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Hang in there, when my husband had luekemia, I was his primary care giver. he must have went to the bathroom a dozen times a night before he went down hill and could no longer get out of bed safely.I was dealing with the dementia as well as his luekemia metasised to all his vital organs, massive brain tumor, try keeping a 220 lb man in a hospital bed when he doesn't understand & wants out.I hated the feelings of guilt, still have them & he's been gone 39 mos.13 days, medicating his was the worst as I wanted him to understand everything he could, not take away anything, memories of us, our children, grandchildren,but it came to the point when he was in pain or agitated, I had no choice.I didn't take care of myself & when he died, I crashed & burned & ended up in the hospital for 30 days shrortly ther after, from weight loss, no sleep, ect... Find time to take care of yourself, so you don't crash.Good luck and cherish every moment you have with your mom. Charlotte
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I just remembered, I also at one time during my Moms traveling at night, put up a huge poster that said " is the middle of the night, go back to bed" Haha, I have a picture of it hanging in her room and it worked sometimes.
luvmom
PS Jasmine rice, where???
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LOL luvmom........you must have a great sense of humor. My Mom does too, and would probably laugh and wake me up to make sure I knew that the sign was there and then want to go pee!! Jasmine rice???was this for me or someone else??
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Gotta laugh, keeps us sane ! haha My Mom is in late stages now and we can still get her to dance in her recliner /wheelchair and get her to laugh on most nights.
Ya someone wrote in how to make warm socks with jasmine rice, never heard of it.
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It's good that you can keep your Mom happy and laughing really does help. That's one of the things that even helps on the sleepless nights. Oh yes, the nighttime bed warmers. I haven't tried that yet, but I do have a lavendar/vanilla rice sack that one of my friends gave me that I'm going to look for and heat it up in the microwave. I'll let you know how that works.
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Oh, and most nights I take Mom's pj's out of the drier and she loves that they are warm when she puts them on........sometimes it's the little things!
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Ha! Costco has the Jasmine rice but it is in bulk--which makes about 36 nightime warmers and coolers. They make great gifts! I add a few tea bags & some Dove chocolates & a tea candle and put it all in a little bag for presents. I sell the at Co-ops as a side job. You might be able to buy a smaller bag of the rice at Safeway--be sure it is long-grain though! :) This is a great gift for the care giver as well.
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I go to Costco all the time.....I've never seen it, but will look for it now. I wish you were my friend! (then I would already have one or two) :) Thanks for the wonderful and thoughtful idea!!
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Most grocery stores sell it, in smaller quantities ...
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Thanks for the rice info, I will look!!
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I cared for my Mom for a year at my home diagnosed with earlier stages of cognitive impairment dementia, at that time. Meds are sometimes a treatment and factor for behavioral issues. This may cause some issues too.
Anyway My Mom was obsessed and still is (now at NH) about trips to the bathroom and washing her hands. At my home she never/ever had one accident. She slept at my sisters house one night, and she had an accident on her couch. Of course my sister used this as an excuse to never have Mom stay at her home again(she may have even made that up,entirely different issue, still venting about that BS throwing that in there helps me... AHHH!!!). Mom simply didn't know where the bathroom was in a strange, non-routine environment. This taught me something about Mom's peeing and hand washing .... at least she knows where the bathroom IS and knows how to use the toilet, and her hands are always clean, this is better than her going PP anywhere else. It was actually a relief, now that I think about it... that I never had to do "THAT" thinking for her, it was built in routine. Almost everything else she did without my assistance, either became more work for me in the end or simply undoable altogether and frustating for her.
Let me ask you this... What is the first thing you do upon wakeing? What is the thing you do after that? My Mom never forgets to wash hands after going to the bathroom and will never eat before she washes her hands, STILL!!!! Won't go to sleep without washing her face or brushing her teeth, and than going to peepee than washing hands again!!!! She has been doing these things since she was able to and so far at least 70 years of this, it's all just habit.
Imagine yourself waking up for the first time of the day and someone telling you that you don't need to go PP because you just went. When your Mom goes back to bed and goes to sleep and awakes an hour later she probably has no idea she did that all an hour before.
The info your Mom is processing at her stage of dementia is kind of like safe mode on a PC...enough basic info to function but only using the original loaded info stored or embeded during basic programing, just enough to keep her functioning, but without being capable of saving or retaining new info and unless you properly reprogram and reset to recognize such changes as the new mode the original safe mode is the default mode.
As you posted in your question you have ruled out mostly everything else as a cause and as long as she's safe and out of harm to herself or others your being a good caregiver.
You may be able to reprogram her (so to say).
