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I just got Mom out of the hospital from a bout with a bad cold which led to pneumonia. She was there for 5 days and wasn't ready to be released, but with insurance, medicare, medicaid and everything else, the doctor turned her loose. He wanted to send her to a chronic care facility, but decided there was no rehab for pneumonia. So I get to be the doctor, nurse and CNA all in one.
Well, the antibotics were so strong she has chronic diahrrea and they withheld
her fluid pills because she was dehydrated, so she started swelling in her face and ankles and he gave her fluid pills to her when he released her and it really wasn't bad except for the diahrrea. Then yesterday, 2 days out of the hospital, she starts peeing everywhere! She absolutely wore me and my husband out, up and down to the bathroom, but by the time we got there, her Depends was full of pee, plus she was peeing on the pot, too! She started "sundowning" about 5 o'clock, another result of being confused while in the hospital, and I got her to bed around 6. So every 15 minutes, round the clock, me and my husband took turns getting her up so she could go pee and it was always too late. I have NO clue how many Depends she went through until I went to bed at 11:00. Then she wanted to know WHY I was going to bed. I changed her and she had slowed down a bit and when I got up at 4:00 a.m. to get my husband off to work, I checked on her and she was laying on top of her bed, with her clothes on and her bed made. She hasn't had clothes on for days! I think I am more confused than her as to what is going on with her. You can't get an answer from the doctor, because he attributes everything to their age and there is really nothing they can do, so he says. Just stick them in a nursing home is what they want you to do. I cannot do that because I do not think she is ready for that and she is my Mom. I have lost all interest in EVERYTHING except my cats who bring me so much comfort and joy, just being there and talking to them. I am behind inf EVERYTHING and have NO desire to do anything. Has anyone ever experienced this before?? Any helpful comments are so appreciated. Thanks!

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Anti-anxiety meds might help, but it also sounds like she might need some pictoral reminders.
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No, she isn't on any anxiety meds. Each time I tuck her in at night, she says "thanks for everything you do for me, cause I don't know what I would do without you". Kind of sounds like she is afraid something is going to happen to me or that I am going to die or something. I used to be able to tell her where I was going and like you, made my time later in case I was late. Then I started using a dry erase board telling her where I was going and when I would be back. She got until she looked at it so much, she would erase it and then forget where I was. Now, she doesn't understand when I tell her where I am going and forgets anyhow. But she still remembers that I am her caregiver and I guess afraid she is going to lose me.
Really, she pays no attention to anything, but where I am and what I am doing and watches my cat non-stop. Thanks for your comment. I so appreciate it!
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Chloe-I don't have time to reread the posts-but is she on an anti-anxiety med? If she is-maybe try a different one? Sounds like she is really worried about where you are all the time! When I go out of the house, I always give my mom a time I will return. I frequently say later than I think in case I am late! It just reassures her that I am coming back...and whoever is with her can say at what time I will return. In the house and at night I reassure her that her monitor is on (next to the couch or her bed) and she can call me whenever she needs me. We sing the song "You just call out my name, and you know wherever I am, I'll come runnin...to see you again..." She loves music! Good luck to you! Mame
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Purplesushi, Thanks for your comment. I have since tried not giving Mom her water
pills when she got up in the late afternoon as an experiment to see how much she would get up and pee, since she would go back to bed about 3 hrs later. Holding her fluid pills made no difference whatsoever. We always listen to see if we can hear her pee, and she hasn't been peeing every time she gets up. Just looking to see where I am! I guess she just lays in bed wondering what I am doing or where I am at and it is every 15 min and definitely no later than 30 min that she gets up. It is no wonder that she sleeps the next day away. She is totally worn out for getting up and down, when she is not able.
Jeannegibbs, thanks for your comment, too. I certainly agree that sometimes a hospital stay does more damage that what is ailing them. This time Mom's dementia kicked in and stayed. She never did recover mentally, but physically she sprang back like the energizer bunny (not as mobile as before she got sick, but unbelievable that she even recovered). I am just at wit's end and ready to pull my hair out because she has to know my every move! If I set in my chair with the computer, she thinks I am sick! Same thing if I take a nap! I think my mental and physical ability to cope is just about exhausted! Like I've said before, my husband is so good to set with Mom and let me get out a little, but I can't enjoy myself because I know she is aggrevating him to death wanting to know where I am or when I am coming back. She is even doing that when I go outside since the weather is getting better. Everyone suggests placement, but I just don't think I can do that yet. Any other ideas? Thanks!
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chloesgrams2012, hospitalization is really hard on persons with dementia (and it doesn't help that most hospitals, even exceptionally good ones, have no clue how to deal with dementia). Each time my husband was hospitalized they got his healing started in the few days he was there, it took a few more weeks at home for him to complete the healing process, and then maybe a couple more months to get over the hospitalization experience. I'm not kidding. The good news for us was that each time my husband did recover to his previous baseline, but it took many weeks.

