This seems to be a question that is not asked enough or we think what we are feeling is not as important as what our loved one is going through. This job we have taken on is a tough one and there are days when I think my "stress rope" cannot be pulled any tighter. Then there are other times that make those bad days just a memory. Do you feel like banging your head against a wall one day? And then the next day your loved one is attentive and loving and comprehends whatever you say? There are some who keep those feelings bottled up within themselves; others take the time for outside resources and others who look at sites such as this for some understanding. I do better when I have someone else to bounce my feelings off of. Let's face it....we aren't superhuman and besides ourselves and perhaps a family to take care of we now have taken on the responsibility of another human who is incapable of taking care of themselves. Do you breeze through the care giving without a problem? If so, I would like to know how you do it, maybe you can offer some new ideas; do you have feelings of frustration and need to talk about those? Come and talk and know that you can speak freely and without judgement and without finger pointing.
I am caring for my mother-in-law and have been for about 1 1/2 years. She has moderate dementia and incontinence. Other than that she is very healthy. Sometimes that short amount of time feels like 10 years and I wonder how long I will be able to do this job. I get so very tired of hearing the same thing day in and day out, but I have to remind myself that to her, each time she sees me, she is offering new information. At times I have no problems communicating with her, but it seems like more and more she cannot retain a thought longer than 5 minutes. We have had to make signs for her so she will know what she can and cannot do. So far it's working, but for how long? Maybe I will have to end up making her a "Book of Do Nots". She is on memory drugs, which don't seem to make a difference. So why do I continue to dole them out to her? I guess I'm afraid of what might happen or how she might act without them. I might have to rent a boat or buy a helmet! Sometimes I see something in her that leads me to believe that she could get aggressive and what would be my reaction to that? At the end of each and every day, after she is tucked into bed, I breathe such a sigh of relief. The "inner beast" is quiet at last, or at least for a few hours.
Pull up a chair and visit........I would like to know how you are coping everyday..be it good or with handfuls of stress.
I am now stuffy nosed, coughing, sneezing like crazy, sniffing like crazy - because the mango tree is right outside the front porch. It's blossoming. And I'm allergic to mango and mango trees. It's going to be a very long night, a very long week. I will go to Home Depot on Saturday morning to buy an air con. Tonight, I will take a cold shower and sleep tonight in shorts and tank top... Please don't let the mosquitos come in through the holes of the windows!!!! Mosquitos love me. They don't even bite my dad at all.
Well, air con broke down. I'd better call the plumber to fix the toilet leak. I'd hate for the toilet to break down....We only have one toilet, one shower, one bathroom.
I am older so I remember towelling diapers so to get the worst off I hold the garment into the flush of the toilet and I find that takes it and disposes of it all in a one - If it is sheets then use a disposable sheet over the main sheet.Again accidents will happen and in this case I hold the soiled part over a bowl and shower it into the bowl and empty into toilet. The in all cases garment or sheet I use a strong disinfectant with cold water in the bowl and pop on the rubber gloves and slew the fabric around - cold water so it doesnt smell worse than it already will. I empty bowl into toilet and repeat until all the soiling has gone. I actually find that this way I have no worries in using the washing machine and I never wash soiled clothes with other clothes.
If there has been a lot of soiling - last week was a point in question I run a boil wash through the machine to whicih I add sterilising tablets and I find that works brilliantly.
The one thing I will say is that it has altered my buying - I only buy clothes that I can wash athigh temperatires because you have to kill bacteria and you need 60C for that oh gosh F let me think 140 I think
dirty wash and water and something I have not seen in stores lately, called -Washing –SODA-, and boiled the heck out of it, standing there for 10 minutes plus, pushing down the wash into the kettle , because the kettle kept wanting to boil over... Yes that’s what it takes - 10 minutes PLUS,- at boiling temp of 212C..., to kill those critters, and Grandma’s white wash came out glowing, no Chlorine Bleach needed in those days...... I also agree with attaching 2 extra normal pads in the Depend to the lower inside leg-edges, so it keeps Depends from leaking , especially when on an outing... and a spare set in the pocket book !!! I do wish you well !!!
Philip Tierno, a professor of microbiology and pathology at the New York University School of Medicine said bacteria from the skin, such as staphylococcus, can be found on clothing and towels.
