Follow
Share

I'm speaking on behalf of my sister who is the primary caregiver for our 88 year old mother. By the way, I live and work out of town. Our mother has dementia and the stage that she's in now has her crying out for attention throughout the day and night. It seems our mom is afraid of being left alone. The crying out and moaning keeps my sister from getting a good night's sleep and because she works from home, it can also cause several interruptions throughout the day. Guilt and the fear that something is really wrong, which usually there isn't, is one of the frustrating things about it. The moaning makes you jump to her aide everytime she cries out. Ever since our mother was younger, she's had a history of not sleeping well at night and that just adds to the problem. Mom has a prescription to help calm her. It either doesn't do the job or she's too doped up and doesn't know if and when she should go to the bathroom. We had caregivers come in on a regular basis, but since the pandemic, those visits have been suspended and my sister is doing all the work. I'm afraid she's suffering from burnout. How do you deal with a person with dementia who is so needy?

This question has been closed for answers. Ask a New Question.
Find Care & Housing
concerned62 my 83 year old mother lives with me and I deal with the same issue daily. Once I came to the realization that no one can ever give her enough attention it helped to put things in perspective. I still feel guilty occasionally but I was told to take care of myself first or I can't take care of her. I have purposely made sure that I spend time with her daily and it helps but only temporarily. It helps with my guilt because I know I have done my best. It is confusing when she does some things great and then can't remember how to fix her coffee that she fixes everyday. With dementia there brain changes and their thought processes change as well. My mother has never been interested in much other than her children's lives which as a young and single person it's okay. When you get married and create your own family it becomes a problem. Setting boundaries with her is a struggle when it comes to the time I spend with my family and not her. She inserts herself into every conversation my husband and I have and gets angry when we take our conversation to a private area. You have to laugh to keep things light.
Helpful Answer (0)
Report

I would think the caregivers that would come to the house would be wearing protective gear just as if they were working in a hospital.  I know it would be hard to get a mask on your mother, but has it been tried, even if just long enough while the caregiver there?  I doubt it due to the dementia but worth a try.  The neediness is a phase as there are several different phases of dementia and their outbursts.  Maybe your sister should speak with the doctor about adjusting her meds or maybe its time to have her placed into a NH or facility that cares for dementia patients.  They would put her in a "holding area" for a week and as long as she tested negative, I would think they could then put her in a regular room.  Speak with someone from aging office, etc.  If she doesn't have funds, they can get Medicaid applied for  to pay for the room.  wishing her luck.
Helpful Answer (1)
Report

Try the medication route and keep trying to find caretakers who will come. If all else fails, your life cannot be destroyed and you lose your job, etc. It might just be time that she has to be placed so she is cared for and not alone. I really know of no other way. You have to take charge and make some big decisions.
Helpful Answer (2)
Report

Toward the end of my mom's life, her precious Scotty dog died. That's when her moaning and crying became loud enough to have the neighbors call adult protective services to investigate. Of course spending just a few minutes with her they could see that the moaning was the result of her dementia. We found that buying her a stuffed "Scotty" that she could hold calmed her more than any of the drugs. We also started using CBD tea and oil; that really helped her relax. As she got worse she hated to close her eyes, her fear of death was so profound. Many nights she would hug the stuffed dog and whimper just like a baby. We finally put a wind up clock that softly ticked in her room only at night and the distraction was enough for her to doze off. When we finally had to put her in nursing home hospice care she would never let the toy dog go. When she passed she hugged the dog to her, smiled and closed her eyes. The point is we never know what our loved ones are going through in their minds. All we can do is love them like they did when we were born. God bless, peace and joy.
Helpful Answer (7)
Report
LoveLea Dec 2020
Very touching story. My mom is in the late stage of dementia and cries, moans, and whimpers every day, mostly during sundowning. She is the mother of 10 children, whom she cherish. Unfortunately, she thinks she’s still a young mother with lots of little ones at her knee. We’ve purchased her two lifelike baby dolls that she talks to and holds. Nowadays, they make dolls look extremely real, so she believes these 2 babies were left by their mother for her to care for. “Delores” and “Sue” have become part of our family. Although my mom is on Lorazapan, it doesn’t really calm her, but her hospice nurse mentioned CBD tea as a possible remedy to calm her. Did you find it effective?
(1)
Report
Imho, a medication check is in order for the mother. The caregiver must require sleep, else she falls faint and ill and is good to no one. Prayers sent.
Helpful Answer (0)
Report

My Mom is very needy too. Being that caregivers are expensive, we decided to get one for only five hours a day, five days a week. This has made a tremendous difference for my burnout. That short amount of time keeps my Mom so busy being entertained, that she no longer thinks of needing me. It is worth a million dollars to me.
Helpful Answer (3)
Report