I quickly learned not to leave a dementia patient in the hospital without a family member present (we took shifts) and to insist on the earliest possible discharge followed by in-home care. Sometimes hospitalization is essential, but you can pretty well count on a need for recovery from the experience itself.
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@Chloesgrams - can I ask you what time is your mom taking her water pills??? My mom only takes one per day, and her doctor told us she needs to take it before 10 a.m. so she pees during the day. If your mom isn't getting up until mid-late afternoon and is taking them then, that will definitely explain why she is getting up all night long to pee. Just a thought....
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Thanks for the helpful comments. My husband just suggested we need a way to find out how much fluid she is getting rid of. A potty chair would be a good idea. The nurse had given me a "hat" as they call it to get a urine sample in and that is a good way to check also. It is no wonder she sleeps the day away, because she is up until midnight and after peeing. We listened last night when she got up and sometimes you would hear water and most of the time none. But, each time she had to check and see where I was or make sure my husband was setting in his chair. This has really gotten bad in the last few days and it is really starting to work on me. Thanks for all of the advice and any more that you have to share will be greatly appreciated!
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chloesgrams2012 - I like the idea about the potty chair. Plus, then you'll know how much her output is. But I would also suggest you check with the doctor about getting her a mild sleeping pill just to get her regulated. My MIL used to do something similar too - stay up way too late then sleep late - over 1/2 the day away. I know they need more sleep than we do, but it's not good for them to get too much sleep and it's really not fair to you to have to work your life around her sleep schedule ALL the time. It's stressful enough, much less if you're extremely tired from lack of sleep. Just a thought.
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I think you are exactly right about Mom getting too much sleep and not being tired at night. I have tried unsuccessfully to get her back on schedule. When I start trying to wake her, she is really groggy and incoherent. I'm trying, but it's just not working real good. Thanks for the potty chair idea. I have seriously thought of the idea, and it would greatly reduce the water bill, LOL! Thanks for the info, it is really appreciated. I will try your suggestions!
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Hi Chloe. I put a commode in mom's bedroom so she could get up and go during the night. I just dump it in the morning. Maybe if you get one it will keep her from bothering you while you are trying to sleep. As for her sleeping, do you wake her - or try to-in the morning? I try and keep mom on a good schedule-so she will sleep at night. Maybe your mom is getting too much sleep during the day so she isn't tired at night. Just some thoughts! Good luck! Mame
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I'm back with more questions! Help! Mom has went from having diarrhea to only going to the bathroom once or twice a week because she doesn't eat hardly anything. So that got fixed! Now, for the newbie, She takes 2 fluid pills daily and from her hospital stay, she has got her days and nights all mixed up. She gets up for the day somewhere between 1 PM and 5 PM. She has a cup of coffee and a pudding and her medicines. She will set in her chair and sleep and maybe be up a total of 2, 3 or 4 hours. During the time she is setting, she may go to the bathroom once. Always in bed by 6 PM. Every 15 min to 30 min, she is up on the pot! This continues on until about midnight when I go to bed, and last night I fell asleep in the chair and it was 2 am.! We always listen to see if we hear her pee, sometimes yes, sometimes no and then she flushes. We have NO clue how many times she flushes the toilet in a 24 hr period. When she comes out of the bathroom, she comes to her bedroom door and waves or just stands and watches us, and then goes back to bed. The other night I went in and asked her,
"Mom do you need anything?" She said, "No, I'm just nosing around, I reckon." So my question is, does she just lay in bed and think she has to pee? Or, might she have a UTI (but, wouldn't she pee during the day also, if she had one?) Or, is it an excuse to get up and see what we are doing? She is the one who chooses to go to bed at 6 in the evening. I am at wits end and ready to pull my hair out!! I just wanted some opinions before I called her doctor with questions. It is impossible to get her to the doctor's office to have her urine checked, so I would have to find a way at home, and that should really be interesting! Please help! Thanks in advance! (My last comment on this was 2/9, and it has since gotten worse)
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Chloe - my MIL is EXTREMELY incontinent. I have her wear a diaper and an TENA overnight pad at the same time. That has been helping quite a bit because the pad seems to hold more urine than the diaper, and the diaper will usually catch the overflow. It doesn't always work, but it helps. And if she makes it to the stool without an overflow to the diaper, then she can just insert another pad - which saves in buying more diapers. Just thought you might want to try and see if it helps your situation too. Good luck!!
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Glad that things are getting better!
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Probiotics!! Even yogurt can help....
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Oh good - glad you got a handle on the diarrhea - when i read your original post it worried me. That infection can get so nasty if it's not brought under control. I would definitely talk to her doctor about adjusting her dose of lasix (or whatever diuretic she is on) - it sounds like it's too high, which is not good for her kidneys.
