Hi Everyone. I was pleased to find this forum and am impressed with the amount of information and support here. I tried to post last night but I don't think it went through due to system issues (if there are two out there forgive me). My mom has LBD and we have been dealing with this for several years now. Her disease is now progressing to the point where she no longer wants to walk, everything seems to hurt her and she is possibly suffering from Capgras Syndrome which is when the person thinks things or people they love have been replaced with exact replicas. For my mom it is her house. Wondering if anyone has experience with this and has any ideas on how it is treated and handled by the caregiver. I have a large family and my four sisters, myself, and two hired caregivers handle my mom's care. I read about those of you who do it on your own and I can't imagine. With all those people it is still a challenge to cover all day and night every day. Of course we all have full time jobs except one so that certainly limits time. We have an appointment at a movement clinic later this week to see if there is any way Mom can be helped to feel less pain and stiffness and to try to get her more mobile. I am worried about bed sores since she is sitting so long and have noticed some red spots on her. Very worried as we have not handled that yet. Any suggestions on prevention and caring for bedsores when they only want to sit in a chair or go to bed? Thanks for listening

AH, yes, vaginal cream... Good stuff for yeast infections any where external on the body. Oddly, a friend of H's who does triathalon events gave him this tip several years ago. Docs are always prescribing/recommending anti-fungals for jock itch and related issues. They don't work well if it is yeast. Over the counter creams sold for vaginal yeast infections work wonders for external skin yeast infections, too. Under breasts, around the groin, any fold of skin retaining moisture is vulnerable. Great stuff. Thanks for the memories

gee MB never thought of vaginal cream.My husband had yeast problems in the areas you mentioned.Many time I would place gauze, etc on the areas to keep them dry.
See I learned something new today and intend to pass it on.
It is very important to watch the heels as they can produce sores like ones bottom.We had special booties for my aunt and hubby.Also made sure they were lotioned good.
My husband was one to perspire so we had to attend to all areas they could become affected.The groin area was a nother place we had to watch

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Pay attention to keeping skin under breasts, arms, folds and vaginal area dry

Good one MB I completely forgot and there is a WONDERFUL script for that too that I got turned onto not too long ago its "Nystatin" its a powder Vickey ask moms PCP if he/she can prescribe it for just this issue hopefully if he/she does they explain how to apply, its important, it only takes a little amount on any affected area brush the grit off and let the fine powder linger Honey this stuff clears it up faster than anything Iv used to date.
If that script cant or wont be filled another thing to keep handy *dont laugh* its vaginal cream you know the one you get for yeast infections? Yes that one I keep tubes of that with me at all times for my own patients cause how the heck you tell a man LOL or even some women to go out an buy that stuff and rub it in *chuckle* those areas well lets just say I got some really bewildered looks
Because rashes that occur in the creases and folds of skin are yeast based this stuff clears it up quick when all else fails.

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t has a memory foam mattress and I was thinking about one of the air pressure toppers but I notice you said they are useless. Do you think that is the case if there have been no bed sores yet? We just want to avoid that happening. She has red spots but no sores.

Vickey, you are so WISE to know ya can't let this stuff EVEN get started. If a sore becomes red and doesn't blanche (turn white) when you press on it and release, it needs treatment. Duoderm dressings are a good thing to have around. If you have home health care, point these out to the RN and ask if she thinks they need a duoderm. Pay particular attention to elbows, feet & heels, as well as "sitting" bony prominences. If you don't have home health, talk to the doc and see if you can get it.

While the "topper" style air mattresses aren't real great, they ARE better than nothing and if your mom hasn't had a Stage II-III decubitus yet, Medicare won't pay for the better kind. Pay attention to keeping skin under breasts, arms, folds and vaginal area dry (use talc not cornstarch - I like Amen's Medicated Powder a lot), properly moisturized (sounds contradictory, huh!) and vary her sitting position. If she is able to adjust herself in the chair or bed, that's GREAT! Keep her encouraged to reposition herself if at all possible. The more you can keep her moving for herself, the better. Lotions & ointments with aloe, tea tree oil, vitamin E and A are great. For diaper area, I like a preparation available here called Boudreaux's Butt Paste mixed 50/50 with Burt's Bees coconut foot cream (not a lotion - more like an ointment). The active ingredient in the Bodreaux's is zinc oxide, so add a little A & D ointment to it if they don't have Boudreaux's in your area.

