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FedUptothetop Asked October 2016

Mom lives at assisted living. They call me all the time to complain about her and want more money.

The staff, who are not medical pros, call me frequently saying Mom needs various drugs for various problems. I have found no evidence of medical problems other than she does have minor dementia. They keep making me take her to the doctor for all this and the Dr. says there is nothing wrong with her. They want me to switch her to their Dr. and their pharmacy (so they can drug her into a stupor, I suspect) .They have threatened to move her to the Memory Care unit and double her fees. She is a very sweet, pleasant and friendly woman. I think this is all about them wanting MORE $$. I have told them mom is paying all her income to them and I am supplementing her fees with my savings. I am very low income and can not afford another dollar for her care. What should I do?

EXPERT Carol Bradley Bursack, CDSGF Oct 2016
If the home is providing good care for your mom, I'd listen to them since they see her 24/7. If you are concerned that this is just to medicate her to make her "easier," then I'd think of moving her. Much depends on quality.

I agree that many elders will put up a front for visiting family so that they seem pretty normal. Then, when the family leaves, they sink back into their norm. It's tricky to know what is right, but try to determine the level of care and the motivation of the ALF.

Best wishes to you. It's always hard no matter what we do.
Carol

tigerdaughter1 Oct 2016
I've been told that the Ombudsman will only address issues that the doctor says are going on with a parent. They abide by the law and any written description/prescriptions. This was shared by an Ombudsman professional.

I had similar problems and moved mom and dad twice. In the first case we went from $3,500 (rounded) to $5,500 to then $20,000/month. I had a personal and direct conversation with dad (mom needed the help) and also explained that the facility was looking to separate he and mom. That was not going to happen under my watch (I live up north and they're down south). Not to mention other issues that were being brought to my attention by the cleaning staff with regards to the general mgt staff. The lower staff members said they saw how much care and attention my sister and I gave to our parents and wanted to be of help.

After the Mgt told us "it might be best if we move mom and dad", I gave them a 30 day advance notice (note I quickly went to work to find a new home), they told me that mom and dad would likely die in 6 months due to the disruption in their lives. Do NOT believe anything they say.

I moved mom and dad to a new home, it was lovely and bright and worked well for 1 year. Then, prices went up again and the quality of food and care went down. Together with my 6 independent aids (who I found, researched their background and hired) I found a private 3 bedroom, 3 bathroom house and moved mom and dad in this past May. It's a beautiful home in a gated community. Mom and dad love their new home and beautiful open backyard. We have the house all setup for any issues that might occur. One or two aids are always there 24/7. We talk several times/week and manage all issues together regarding their care and well being. This costs to do this has dropped to about $1,200 less per month and I've been able to make sure mom and dad now have better care and interaction than they did at any of the facilities.

I wishe they'd never moved out of their home as that would have made this all much easer. However, looking back, the transition educated me on what's needed to properly care for seniors at this stage of life. I'm thankful to all who've helped me along the way.

It's not easy and is very time consuming (I also am in business so this is a 2nd full time effort - which I do not mind doing). It has taken me 4 years to get to where we are today, but has been well worth the time, effort and love. I"ve learned more about myself and mom and dad than I ever expected.

I hope this helps. Trust your gut and know that whatever decision you make, it will be a good one. And, you can always try again if that doesn't work. Hugs to you and your mom. She's lucky to have such a great daughter.

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AbbyCody Oct 2016
I'm sorry this is happening--it's rough when it's time for a family member to move to the "locked door" wing. First of all, you are doing a great job looking out for her. In my personal experience, our facility also wanted us to move my Aunt into the Memory unit soon after she got there. It's hard not to think that they want more money out of this. I fought it for 2-3 months, but I finally I could see she was doing some things that made it difficult for the staff to keep her safe. She wasn't wandering outside but got lost at times in the facility, and it wasn't getting better. Even though I was hesitant to agree to Memory care with so many people that were worse than her, the new doctor was very good, and having medications on site ended up being so good for her. So would it be better to move her home to you or to private care which cost more $$$? Probably, but I (and you) are doing the best we can. Trust this facility to make decisions that are in her best interest. I fought it, but they were right. Even slight dementia needs the full-time round-the-clock care. She still is the most "with it" person in the Memory Care wing, but they have had her become the "helper" at meal and activity times, and she seems to like it there. Good luck, and find someone you trust there and really listen to what they are saying--

freqflyer Oct 2016
FedUp, one thing to remember, the Staff is with your Mom all day so they see how she is doing. What time of day are you there visiting, or how often do you visit?

