Newbie here. 93 year old mom recently in need of 24/7 care due to becoming a fall risk and mild cognitive decline/dementia. I still have a full house at home with 4 adult kids and husband. 2 oldest have been dealing with their decade long debilitating and untreatable medical conditions, which prevented them from going to high school and/or college, hence them also dealing with anxiety, depression, suicidal thoughts. Mom can no longer understand/realize the effect this has on our family. She has absolutely has no qualms about me taking care of her every need, what effect it might have on me, as if it is totally natural and expected, while my brother gets a free pass on any obligation to help.
Hired a 24/7 care giver in her own home. She has been through 5 now since Thanksgiving, they can’t deal with her bossiness and abuse. She constantly berates me and the caregiver, screams at us, tells us how horrible we are, to the point that I just no longer care what she says and minimize my time with her just to survive (been told I’m going to hell and called a pig, physically shoved and told to shut up many times) but the caregiver wants to leave. However, she can be sweet as pie to everyone else, so it seems she can control her behavior, but she chooses to rip into to me, her caregiver, her sister and my godmother, who avoid talking to her now for their own piece of mind.
Mom refuses a nursing facility, and how could I dare throw her into the street like that, how shameful and embarrassing for me to even consider it. What a horrible person I’ve become.... I am touring a facility and want to take my mom to show her how nice these places can be. I also want to be brutally honest with her and explain the situation, that if she keeps treating the caregiver this way, she will have to move into a facility of her choosing. My question is, is it right to give her this ultimatum, and to point out that she is able to choose how she treats certain people, or is this how dementia works? Is she truly unable to control these angry outbursts ? Are we victims of her abuse also her triggers? It’s embarrassing to say, but I cannot stand being around her, and I have to take her into my home every other weekend to give the caregiver time off. My husband resents her now because of how she treats me, but refusing to let her steal my joy has made me callous towards her.
Should I lay it all out to her? If not, how to I get her to change her behavior?
I can relate to the behavior where she minds her Ps and Qs with some - mom was like that, you don't air dirty laundry! However, if you got her dander up, watch out! When PCP merely said 'it isn't safe for you to live alone', oh did she get nasty! We were trying to keep her in her condo with oversight, initially just a 1hr (minimum for agency) to check she took her meds from a locked dispenser and a sanity check - she didn't need any real hands-on care (diet was an issue for me as she was resorting to packaged foods and microwave meals.) In her case, that lasted only a few months and she refused to let them in. So, dementia may be the underlying cause for mom (still able to control herself some) or it could be other factors.
You do know your mother better than the rest of us. If she wasn't really like this before, it could be the dementia at work. The caregiver, as you described her, is not likely trained for dealing with dementia. In order to stay, she (and you) will have to learn to let mom's verbal assaults roll off. There are methods for redirect, to change where mom's current focus is - sometimes it works, sometimes not so, but one has to try.
Is there a way to install cameras, so that you can monitor the situation? Her accusations might be true, but they might not be. Dementia can distort how she views/reacts to what the caregiver says/does, as you have seen her take you on for no good reason. It is also possible that the caregiver loses her patience with mom when she is being childish (also can be a dementia trait.) This is where understanding the condition and training come in.
IF mom truly wants to see the ALF AND agrees to go, problem solved, mostly! In our case, AL was in mom's plans, until dementia kicked in. She refused to consider moving in with one of us (not a good idea all around anyway) and when AL was mentioned, PAUGH, I wouldn't live in one of those places! However, even if she agrees to move, she might continue this kind of behavior. Is it possible to try getting her off the Xanax? Reading about this med on Wikipedia, it indicates it is for short term use and has many side-effects, some of which may be causing her falls, hostility, drowsiness, death wish and disinhibition (lack of restraint, although it seems somewhat selective, but that could be due to other factors.) 15 years is a long time! She also should not just stop, but rather reduce dosage/usage over some time (work with doc.) There might be other meds that would help, or it might be better to get her off it and see how it goes. Dementia is going to contribute to some behavioral changes, but once off this med you'll have a better idea where she is really at and perhaps the doctor can try something else (seems most/all anti-anxiety are basically the same.)
