new here and need to talk

bloodhoundmommaDecember 18, 2009

We took my grandmother in after my grandfather passed away in March. She is a diabetic, double amputee with dementia. She is bedridden most of the time other than to get up and eat, but then some days she is like her old self. Some days she can talk just as plain as day and knows everything thats going on around her, and some days she can hardly talk and is incontinent and can't hold her bowels. My children and husband are really struggling with this because it requires my 24 hour attention. I think the thing that bothers me most is the smell of urine and feces, I can't get the smell out of bed linens and the house. Any suggestions, I take the poopy diapers out right away but it stinks up the entire house, I have tried all kinds of sprays, oust, febreze, lysol, etc. anyone have any suggestions to get the smell out of linens and the house?

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I use lots of clorox water to clean things and I have tried burning candles which helped a lot. Of course, you have the worry about her messing with the candles. It sounds like you have your hands full and I am sure you will get lots of helpful information here.


    Bookmark   December 18, 2009 at 1:07PM
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For washables, you'll need an enzyme-active product and you'll need to let it soak a bit to give the little poop-munchers time to work. For carpets they have spray versions or you can make your own.

If you can't find at grocery or hardware store, go to pet shop or veterinarian. They deal in mammal waste, too.

    Bookmark   December 19, 2009 at 11:05AM
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Connie Kru

Home Health Care Stores will also carry a product.

    Bookmark   December 19, 2009 at 9:11PM
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I have been using thick bath towels on husbands side of bed and everyday have to change them as they are wet. I wash them in Gain (love the smell of that soap) and then put fabric softener in the rinse water. So far it seems to take any smell out. That eliminates changing the sheets everyday....and to think I used to HAte those heavy thick bath towels!!

    Bookmark   December 20, 2009 at 6:46PM
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Bloodhoundmomma....forgot to are an angel for sure!!!

    Bookmark   December 20, 2009 at 7:11PM
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thanks everybody for the suggestions. I don't know about an angel, some days I feel like a failure when I get aggravated by something she does, but then remember she took care of me for so long. I did find some febreze laundry odor eliminator today at walmart and it works really well.

    Bookmark   December 20, 2009 at 10:36PM
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we heard from her pcp today and her potassium count is too high and one of her blood cell counts is too high and they are sending her to a hematologist, we have to go for more bloodwork tomorrow, my kids are so stressed because all they want to worry about right now is christmas, and we are all hoping nothing leads to hospital time. She has not had a bowel movement in 10 days and i'm giving her laxatives, waiting on the big mess to happen, afraid that it will happen christmas day when all the family is here, i am so worn out i don't know what to do. My husband and I fight all the time, he drinks thinking that is going to take him away from all this, but it just makes things worse. I feel like I am falling slowly into a deep hole and can't climb out. We can't afford a home to put her in and she can't qualify for medicaid so we don't have much choice and we don't have much help from other family members. I am utterly tired and it shows in my face and in my tone. Just needed to vent. Thanks for all the wonderful advice.

    Bookmark   December 22, 2009 at 10:39PM
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Bloodhoundmomma, an elderly person going without a bowel movement for 10 days is a really serious problem. Did you mention it to her doctor? Once the bowels are impacted, laxatives alone may not make a difference. She might need to go to the ER to have the bowels manually extracted and be given super strong laxatives.

I know this from personal experience with my mother. She went about two weeks without a bowel movement and did not let anyone know what was going on (she was living in an assisted living facility). She was daily taking Metamucil capsules, Milk of Magnesia, and stool softeners at the time. None of it made any difference.

When she finally mentioned something to me about her "old troubles," I knew exactly what was going on. I made an appointment with her doctor immediately. But things had gotten so impacted that she was sent to the hospital. She was there for an entire week. The doctor performed at least two manual extractions and she was giving prescription laxatives. It took several days before she was cleaned out. By that time, she was in a terribly weakened condition. She barely had the strength to walk. So she spent another week in a convalescent hospital.

I urge you to call your local agency on aging and see what programs your grandmother qualifies for. You really need help. This situation is draining you and your family. I don't understand the qualifications for medicaid. Does your grandmother have a lot of assets? Could she qualify for a Medicare funded nursing home? She might actually get better care in a skilled nursing home. They have the trained personnel that monitor medications, diet, and elimination carefully. Also, they take care of personal hygiene and laundry. Granted not all homes are good, but you could find one that works for her needs. Placing a loved one in a proper facility really is caring for them. It is not abandoning them at all. Just the opposite. It is making sure they get proper care.