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Anything to prevent a problem for her

That's the ticket!! Good luck! Sounds like y'all are doing a great job!!

Thanks to all of you for your resoponses. It felt good read your words of wisdom. Moms_Buddy I plan to listen to your advice regarding physical therapy. Mom is definately showing signs of stiffening up and slowing down. I have found that medicare really doesn't pay for much when it comes to this type of care. We purchased a hospital bed that will be arriving later this week. It has a memory foam mattress and I was thinking about one of the air pressure toppers but I notice you said they are useless. Do you think that is the case if there have been no bed sores yet? We just want to avoid that happening. She has red spots but no sores. Bunnys_girl I am going to ask the doctor about ointment at Friday's visit. I plan to research air cushions for wheelchairs later tonite. Bobcat you reinforced for me that we have to keep mom active - even when it is difficult. I have felt this way right along and I am the only caregiver that takes her out once a week. It is no small task but I feel as though she needs normalcy - she needs to see the sunshine, people, houses, etc. It's funny - she can be so blank sometimes then we have "good days" that are worth the world to me. Opinionated - I plan to get one of those mattress covers. Anything to prevent a problem for her. Mae - my heart goes out to you. I realize I am very lucky that so far my mother hasn't suffered paranoia. Mom has had hallucinations (they don't scare her) and delusions but thankfully she has not gotten angry or frustrated with us. I honestly don't know what we would do if she became paranoid at this point. I guess we all just have to take this one day at a time. Many thanks to all of you.

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They said the only other way to prevent bedsores was for her to move to a new position at least every two hours, more frequently if possible. The red pressure points are an early warning sign, so you'll want to address it.

Welcome, Vickey! Regarding pressure points, even with an air mattress, if a person is not moving themselves you MUST move their position every two hours or so - the mattress will NOT do it on it's own... guess how I know! You'll find out if you ever have questions about decubital ulcers (bedsores, pressure sores) and wound care as I have tons of experience with that (and will be performing my magic act on Mom a few moments from now). My Mom has been completely bedridden for 6 years (on Labor Day) so this is an area I understand all too well. Be SURE to keep up physical therapy - manipulating limbs, flexing exercises, range-of-movement, etc., OR joints will freeze and contracture will set in... guess how I know that, too!
We have been through several mattress replacement systems. First is the alternating pressure air mattress that rolls on top of the regular mattress and is about as useful as mammaries on a lawnmower. MUCH better is an alternating pressure/low air loss mattress replacement which comes with the air compressor. BUT you STILL have to adjust their positioning every few hours... unless you have a Clinitron - the Cadillac of beds... Medicare requires certain things to happen BEFORE they will pay for certain mattresses... for the kind Mom has, a patient has to have had a Stage III decubitus to qualify. I know, I know - makes no sense, but after a while, you won't expect Medicare to make sense any more...

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That makes for a lousy nights sleep so rarely does one person stay more than 24 hours without being relieved for 48 hours.

Tell me about it. I haven't slept for 8 continuous hours in the past 7 years!! I "retired" to care for Mom and will have to "unretire" when she passes. With few exceptions, it's been me for all this time. While I appreciate the different ways we can care for folks, having caregivers and people in my home drives me crazy, and we cannot afford them, so I'm it. As for sleeping, I take the advice given to new moms to heart: sleep when the baby sleeps. When Mom is asleep, I sleep. When she's awake (sometimes for DAYS at a time), I am right there with her. It's TOUGH so having a support system of alternates to "spell" you is a GODSEND!! I don't encourage folks to be a lone caregiver in most cases because this is the toughest way to do this job and it's mighty hard on an individual. I am a weirdo, so it doesn't bother me as much as some, but I can validate how LONG it feels and how confined a caregiver becomes...

For sitting, there are gel cushions that help, but best to move her position, etc. every couple of yours. Sitting all day in a chair, while good for sitting balance, and circulation, is not good for skin, so you have to balance the differing needs. A chair that reclines is great because you can really vary the positioning and pressure points.

