Assisted Living and non compliance. What can I do?

Dear Gayle, This is a terrible situation for you and your Aunt to be in. My Mom went straight from rehab to NH, with Medicaid pending, so I don't know how the AL route goes. However, it would seem that due to substantial assets, your Aunt has been paying AL out of pocket and will continue to do so until she is down to $2000? I wonder which is cheaper on a monthly basis - an AL or a NH facility? Regardless, wouldn't it be logical to spend down her money in a NH now where she would get a higher level of personal care and supervision? Then when she gets down to the $2000 mark, start the Medicaid application and she would remain in the NH as "Medicaid pending". It does take 6-8 months for approval, but she stays in the facility anyway, and they continue to get her SS and Pension checks if any. Then I believe the approval is retroactive and the NH gets whatever you owe at that point from Medicaid. If I am wrong on any of this, I know more astute caregivers than I will set the record straight. I would suggest you use some of the money she has left for extra clothing/shoes/slippers before she goes to the NH. I would also start doing the laundry myself - they ruin everything. As far as her fighting everyone, perhaps the doctor can prescribe something to calm her anxiety and agitation. I wish you all the best - especially patience and fortitude!

Thanks...also 6 month waiting list for NH.....I was doing her laundry, but now am very short on time...I also work full time and care for my mother (her sister) on a part time basis...ugh...

and she is also on Ativan as needed....horrid situation

When an elder is so mentally and emotionally out of it as your Aunt is, you might want to contact the doctor to make her meds a standing order, NOT "as needed" or "PRN". She certainly can't decide when they are needed, the nurses do. Not giving them to her on a regular basis probably increases her agitation and non-compliance - what a convenient way for them to shirk their duties with the excuse "Oh, she won't cooperate". If she had the Ativan on a set schedule, she might become more compliant.

My Mother left assisted living, because she was no longer able to perform basic tasks like toileting. I second the suggestion that she be moved to a NH. I am guessing that you are her POA and are able to make those decisions. Start now, by meeting with the director of the facility that she is in now. She needs 24 hour nursing care.

I am going to meet with director tomorrow. And I am going to call NH to see about having her admitted...I only have POA over her health care...not financial...she developed dementia and would never give anyone control of her finances....my name is on her bank account that is all.....I was told there is a 6 month wait on nursing home admittance unless they are in the hospital and have to go to NH

Gayle sometimes you have to think outside the box. Find a reason to get her to the ER preferably one with a N/H attached. She has to have a qualifying stay in the hospital before she can be placed. I believe it is three days. Once she is admitted REFUSE to take her home and make sure she can not go back to AL, they probably will be glad to co operate with that. review all her health problems and make some up if necessary. Use any idiocyncrosys She keeps shaking her head as though she is in pain. she keeps holding her chest has she had a heart attack. She's weak on her left side, keeps falling has she had a stroke. She stares straight ahead sometimes is she having a seizure. and the old perennial a UTI so don't clean her up ,the worse she smells the better, they will want to get her into the N/H as fast as possible. If she is an old smoker she probably has a productive cough so you are worried about pneumonia. Any swelling of her legs is she in heart failure. If you don't have medical knowledge research these ailments so you can dish up the symptoms. Do it one ailment at a time they will be afraid not to investigate. At her age and with that level of neglect something will be out of wack even if it is only dehydration.
Now what is your level of tolerance can you stand up to being bullied? The hospital may be sweetly co operative or fight you every step of the way. Can you stand your ground and look them in the eye and quietly but firmly say NO. Do you have a husband or adult child to assist. start off alone but call for re enforcements if needed. probably the best time to start this would be Sunday morning when all the heavy weights at the hospital are enjoying Sunday brunch and nothing will get done till Monday morning. You can sign permission for treatment but be very careful not to take financial responsibility. read the fine print even when they are standing there with a pen and directing you to sign where the X is.
As someone suggested buy aunty some new clothes for the N/H but don't provide them till she is actually admitted. Actually go to a thrift store because the N/h will loose them
I am sorry Gayle this is going to be very rough on you standing up to a whole brigade of white coats so pull up your big girl panties and go into battle. I really hate that expression it sounds so condescending. but as long as you behave reasonably there is nothing they can do to you. While I am not advocating using these methods I have seen them used by others and they did work. We are all behind you ready to hand you the ammunition