You may have been relying on your detergent to get rid of all the dirt and germs, but if you're not using bleach or very hot water, you're not killing the bacteria -- they're getting on your hands and staying in the washing machine.
"Most of the hot water people use is not hot enough. You need water that's between 140 and 150 degrees to kill germs," said Tierno.
The trouble is we all have clothes made from non natural fibres and they unfortunately dont like hot water. if you have this situation then you need to use a chemical antibacterial agent just to be sure.
We used to have what in UK is called a copper it was like a cross between an oven and a cauldron with a scrubbing board on the top and a mangle (I think you call them wringers) and yep it was on full bubbling boil for about 10 minutes current thinking is for less than this at somewhere between 3 and 6 minutes which is unfortunately because the washing machine doesnt hold 60C for that long - hey ho back to the big oven topped kettle
Don't know how Mum managed the nappies but I also used the cloth ones and dropped them into a bucket of cold bleach water. Every morning emptied the bucket into the washer ran a spin cycle then a sinse cycle and finally hot wash with detergent and dried them on the line of course. I used disposable liners which were like dry wipes and flushed them with the poop. You could get those suckers up so snug round the babies legs so there was no leakage.
Now what were we talking about? Oh yes whether it was sensible to move Mom into our home. I would add a resounding "NO" if you do do it at least add a second bathroom to your house just for Mom. It won't be her fault but the time will come when you will be glad you did.
I have to say that much as it is hard work I will keep my mum at home as long as I can and hopefully she will die here in peace surrounded my her memories. Why? Because I ahte the comerciality of care facilities and I know they have to run at a profit but boy in the UK some of them are dreadful. The main problem is that a lot of the carers dont have English as a first language and that is a REAL problem when someone is trying to understand them. The second is that if they are trained and in UK they have to be, then they clearly havent understood the importance of the skills they learned. Abuse is rife and while I might go scream in the garage at least I dont leave my mum sitting in poop while I do so.
I cream mums skin every day from head to to and her skin is in superb condition and always has been since I took over the care. Meanie me doesnt allow her to sit in one place for any length of time before I egt her up - does she moan oh yes but shed moan a whole host more if she got pressure sores.
I have a special set of pressure sore prevention cushions that she sits on
Would she get the type of food she like, the care that she needs and the rights she is by law entitled to in a care home? Im not confident ...so at home she stays and in the garage I will continue screaming!!!!
Remember: Life should NOT be a journey to the grave with the intention of arriving safely in an attractive and well-preserved body, but rather to skid in sideways - Chardonnay in one hand - chocolate in the other - body thoroughly used up, totally worn out and screaming "WOO-HOO, what a ride!!"
All I'm saying, Mallory, is that you have back ups when you need it. Hire if you want. I did that, and I told the person I hired that I'm her employer not my dad. Only I can fire her, not him. I told that to Dad, also. So that he knows that even if he fired her, it won't work - because I was the one who hired her.
Yes, I can see where your mom moves in and then rather not move out. It may be a struggle, etc.. But you can read around here the different ways several people succeeded in it.
Dad's constant upper right chest pain - I finally found the reason why. For the past couple of days, he kept talking about him having cancer. cancer, cancer, cancer. Last night, while changing his sweat-soaked tshirt, he again mentioned the pain. As I was wiping him down with baby wipes soaked with No-Rinse wash water, I noticed that his right breast area was hard. His left breast was soft. I pressed the right - solid hard. I've been trying to get him to the clinic to have it xrayed. He refuses. For someone who is afraid of dying, he sure is stubborn about seeing the doctor/ER, etc..
And she gets paid $320 a month.... 7pm... and I'm hungry. My lunch hour is at 1130am... Hunger headache and stomach pain coming. I need to change the poopy mess on an empty stomach. Can't throw up if there's no food to throw up...
It took me about 10 minutes to get the nerve to approach his mess. I actually walked out of the house, and walked the yard. I just didn't want to do it anymore. I stood by the sliding door, staring out and my thoughts turned to suicide. He's just starting his dementia. Mom took like 23 years. Comparing dad with mom, dad is going fast, though. I tell myself that I can hang on. But when I face the poopy messes, I just fall apart.