For example:
PP time is every night before bed say 9:00PM
then wake her to PP at 2:00AM
and then at 6:00AM
If you can somehow get her to understand that these are the bathroom times available to her she may conform and even wait for those times after a while.
I learned this from a friend who cared for her Mom. She had to switch from blood sugar meds to the diabetes pen. At first her Mom didn't know what she was doing to her with the diabetes pen (shot in the arm) . My Friend had to go thru the explaination to Mom for a while on repeated but needed daily routine. She'd sit her Mom in "MOM'S CHAIR" (same spot same time every morning) do her sugar test, give her the shot and then, give her a yogurt. After this repeated process became a routine and if her Mom saw the yogurt but didn't get the shot yet she'd tell her I can't have the yogurt until I get the pen and lift up her sleeve!!!! It became over time, abnormal to not do that routine, and believe me after a while she was more focused on the new routine/program and would not rest if it didn't happen exactly like her new routine now is the only program that makes her comfy or easily accepted and stress free, because it's familiar.
Anyone dealing with anxiety or confusion or stress, can lower these emotions if a routine is comfortable and safe. (Change should be minimized for comfort.)
LOL I do this in a small way... I food shop in a very highly populated area in a mall with a crazy busy parking lot. I go different times or days but I always park in the same row and area. I do this, so I don't lose my car. I left my car in a different area once and was at X-mas time crazier time than ever...It took me about 1/2 hour looking for it, I could not remember where, between rushing around and too much on my mind all the holiday stress ,,,,,equaled loss of my memory a total blank. If you have a three day weekend SAT.,SUN.,and MON., aren't you disorientated about the days for a while? Can you relate to this kind of thought process now?
What I try to do is understand and look at things from my Mom's eye's and head.
It kind of helps if you think of how you would like to be treated in any given situatation. I am not knocking you by any means. I had horrible idea's of ...
"Well if Mom's legs were broken she'd be easier to care for." OMG!!!!!!!!!!!!!!!!!!!!!!!I never thought of actually doing that, I could never harm her, but, the thought of me just having those thoughts makes me realize and understand what caregivers go through mentally. My heart goes out to all of you here!!!!
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Hi Icecream, thanks so much for your message. I'm definitely learning from all of you. The 'routines' that you mention are sooooooo true. Mom does the same thing....she know that she takes a pill and a half a day and if there is one more pill or one less (sometimes the blood thinner is skipped), she always asks about it. I also understand the blessing of being able to go to the bathroom and having great hand washing rountines and being able to get out of bed..... we talk about that at night too when we get up......sure wouldn't want to have it any other way. :) I'm trying very hard to see the world through her eyes and keep things comfortable and familiar. Hugs to you and your Mom!!
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Where are the OVERNIGHT DIAPERS???? They hold a loty of water and do not need to be changed but every 12 hours. What' s with all the pills?
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Hi there,
Those may work in the future, however, since Mom was in the rehab hospital, she developed pressure sores on her bum, which would get worse using diapers, even the overnight kind. I agree with you though, pills are not the answer either, at least not yet. I've been trying some of the other ideas first, like using a nighttime routine that includes a hot jasmine rice comfy, reading, talking about our day and I love the idea that just came across about setting up night times 'times' to pee. Sometimes pills may be the answer, sometimes not. I'm trying to keep an open mind to all ideas a this point. Thanks!!
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Good for you KJ! You kep trying every non-drug approach you can think of, and maybe something will work. Also keep an open mind about possibly using medicines, either to supress the frequent urge to pee and/or to encourage sound sleeping. Your mother has some dementia. That means there is some pathology in her brain. The obvious result is short term memory loss, but you can't rule out the possibility that the pathology is causing other impairments. The brain controls all functions, after all. In that case, it may not be possible to overcome the problem with the usual tactics. Drugs might be worth trying.

Good luck to you!
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KJ It is so nice to get a returned post of appreciation. It helps me too!!! Just to communicate with others that truly "get" the whole "dementia bubble". I really am glad I can help others and while shareing my experiences, I feel what Mom is going through is not a just a lost cause, but a gain because alot more comes from shareing. We all Live and Learn but in our roles as child- caregivers it's a huge mental strain to both parent and child to understand and deal with the new "reality" noone asks for this. So don't beat yourself up if your doing your best. Sometimes an answer or a solution is put in your path, If good is in your heart. I don't know how Karma happens it just does.