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Thank you all for your kind words and comments and advice. I truly appreciate it so much! It is so nice to have nice people to discuss issues with, especially these kind that you all have been through. As for Mom improving, I do not see that much improvement except we DID get the diahrrea stopped, but it was me and not the doctor who did it. If got her a big bottle of Diff-Stat tablets that are chewable from the hospital pharmacy and did the yogurt thing and it took care of it. She did have c-diff last winter when she was in the hospital with pneumonia. So we may have "nipped it in the bud" before it got a headstart this time. Now, she hardly ever goes to the bathroom. Her meals consist of pudding, Ensure, coffee and yogurt, occasionally some other drinks like water with flavors in it or hot cocoa or maybe a little soda. She refuses to eat anything other than this. She
now has her days and nights mixed up and yesterday was a 22 hr day in the bed with a lot of confusion. We are still doing the fluid pills because of the CHF, but
absolutely you would think she is full of pee from head to toe as much as she goes! She can get out of her bed and go, because the bathroom and accessible things to hold to are close, but if she is in her chair and I am around, I have to totally lift her up from her chair and the commode. Some days are better than others, but none are too good. My husband is home today, so I think I will try to give her a bath and get the teeth brushed. If I have a problem, then he will be here to help me. He has been so helpful and good through all of this, especially understanding. I want to thank you all for your kindness and help. I will keep you posted and will more than likely have more questions. Thanks so much!
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GET HER BACK TO THE HOSPITAL ASAP - she more than likely has a c-diff infection which can be DEADLY if not treated!
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The previous post about readmission before 30 days for the same condition is correct. These PCP docs are discharging before the patient is ready because they do what the insurance companies tell them to do. Be the advocate. I have stated on this post that the hospital cannot discharge the patient if there is nowhere to go to. I would say these words "My Mother is not safe in my home right now, she is too frail and is a hugh fall risk. I do not want to be back the same day with my Mom because it was too early for discharge." Trust me the docs will not be happy but they will not discharge. What they will do is turn it over to the social worker for possible placement. This buys you a couple of days. The social worker may have quite an attitude because this has been dumped in her lap. So What .... have all the attitude you want but do the best thing for my loved one. These are the facts, I worked in a hospital for many years. It is a numbers game that you do not have to play with them! Be strong.
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So sorry to hear of your problems with Mom. I can only tell you what has happened to me last year. YES the antibotics can cause the diarerha, it can lead to colitis, which becomes a long term problem. Eating a yogurt every day helps replace the lost good bacteria, and if the antibotics caused this then you need to talk to her doctor about not giving her any oral antibotics for a while. As for the constant peeing, if she was swelling up then by giving her diretics especially in higher doses can cause her problem, if her swelling has reduced talk the her doctor about reducing the dose which should help.
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Antibiotics mess up the digestive system by killing off not only the bacteria that were making your mom sick but also the healthy bacteria in the the intestines that are a key factor in normal digestion (affecting the bladder too). Now she needs probiotics to put the healthy bacteria back. In the first years of antibiotics, doctors never gave antibiotics without probiotics. Now they've gotten casual about this, which is a mistake. If you can't get a doctor to talk to you about this, don't bother with them -- just go to the pharmacy or a good health-food source and ask for probiotics, let them explain to you which are the most potent/helpful brand they happen to have.
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Yes, get a new doctor. There is a new health care reg, as I understand it, that says that if a patient is re-admitted for the same problem within 30 days, they don't get paid by medicare. And at least in NYS, they can't discharge a patient if you say you are not ready or able to care for them. The past few times my mom has been hospitalized, I simply say, "I'm not taking her home until you've solved the problem". Sorry that you are going through this and hope that you find better help soon!
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Hey Chloe-I just today saw your question. How are things going now? Reading your post-I can totally relate to a couple times my mom ended up in the hospital with pneumonia. Those fluid pills sure do the job-and I am wondering if you are now giving her less or none and if she stopped peeing like she was. The ER and hospitals don't want to keep patients long-and I too have felt like I was taking mom home too soon but she really got better care from me! haha. As for the antibiotics giving her diahrrea-I always call mom's Dr and he takes her off them and tries some other. I also give her the probiotic yogurt-whatever the antibiotic. My mom is sooooo sensative to meds. I am sorry you are going thru this. So many times I thought mom was on deaths door but somehow she recovers from these terrible illnesses and issues. We tell her she is like a cat with nine lives! Anyway, I hope things are better now for you! Mame
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Your in the right place! Look into a elder lawyer he might be able to set you up with in house care...right away, Medicaid paid, even if not qualified. I not a big fan of lawyers but unfortunately your situation is likely to continue to spiral then not. See if there is a care giver support group in your area (free) and socialize with people in the same situation (in your area) they can recommend good recourses. My FIL got C-Diff in the hospital as well, Google it, pro bionics helped but they were very expensive at the time (3.00/pill). Watch the "diaper rash" it can get ugly quick and it burns them ( I used Desitin I put it on the toilet tissue and wiped) .....remember C-diff is very contagious so follow hazmat protocols. Regarding the urination…..hmmmm If this was MIL, I would mention it to the PCP and follow up with the urologist. How’s the kidney function? Remember the hospital is not the end all…they have rules to follow and always differ to the PCP or specialist. Good Luck….make time for the support group it was the best thing I ever did! Find a new Doctor!
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