Please keep in touch. We're all here to help, offer advice and, most importantly, encouragement.

    Bookmark   December 23, 2009 at 12:21AM
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"She has not had a bowel movement in 10 days....."

This is serious. Suggest intervention at once.

    Bookmark   December 23, 2009 at 10:12AM
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She did have quite a few movements today, she is doing good now, just tired, i've made sure to keep her hydrated. She does have a lot of assets, and we checked into a skilled nursing home and it's way more than we could afford, we have home health coming in but they only come twice a week, my father and her son live right next door to us but my father is a shiftworker and doesn't see her much, and my uncle doesn't see her hardly at all, it's all been put on us. We struggle everyday. Now she is having bloodwork issues, we have to go to a hematologist after christmas, wish us luck, thanks everyone for all the help.

    Bookmark   December 23, 2009 at 10:22PM
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Bloodhoundmomma, I took care of my mom for 14 yrs and now taking care of my dad. Having done this for awhile, let me offer a few suggestions. There are incontinence pads, approx 4'x4' that you can purchase for a home medical supply store. They come in a cloth verson, smaller ones are avail in disposable paper/plastic. I would suggest the cloth ones. Buy several and use 1 or 2 on the bed. If you use 2, make sure they overlap well in the middle. You can change these as needed instead of changing the bottom sheet, mattress cover or the entire bed. It will make things a little easier. Make sure you have a mattress pad that can handle incontinence issues. If you are using diapers, depends, etc, make sure they are changed frequently to avoid the occurrence of urinary tract infections which occurs frequently with women. Glad to see the bowel movement issue is resolved. You might ask her MD about using Colace AND Sennekot or their generic equivalents. If he is ok with that, 1 tablet of each 2x a day might be helpful. If she develops diarrhea or very soft stool, you might want to cut back to 1x a day. I would stay away from metamucil unless she drinks alot of flluid. Metamucil or it generic equivalent can cause more problems and make her constipation problem worse, if her fluid intake is poor. You mentioned she is a diabetic. Is she taking pills to control her blood glucose levels? Diabetes is a life threatening disease which I assume caused the loss of her legs. She most likely has experienced significant vascular damage and most likely her organs ie kidneys, etc are affected. You need to know you are doing a terrific job despite the difficulty and there is onlly so much anyone can do. Take a step back and know you are doing your very best and she is very lucky to have you. Do try to get someone to come in so you can get some quiet time for yourself. It is so very important. Good Luck.

    Bookmark   December 25, 2009 at 8:25PM
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Just a word about Medicaid.....You said she has too many assets to qualify. Well, it's time to start using those assets for her care. It's called "spending down" until she does qualify. If this were not done, the taxpayers would be paying for her care while her assets were kept intact so her family could inherit at her death.

Her time is limited. The question is whether or not you can handle it until the end without damage to you and your family. As unpleasant as it may be, you need to put those that are closer and more important to you, first.

If she should go to the hospital, try to have her discharged to a nursing home instead of to your home. If she goes directly to the NH to "get well", Medicare will pay for a certain number of days (used to be 120, don't know what it is now) It would give you a rest for a while.

    Bookmark   December 30, 2009 at 6:53PM
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BloodHoundMomma, I truly feel your frustration and pain.... I wish you the patients and strength to handle everything that comes your way.

As to the smells.... There's a product called No-Rinse Perineal Wash, it's used, primarily for cleaning up colostomy patients, so it can be used directly on the skin but a quick mist on the bedding or diapers will almost instantly dispel the smells... The odor of the product is a bit much at first but it doesn't trigger the gag reflexes like the smell of poop does...

I hate to say this, for fear it may be taken the wrong way, but perhaps a hospital stay may be a good idea.. It would give YOU some much needed rest, at least for a few days, and as AgnesPuffin mentioned Medicare would pick up the tab if the doctor recommends a short stay in a nursing home... Which in turn would give you enough time to 're-charge' YOUR batteries...


    Bookmark   December 31, 2009 at 1:41AM
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Connie Kru

Also a stay in the hospital can trigger the
Oh it isn't so bad at home feeling. My MIL even through her dementia often was better behaved after a stay in the hospital and seemed to realize that I was helping, not just meddling in her private area of her life.
If you have not, then do go and visit in a store that sells products for Care Giving. Yes they are expensive, but I know for me, it was what helped me to continue to give care, when with out the sprays and disinfectants and rubber gloves and shower chairs and bed side commodes and eventually a lift with a sling seat, I could not have done it.
Also, invite your friends in during the part of your day, when you can sit and visit for a half an hour. It will do you a world of good, and most friends are willing to give you that time and attention (you may have to ask, because they do not want to intrude, so ask)

    Bookmark   December 31, 2009 at 1:09PM
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Don't know if this is any help, but i remember when my father in law had an ostomy bag a nurse told him about some kind of tablet that could be broken up and dropped in the ostomy bag, or he could take it by mouth and it helped cut the smell of bowel movements.