I threw everything that had poop on it. He told me not to throw it. Just wash it. I said no. I'm in no mood to go outside the porch, with a missing nozzle (neighbor took it???) trying to wash off the excess. Pants, Waterproof washable padding, his micro bead over $26.00 value travel pillow. I keep putting that special pillow away. and SOMEONE keeps giving it to him. He has several cheap $10.00 ones - and they always give him the expensive one. Now, it's in the trash. I see poop in several places on it.
Dad's sleeping a lot now. He used to be awake around 10-11pm. Now, he's knocked out by 8pm. His hand movements are not as flexible as before. And when he was sitting up, I can feel his strength is lessening. Because I'm using more and more of my body to hold him up while I adjust his shirt/pillows.
I wonder how long sis just let him lay on his poopy mess. How many hours was he in it? The poop on his upper thigh was hard to scrub off. Lastnight, I had to change his pants. When I was changing his pamper, his pants and the bedding was soaking wet. I would fire sis - if I could find a replacement....
How a bed got that wet unless your sister is not attending to him at all is beyond me. My mum uses a pant that will take MY full bladder and yes I did try it just so as I had confidence in them (the things we do!)
It is time to get a draw sheet - not sure what you call them so I feel a google coming on aha disposable underpads you can either use that or that with a rubber underneath it which would wash easily. I bought a full rubber mattress cover which I can clean but now we have a rubber mattress so dont need it. If his pamper gets soiled I dont know how everyone else deals with it but I cut them off so I dont spread the mess (we use the pull up variety not the ones with tabs.
And just for the book he is past just starting dementia hun - go seek some professional advice it may be time to make significant changes to ensure he is well looked after when you are not there, that could be domiciliary care or a care home but something has to change. One thing is for sure if you keep doing what you are doing you will keep getting what you are getting....time for a step change
We've been using lifters since mom was bedridden over 13 years. It's Automatic for me to include it. The govt caregivers used to Not put it on. I demanded that dad and oldest sis Tell Them that they must use it. Now, it's automatic for them to include it.
I am back to tying his pants tightly. But I hate to do this because I don't like it when I sleep with my pants tight. So, I'm hoping this will help a little in preventing him from digging inside his pants.
Dad is getting weaker, clumsier. I've noticed that his hand shakes when he tries to reach for his cups of drink on the end table near his bed. He must have spilled one of those drinks on him. I did get one of those sippy cups but the flow is too slow for him. But, I agree that the pamper is the wrong size for him. Because it tends to overflow on the sides. The thing is - if I buy a larger size, it's too big for him. Poop will definitely flow out. I bought one of those pull ups. Do you know how difficult to take those off without pulling it down the legs and spreading the poop along the legs too? Cut the sides? Oh, yeah, have you tried it and Not have the poop fly? It's sure a mess when you're a bedridden person.
You think he's past starting dementia? I know he's getting forgetful, and not remembering that he just ate, etc... Gosh I'm tired.
I refuse to give up my job and stay home to take care of him. Period.
His butt was red. Rashes. He's been soaking for a while on that mess....
You are very overwhelmed and must feel tyis is an impossible situation. And it sure sounds like it. Think about other optins for Dad's care. Your sister is simply tending to him out of duty. The $320.00 a month she is paid just doesn't even compare to what a caregiver for dad would be paid. Even if you found someone at $10.00 an hour which is very low that is still more than $3,000.00 a month based on an eight hour day. This is part of what caused my family to fall apart. They felt that I did nothing to deserve any payment since as they view it I am sponging off of Mom and L. Even Medicaid has regupations about the inclusion of room and board for live-in caregivers.
Meanwhile you can get anal plugs now that will block the anus for 12 hours and they may or might not be something suitable. there are heaps of new products being tested at the moment and I think somewhere in Cleveland Ohio is doing the most research into this area so do keep researchingit and tell your doctor about the problems so he can help - if he doesnt know about something that you DO know about tell him - Im always doing that - bitch from hell here!
As for what is effectively nappy rash.... grrr to your sister on this one
When you wash the area try about 1oz of white vinegar to a gallon fo water ratio for the final rinse - bacteria dont like the acid, use a barrier cream once it is clean and dry (I use the hair dryer on cool to dry Mum so I dont have to pat or rub the area ) to prevent urin/faeces getting in. Don't use talc or anything like that it will just be food to fungal bacteria. I know you probably know all this already but somewhere there will be people who dont xxxx
Thanks for the tip about the vinegar/water last rinse. I've never heard of doing this. But it sure doesn't hurt to try. My greatest fear is bedsores. Prevention is the key. Thanks.