Also, try to ignore those who put you down, just like you have to learn to ignore mom's "barbs". It is NO ONE ELSE's business why your kids are living at home.
Everyone has there own opinion. In the end, forget about what all us strangers who dont know you or your mother or your living situation says and do the right thing for your mother.
Whats the best thing for your mother? I hate to tell you this sweetie, but YOU know better about your mother and your situation than the 50 comments from strangers.
cool when she begins attacking me. He has to leave the room and ignore her. This is not an easy path. I would recommend going to a support group as well. Most of the memory care facilities have them for relatives of those with dementia. Good luck!
Lately she has been quite lucid and more calm ( maybe the magnesium is helping), and she has told me on several occasions that she is living under great tension because the caregiver yells at her a lot, like right in her face. She is afraid to tick her off, but she can’t take it sometimes. She is acutely aware that her memory is not great, and she is depressed because she feels her life is ending, but she is generally in good health, only BP meds, and anxiety, which seems to be lifelong, most likely PTSD because she grew up in Europe during WW2 and was forced to run to Germany without her parents in her late teens, never to return.
So enlisted my brother, who does nothing and is the golden boy, and therapist sister in law to try to access the situation today. They need to talk to the caregiver about whether or not she plans on staying, whether or not she is capable of letting personal comments roll off, and CALMLY respond to mom’s outbursts of frustration.
I asked mom over the weekend what we should do if caregiver leaves. I mentioned ALF again, told her it was like a hotel, not what she is imagining and she said she wants to go see it. Woohoo!
I know that no solution is perfect, but I really just want her as happy as she can be during her last years. This is all an adjustment for her; in the past year she stopped driving, has fallen, been hospitalized twice, cannot walk without a walker, several Med changes until BP got under control, memory failing, frustration with life, full time live in care since thanksgiving with the realization she cannot live alone. She just wants to die. I’m trying to get her be more positive, to be grateful for what she does have.
She was social before, but now is too tired to go to church. She always said people are her medicine so maybe ALF will be a godsend.
Thanks all for the comments. It helps so much to feel supported.
BTW for the person who said I am a doormat for having my adult kids at home. My two oldest have been dealing with untreatable debilitating conditions. Oldest is suicidal due to a type of headache that is continuous 24/7 since age 20. Absolutely nothing gives him a second of relief. My second son got a virus at 14 that knocked his autonomic nervous system out of whack. He couldn’t stand up without passing out. Spent high schools years bed bound. It’s taking both of them longer to figure out life. Both are working, but without college degrees due to their illnesses, they cannot afford to move out yet. Believe me, they want to be on their own. Because we live together their struggles are a daily issue and it’s heartbreaking for us parents. Our two youngest are in college so they are in and out but not launched. We are a family and do what we can to help each other out. It’s not the life we dreamed, but in some ways, the crosses we must bare make us grow in ways unimaginable, for which we are better people, I hope 🤞.
That being said since she has some dementia maybe you should look into a memory care facility. Both skilled homes and Assisted Living facilities have memory care. Often people with dementia due better in a "memory care" because the staff are trained on how to deal with their special needs, they are usually smaller, usually have the same staff and often times have a higher resident/staff ratio and these units have very regimented schedules which most residents with dementia need.
I would explore memory care first. You must put your family and their needs first. You can't help her if you don't take care of yourself, you will only learn to resent her. It sounds like your family has special needs of their own, put them first, place mom in memory care.
Finally, if you need help finding a place or making a decision on what to do you can hire a Geriatric Care Manager. They can meet with you and also with her and they will coordinate the care so you can step back and take care of your needs as well as your families needs. You can go online to Aging Life Care Association and find a Case Manager.
I hope this information helps, let us know how things work out!
Just have them in the daytime and as long as she is still sleeping at night have just about anyone sleep over there with her, maybe one of your kids and if there was any problems they could call you. This will save you a lot of money and there is no need to pay a professional to watch someone sleep.
You can buy a mat that will ring a bell in the other room as soon as she steps on it like when getting out of bed. This was a god sent for us.
PS. If she has dementia why isnt she on aricept and/or Namenda? This helps usually! Also make sure she doesnt have a UTI.
