Alzheimer's and Incontinence

Whitey,
I'm bringing @tntredhead @tsoy @lindabf @maxiesmom and @anncgrl into this discussion as they have talked about managing incontinence of the person they are caring for.

You may wish to read and join in this discussion too
- Caregiving and Reality http://mayocl.in/2lcNEEQ

Hi, Whitney! My husband has a different type of dementia but he also has incontinence. He wears something like depends and adds an extra pad to help absorb urine. The bed, sofas, etc. all have waterproof padding on them. Because my husband's dementia is different from Alzheimer's he does not act in the way you describe. He does, however, refuse to admit that he needs to change his depends on a regular schedule rather than waiting until his shorts are wet and, usually, the sheet where he was sitting. He will often use a urinal we brought home from the hospital. It is in the bathroom but he prefers it to the toilet. I am grateful because he was peeing around the toilet as much as he was peeing in it. I am confident that when his brain sends the signal to urinate it gets garbled in transit to the front of the brain where those type messages are interpreted and issued by the thousands every day. So I believe him when he says he does not think he needs to change but I know that he usually does need to change. It is completely different with bowel movements. He does not go very often and, somehow, he misses the toilet for at least part of each event. He often has diarrhea rather than solid and that often is a challenging mess. Today was not a good time in the bathroom aspect so I jumped on to this chat. Today he had two movements. One was not too bad in terms of clean up and all that stuff but I did take the opportunity to lure him into taking a shower. He never fully cleans himself. The second time was loose and I am not ashamed to tell you that I had to get up my inner wonder woman mood before going in and cleaning up that mess. It later proved to be near his bed rails on the floor beside of his bed also. So, today I have helped him clean himself, changed depends three times, three sets of shorts, three sets of sheets, on my fourth set of laundry. My body feels like I have been in the gym. He can walk a bit but getting up and down is usually beyond his grasp.We have a hospital bed. I have lifted him to a sit-up position and then to his feet and then helped him to wherever he was going about 30 times today. Much of it had to do with bathroom stuff.
Having said all of that...A friend of mine promised her mother that she would never put her in a nursing home. Her mother got Alzheimers and my friend told me after a few weeks that she was going to need to get new carpet, repair walls and replace wooden floors. Her mother would stand up in the bed, squat and pee /or poop. and then go off on a rant.She banged her walker into everything. Claimed she had not eaten when she had just finished and called my friends name over and over in a loud voice.I have not seen my friend in awhile. She never did figure out how to manage her mom's bathroom behaviors.
My choice has been to go with the flow. Literally. I protect against it rather than to try to fight it. Waterproof bedding and waterproof padding on sofas, etc.It is exhausting keeping up with the laundry, remaking the bed, etc. I don't have anyone helping me.If my husband becomes constantly belligerent and mean I will have to let him go to a home. If he were to be violent towards me or completely unable to walk I would place him in a home and visit every day. I have boundaries and I have determination. The key for me is acceptance. Big doses of acceptance.
I keep things simple. My house is in total disarray. I let a lot of stuff slide and caretake my husband. I use the chat rooms for support.
Why am I telling you all of this rather than telling you how to make your person change their behavior? Because I have very little control over my husband. He is slowly going away. Things are heartbreakingly different and they are difficult. My success with my husband comes from my success in accepting that what is....is.
Were I experiencing what you are experiencing I would need some home health people in or other family members helping. The decisions I would need to make would be heart wrenching. I would seek professional help and trust them and their experience. And, I would stick with us in the chat! You are not alone. God bless you!

Hello @whitey85 Good to e-meet you here. I am Scott and I was a secondary caregiver for my MIL who had FTD and was the primary caregiver for my wife for 14 years while she battled brain cancer, which also exhibited many aspects of dementia.

Based on my experience (and I am not a medical professional at all, just a well seasoned caregiver, that these types of phases/obsessions, etc. will come and go often. Some last awhile. Some leave as quickly as they appeared. Unfortunately, the disease seems to have a unique course all its own in each person it attacks. Frequently commonalities exist, but often not identical.