While you are deciding on how to manage this long term, you might want to consider a camera. Sis can check in on your mom to see what is going on when she hears her call out. Some would allow her to speak to her mom without actually going to her.
You could actually take a shift and watch your mom while sis tries to get some rest or has an important call. You can call sis should you think mom needs her.
My cousin did this when she and her parents had Covid. She was sleep deprived and so exhausted with the Covid. Her dad would sometimes get up to go to the bathroom (only he wouldn’t be in the bathroom) so her sister would call her when dad started to get up. It was a desperate time for them. No caregivers would come into a Covid house. The cameras helped.
Helpful Answer (1)
Report

Get the in home care started again with all the extra precautions. Sanitation station at the front door with gloves, masks, sanitizer and thermometer. These folks are having to take all these precautions for all the people they visit and I would probably feel safer with them coming into the home than most family members.

Your sister does need help. Talk to her about accepting the help again. Even more than previously if finances allow
Helpful Answer (2)
Report

Assess medication needs with MD. Unfortunately, this may be all that could help.
It would give all concerned some rest and peace of mind.
Sleep is so important for a caregiver already stressed out with responsibilities (we know). This is a difficult situation to be in.
"Being" in a consciousness of compassion will help / support all involved.
Helpful Answer (1)
Report

I am in your sisters position and understand her burnout. I do have help for 4 hours a day and the other 20 are on me because I live the closest to my mother. I have had to quit my job and my husband lives a bachelor's life because I also sleep at my mother's house to care for her at night It has been so easy for my two sisters to find reasons why they can't share the burden of caregiving. Jobs, kids, distance etc. All good reasons to avoid the truth of a situation. But siblings need to share caregiving responsibilities. I turned my life upside down to be a caregiver while my siblings found excuses why they can't help. Your sister and mother need help. Step up. You must make the sacrifices you need to share the caregiving of your mother. This post is directed to all siblings who rely on one sister or brother to carry the burden of an aging parents care. You are in this together. No more excuses please
Helpful Answer (11)
Report

My wife takes two prescriptions, both together at two times each day. Check with your Dr. to see if your meds are enough to keep her calm. My wife gets extra meds in the evening to allow her to sleep all night... your mom will benefit from the increase in meds and you will, too...
Helpful Answer (4)
Report

All the answers here are good ones. Your sister can't do it alone and bringing in some homecare workers will help. I'll let you in on a bit of a secret about your mom's meds. When people become elderly the doctors don't like to prescribe anti-anxiety medication like Xanax or Lorazepam for them because they claim there's a fall risk. Instead they prescribe drugs that will make a person nearly catatonic to the point where they can't even tell you they need to go to the bathroom. You can find a doctor who will give her these medications to take as needed if you insist on it. As for the night time. She needs a prescription sleep aid. Nothing else is going to help for that. Put a diaper on her at bedtime. This will certainly help when it's time for the AM care of getting her up and ready for the day. As for someone having to be in the same room with her 24 hours a day, that's tough. Elderly people with dementia often regress back into being like a baby. Sometimes you have to let a baby cry for a while. Don't go rushing in every time she starts up during the day. It will be good for her because it will work off some energy and make her tired. Then keep her up during the day. Do these things and give her a sleeping med at night and your sister will sleep soundly.
Helpful Answer (2)
Report

My 86 yr old Dad has dementia and lives in his own home with 24 7 Caregivers.

It helps if someone is in the same room. But day znd night unless he is sleeping. He'll constantly and you what do I do now, say I'm hungry and want something to eat. He isn't on any meds but I do have them give him an natural over the counter pill to help him sleep called melatonin to help.

My suggestion is try to keep your mom awake more so by night she's more apt to be tired enough to fall asleep.

Also, I would get her off tge pills that dope her up where you can't let it be known that you have to go to the potty.

Your Sister can't do it alone! Even with the virus, she still needs to hire Caregivers. Just make sure they don't also work in Nursing Homes and that they wear masks and stay their distance whenever possible.

Your sister should also install a camera in the main rooms the mom is in. I used Nest Cameraso which are pretty easy to install and hook up and now I'm able to check in on my Dad 24 7 with my Cell phone or Computer.

TRyan leaving a light or night light on at night, yry playing soothing music, try leaving the TV on for company, try getting your mom a lap animal real or stuffed to pet.

Prayers
Helpful Answer (2)
Report
LoopyLoo Dec 2020
Anti-anxiety meds are not “pills that dope her up” and should not be discontinued without her doctor’s approval.

