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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
Replies to "Hello @whitey85 Good to e-meet you here. I am Scott and I was a secondary caregiver..."
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.
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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!