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brendab Asked September 2012

Why does the nursing home keep calling us at all hours because they "can't handle" my mother in law?

My mother in law is 91 and has developed Alzheimers in the last year and a half. My brother in law has been living with her for the past 2 years and taking care of her; however, he recently underwent surgery for throat cancer and is temporarily unable to care for her. Since my husband and I both work full time, we had no choice but to put her in a nursing home, planning on a one to two month stay. She has been there three weeks and we have been called at least a dozen times, demanding that one of us come out there and stay with her because they "can't handle" her and don't have the staff to do "one on one" with her. By "can't handle her", they mean that she won't stay sitting in a wheelchair or laying in her bed; she wants to get up and move around and they are afraid she'll fall. Whenever we go out there after one of these calls, we find that she is agitated and wanting to walk around and talking about wanting to go home. My husband usually gets her walker and walks her around the halls for 30-40 minutes and that seems to calm her down.

I realize that nursing homes aren't staffed to give one on one attention to each individual, but we can't keep going like this. With working full time, we aren't able to take care of her ourselves, which is why we had to go with a nursing home to start with. (We've had to use sick time and vacation days to cover time off from work with the nursing home has called us to come in.) Shouldn't the staff be prepared to handle this, or are we just expecting too much?

shebebusynow Sep 2012
I lived in a standard nursing home for a couple of months, and I can believe that such needs would strain the available staff & conditions. I was an easy, cognizant patient and I could barely get anyone to help me bathe. Mixing a variety of patients is fine until you get to those who are anxious and mobile and not able to reason or remember. That's why Memory Care was invented. The nursing home you're using should either buck up and figure out how to deal with it (not call you to do it all the time) or help you find more appropriate care.And the cost? The amounts quoted here are quite reasonable compared to the $80,000/year it can cost in Canada for a live-in caregiver! Forward-thinking investors and hospital administrators need to be designing and building dementia housing now!

picture Sep 2012
She is at the wrong nursing home first of all. Second, have your doctor order very light amount of medication to calm her, just a bit!!!! ONly!! Third, Medicaid pays for all of the nursing home cost. Get her on the list. Fourth If her income it over around $2000 a month, go to an Elder Lawyer and have them organize her finances so she can get on Medicaid and IRS cannot take her money she has saved up and her house. Mine cost $4500. They do go up to $8000, but that is way to high.
Sixth, Take things for her to use her hands with. Tie things to her wheel chair, walker, shirt, etc. So this way she cannot drop it, but will have something to fiddle with. Go to Toys R Us to the area of educational toys, the wooden ones. Tie a small purse or container to her with several of these toy in there so she can get to them. Also take her to the mall or such, let her pick out a stuffed toy, super soft so she can have it with her always. And make them keep it with her. VISIT OFTEN, CHECK EVERYTHING!!! Her closet, her med chart, her doctor visits, her bathroom, her sheets. Be with her at meals when you can. Take her OUTDOORS!!! Believe me , I know.

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brendab Sep 2012
Thank you, everyone, for your comments and suggestions. It's nice to know that others have had this same problem. We were called to the NH three times in the past four days, with only one call actually being justified. (The last call came at 2:30 in the morning saying they couldn't get my MIL to lay down and go to sleep. When DH got there 20 minutes later, she was sound asleep and the nurse actually woke her up to tell her that her son was there!) There was a care meeting yesterday and DH got to express his concerns. Apparently, the director of nursing wasn't aware of how many times he had been called out, and there was a lot of confusion about her medication. Some nurses thought the family didn't want any calming medication (Xanax, etc) which wasn't the case. Her chart didn't say that anywhere (it had the doctor's orders of Xanax every 8 hours as needed) so we have no idea where that notion came from, or why they just didn't check the chart and see the doctor's orders. Anyway, we'll see if things calm down a bit now. Thanks again for all your support!

wuvsicecream Sep 2012
I took me about a year before the NH understood my Mothers behaviors. Some behaviors are personality some Dementia and some medication. My Mother went directly from my care to a behavioral health hospital, she became a harm to herself after a year in my care, due to worsened conditions . There was no way I could handle it alone. Mom's Dr., recommended stabilization with meds at BH hospital, as he was well aware of her decline and I kept him up to date on the behavior change involved.
Then she had stayed for 3 months in a locked in unit (wandering issues) with all sorts of seniors with different mental health issues. A strict routine and diet and schedule and carefully watching her meds and effects of meds and behavior monitored closely. Mom became so stable that when she was finally admitted to reside in a NH she fooled the NH into thinking she was perfectly fine. The social worker called me and said why is your Mom here??? I said "What?" "Really?" Then she said I know your the contact but who are you to her? I said "I am her daughter?!" She then says "she said she doesn't have any children." I Laughed, and said, "now you understand why she's there?"

I am telling you all this for many reasons:
I had to figure this out myself....
No one knows a parent better than a child, you know what makes them sad, you know what makes them mad, happy, likes, dislikes, comforts them, etc.
.There is an epidemic of dementia and I don't think that everyone that works in a NH is not educated to deal with this as in a single position (according to their job).
(Another words, Would you o to foot Dr to treat an Eye problem?)

