my feet as I want hers to move and she tries to follow helps a bunch with the freezing.

I have to turn off her TV...close the bathroom door so nobody around will distract.. It is SOOO hard when we are transfering in parking lots as I have no control over the distractions... car doors, people walking by, kids crying, all that makes for very long transfers.

I have looked into a WC accessible minivan but they are very cost prohibitive. I might just do a taxi from time to time to give myself a break on transfers.

By packerman On 2010.11.23 12:20
would earplugs with calming music (ipod?) work to cut down her distractions when you are out? if you can't control the environment, maybe you can influence it?

By overwhelmedinFL On 2010.11.23 12:27
I don't know but might be worth a try!

She might get mad at me LOL... She gets mad when I ask her to focus on me...focus on walking, not to worry about the kids screaming across the parking lot.

She says I am bossy:( Oh well..... if that is bossy she has to deal with it I guess.

It is very hard to keep my patience... but I try as hard as I can. I swear she has selective hearing just like my husband.

By Lacy On 2010.11.23 12:50
UPDATE......I posted the original message, and since that time he doesn't go into the bathroom anymore at all except for BM and that's only when constipation sets in, which is very, very often.

We are pretty much at 2-person assist now. He can't/won't walk with the walker anymore so we've resorted to a wheelchair. I bought a very nice light-weight transport wheelchair at Walgreens (on sale from $159 to $99) which is just perfect for getting him around the house.

I don't know WHAT I am going to do when I don't have the extra person to help me. What DO you do when there's no one to help you? Last night getting him into bed was almost a disaster.....he missed the bed and was wedged against it with one cheek on the bed and I was literally holding him up until our friend came running to help me. I don't know what I'd have done if he hadn't been there.

Focus: He sees things I never see....a tiny speck on the floor and he's relentless about getting it up. Could be a crumb or scrap of paper, but it has to be picked up or it'll annoy him until someone does it. GRRRRRRR (I try to see humor in though.) But try to get him to concentrate on his feet to get him from here to there, forget it! Distractions are everywhere.

By overwhelmedinFL On 2010.11.23 13:14
Lacy... thanks for updating.

Is there some type of bed transfer chair you can look into? I am looking into one for mom. Even her nurses have a rough time if they do it on their own...they often end up on top of her in bed and then they giggle madly and then mom has to pee...a vicious circle I tell you!!!

Oh and my mom and the speck of paper... boy do I feel you sister. I joke that it is like a drug addict drawn to crack... she cannot let it go. This early on caused most of her falls. She does not use the grabbing aids I have bought her about 20 of...she instead gets them stuck in her lift chair and breaks them all. I FINALLY got the message if she was sending me one LOL

It will be right next to her hand (the grabber) and she won't think to use it. She is mentally separated from the reality of her body. I don't blame her at all I guess.

Does anyone elses PD reach for stuff that is 5 feet away as if they are about to grab it? My mom does and then her hand brothers coined the phrase "when mom uses the force"... as in Star if she can will the cup of coffee across the room into her hand.

I hate when she is frustrated... I love it when she giggles and has to long as I am not the only one around to assist.

Let me go look up a transfer bench I saw recently..might help with the bed. the bed is hard. Do you have a hopsital bed yet? Is your DH on medicare yet?

By Emma On 2010.11.23 16:56
overwhelmed, My husband also reaches for things that are too far away. His visual/spatial skills are severely impaired. He will sometimes park his walker in front of the toilet or a chair and then cannot figure out why he can't sit down. I suspect that this is more a function of the dementia than the Parkinson's.

By Mary On 2010.11.23 17:13
"When mom uses the force!" that made me laugh. I can just picture it.

Incontinence was my worst nightmare toward the end of caring for Dad. He had no control of urine or bowel but he insisted he did. When we needed two to move him about, I had to insist he no longer use the toilet. He would sit for 30 minutes or more and nothing. I'd help him to stand to clean him and, well, lots of something all over him, the floor, the toilet and, yes, me! It was actually easier for me to clean him up and change his depends than to try the toilet. That way the mess stayed on his bottom and in the depend. He never accepted not using the toilet and was not happy with me. I tried everything before that point. All kinds of external catheters and gadgets. His "thingie" was too small though. They also have external stuff for bowels and that was too uncomfortable for him and for a small man, he had deep cheeks!

By BOCareGiver On 2010.11.24 01:55
Re: Odor in bedside commode. Got this tip from an attendant. Leave 2-3 inches of water in the commode pail with some cleanser (e.g., liquid Spic and Span), etc., to mask odors. Makes it easier to clean and generally more tolerable.

By hubb On 2010.11.24 13:57
One thing I love about this forum is that you read about small things that are happening in your situation and makes you realize that instead of being upset with your PD spouse/parent, that it's part of the disease. My husband, who has macular degeneration, has to sit about one foot from TV to see it,but can see a spot on the carpet, a tiny piece of paper on the floor and won't rest until it's picked up. And he also pushes his walker right in front of his chair or toilet and then can't figure out how to go from there - and this is a man who landed jets on an aircraft carrier for years and also can't remember how to operate his hydraulic chair. Sometimes it's these little things that get to you more. A quote I recently read said to be thankful for what you receive and for what you don't receive - guess I have to remind myself to let the little things go before they become big things - all in a day's work for a caregiver.

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