My wife was incontinent for her last several years and it was quite a battle. In my experience there was no option for changing the patient's behavior or desires, so all I could do was try and limit the impacts. First I got a rubber mattress cover for both the box spring and mattress. Then covered this with a fitted sheet to muffle the rustling. Then added rubberized pads under her for leaks. I also went to the hardware store and bought a very cheap hunk of carpet to put down on top of our bedroom carpet from the bed to the toilet. As this got too badly soiled I could just toss it away and get a new piece to replace it. I also used disposable thin pads we got from hospice (about 24" 24") all around the toilet and did the same with them. I taped the edges down to make for less chance of catching a toe or later wheelchair wheel. I also bought cartons of non-medical grade disposable gloves (I used U-Line), which finally saved my skin from all the scrubbing -- especially in the dry air of wintertime here. I also loved 3-M's product Avagard D (instant hand antiseptic with moisturizers). Very gentle and effective. We 'found' it because it was all over the place at Mayo and the nurses all swore by it. We ordered it through the drugstore at Mayo in Rochester over the phone.

I did find when I went up a size larger than the package suggested in the diapers she was using she was less likely to fuss with them.

Sorry for your travails with this. It is a tough one to deal with.

Peace and courage

Man! I had typed a long piece thanking you for your information. Scott, and I hit something and it went away. Probably circling Denver or Anchorage this very minute! LOL

I appreciate the options you offered for coping with incontinence. Certainly I have developed a way that works for us at this moment. Change is the one constant. I had no idea how much my husband would change, how quickly or how often. I don't know if this is true with other types of dementia. There are no professionals in my area who provide a general understanding of FTD. Most of what I have done, with incontinence in mind, developed on a long learning curve. I also had to be patient and let my husband come to his own understanding and acceptance of the absurdity of pretending he could get it done on his own.

I plan to caulk along the bottom of the walls of my husband's bathroom (mobile home) to prevent seepage when mopping up and then painting his bathroom floor with a couple of coats of an industrial paint and cover all with a urethane coating. I need to make that floor as non-absorbent as possible.

The home health care nurse frightened the bejesus out of me discussing the importance of cleaning up an area and my hands, etc. after handling human waste. It extends now to clothing, sheets, etc. I am fortunate that my husband is somewhat ambulatory and, as you know, any part of what I say is subject to change for better or worse.

I am glad we are highlighting incontinence. It is a topic most folks do not care to discuss and it needs discussing. We are at a point now that my husband believes I want to be caring for him and that I don't love the clean-ups I do love him and I am not ashamed of nor disgusted by him or our daily challenges. I do, however, have less patience than I would like and do get tired and less tolerant.

Each of the shares on the this topic provided me with a sense of commonality and I need commonality.

Thank you!

Hi @anncgrl I, too, far too often felt the feelings of being overwhelmed, impatient, and tired, tired, tired!

I agree with you. Not a topic many want to acknowledge nor discuss, but one that is very common with dementia and other diseases as well. We can attack as best we can and only with the ammunition we have. Sharing is very valuable! Wish I had thought of caulking!

I send you strength.

One of the things I found that was most helpful with incontinence was a pad that covers the entire bed - fits most half beds and hospital beds. This new pad - I purchased four - keeps the sheets from getting wet as well as the mattress pad. I also keep another pad under the sheet to protect the mattress. Another thing that has helped is that I trained myself to hear him during the night and to get the urinal. This took a while but it has helped.
Another important thing I learned recently is just how important it is to take care of yourself. I know we all say this but I didn't pay attention to myself until it was nearly too late and was rushed to the hospital with sepsis. Now - four weeks later - my doctor still won't let me bring my Tom home from the assisted living. Says I need at least another 3 weeks to build my strength up. Don't let this happen to you. After living under this strain for years, it takes on a long time to come back from a major illness. The doc told me that another 24 hours without antibiotics and I would not have lived. That's a scary thing to hear to PLEASE, all caregivers, take care of yourself.

Dear
Thanks for the health warning! The caregiver who helps me care for my husband has purchased gloves for me to use but I have to admit I am not always consistent about putting them on. After almost 60 years of marriage, I just am so used to being with him I don't think! My husband takes a great deal of diuretics so it is a constant problem. I just hadn't worried much. Will be more careful. What is the deal about the laundry? I wash 3 and 4 times a day.
Thanks again.

P

Hi Whitey,

My Mother would "Dig" at her briefs until the absorbent material spread all over the bed. I tried everything, then I tried men's cotton briefs without the flap over her briefs. She still digs but not through the briefs. Not sure that would help your problem, but maybe another layer would help??
Take Care,

Where did you get the big pad? I have one for under the sheets, but that just protects the mattress. I a washing sheets every day.

The biggest lifesaver for us is using an external catheter, briefs that fit snug around the legs, & regular Botox for a bladder that is super sensitive. We also use the washable bed pads. Have gone from changing the bed 3 times a night to a routine weekly washing. I am so thankful for the external catheter mostly.