There are LPN's they administer meds (by Dr's request according to LPN's daily log) There should be a RN "Head Nurse" if there are issues with meds or Dr's or problems medically.

There are aids who dress, bathe, clean room, basic daily needs. They really know what the resident's personality is even how they feel and act on a regular basis. The aids spend the most quality time. Nurturing and caring, they know what comforts the resident. I feel they should get paid the most.

There should be Activities Professionals and Director of Activities. They also spend quality happy time with the residence. Music, singing games, exercise, etc.

Social Workers do paperwork, complaints, request from family address problems, or direct you to the issues and what to do about them.

Administration.... handles issues that you really trouble you with the staff, billing etc.

What I am trying to say is if you were in the hospital and said I am cold can I need a blanket to a nurse she would understand your request and see that you got what you need. Someone with dementia needs a person to translate their needs, and the responsible party needs to see that these request are dealt with because they are not understood and don't know how to ask or who to ask, in a way that is can't comprehend. They can't speak for themselves, in a sense.
When a person with dementia has change of location, scenery, routine, it's like living in a place completely unfamiliar. Just Imagine If you fell asleep and woke up in a place where you knew nobody's face and nothing around you looks familiar. Then you see a face that you recognize, wouldn't you ask to go to a place you feel comfortable.? It's like Dorthy in OZ ...NO PLACE LIKE HOME!
You have to talk about happy memories, bring things that they recall and that are familiar. Talk to them as if they are right no matter what...no anger or sadness.. just happy, they relate to emotions and expressions.
I hope this all helps.

sumlerc Sep 2012
When my Mom first entered NH care I was getting calls day and night everyday. I must admit, My Mom was cutting up! Smoking in her room, pushing chairs up against the door so the staff couldn't enter w/o her opening the door. after a short while, some of her behavior sub-sided. They still call me everytime my Dad fell, ok this was everyday or night because he tried to walk unassisted. I asked the DON was this necessary to call me at 11:30 P.M to say Dad fell but he's ok. Of course I want to be updated, kept in the loop but OKAY this could wait until at least 8 the next morning. The constant calls have ceased, they wait till a decent hr to update me.

Now my Mom's dementia has progressed, she has very little self control. Up and down, back and forth falling, constantly asking for this or that, for me and forgets she just had what she asked for, then gets angry, anxious and repeat the cycle. Mom is now on Hospice care, just to give her me and the NH extra help. She gets all of her meds, same services, and more one on one attention. Its still rough at times but the extra help, has helped.

If they continue saying they can't handle your loved one, perhaps she does need a different facility.

I wish you all better. Some people think a NH is the easy way out, it's still work!!!

CyndyS Sep 2012
is there any other facility that specializes in Alz care near you? I too work in a skilled care facility, but we are not equipped to handle all levels of Alz care. I think it is unreasonable that you are called in the middle of the night. They should be able to suggest a more suitable facility. i am so sorry that you have to deal with them, it is not a good fit, but they are not acting professionally. There are facilities that can help you and your mom. I hope you can find one.

CareforMom99 Sep 2012
Hi there, I am from Canada so I am not sure if you are paying for this nursing home stay. We do for short term stays. Generally these homes seem to be understaffed. When I put my mom in, they missed showering her for a week. Yuck! My mom was too embarrassed to say anything. Anyways, if I was in the situation again, I would hire a caregiver to go in and walk her or sit with her for a few hours per day. It is generally a low amount to have peace of mind and not have to take time off work. Even if it is a few times per week. You may even be able to find a volunteer who can come in from a local church or community center. Best of luck. It sounds like a tough situation all around. Hope your BIL gets better too!

Cautious Sep 2012
I would beware of lots of additional meds to keep her calm because it just leads to more issues down the road.Some can be very dangerous when used on dementia patients.If you can not spend the time I would start looking into agency caregivers because the problem will only get worse as the dementia takes its toll on all of you.Ask around because good agency people are hard to find and retain.My best one through the years was 73 years old! Hospitals almost demand a sitters at this point because of the many medicare and medicaid cuts taking place.A good advocate & POA will spend their money on their care in situations like this.Sometimes nursing homes will try to drive you crazy in order for your permission to drug them into oblivion or get you to move your loved one to another facility.They prefer zombies because they are more cost effective.

Noleslover Sep 2012
I agree with Darcy. I used to get calls like that too but I told them that just because I live ten minutes away, does not mean I can drop everything and come running. What would they do if I lived 100 miles away? I realized they wanted me to do their job for them and called the Director of Nursing to tell them to stop calling unless it was an emergency. They did and learned to deal with it. With the amount of money my dad spends to care for her there, I was not going to fall into that trap.

earthbeams4u Sep 2012
Now he can walk at nights and the excellent and kind staff will 're-direct' him if necessary. His mood is much better these days and he's on less medication since being in the ALF.

earthbeams4u Sep 2012
Will medicaid send a companion for her to help out? We have my father in asst. living that has a 'reminicense neighborhood'. THose with dementia or alzheimers do very well in this type of situation. My father would roam and walk all night long at home. It was too constrictive and he didn't do well there.

lillian41 Sep 2012
Ok here's my thoughts on this, both my parents are in te nursing home both ave dementia. I have NEVER received a call in the middle f the night or day telling me they can't handle one of them. If I dd receive that call I would be looking for other placement for them. As far as her walking around and not staying in bed that is not your problem. My dad did the same thing when he first went in but I never was called tat they couldn't handle him to come out there. They would redirect his attention, it may last 10 minutes or 2 hours it didn't matter they took care of him. it's all about patience and understanding. If they can't handle that then I would be researching other facilities. Talk with the DON or the administrator,you might be pleasantly surprised. Hope this helps.