Veronica....that was the most honest, to the point suggestion I have had....I think it is just what I needed to read. Actually, I was thinking that all along but not sure how I was going to accomplish it. I am going to talk to facility and her Dr. today. Hopefully her Dr. will have my back and that will help. Wish us luck!!!

Dear Gayle, now that you have mentioned you are not her Financial POA, you may want to start proceedings to be her Conservator (for finances). You have to be careful with signing documents for her as you don't want to be personally liable for her debts. I would suggest you consult with an Elder Law attorney. In the meantime, I hope you have been signing all her paperwork as POA anyway (i.e. Medical). On another post elswhere on this site, somebody had suggested that without any POA at all, a caregiver should sign as Their Name FOR Patient's Name. You really have a daunting job on your hands - it cannot be easy working full-time and also taking care of your Mom & Aunt. Blessings to you.

Why isn't your aunt allowed to apply for Medicaid?

And I agree with an above suggestion about getting her admitted to a hospital so she can be discharged to a NH. It's not difficult to get an elderly person admitted to the hospital. Take her to an emergency room. I don't know her ailments but use of her ailments to get her to an ER. Then you can talk to the RN or the Dr. about getting her admitted. If your aunt is confused and living in an unsanitary environment tell the RN or the Dr. that. I wanted my mom admitted to the hospital because she refused to get out of bed. I took the RN aside and explained my situation and they admitted my mom. It can be done. Then you can start working on the NH.

I don't remember if you said you had POA. If not, can you get POA? A lot of people say you have to see an elder care attorney to get POA. I got POA over my dad by downloading the paperwork from legalzoom.com. Had it notarized and we signed it and I never had a problem with it. Once you have POA get to the Medicaid office and begin that process. It's not always as daunting as some might thing. When I applied for Medicaid for my dad, who was in a NH, it was a fairly simple process. It took 3 months to get him approved and he had died by then but I was told by our Medicaid caseworker that it's rare for someone to be denied "vendor Medicaid" which is what NH Medicaid is called here in MO.

I stress out easily. I get my britches in a knot and freak out over everything. But even I was able to get my dad to the ER, to the NH, and get him Medicaid. And if I can do it anyone can. You can start the Medicaid process as soon as you have a NH for your aunt to go to. And my one suggestion would be to keep in touch with your Medicaid caseworker. I practically befriended the gal who took my dad's application and called her weekly. It didn't get the stupid thing done quicker but I don't think I was just a case number to her either. And when I went to the Medicaid office I had all this paperwork with me. The NH had given me a booklet telling me what I'd need to apply and most of it was bogus. I was terrified because I didn't have my dad's birth certificate but they didn't even ask about it. I knew his social but didn't have his social security card, again no problem. It was a lot less of a mess than I thought it was going to be.

Good luck!

Hi Gayle - I'm so sorry you are having to go through this. Clearly the AL facility isn't caring for your aunt very well. Who wouldn't be agitated if they're lying in urine-soaked pull-ups - and itching, etc. When you do finally get her to a nursing home, please be her advocate. It's so hard to find Medicaid-pending NHs that take decent care of the elderly, especially those with dementia - but they're out there. Once you are given a list of NHs from the social worker at the hospital that are Medicaid-pending, please go visit them and pick the one you think is best. Trust me, they are all different and the care will be all over the board - and most social workers haven't personally visited the NHs so can't give you good advice. I know this takes time - and that is something you don't have a lot of with working full-time and helping to care for your Mom, but please try. Maybe another family member or a friend can assist. God Bless You in your efforts to ensure your aunt is well cared for.