Someone suggested Seroquel, but that seems to be a high risk of stroke in dementia patients. Ugh. Hate drugs but sometimes they are neede.
We all make mistakes. But, we must learn from our mistakes. Repeating the same thing many times is not recommended. If we have to change our approach to deal with our clients we should not hesitate to do so.
I think Mom could be more compassionate and sensitive than we thought. Do not underestimate our barriers including lack of communication and understanding. Finding a way to communicate with Mom is a must.
Couple of suggestions on meds. Buspar (buspirone) is a lot safer than Xanax. My dad took in in am and pm and really helped. But also a lot of the SSRIs like Zoloft are excellent for anxiety. My dad became a mush calmer and more pleasant man. I believe he has had generalized anxiety disorder his entire life. He also had feelings of inadequacy similar to your mother. I think it’s well worth a try. Know that it takes many weeks for an SSRI to kick in but the Buspar takes effect immediately.
My mom was not verbally abusive before, critical and kind of controlling, yes. Cared more about how I looked than what kind of person I was. Growing up I just remember her always being in the basement sewing beautiful gowns for herself to wear to parties. I mean she looked like a movie star, and she was always in competition with her friends. I had to marry a guy I “looked good with as a couple”, comments on my weight, hairstyle, clothes, how to raise my kids. She’s a perfectionist, always apologizing for a meal she cooked that didn’t quite turn out right. Then of course we would say how delicious it was. Yet, I felt loved, because I was well taken care of, but she never told me she loved me. And NOW she tells me she loves me (twice, but she says “you know I love you”, not just “I love you”) and demands I tell her back. I could go on and on.
So to clarify some items, I have one brother who is not helping with care. I am the POA, all finances are in order. She is begrudgingly paying for her care. She laments spending her hard earned money and it really bothers her. She does not expect me to pay, but worries about running out of money. If we sell her house she will have enough for a decade of caregiving.
I would like to try a mood stabilizer, but she is so sensitive to meds, I am afraid of side effects. Her anxiety is through the roof and she takes Xanax but doesn’t feel it always helps now. I will have to reconsider.
The caregiver is a younger (76 year old) friend of my mom’s who she used to do volunteer work with and who has been a caregiver for 20 years. Advantage is that she speaks my mom’s language and cooks her traditional food, but I think she just doesn’t know how to deal with accusations and outbursts. She rolls her eyes at my mom’s OCD like behavior and takes what she says personally. They were both happy with the arrangement until they started to live together.
So I have enlisted my brother and therapist sister in law to mediate. They are coming Tuesday to talk to each one individually. Hopefully they can clear the air on some issues. Honestly it’s petty stuff. Caregiver asks my mom what she would like for lunch or dinner a couple hours ahead. Mom is frustrated because she doesn’t know what she will want, she doesn’t know what’s in the fridge (apparently caregiver won’t let go in the fridge by herself), she doesn’t know what the caregiver bought. Caregiver allegedly always seems to be eating better than my mom; mom just gets some gross leftovers. Mom tells caregiver to wash her hands, do a better job washing dishes. Mom knows caregiver gets angry and allegedly yells at mom, so she tries to avoid her making her angry, meanwhile caregiver afraid to trigger an episode. Both are on eggshells, both complain to me.
The past caregivers were thought to be temporary while I had was traveling a lot, she hated them all, accusing of lying, stealing, so we went through a few.
Mom felt she can stay on her own, but she fell three times in 2 weeks. So back to the hospital and decision was made she needed permanent 24/7 care, and was too much for me to take on.
I bring mom to my house to spend time with her, give her a change of scenery, get her out of the house, give caregiver time off. She is better emotionally, but will start in on me at least once a weekend about being a different person, so uncaring, no compassion. She says I must be going through the”change” or I’m really sick. When I get her back home she is very agitated and starts in on both me and the caregiver, and she feels we gang up on her, even though she is right. The more I stay away from her , the better.
I think I have to learn to respond to her as well. I’ve already learned to ignore the personal comments. I’ve got other people to take care of too, but I am concerned for her well being.
