A quick background.
My oldest son was murdered and the trial wrapped up in September 2019 (1 1/2 yrs) we are almost done settling his estate.
My step son is battling stage 4 colon cancer.
I work a lot of hours. I have ulcerative colitis which has been in a non stop flare.
My brother lives out of state and has never helped with anything.
The last 2 yrs I have had caregivers in my moms home 4-5 hours a day.
Her health and mental capacity has diminished a lot in the last 6 months.
She started talking about all the people in the house that weren't there. Refusing to change and cleanup after having accidents.
A caregiver caught her going out the front door with her purse. She told the caregiver she had an appt. But couldn't remember where or for what?
I tricked her into an appt with a neurologist saying it was a yearly Medicare screening (thank you to those here that gave me the idea)
She failed all questions. She said the year was 2095 and her husband died over 50 yrs ago (he died in 2007) she couldn't remember what her phone # was (its been the same for 60 yrs) the list goes on and on.
The DX is dementia (surprise)
I was terrified she would get out at night and wander into traffic.
24/7 in home care was not even remotely something we could afford.
I made my brother come from out of state to deal with moving her. I have been so stressed. She will never be voted Mother of the year. She's a narcissist, never told me she loved me.....
Again thanks to you on this forum my brother told her that the house had to be fumigated for termites so she needed to go stay somewhere.
I had found a nice NH. Her room is massive with her own bathroom. As my brother got her out of the house I had movers waiting to move her entire living room and bed to her new place. We got her in just under the wire when the lock downs went into effect. Its been 2 weeks. I haven't contacted her mostly to save my sanity. I haven't had a break in 10 yrs and the last 2 have been brutal. Today she had the NH call my brother. She said she was missing me (insert extreme guilt) she said to my brother * I'm not in my home* he told her again her house was being sprayed and wasn't safe to go in.
I need to somehow prepare for talking to her. I'm not a monster I don't want her feeling alone. My health is more important right now.
Do I just keep telling her the house isn't ready? She's never going back there. Her dementia is to the point if you tell her something happened she believes it.
I also had kidney surgery 2 weeks ago. I've lost the last 10 yrs dealing with her nonstop. I'm in my 60's I need a break :(
No guilt, let her talk to your brother for a few weeks.
I hope you feel better soon.
Great big warm hug!
Use the next few weeks to look after yourself, try to get your own health under control, support your step son and try to relax.
It’s so hard to be a caregiver. Especially dealing with the loss of your son. Be a caregiver to yourself right now.
My oldest daughter had UC which turned into full blown Chron’s disease. I feel for you. The flare ups are miserable. My daughter is always in and out of the hospital with complications.
You have had the worst of times and you need time just for you however you want to spend your time. It’s your turn to breathe. Please do not feel guilty about not going to see your mom.
You can’t visit right now due to coronavirus. Your mom can wait. You can’t run on empty. This is your time to refuel. You are grieving. Mourn the loss of your son.
Take care 💗. Be safe. We care.
Good luck to you too xo
You can't help her about feeling alone. She would feel that way even if you called her 3x a day.
You're important! Take care of YOU right now. You deserve and need this time to heal mentally and physically.
The house is not yet ready.
They finished spraying but the fumes are still there we have to wait.
The fumes are gone but some walls were damaged they need to be repaired.
When they were repairing the wall they found a leak in the roof, that needs to be fixed.
They finished the roof but the ceiling needs to be fixed.
The walls and ceiling need to be painted.
And she is not going to understand or remember any of this. She just wants to be reassured that things are going to be alright.
Do what needs to be done to get the items out of the house and the house ready to sell if that is the plan.
Many people will say they "want to go home" I have read what they mean is they want to go back to when they felt safe, when the felt well and in control. Reassure her that she is safe and you and your siblings will take care of her and make sure she is safe and cared for.
You should be able to spin that one out indefinitely.
But I think you should probably just avoid having any conversations with her that *you* are going to find stressful.
She told the NH to call your brother to call you to say she was missing you, did she?
You don't hear that tinkling clank of a chain being pulled?
You are not a monster, but neither were you born yesterday. Missing my foot. Your mother will be tended and fine (given the circumstances) without your breaking your head over what to tell her. Call her when you're good and ready, and say whatever is least stressful for you.
Recently someone has explained to her that she isn't a temporary patient but she is in a nursing home and will be there permanently. She has not taken it well.
I explained to her that we had tried to get her home, right after her stay in hospital but that we were told we couldn't, which was more or less true, it wasn't feasible. My mother accepted this explanation for the remainder of that visit and went onto another thing to complain about instead.