    Bookmark   January 5, 2010 at 8:56PM
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Thanks everyone for the suggestions and support, she outright refuses to go the the hematologist. I feel like in a way I should force her to go but I don't want to make her do anything she doesn't want to. She says she is not having any kind of treatments, even when she is not completly with it, she refuses to go. I am gonna try and convince her and hopefully reschedule, but as for now, I only upset her when i talk about it. Anyway, i am pooped but my hubby is doing better, somewhat. My sister has now found out she is pregnant and guess what, apparently it's convenient to everyone that i am home so i should keep the baby, I will, just because I know she can't afford a daycare, maybe one day I will have some time to go and do for myself. Today is my 14th wedding anniversary, and we couldn't even leave the house to go out to eat, oh well, I made the best of it and put everyone to bed early and made my hubby and I a nice candlight dinner. I know in time things will get better, they have too!! Again thanks everyone for the support, just getting this out helps so much!!

    Bookmark   January 13, 2010 at 8:53PM
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Sister, sorry, I will not baby sit. Not afording a baby sitter is NOT YOUR PROBLEM. You cannot take care of a baby and a senior citizen. You will end up dead'!!!! Grandma, gradually work it around she will go to a home.
Your family must come first, or you may not have them very long. If your children are into sports, etc how can you support them if you cannot leave grandma.
It called Tough Love.
Schedule a appointment, tell her she will go--or>>>>You need to be strong.

    Bookmark   January 13, 2010 at 10:50PM
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So this morning has been awful, I am now having back trouble and have to go see a neurosurgeon, so I am trying not to pick her up as much. My husband went in this morning to get her up to go to the bathroom and she had already went in her diaper, so that just aggravated us changing poopie diapers at 3 in the morning, then at 5 she calls us again to go to the bathroom and the argument starts, my husband gets angry and tells her that she either needs to call us every time she needs to go or quit calling us just randomly. He has CMT, so he can't lift well either. When he went to pick her up, she started hollering don't hurt me, and said she was going to tell "her boys that she wanted to live somewhere else", her boys don't even hardly come visit, she says i'll pay to live somewhere else, what she doesn't get is that she can't afford to pay someone else, i do it for little of nothing, i surely don't get paid enough for what i am going through. I have begun to resent her and this morning was sobbing until i couldn't catch my breath, my husband gave me a xanax which helped calm me down enough to be able to get a little much needed sleep. I am at my wits end, and she thinks her boys are going to take care of her, she is sadly mistaken, my dad is a shiftworker who has had multiple back surgeries and can not lift her, my uncle has not seen her since before really frustrates me because I quit a great job to stay home and do this and no one appreciates it, now with the back issues (i've already had one back surgery) I am not sure what to do...if she does go to a home, the money i make taking care of her will be gone and i'm sure we will lose our house and until I can find another job we will be in a mess, the cheapest nh we found is around 6000 a month and she doesn't make half that, i don't know what to do i feel like a failure....

    Bookmark   January 20, 2010 at 11:35AM
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You sound like you're at the end of your rope. Are you receiving payment for services rendered from her or from the state? It sounds like you need to aggressively research other options for her care. Contact your area's agency on aging, consult with an elder care lawyer, call AARP services, talk to anyone and everyone you can think of. There are ways to finance skilled nursing care and you should start gathering information.

At this point, keeping her in your care just to receive some sort of payment may not be in your best interest. You may need to start thinking about job opportunities once she's out of your home (through death or through moving to a nursing home). There's no telling how long she may live, so hanging on until she dies and you receive some sort of inheritance isn't really a sound financial plan.

You're not a failure. The task has simply gotten beyond your ability to handle physically and emotionally. It's time for you to be realistic about what you can and cannot do. And don't let money alone be your guiding force.

    Bookmark   January 20, 2010 at 7:22PM
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Me again. The Dr. can put her in the hospital, then transfer to a nursing home. You need to go to either a lawyer and make sure all the legal stuff is done. You do not pay one single cent, sign NO papers, when her money is gone, then medicade will take over. You want to make sure that you or whoever you deceide take over the legal stuff. Notify social security, insurance, medical, hospitals who can get information. If she insists her boys take over--so be it. You cannot go on or you will end up in a home. It is not fair to your family. By the way, did you tell your sister or ?? you will not baby sit. Sad to say, maybe your family should move a further away.
I wish you the best.