Twice a day, your mom will need passive range of motion exercises. If she can participate, all the better, but if not, you will have to move her limbs for her. Mom & me used to play games "kick my hand", "ride a bicycle", etc. until she was no longer able to participate. Because she would not allow me to do her passive RoM exercises (I SHOULD have INSISTED - one of my mistakes that I regret), her knee and hip joints are now frozen. I have managed to keep the contracture at bay, but if I had been more aggressive with the RoM exercises, her joints would not be in such bad shape as now. The biggest rule is keep 'em moving and sitting for as LONG as you can, no matter how much it drives you and them crazy. Our bodies were not meant to be "laid up" and being bedridden causes many other problems you don't want to have to face any sooner than necessary!

Having patients sitting on a heavy pad helps to reposition them. You move the pad, not drag on the patient. MUCH easier on fragile skin that tears like parchment.

Vicky, welcome.My husband had Parkinsons with LBD.I am not familiar with the syndrome you have described.When we went through the stage of my husband seeing chairs, etc as people, the doctor called it eye hallucinations.When it began my husband was not suffering , too much with dementia.After sessions they helped my husband to understand what he was seeing was not so.My husband suffered more with paranoid psychosis.Always believeing someone was out to hurt him iin all ways he could imagine.
Bed sores can be a very serious problem.Hubby was so prone to anything that dealt with the skin.Turning is good in bed.You can put a pillow one the side to prevent then from going to the flat position.Sitting involves different measures.I am sure the aides will help you.If a sore were to come about they do have wound specialist on the list of those to call.
Let us know what you find out about her hurting when mobile.I ALSO FOUND A LOUNGE CHAIR TO BE HELPFUL AS THEY COULD RECLINE AND TAKE THE PRESSURE OFF THE BOTTOM

Howdy Vickey welcome in glad you found us with all the maintenance issues last night
Op is correct on the alternating air mattress if thats not possible when she is in a prone position switch her every 2 hours from one side to the other and prop her with pillows also if she can stand to have pillows while she is sitting alternate from one side to the other every 2 hours keep the area dry and clean at all times once you see a red mark appear attack it toot sweet.
There are many ointments out there even ones that are prescribed ask her PCP right away.
I like the Zinc Oxide ointment myself *I dont know if you have a Walgreens around you* they carry it it contains 40% Zinc oxide as opposed to diaper rash cream that I believe only has 14% in it try to stay away from baby powders and the like as they tend to scratch and irritate the skin.
There are also cushions on the market for wheelchairs that are filled with air that do a great job at relieving the pressure when sitting.

Hi Vickey, I am glad you found ECO. It is wonderful that your sisters are working together for your Mom.

Opinionated is right about the air mattress bed being a big help. Still if she can get up to get in her chair, medicare might not pay for it. My Mom can get around a bit with her walker. We use a gait belt to keep her steady which gives her the confidence to move. The "egg crate" pads in her bed and chair help some too. She is also right about changing their positions every 2 hours, left, right, back. We get Mom up twice during the night to walk a few steps to her bedside commode, where we make sure she is clean and dry and then walk the few steps back to bed. That makes for a lousy nights sleep so rarely does one person stay more than 24 hours without being relieved for 48 hours. I have done 48 hours with a 24 break a few times and I think I was born too old for that very often. Anyway, so far Mom's skin is holding up. we use lots of aloe vera gel and very gentle massage to keep the circulation up, but you do have to be very careful with that. Too much and you can aggravate the break down. Later , we'll find some good links but right now I have to go.

Welcome here, ( by the way, the site did shut down for a while last night for some upgrades, so you weren't imagining that, glad you tried aain.)

If the clinic can help you with a way to take several short walks each day it will make a world of difference

When it looked like my Mom was going to be bedridden for awhile, the homecare nurse had her doctor recommend a hospital bed and a special pad that prevents bedsores. It inflates little sections in rotation, so that the pressure is never on the same spot constantly. Because the doc recommended it, Medicare paid for its rental. It's about as noisy as a fish tank pump -- not too bad and everyone soon got used to it.

They said the only other way to prevent bedsores was for her to move to a new position at least every two hours, more frequently if possible. The red pressure points are an early warning sign, so you'll want to address it. Good luck to you! :-)