Generally distraction works for a period. Photographs, video clips of the family, that sort of thing. Changing the subject to more positive stuff works, depending on her mood.
I have found that what you might consider to be a big and lasting issue, may not be as bad as all that. I also think due to her dementia she searches for negative things to discuss. She wouldn't be happy at home either but she is not necessarily unhappy all the time. When I catch her unawares and watch her sitting in the lounge she will be smiling with the others. Good luck!
I am an absolutely FACT BASED HONEST person WHEN I am dealing with an individual who is playing with the same general mental equipment as mine.
IF I am dealing with someone who has been PROFESSIONALLY DIAGNOSED as having dementia/severe memory loss, it’s say whatever you need to say to help them be at PEACE. In your personal situation, YOU NEED AND DESERVE A SENSE OF PEACE AND COMFORT as much as your mother does.
I notice that you are still responding on an emotional level to what she’s saying to you. You CAN’T. What she says now has nothing to do with whatever she said to you BEFORE DEMENTIA. She may say things that she learned in your past, like the way you’d learn to play the clarinet or recite poetry, but her saying them is now a random product f her broken brain, not having to do with a reaction to you or whatever you do.
For kind, conscientious caregivers, this can be an enormous effort to manage, but YOU MUST shift from “she’s saying something about something I did, and maybe I was wrong and I’m a bad person” to “she’s wording with random words coming from a broken brain, and I’m going to stop reacting to what her words are and continue to do the very best I can for her while still honoring the fact that I also deserve respect and self care”.
You don’t have to “prepare” because she will not remember what you say. YES, you are NOT a monster. YES you do deserve to put YOUR well being first.
If you can be comfortable doing so, tell her you love her, tell her you will be sure she is well cared for, tell her you will see her soon, then LEAVE, do something you love to do, and feel comfortable in knowing that you’ve done what was the best you could for both of you.
HUGS!!!!!
1) if she tells her mom straight out, and her mom forgets isn’t it just as cruel?
2) on the other hand, while she seemed to imply her mother would have to be retold she also indicated her mother remembers enough to know her house isn’t ready and she was only supposed to be there temporarily- it doesn’t quite pass logic
3) symptoms of dementia HAVE treatment, even without knowledge of underlying cause. What is her current treatment plan? How has she responded to treatment?
4) dementia itself ISNT a disease “but rather a diagnosis of a collection of symptoms”. The disease/cause doesn’t sound like it has been located yet- does she have a tumor that is causing it? Is it Alzheimer’s? Is this something curable? Treatable? We are missing ANY/ALL context that isn’t about the writer’s own experience and impressions, (and she said her mother was a
narcissist!).
5) it very much sounds like her mother had a single neurology appt, no 2nd opinions or follow ups, and has no treatment plan.
(I acknowledge follow ups can be difficult if the person needs to be tricked to get there. On the other hand if her mother is as forgetful as she says it should be simple enough to tell her *every* appt is a Medicare follow up... The coherency present to require trickery further indicates a coherency consistent with understanding her diagnoses and the need to follow up).
6) symptoms in most cases aren’t constant, and moments of coherency can be built up (assuming someone is there to do it) to help someone seek appropriate treatment.
Facts we DO know:
1) her mother is very likely to die in the next few months.
2) the truth of the first fact is a steady statistic with untreated/improperly treated dementia and completely regardless of covid.
3) the likelihood of her mother’s rapid and inevitable death in the nursing home is far greater than out of a nursing home, regardless of covid
4) her mother’s condition is likely to rapidly worsen in less familiar surroundings with less familiar people
5) covid obviously increases the likelihood of a rapid death and using worldwide data - is virtually guaranteed staying in a nursing home
6) her mother was sentenced to die in a place she doesn’t know, surrounded by people she doesn’t know the moment she signed her into the nursing home.
7) never hearing her mother say ‘I love you’ IS DEFINITELY guaranteed if she isn’t there to hear it.
BOTTOMLINE- it WAS cruel to lie in the first place. It IS CRUEL to imprison someone who has committed no crime. Surviving isn’t living.
If her mother’s parenting style wasn’t a part of the decision making, and she felt truly that the condition was severe enough to support institutionalizing her, she wouldn’t have included the note about her mother’s narcissism.
Most ppl make excuses to rationalize their own selfishness, and it is likely her Mother, just like most human beings rationalized every decision the writer sees as narcissistic (*her* (the mother’s) health “came first” perhaps?). She is also from the generation of “frosty parents are efficient parents”. Based on their ages, her mother would have been receiving advice from every expert, pediatrician, and book that she should be as separate as possible****. Did it go beyond that-was she physically abusive? It wasn’t implied or suggested so I wouldn’t think so
The writer isn’t really wanting to know if she should lie. She isn’t really wanting advice on moving her mother OR even advice on how to help or comfort her mother. The Writer clearly wants us to say it’s ok for her to be selfish in this circumstance. She wouldn’t do that if she didn’t feel guilty.