    Bookmark   January 20, 2010 at 9:57PM
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Your assumption that you have to pay for her nursing care is not accurate or wise. You are martyring yourself and need to step back from this. Destroying your health, stressing your marriage, and devastating your own retirement will not make the situation better.

If she has not signed any legal documents about Power of Attorney, this should be done ASAP. Your family needs to decide who is going to be responsible, and this is going to take a family conference. The assigned agent will have some legal expenses and can be reimbursed for expenses from her estate as necessary.

You should NEVER put out your own money for an elderly person. You should investigate all county, state and federal programs for the indigent elderly; nothing pays for everything so someone has to act as a 'project manager' to coordinate signing her up. Once you've gotten all the help she is entitled to, then you use up her financial resources FIRST for the extras that nobody will cover. After that, and only after that, does the family start contributing personal funds to help out.

mariend and agnespuffin are correct that a doctor can sign her into the hospital, then if recommended she would go straight into a nursing home. That is the only circumstance under which Medicare (the Federal program) will pay for 2 months, maximum, of nursing home care. After that, her Social Security and personal financial assets are tapped. Once the personal assets are exhausted (down to $2,000 maximum allowed), she would go on Medicaid, which is a joint program between the states and the Fed, each of which pays 50-50%.

Once in the licensed facility, the family will find that the 'extras' that keep her comfortable will need to be paid for out of their own funds - that's why you should never, ever waste personal retirement or savings funds, because you'll need some money for the small things that will supplement what the government programs pay for.

    Bookmark   January 21, 2010 at 7:05PM
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Just to give you an example of how it works..

My mother, her husband, and my mother in law were all in the nursing home at the same time. Mother had a good federal employee pension plan which was almost enough to pay the entire cost. Her house and car were both in her name. She had to pay the entire amount. She died before all her assets were used up. Her husband, had nothing. No property, very small SS check and did not even have his name on her checking account. He was eligible for Medicaid coverage. Medicaid paid the difference after his SS check was used.

My mother-in-law also had nothing except a small SS check. ( Plus 7 grown children and a multitude of grandchildren too) Medicaid paid her NH home bill. The SS checks went straight to the NH. Her large family didn't have to pay a dime.

There are many agencies paying for nursing home care. About the only people that have to pay the entire fee are those that have assets and enough income to pay. Some states are getting tight about this and are starting to try to force the families to pay something toward the patient's care if they can.

    Bookmark   January 21, 2010 at 11:13PM
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Bottom line on this advice is to NEVER agree to pay anyone else's expenses. Never sign anything either. They will pressure you to take responsibility. Just say that you cannot afford anything.

The care that a patient gets will not in any way be any different from a patient paying the full bill. Don't let them pressure you.

    Bookmark   January 21, 2010 at 11:58PM
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The incontinent pads work great but if you cannot afford or find them use a large piece of plastic under the sheets to save the mattress. A shower curtain, even garbage bags will do, but be careful because the garbage bags can make it slippery when you try to turn someone.

As far as her getting upset with you, please know that they always take things out on the ones closest to them. They would not talk to a stranger like that or someone who comes to visit. Remember, she is probably frustrated as well.

As far as smell, clean as soon as possible, no fun I know, but has to be done. Oil of evergreen is good I have used it in the kittylitter, do not use too much. They use it in used cars, covers all kinds of smell including musty ones.

Remember, take care of yourself or you will not be able to take care of anyone.


    Bookmark   March 27, 2010 at 12:14AM
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Wonderful product for smells!
Biological Odor Eliminator (unscented)
Catalog # 7018U - Spray / 7008U - Refill
made by:
C.R. Bard, Inc
Covington, GA 30014

Not cheap, but works so well! Hard to find, we had to have a home health store order some for us. I keep it in both bathrooms.
Kathy G in MI

Here is a link that might be useful: Medi-aire

    Bookmark   April 21, 2010 at 11:27AM
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May I suggest an ozone machine. April Aire makes a good one. Our house smells just like after a rain. We've had it 14 years. Does a pretty good job keeping up with my MIL.

    Bookmark   May 15, 2010 at 12:34PM
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I feel so bad for you and hope that you and your family have gotten some help. They deserve to be taken care of, but you should not have to do this all by yourself and 100% in your home...!

    Bookmark   August 31, 2011 at 7:09PM
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