My mother's sister (my aunt) has so such problem. When my mother acts up and starts getting aggressive with her, my aunt would scream right back and puts mom in her place. Mom behaves much better with my aunt because she knows/remembers my aunt will not put up with her non-sense, Alz or not. I have a harder time getting mom to bathe, drink water, take med, etc. No such problem with my aunt.
Aunt tells mom: "If you don't bathe, you won't get to go out, and I mean it."
Mom: "I'll take a bath now."
Me: (smile)
I suppose if you can be very firm and deliver consequences for bad behavior, then you can get her to comply more.
Equally important is knowing when a person inflicted with dementia can make their own decisions/when to honor those decisions or step in and make the best decisions for them and family.
For 3-1/2 years, I worked with a woman who expressed all her decades (7) of anger at me. I was her care provider. No other family in this state, which really was one sister and they did not get alone well.
I had to learn to give her choices, such as (and this may not be appropriate for your situation):
* Saying "this behavior is unacceptable and inappropriate."
* I will give you xxx (from 10 minutes to the rest of the day and leave for the day) to cool down.
* If (and when and I did need) reinforcements to do something that was in her best interest (when she refused, stomping her feet like a child), I had to call in the social worker. This was in a multi-level senor housing development so I did have ongoing access to professional support there. This client insisted on using a plastic garden chair at her kitchen area / table. She'd 'jump' the chair back to get in or out of it. Some times the chair would get caught in the carpet and she almost fell backwards. I had to get her a new (furniture consignment store) chair. Before I could do that, the social had to come in and assess [after I explained the situation] and tell her that the chair she wants to use/keep is not safe. Client felt 'defeated' with two of us agreeing, and from client's point of view, somewhat ganging up/attacking her position. She fought to the end even with the Hospice social worker and nurse (not wanting overnight care. They convinced her to 'try it out for a week.' I took the first overnight shift; she died the next morning. Before that, she awoke at around 3am and I got up and she said "I'm so glad you're here." She died at 10:30am.
* For other situations that would come up regularly (involving rage and ranting at me), another social worker with decades of experience said I needed to write a contract. I said I did this initially. She said "Oh no, you have to do it for each infraction, each time it occurs. Write it up and explain that it is inappropriate / unacceptable behavior, etc., and state my position and what I will do in the future, should that behavior happen again, and have her sign it. I did this twice in one year (I did not want to write up every little thing). This actually worked - often for 2-4 months to avert the specific unacceptable behavior.
* One needs to get their 'troops' in line / support. Have a clear plan and stick to it. If one wobbles, the person with dementia [may be able to and/or] will see this
I realize it is different working with a family member. However, I do believe all family members need to be considered and the overall needs of the unit when making a decision. Gena.
We have the same problem and she was always like this in past years. The dementia patient was always like this even in younger years. Get some professional help, your family doctor and he can say she can't stay at home and
suggest that she moves into care home. They know how to deal with this type of behaviour, Why are you bringing her home? You don't have to do this!
Go and discuss with doctor and let him do his job, they have medication to calm
her down and not be so hurtful. They can get violent and you do not have to be pushed, shouted at, do something now, get support asap, cause its only going to get worse. Been there done that.
Mother at 93 is having difficulties. Possibly behavorial situation.
Don't explain to her what you are doing. Get her a new gereatric doctor with dementia specialty, to evaluate her. Her incapacity to care for herself mentally and physically warrants professional care 24/7, as you said. An ALF with memory care sounds good. Your husband & family are first, then mother. Your guardianship may be needed. So, an elder attorney will help with this.
She tells people in her mobile home park that I’ve killed 9 people with cars, yes she says cars. and the government is looking for me, and then says I’m in jail and they cut my legs off, and there gonna take her to see me. She claims I’m trying to kill her or poison her. The other day she told my husband I’m drinking heroin.
its some pretty ugly seedy stuff, and even though I know she’s out of her
mind it’s pretty difficult to deal with.
My sister is going on 7 weeks of refusing to take her medication.
ive not been able to get into her house or be around, because in her broken brain I’m the evil one.
i could go on & on but I realize your here for answers to solve your immediate problems.
Just know it’s not you, your the caregiver who is getting disrespected by someone who more then likely has anosognosia.