Glad - thanks. I know, I know..... Going back to drinking my soda.
As far as the depends are concerned you could put him in gold plated ones and his hands would still fing their way in and come out with a hand full and spread it everywhere. he is a big man and Book is a tiny woman. One book walks in the door from maybe a 12 hour day oldest sister simply goes to her room and shuts the door. She can be heard talking to the spirits who she is very intune with. unfortumately they don't tell her to come out and help her sister. It is not a situation we as western womwn would tolerate but it is what it is.
Jude this is not meant as an admonishment to you but to let you and others know that although Book lives in a semi westernised world she is still affected by the traditional customs. Most of us would not tolerate her life and she wishes she did not have to. By the way I am English but have lived in the States for 35 years
Gloves on
cut the sides of the diaper either by tearing or using scissors or relase tapes
roll person away from you and hold them there with one hand
meanwhile get a thin plastic sheet from your trolley to go up tight to the individual.
Erm and make a cup of tea at the same time I asked....erm how?
She said if you hold the person away from you with your forearm then you have two hands free....taking her word for this but it did sound feasible.
once the sheet is in place you have less to worry about (easy for her to say!) while holding the person in that position pull the diaper away slowly
fold up and dispose of the diaper in the bin (ah I am starting to see the need for this trolley now)
Wipe away the worst of the the faecal matter with moist wipes NOT toilet tissue as it can be too harsh
using a bowl of warm water and disposable flannels wash away the remaining faecal matter you will need several - at this point there will only be faecal matter on the flannels the wipes and the disposable plastic sheet.
check to ensure that the groin area is completely clean (thats the bit I gross out over) and also check there are no sores in that area
Fold the disposable flannels and wipes and your dirty gloves into the plastic sheet and dispose of them and place a fresh plastic sheet and a dry towel where the sheet was
Fresh gloves ON
Then wash the area thoroughly
Then rinse with a very very dilute water and vinegar rinse like I said 1 oz to 1 gallon
Then air dry she says this is the best way or use a hairdrier but try to avoid towels or rubbing in any form but the skin MUST be dry
Then apply barrier cream as per instructions
Then put new diaper on
She agrees and she has worked with dementia for many many years that the all in ones are best for what she calls faecal interferers (ie putting your hands in it)
So so up poppers on clean vest/bodystocking thingy and voila done
All you have to do is clean up, bleach/disinfect/sterilise bowl and put your 2nd set of gloves in the bin and empty said bin to prevent cross infection.
One final point she also said if diaper rash does not clear in three days call in the professionals
I hope that helps Book - but she says it is strenuous for one person and much easier if two of you do it but I know that isnt always possible. She also says that calm music and you talking softly to him the whole time you are doing this will help to stop the wriggling
Like you said JudeA. .. What you post, others can benefit from it. At first, I was frowning a bit when you first posted to me about the lifters, etc.. Then I remembered that you're new here. AND, most people - even on this island - don't know much about 'lifters'. We learned about the lifters from the nurse who helped us with mom when she became bedridden. She came over when mom came home. She showed us how to change mom's pampers, to clean her, to get waterproof mattress covers - to go over the original waterproof bed, etc...
And it's a good thing that Dad and I are brain smart or inquisitive. What she didn't cover, Dad and I asked all kinds of questions. I also requested to work part-time so that Dad and I can get the hang of taking care of bedridden mom. So I was home for months to watch the govt caregivers spongebath mom. I asked all kinds of questions.. learned that it's best to use unscented body wash, bedsores can go deep until you see the bone, etc... Learned that when the govt caregivers don't rinse mom's body well, and her body is still soapy from the body wash, mom breaks out with serious rashes, etc.. Learned to clean her stomach tube and the bloody hole (tube moves up/down when mom coughs, hence bleeding hole). Then she got the trache. Took me one year before I finally got the nerve to clean her trache. Had to. My nephew stopped doing it. And I was forced to do it since no one else stepped up to do it.
Mallory, you made me laugh! I was just like that - when it came to changing babies' pampers. I still cannot believe that I now change adult pampers. I still think it's Karma. I gave my siblings a very hard time about not changing their kids pampers before dropping them off for me to baby sit. I absolutely refused to change their kids' pampers. And look at me... I'm now changing adult pampers..karma sucks...