Karma at work.....I need to take my cats (spoiled to the max my boys are) to the vet and I am trying to cut corners, just to survive. So I called to see how much the bill will be for needed shots and routine check up. Well naturally, much more than I wanted to hear. The vet office explained they need rabies shots, it's a law even if they are indoor cats. ChaaaChingX2 $$$$ so I told the vets office, I'll call back can't do it right now $$ is tight. I asked about free shots they used to do that there, no more I was told.... budget cuts. Then a few days later I was home from work very sick. I get a call from Mom's NH saying she was found on the floor in her room sleeping. This never happened b4, she's physically pretty OK. She rolled out of bed in her sleep. As sick as I felt I went to NH to check up on Mom. She was hurt more emotionally than physically. Mom said "I can take care of myself leave me alone" I tell her Good Attitude...she's going to outlive all of us out of stubborness!!!! So in fear of getting her sick I left. Since I was already out, I decided to go to the library to get a book while I was in bed. (I never do that never have the time) I see on the door a flyer for free rabies shots in my town one day only next week. See how Karma works... if Mom didn't have her Mini accident and I wasn't home at the time the NH called, I would have never left the house sick to see her or gone to the library and I would have missed the free shots flyer that was posted in the window. This kind of thing happens to me often when ever I do something for Love of Mom. As if, for every dramatic scenerio, I automatically deal with it without a second thought and I put Mom's needs before mine, an issue in my life is resolved or available for my convinience. I don't know, maybe it's just the way I look at life in general.
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Hi Icecream, so nice to hear back from you. I do feel like I'm doing my best but not sure it's good enough, or that I can keep it together for as long as Mom needs me too. Glad your Mom was ok after the fall out of bed and it's so nice that you'll be able to get your kitty's their shots for free. Yippee for you!! Hope you feel better soon and I believe in that kind of Karma stuff too!
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Thanks to you too Jeanne! I really appreciate the support and encouragement. It's hard to know if what I'm doing is right, but I guess it will all work out. I'm really trying to stay positive and reading on this site has helped tremendously already!
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My mom was and still does get up many times a night to pee. No, she has not broken her hip yet but I understand as we get older and if the doctor has ruined our lives and kidneys w/ too many drugs, the urge to pee becomes chronic. We have a potty stand that we place next to her bed so that she can get up, take one step and sit. She is so used to it that she can manage on her own in the dark w/ very little light. Of course she wears a long pants w/ elastic and no underwear so that she can easily slip her pants down and slip it back up after the potty. As far as getting her back to sleep we rely on vitamin supplements. We give her a magnesium citrate capsule each night at dinner because it relaxes her so that she can sleep. She is also on a minimum of drugs because drugs aside from its nasty side effects do cause insomnia. Remember now, drugs do not work like vitamins. The body does not need them in order to function normally but your body does need vitamins. I made it a point to eliminate as much of her drugs as possible so that she did not have to deal w/ the side effects that always come w/ taking drugs. Do not deprive your parent of water because as we get older we need water to keep us hydrated so that our kidneys don't malfunction. The one draw back w/ the potty is that it can't be flushed and someone is going to have to empty and rinse it in the morning. One more thing, we always have my mom do lab work which includes doing a urine sample to see that she doesn't have a kidney or bladder infection. Hope this helps.
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Hello Kona, and thanks so much for your message. Even though Mom takes the minimum on meds...just for bl pressure and bl thinner, we found out yesterday that she does have a kidney problem. Not sure exactly what's happening yet, but we will be going to another dr. to determine the extent very soon. I will keep everyone here posted and do so appreicate all of your support. Some of the things that you all have suggested we are doing just because they are such nice things to do....reading together, warm jasmine rice packs, etc. They have made us more comfortable and they're fun too. Hugs, KJ
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Hi KJ, my mom was diagnosed with CKD (chronic kidney disease) soon after her stroke in 2006. I blame the CKD on the drugs she was taking at that time. Her GFR was below normal at 42 (normal is greater than 59) and stayed that way until I began removing the drugs that she didn't need and replacing them with supplements. However, even though there was some improvement, the GFR still remained in the 40s. Just yesterday, we saw her new lab results and were shocked to find that her GFR had gone up to 57. Wow! Three more points and she will no longer have CKD. We think that the supplements that she was taking over the last month, which was specific for kidneys along with a strict low protein diet really helped. Hope this helps.
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Thanks Kona for your message. We are going to get all of the tests done next week. I have a question for you....when you say 'low protein', is that ALL protein, or low 'red meat' protein? The reason I'm asking is because just recently, Mom's been drinking the ensure high protein drinks since the broken hip. (at least when she's not eating that well) Hope you are doing well!
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Hit the enter button too soon......that is wonderful about your Mom! I'm so happy for her and glad that there are fixes out there!! Be safe and God Bless!!