If your Mom has dementia, she could be "showboating" while at the doctor. This means she is able to hide her symptoms for a certain amount of time. By using the doctor assigned to the Assisted Living, the doctor can be called in when the Staff sees a problem. As for using the facility pharmacy [usually mail order or through a local pharmacy], it could be cheaper then using an outside pharmacy.

With my Dad, he was in Independent Living and using the optional higher care once he started to show sundowning, and that cost started to add up. It turned out to be less expensive for him to go into Memory Care at this facility. You might want to compare the prices.

gladimhere Oct 2016
Your savings is not going to last forever. Is mom in a facility that accepts Medicaid after a period of self pay? If not, I would be concerned about how the bill will be paid down the road. As far as the meds, the medical experts at the facility know mom best. Meds may help with her anxiety amking it easier for staff. Since she is in the early stages of dementia, memory care will become very necessary at some point, dementia is a progressive disease she will get worse. Time to starr planning on how mom will remain in care.

Pattimw5 Oct 2016
My mom was able to "hide" how bad her Dementia was for literally years by "showboating" for the doctors until FINALLY I found one who could see through her act. I don't know what time you visit but try in the late afternoon or evening. That is when it is usually at its worst. Good luck to you. This is a very hard road we travel.

jackie18 Oct 2016
So far they have only told you things that will benefit them ( more money, using their doc and their pharmacy.) You did not mention ' sundowning," and that is probably not an issue. You say these people are not medical professionals. There is a very long spectrum to Dementia. i do not think she is significantly impaired. I would visit various times during the day to see for yourself.
My gut feeling from what you have written is that you should get her out of there.
Most reputable places will have a meeting with you and the staff and work out a " care plan" if things need to be changed. They won't just call on the phone saying you need to see their doctor , use their pharmacy and need more expensive care. This should not be about money from their perspective. It should be about CARE.
Remember that if an organization is making money from providing a service for someone, it is a business. And businesses need to make money to stay profitable. That is their goal.
And like Churchmouse asked..."what problems"?
Also investigate Medicaid eligibility- You should not be putting your funds toward her care. You may want to retire one day too...

dilofthedevil Oct 2016
If you have doubts and concerns regarding the quality of care your Mom is receiving, and believe your Mother is being taken advantage of or not being cared for in a manner appropriate to her needs, you could consider contacting your Area for Aging services and have an Ombudsman come out to speak with your Mom and the facility to provide an unbiased opinion on the situation. The Ombudsman will advocate for your Mom's rights.

LexMary Oct 2016
Your mom sounds exactly like my mom was. She was pleasant and got along with everyone, but as the day turned to evening she starting "sundowning". I never saw this side of her because I usually visited in the day. She became very agitated, aggressive, just downright mean. When the aid/nurse at the ALF told me of her behavior, I was surprised. They can usually counteract the behavior with some anxiety meds, but be careful that they don't overmedicate her it can have a zombie effect and make her a fall risk. Also ALF really aren't set up to deal with dementia, they say they are to a point or "that everyone has some form of dementia", but ones that sundown are a challenge. Also ALF don't keep them occupied all day they have between 3 to 4 activities that the residents are encouraged to participate in but are nor forced to. My mom got bored which added to her agitation then she lashed out at the staff. You may look into how busy they keep the residents. People with dementia especially high functioning dementia patients need to occupied.

MsMadge Nov 2016
So sorry stressed
I've seen the same type of actions by doctors in hospitals - they loaded mom up on demoryl ambien and god knows what else without an IV and put her into renal failure
Haldol worked like an elephant tranquilizer on her
I fight like the devil anytime she's hospitalized now but it was only through her first very bad experience did I understand how necessary it would be - who's even heard of all these drugs before and would think it necessary to question everything - hospital settings are really tough since so many different doctors come in at various times and no one knows what the other one is doing

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