I caregive my 90yr old mother who had an MIA in 2000, and a CVA in 2011. Since 2011 my mother has had PT, OT, ST, and is doing so much better. It's amazing how far along she has come. And, she has been UTI free now for three, count that, THREE months----no infections, no CIPRO Rx, etc.

So, what I suggest, is to have your mother live with you at your home. You can hire a caregiver, or work with the NW Caregiver Support Program (that gives respite care to caregiver (you)--if you'd caregive your mom.

In addition, her gynecologist put a pessary (correctly sized) into her vagina and it holds all of her female parts in their anatomical position so as to help her bladder empty out of her urethra just fine---and not have retained urine which causes UTI's. It's also critical that your mother have dry pads on and change them every two hours (that is how often my mother gets into the bathroom so as to keep from getting UTI--bacterial growth started again.

Your mom needs to be on a 2-hour voiding schedule to keep her dry when using pads. And, what's really important here as well is to have your mother drink at least three 8-oz glasses of clean water per day, or more, to flush her system. Older people, especially women with incontinence don't like to drink water because they'd have to pee more frequently, or experience wet pads more often if they cannot get to the bathroom often enough.

So, long story short:

1) Drink at least three 8oz glasses of clean water per day
2) Void every two hours in the bathroom.
3) Change wet pads immediately
4) Check with gynecologist or urologist and get a pessary for your mom.
5) Get your mom into the bathroom at least once at night during sleep to keep dry---change pads because incontinence doesn't just stop while sleeping.
6) Get your mom OUT of that facility. You'd care for her better than they can 100%. I've reported a facility and their care to the State DOH because of poor caregiving and cleanliness, and abuse---you can file an anonymous complaint!)
7) Once you get your mother home, find a good female gynecologist, and female urologist, and have all issues discussed (ie, voiding, pessary, diet, have them do a ultrasound of bladder to find out how much urine she's retaining, etc.)
8) Check out your local Family Caregiver Support Program for getting help taking care of your mother in your home. They can provide 15-20 hours of help each week for free, depending on your own income, or your mom's.
9) Ask the Lord Jesus to help you with everything---He cares for you and your mother and wants you both Well.
10). Be your mom's health advocate and don't settle for any nonsense, whatsoever. Talk to her doctors, maybe change doctors, and never, ever allow anyone to abuse your mom, never, ever. If I were you, my mother would Not be in their care, but my own! Her life depends on it, on you!

I caregive my 90yr old mother who had an MIA in 2000, and a CVA in 2011. Since 2011 my mother has had PT, OT, ST, and is doing so much better. It's amazing how far along she has come. And, she has been UTI free now for three, count that, THREE months----no infections, no CIPRO Rx, etc.

So, what I suggest, is to have your mother live with you at your home. You can hire a caregiver, or work with the NW Caregiver Support Program (that gives respite care to caregiver (you)--if you'd caregive your mom.

In addition, her gynecologist put a pessary (correctly sized) into her vagina and it holds all of her female parts in their anatomical position so as to help her bladder empty out of her urethra just fine---and not have retained urine which causes UTI's. It's also critical that your mother have dry pads on and change them every two hours (that is how often my mother gets into the bathroom so as to keep from getting UTI--bacterial growth started again.

Your mom needs to be on a 2-hour voiding schedule to keep her dry when using pads. And, what's really important here as well is to have your mother drink at least three 8-oz glasses of clean water per day, or more, to flush her system. Older people, especially women with incontinence don't like to drink water because they'd have to pee more frequently, or experience wet pads more often if they cannot get to the bathroom often enough.