KeepontryintM Sep 2012
Is it possisble for you to go over on a regular basis that's convient for you and walk around with her. Is she aware enough to know that you're coming at a certain time each day? If she knows you're coming at a certain time, she may be able to wait until then.

I know it's a pain to go over there every day. But it sure beats a 3 am phone call.

Darcy123 Sep 2012
That is the responsibility of the nurse on duty~ I would have NEVER called a family member for that at odd hours! I would rarely call during the day. That is what they were in the nursing home for~ (I am a nurse and used to work in nursing homes.) You need to call and talk to the administrator or the DON. I would probably try the DON (Director of Nursing) first, and tell them that it defeats the purpose of having her their if you are still required to do the work. They SHOULD call in an emergency, or perhaps set up a certain time frame that is exceptable to have her be allowed to call if needed. Like if she is feeling lonely, she can call in the afternoons, or what ever. ?? They need to be responsible. That is what THEY (staff) are there for! We often had people up all hours of the night at times. We dealt with it. One lady loved to help fold bed packs and towels. Some would get a snack and go back to bed... some would watch some TV in the common area. Some would need to be followed around. Yes it was a pain sometimes and put us behind in our other work... but we dealt with it. That is just part of the job. If they can't do it, perhaps they need to think about cutting the work load at night for their staff... or putting an additional person on duty at night. Either way, not your problem. If the DON can't or won't do anything, call the administrator. If that doesn't work, start looking for another placement.

IsntEasy Sep 2012
I realize that people are mostly expressing frustration that they either cannot afford or just don't want to pay for nursing care, but the fact is it is extremely expensive to provide and that is why it costs so much.
I used to work in sales at a senior community and was often amazed by some of the adult children's reactions to the cost of care. For some, you could tell that they considered every penny spent on care to be a bite out of their inheritance. Others have a "spare no expense", "it's mom's money" sort of attitude. For most, it's somewhere in between. The ones who always befuddled me though, were those who just think it should be "free". The parent has the money; a house, a retirement account or pension, Social Security, etc. They just think that high-quality, 24 hour care personal care is something that one shouldn't have to pay for. I would often hear statements like "I can't believe we have to spend her money on THIS." I remember one daughter actually saying that it was a disgrace, in a country like ours, that families have to pay for nursing care. I don't know what she meant by that, but it sure made me curious about how she votes : )
Having said that (or ranted that, I should say), I agree that for whatever a facility charges per month, they should provide high quality care.

doedoe1237 Sep 2012
For $8000. a month they should be able to handle this.

IsntEasy Sep 2012
I agree that a dementia unit would be better able to handle your MIL's care, but I'm shocked that the SNF she's in is insisting that you come provide care because of a situation that's VERY common. Lots of nursing home residents have this sort of 'restlessness'. While it's not reasonable to expect them to provide a one-on-one caregiver 24/7 (at least not without a significant increase in the monthly fee), it is reasonable to expect that your MIL will be provided with support for taking regular walks throughout the day. That's part of standard care for someone who has limited mobility.

Here4her Sep 2012
I don't understand why they don't call her doctor and get her some meds to keep her calm. After all NH are very expensive and why should your life be disruptive when they are getting paid.
My mom was admitted to hospital doe UTI and diahrreah. They called me in the evening late and wanted me to sit with her for the night because she was upset
I had to be home cleaning the white carpet of crap all over the place. It took hours. I refused to go. I asked them if I stayed there were they still going to charge her and they said yes. They said they would have to get some "sitter" for her. I told them I was up to my neck in poop and had to get it cleaned up before she could come home. I called 15 minutes later and she was sound asleep. But they called dirst thing in the morning and told me to come and get her thankfully her carpet was clean although still wet. It must be on her record because they will not admit her anymore. She has fallen, UTIs (which they admitted, but never treated her), severe back pain, etc. Doc keeps saying she is old and will keep getting "chinks" in her armor.
These places charge an arm and a leg, but don't hire the staff to take care of these patients. Someone is pocketing the money.

lynmac1 Sep 2012
I have to concur with Jeannegibbs. I don't believe that standard units are prepared for the challenges that come with some cases of dementia. Wandering, behavioral outbursts, and so forth are often presented in the extreme when Alzheimer's is prevalent.

jeannegibbs Sep 2012
It may be that your MIL needs the extra attention and understanding of a Memory Care Unit. Is such an option available to you on a short-term basis?

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