There are numerous options with depression and anxiety meds these days. It’s trial and error sometimes to find one that works with the least amount of side effects. Inform her doctors about the problem and they can prescribe something else.
(3)
Report
I feel for your sister it is a huge burden to bear alone. Her own health is at risk. Huge. Where I live we have a home visit by doctors and perhaps she has something medical that has increased her anxiety. An UTI comes to mind.
It could be also depression perhaps like my father, she can remember clips of the news and recalls bits and pieces and they ruminate. No more news. Just funny movies. Censor her TV. Perhaps she knows she will be dying soon and like my mother did ...and becomes despondent. Despair hit her like a ton of bricks. I lost both parents within 2 years of one another. My dad had Dementia and in his last two years suffered brain stokes no longer able to walk he was in diapers and felt ashamed each time he had a bowel movement. Your sister needs relief. Your sister will need someone to come into the bubble with her. Either paid home care or a relative. Willingly without rancor. Someone needs to get a doctor to test your mom for an UTI. It might rule out some other cause for her confusion and anxiety. . This might be the start of the end. My unpopular opinion is...that no way in God's green earth should a senior be put into a home during this pandemic. Where I live they won't let you in frequently enough. They decline and die faster. You need to get tested each time you do visit and get a weekly visit only. Only one person gets to visit no one else can take that person's place on different days. My great aunt died in a home this year and she was frightened by all the masked people around her. The stress was unbearable for her. She too had dementia. Your sister might get relief from not having the work and stress at home but she might later on go through a depression from not having been next to her mother in her last hours. Where I live they put a morphine pump on our mother to help with her pain and I was next to her. Your mom needs a new medicine ..a new caregiver and your sister needs to get out of the house and get fresh air daily not just work ..people need to pull resources together and pay for the home care from private organizations. If your mother is going into a "palliative" stage your doctor might be able to get you a night nurse. I hope that you can get more help in and wish you well. Post mom's dying my sister who lived with her said "I wish she were here and that I rather have her yelling at me all day than to not have her here at qll".
Helpful Answer (3)
Report

So sorry for you and your Mom and family. Some of the responses suggest caregivers. There may be most companies would not provide caregivers due to Covid, but recently I interviewed 4 companies as I was having complete shoulder replacement and no skilled nursing allowed by Medicare. All 3 companies would be able to provide caregivers to your Mom. Expensive? Yes. Out of my own pocket. But, what was the alternative? No one else to help me put my sling back on. Or help me bathe, or grocery shop when my stash ran out, or take me to the doctor for the next visit. They were here 2 hours in am and 2 in pm and longer if needed. Could have had overnight but too expensive.

Here are 4 companies who provide caregiving services, 24 hour or whatever arrangement you need;
A Place at Home (a subsidiary of A Place for Mom); Home Instead, Visiting Angels, Seniors Helpers.

Also, from experience, if your Mom is that far along with dementia, sounds like she should be in assisted living. I don't want you to feel like I have a hard heart. I went through 10 years of my husband, the last 3 were probably the worst, with him grabbing the house key and put it in the car ignition when I was busy doing what housewives do. another time, walking out of the house and crossing 6-lane boulevard (thank God on a Sunday). When our loved one starts this kind of stuff, and your Mom's cry out is because she is scared, it's time to rethink a better way to care for her. Assisted Living is better than all of you becoming overwhelmed over her need for assurance you all there for her. She doesn't know you are in the next room. She is lonely and is crying for assurance she is not alone, and companionship. And what you are going through with bathroom situation, it is best for her to be Assisted Living or Memory Care. Please consider for you and your family's sake.
Helpful Answer (3)
Report
BurntCaregiver Dec 2020
Never deal with an agency if you don't absolutely have to. Advertise and hire a private pay CNA to work for you. There's plenty of profiles for them on sites and their references and back round check can be done by you as strictly as you want to do it. Even if you pay a private CNA well ($20 to $25 an hour) it's still far cheaper than any agency.
(2)
Report
Your sister needs other people to help. Nobody can do 24/7 care without experiencing personal problems since they never get adequate rest. Talk to a home health agency about getting a few caregivers that will be there consistently for 12 hour shifts - have your sister decide when would be the best times - to care for mom while she works and rests. Of course, sister should insist that the caregivers wear facemasks, wash their hands frequently, and clean surfaces frequently. When COVID vaccines are available, only those with vaccines should care for mom. Please make sure your mother gets her anti-anxiety medications in the evening to help her sleep throughout the night.
Helpful Answer (3)
Report