So, long story short:

1) Drink at least three 8oz glasses of clean water per day
2) Void every two hours in the bathroom.
3) Change wet pads immediately
4) Check with gynecologist or urologist and get a pessary for your mom.
5) Get your mom into the bathroom at least once at night during sleep to keep dry---change pads because incontinence doesn't just stop while sleeping.
6) Get your mom OUT of that facility. You'd care for her better than they can 100%. I've reported a facility and their care to the State DOH because of poor caregiving and cleanliness, and abuse---you can file an anonymous complaint!)
7) Once you get your mother home, find a good female gynecologist, and female urologist, and have all issues discussed (ie, voiding, pessary, diet, have them do a ultrasound of bladder to find out how much urine she's retaining, etc.)
8) Check out your local Family Caregiver Support Program for getting help taking care of your mother in your home. They can provide 15-20 hours of help each week for free, depending on your own income, or your mom's.
9) Ask the Lord Jesus to help you with everything---He cares for you and your mother and wants you both Well.
10). Be your mom's health advocate and don't settle for any nonsense, whatsoever. Talk to her doctors, maybe change doctors, and never, ever allow anyone to abuse your mom, never, ever. If I were you, my mother would Not be in their care, but my own! Her life depends on it, on you!
11) Give your mom a cranberry capsule once per day to ward of UTI's.
12) Give your mom a D-mannous capsule once per day to ward off UTI's--both of these keep bacteria from digging into the bladder wall and causing UTI's.
13) Buy some unsweetened organic cranberry juice and give 1/3 cup per day, or every other day.
14) Get the gynecologist to Rx your mom some Estrace Cream in low dose and have your mom apply it at nighttime just inside her vagina twice per week, pea-sized amount. It helps keep the vagina in healthy condition.
15) If your mom gets the pessary, they will give her Trimosan gel to apply twice per week to keep the pH correct in her vagina.
16) If she gets the pessary, the gynecologist will have her back in a month or earlier to check to see how it's working. From there the timing to get her in may be once per month or once in 2 months just to check on erosion of the tissue walls that support the pessary.
17) Remember, give her water to drink because constipation is "old toxic poop" in her system and without water poop gets stuck (peristalsis) in the colon and it causes UTI's.
18) Feed her Activia yogurt to help keep her regular. It's wonderful and tastes great, besides it also helps with pooping, and keeps everything working great!
19) Get online on Internet, and look up what you need to know!
20) Be your mom's health advocate. Stand up for what is right! Don't settle!
Her life depends on you being her 'everything' advocate!
21) In the Bible the Lord asks us to care for the widow as family, and He asks us to Honor our Mother and Father. What a better way to do this than to take her into your home, whether you work, or not, to help her. She raised you, so the way I look at it, it's payback time! She loves you and So, Love her Back!
God Bless Everyone Who is Taking Great Care of Their Mother, Father, or Anyone Else!
22) Please take good care of yourself and find some caregiver support. Plan it out and see what good can come from all of this information. I hope this helps someone out there! May God Bless All of You!

Please don't feel pressured to bring your aunt into your home and care for her in addition to your mom. Her care sounds overwhelming. It will interfere with your care for your mom and drain you physically and emotionally. If your mom is 90, you yourself are a "very mature" person and have to be especially careful about your own health.

If they're using Ativan to calm her down, it might be that she is non compliant in a physically dangerous way. Be sure to ask. You might not think a 90+ year old woman can harm you with a slap, but you'd be wrong. In TX, the care facilities have to write a report when a client hits or otherwise hurts someone so ask for that info. Be sure to warn the folks at the ER and hospital in advance. They can't refuse to take her because of it but they can take precautions.

The hospital advice seems good. If she sits in urine a lot, she probably also has pressure sores. Check for open sores but also check for ones that are just starting. Google for pictures if necessary. They can be life threatening, so you can hold your head high at the hospital.

Constant doses of Ativan will almost guarantee incontinence (in my non medical experience). She'll be so dopey, she won't know she needs to pee and will be too confused to cooperate with anyone. Ativan made my husband less compliant, not more. The only way it made him compliant was by making him too doped up and uncoordinated to move. If you haven't seen the effects of Ativan on an elderly or sick person, prepare to have your heart broken. It's not something to do for convenience.

Also. I agree about reporting the AL facility. If they can't handle her, they have a duty to make sure someone knows that.

Good luck and a big hug for you.