Text Size: A+  A-  Reset
Home Learn About LBD Find Support Online Community Professionals Ways to Give About LBDA  

Tips for Daily Living with Lewy

Baths and Showers: Liberal placement of grab bars keep him from grabbing onto me. A bench that extends outside the tub allows him to sit before I lift his legs into the tub. I try to pick a time of day when he is having an "ON" period; otherwise he's too hard to bathe. There's a company that has a kit for modifying a tub to make it easier to step into; it's http://www.tubcut.com. A tub/shower/whirlpool is at http://www.safetytubs.com Other tubs are at Premier Bathrooms. Call them at: 1-800-578-2899. If worst comes to worst, your husband can take sponge baths for the rest of his life. They work! For a peaceful and no-hassle shower, have your loved one wear a personal care garment. It made a difference when caring for my mom, giving her a privacy shield, instead of her feeling naked and exposed. Checkout http://www.personalcarewear.com.

Bowel habits: Early to mid stages: increased fluids, fiber, stool softeners. Later stages: laxatives, suppositories, enemas.

Breathing: Breathe Right Snore Spray aids nighttime breathing through the nose.

Double Depending: Instead of just hoping any overflow from the first will be caught by the second, remove an inch-wide strip of plastic in the center of the one closest to the skin. When it gets saturated, the excess will be caught neatly in the center of the outer layer.

DEPENDS Disposal: 1. I just save my grocery bags. Bought one of those tube type holders (you can actually get one to match your bathroom/bedroom). Hang it in the closet where I keep the Depends. Bag it, tie it and toss it.
2. I have a small step on can that comes with a (washable) bucket in it. The metal lid seems to control the odor. I put small grocery bags in there. It holds about a days worth of slip-ons.

Dressing My Husband: My husband has been in hospital since April '03. He is bedridden, although he does get into the wheelchair 2-3x a week. I hated to see him so pale and wan wearing the regulation hospital gown, so this is what I have done:
His T-shirts have been split up the back, ties/Velcro attached to the neck so it is easier to put on. When in bed the back is left open so as not to lose the advantage of the anti-bedsore mattress. Most of his slacks were elastic waisted, the elastic in the front half has been removed, an opening of about 3 inches cut where the fly would be, and again ties were used at the waist. (I have even used shoelaces in a pinch.) His shirt jackets and his warmer lined t-shirts have met the same fate, except that I have cut them in a sort of vertical 1/2 moon, so that when he is in the chair his back will remain covered. I have attached Velcro in such a manner that the rough part is on the outside so his tender skin does not come in contact. Remember, necessity is the mother of invention.
He looks a lot better and I think he feels more human as he doesn't complain when rolled from side to side to be dressed.

Drooling: Results more from PD issues and/or side effects of Sinemet. Recommend making a terrycloth bib from a handtowel w/velcro closure in back. Also, meds which decrease saliva output.

Incontinence: Cheaper alternative to Depends is Wal-Mart's Assurance protective underware. Use velcro tabs not pull-up type; they're easier to change. I use the Assurance (Tena) pads, the most absorbant that they have and put two inside an Assurance pull-up (which tears down the side) and it holds more liquid than anything else I've tried.
Detrol and Ditropan are not reccommended for use by LBD patients. They affect cognition. Most neurologists choose better brain functioning over incontinence. It's something you have to adapt and live with.

Mucus: Generic Guaifenesen Syrup or Robitussin (plain, not DM or any other) loosens mucus. Humibid LA 600mg tablets (generic is Guaifenex) also work.

Notebook of Information: I recently made a notebook from most of what is available on the LBDA web site for our daytime caregivers to read. Also gave a copy to our Hospice charge nurse. I must have copied well over 120 pages of reference materials. Index tabbed it all. They are reading it and saying things like; "now I know how helpful it is to wait 30 seconds or so for him to respond," and "how smart to line up chairs along the way when he walked." Now they are realizing I am not just paranoid about giving him medications without good reason. It is such a relevant reference to have on hand.

Self Care is not a synonym for Selfish: Self care involves separating needs from wants, and prioritizing needs. It involves refusing to do certain things for my LO at times. I don't find this unreasonable. One biggie: scheduling respite. After I meet friends, or make time to do something I've been wanting to do for a long time (these are pressing needs), I feel so much better.

Steel-Grip: To get your LO to release a tightly clenched fist, try gently massaging the fingers in the direction towards the wrist. To avoid gripping the wrong things, give LO a rolled-up washcloth or towel, or a small exercise squeeze ball to keep the hands occupied.

Storage: A good solution but only if you are really careful not to store all the stuff you just can't deal with. Why create another clutter place?

Toileting Cleanup: I used baby wipes basically for little cleanups or finishing touches. For any caked feces I use baby oil applied with toilet paper. For a massive mess, I use warm, soapy paper towels gently, repeatedly, until the area looks clean, then baby oil, then the baby wipes, and then pat dry with toilet paper.