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Hi KJ,
my brother who is my mom's daily caregiver at this time said that he has been giving my mom very little protein as far as meat, fish and chicken go. He was trying to give her more veggies.But according to what I am reading, I think any source of protein would be a concern for the kidneys including those in drinks. http://www.doctoryourself.com/kidney2.html
I was told by the naturalpathic doctor once that a low protein diet would help kidneys function better. Also our new doctor had recommended a new supplement specific for the kidneys called, Premiere Kidney Complex. It sells over the net for $28.95 for a bottle of 60 capsules. She was taking 2 capsules a day. Besides CKD, my mom has HBP, and her labs show high cholesterol but I am not too concerned w/ her cholesterol since it is not the primary cause of heart disease and because her C-reactive protein (an inflammation marker) and Homocysteine tests indicate that she is in the normal range. My mom takes over a dozen supplements each day. We are now working on lowering her HBP. Hope this helps. Take care.
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Konacaregiver,
I believe they remove links here pretty quickly, but I checked out your reference to doctor yourself anyway.
It's interesting that they recommend a blended salad because I was asked to make some suggestions that have worked for my 105 yo grandmother's health and mineral-wise I was saying blended / pureed vegetable soups, raw veg drinks, and veg broth. However, I KNEW that blended salads were also desirable. I just never got around to giving them a fair chance. Even for myself.

One thing I would like to add, however, regarding their kidney nutrition advice, and that is that in looking at the references provided, the dates are from the 80's. And the article copyright is 2005. The problem there is that now we have more and more awareness of the importance of EFA's in the diet. At the same time, many smart people are fingering the ever-present RBD veg oils (refined, bleached deodorized) as contributing to long-term degenearative disease. Largely because the high temperatures involved in their processing creates twisted and bizarre fat molecules (not JUST the trans fats) for which our body has not been prepared. These molecules get incorporated into our cell membranes and really screw up the works by altering the "rules" for which substances are allowed to pass thru the cell membranes. Big problem.

So because that website does not seem to take the EFA's and bad oils into account (in suggestions 1 thru 11), if you are serious about this, I would google { kidneys EFA } and see what drags in for a more complete perspective.
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Callmeishmael, Thanks! I didn't check the dates, but Dr. Saul owns the Doctor Youself site and I use his site from time to time for a quick reference but mainly I was focusing on protein restriction because a naturalpathic doctor here in Kona had also suggested it to me for my mom. But you are so right about the bad vegetable fats in our foods that can not only harm the kidneys but are bad for our hearts too. Fortunately my mom doesn't eat that stuff. Will look into EFAs. Thanks.
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Thanks for your message back Kona. Once again, I thank you all for your support and thoughts.
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There are certain foods that help you sleep, I saw this on Dr. Oz. you gotta love that man. I can only remember MILK is one Oh and wine. Maybe check out his web site and get more info on that.
My Mom (in NH) uses the bathroom alot as well, (as I may have mentioned in an earlier posts). She didn't like the diaper issue at all, used as precautionary purposes, and when she'd go to BR she'd have to remove it so she could go. I think this confused her because at this stage she's aware of what is normal or comfortable. So then they tried pull ups, they serve the purpose and she can go the regular old fashioned way. Funny thing....she told me "these underwear are wierd but it's better than none, this is all I have now, someone stole my regular undies". At least she didn't say that I stole them, this time.
Which reminds me of a Major reason of .....why it is better for both of us that she's in a NH. She is better behaved for the staff as far as making changes in routine for her needs, even her eating habits are better. The NH says this is the way it is, to her, and she listens, no problem, when I was doing that she hated me. I am aware of all the changes and if I see a problem I address it but she just thinks she's independant and we both are less stressed.
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Wuvsicecream, I appreciate your response. So true with my mother as well. She is also better behaved towards the professional staff at her NH. She had issues when I tried to give her meds at her home, or tried to encourage her to use her walker or would offer to help her with incontinence issues. Now the staff can care for her physical needs, and I have the opportunity to take mom on outings, attend church with her at the NH, visit, go on walks, etc. Much less stress for all concerned. I'm so glad we made this decision. My mother would be lonely at her home; wouldn't be able to drive. At the NH she wheels about on her wheelchair throughout the facility, and talks to staff and other residents. If a family can find a good NH, and still be active in their families' lives, they can count their blessings!
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Have any of you used a 'geriatric specialist' for a doctor for you Moms/loved ones? I'm considering going to one to see if there are things that they may know or test for that we haven't thought about yet. My Mom has started hallucinating and didin't sleep for 4 days. (I'm not exaggerating) She talked constantly and when we finally took her to the Dr., they gave her a mild sedative. Also ordered the blood test that indicated that she has a reduced kidney function, but not at the level that would cause the hallucinations, etc. The sedative did allow her to sleep and she is doing better, but I think we need someone that deals with this sort of thing all of the time? Would be interested in other's thoughts/experiences. Thanks!
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