Employ the services of nursing assistant, “Visiting Angels,” Your poor sister must be exhausted, and is putting her own health at risk. Have you considered placing your mom in a skilled nursing facility?
Helpful Answer (6)
Report
BurntCaregiver Dec 2020
Don't use an agency. These places will hire anyone. They claim that all of their CNA's get special training and all sorts of things but they don't. Use an online caregiver site where you view aides profiles and contact them yourself. You check their references yourself and you can insist that they bring their own completed criminal back round check. Online is the place to find good CNA's. Not agencies. The old-school CNA's like myself who know how to deal with every situation in a home work for ourselves and it's private cases only. Agency pay is a joke and the aides who work for one are either just starting out and need to get experience, or they're people who have no idea what they're doing. Hire private. You get better people and it's cheaper.
(1)
Report
I would have your sister speak with the doctor about a better sleeping pill for mom. Keeping her on a schedule will help. Making sure she has a regular bedtime routine also is very good.
Check into other options, if needed. There are long term care facilities out there. There is help, even in a pandemic.
But first speak to her doctor about better medicine.
Helpful Answer (2)
Report

Kuddos to your sister. Taking care of someone with dementia is not easy.
Is it possible that you or other family members can relieve your sister?
Helpful Answer (4)
Report

This is so unfair to your sister. Sleep deprivation is a form of torture.

Time to look into your mother going into a facility.
Helpful Answer (9)
Report

Are you sure it is needy?

She has a disease that causes her anxiety. Check with the doc about meds that may help calm her. She is frightened, doesn't know where she is and needs love, patience and reassurance.

Check into memory care facilities for her. Get sis a break, somehow. Go to visit while sis takes a vacation. What can you do to help?
Helpful Answer (4)
Report

Does she have a neurologist? If not , perhaps PCP can prescribe a medication to calm her down, It don’t get any easier, my friend.
Hugs 🤗
Helpful Answer (6)
Report

My mom called my name and another phrase over and over, I'm not sure she even realized she was doing it. Tell your sister she has to mentally turn it off, wearing ear plugs can help - I'm serious about that, the little foam ones from the drug store won't block it completely but can turn down the volume when your nerves are beyond frayed. Then talk to the doctor about something to help your mother sleep through the night, for us mirtazapine was a miracle drug that not only gifted us with restful sleep it helped my mom be less needy and more herself through the day. Sister needs to make sure the doctor understands that her need for restful sleep is the priority because she can't continue as a caregiver without it.

As for the zombie effect of some drugs - often that wears off as the body becomes adjusted or the dose is changed, she needs to give everything a fair trial (several weeks) before dismissing it.
Helpful Answer (6)
Report
Krisargent Dec 2020
Ear plugs are good. I use music as therapy, so when Dad has his TV or radio up high I wear headphones. When he says something hateful or absurd, I use silence. After awhile he realizes he is not triggering me and he changes to something else I will respond to. But it is SO hard to keep quiet some times...
(7)
Report
P. S. Check out this article another member was kind enough to post on the subject

https://www.aplaceformom.com/caregiver-resources/articles/health-risks-for-dementia-caregivers?utm_source=Newsletter&utm_medium=Email&utm_campaign=20201210&utm_term=USNewsletter&mkt_tok=eyJpIjoiWkdNellqZ3dZbUl4TVdGaiIsInQiOiJ2ZkRcL0kzMW82MWlYb3NOR2M2MEtLeUpUSHg1UkRJdzhQSGhVUjNwcUYwZXZ5TTA1UnYxTEVMRXh6bkJsSFpaY2lrQ1F5NmVWcnRSMzhyamZ1bmI5ZXVoeFhjSzNjTHczUndtXC9HQzEzdWJBYk0waDR4QTVPeXFTUnpNUzB4UithIn0%3D
Helpful Answer (3)
Report
Krisargent Dec 2020
That is so right on. I checked a mental box next to every one of the six risks. I've got them all to one degree or another.
Thank you for the link.
(4)
Report
See 1 more reply
You consider placing her in a Memory Care Assisted Living community where she will get care 24/7 by people who work in shifts to ensure there is round the clock care. One person cannot be expected to deal with late stage dementia issues of this caliber. It's unfair to both parties. At the very least, caregivers need to be rehired in the home, especially for the night shift, if your mother is not placed in professional care.

My mother is almost 94, moderate dementia, incontinent, sleepless for the most part, and in constant need of some type of care, medication, attention or companionship which she gets at her Memory Care Assisted Living community. She is never alone between having 12 caregivers and 22 other residents to visit with every day, plus the visits and calls she gets from family. Her doctor visits weekly and changes her medication as needed. There is no way on earth I'd be able to handle her in my home.....it would be literally impossible. Nobody should expect such a thing of herself or of another, either, because it's just TOO MUCH for one human being to handle.

Wishing your sister the best of luck taking care of HERSELF in addition to figuring out her mother's needs.
Helpful Answer (14)
Report

This question has been closed for answers. Ask a New Question.
Ask a Question
Subscribe to
Our Newsletter