EVERYONE has extenuating circumstances and caring for someone whether an adult parent or new baby, is NEVER convenient, always exhausting, & always an emotional & economical burden (unless rich). I wouldn’t tell someone to abandon a newborn even under similar circumstance and wouldn’t abandon a parent either.
citations to follow.
I live in a different state from my mom but my brother and I split the day to day caretaking by using the drop in ability of her Echo Shows. Especially when I am the only one checking in every few hours for a few days she forgets I’m not actually physically there and will offer to get me a cup of tea when she decides to get one. Lol, she loves it!
First off WOW!!! Cudos to you!! I don't know many people who wouldn't have lost their minds.
I had a similar situation with my Aunt. Told her her home needed repairs and fumigation so she was going to stay at AFL until it was all done.
After weeks of her calling her friends, Church and me too many times to count on a daily basis, I struggled with the "Big lie".
Was it just giving her false hope?
I finally told her the truth, but it didn't sink in. Finally sat her down with her friends and myself. Collectively we told her again that she was now in her new home.
It seemed to work until the "lockdown ". With the isolation, her mind has reverted back to what was safe, her home!
I have gone back to just agreeing with her or changing the subject.
It's doubtful that your mom is gonna remember if you tell her that she's in a new home.
Best of luck and God bless!
1) if she tells her mom straight out, and her mom forgets isn’t it just as cruel?
2) on the other hand, while she seemed to imply her mother would have to be retold she also indicated her mother remembers enough to know her house isn’t ready and she was only supposed to be there temporarily- it doesn’t quite pass logic
3) symptoms of dementia HAVE treatment, even without knowledge of underlying cause. What is her current treatment plan? How has she responded to treatment?
4) dementia itself ISNT a disease “but rather a diagnosis of a collection of symptoms”. The disease/cause doesn’t sound like it has been located yet- does she have a tumor that is causing it? Is it Alzheimer’s? Is this something curable? Treatable? We are missing ANY/ALL context that isn’t about the writer’s own experience and impressions, (and she said her mother was a
narcissist!).
5) it very much sounds like her mother had a single neurology appt, no 2nd opinions or follow ups, and has no treatment plan.
(I acknowledge follow ups can be difficult if the person needs to be tricked to get there. On the other hand if her mother is as forgetful as she says it should be simple enough to tell her *every* appt is a Medicare follow up... The coherency present to require trickery further indicates a coherency consistent with understanding her diagnoses and the need to follow up).
6) symptoms in most cases aren’t constant, and moments of coherency can be built up (assuming someone is there to do it) to help someone seek appropriate treatment.
Facts we DO know:
1) her mother is very likely to die in the next few months.
2) the truth of the first fact is a steady statistic with untreated/improperly treated dementia and completely regardless of covid.
3) the likelihood of her mother’s rapid and inevitable death in the nursing home is far greater than out of a nursing home, regardless of covid
4) her mother’s condition is likely to rapidly worsen in less familiar surroundings with less familiar people
5) covid obviously increases the likelihood of a rapid death and using worldwide data - is virtually guaranteed staying in a nursing home
6) her mother was sentenced to die in a place she doesn’t know, surrounded by people she doesn’t know the moment she signed her into the nursing home.
7) never hearing her mother say ‘I love you’ IS DEFINITELY guaranteed if she isn’t there to hear it.
BOTTOMLINE- it WAS cruel to lie in the first place. It IS CRUEL to imprison someone who has committed no crime. Surviving isn’t living.
If her mother’s parenting style wasn’t a part of the decision making, and she felt truly that the condition was severe enough to support institutionalizing her, she wouldn’t have included the note about her mother’s narcissism.
Most ppl make excuses to rationalize their own selfishness, and it is likely her Mother, just like most human beings rationalized every decision the writer sees as narcissistic (*her* (the mother’s) health “came first” perhaps?). She is also from the generation of “frosty parents are efficient parents”. Based on their ages, her mother would have been receiving advice from every expert, pediatrician, and book that she should be as separate as possible****. Did it go beyond that-was she physically abusive? It wasn’t implied or suggested so I wouldn’t think so
The writer isn’t really wanting to know if she should lie. She isn’t really wanting advice on moving her mother OR even advice on how to help or comfort her mother. The Writer clearly wants us to say it’s ok for her to be selfish in this circumstance. She wouldn’t do that if she didn’t feel guilty.
EVERYONE has extenuating circumstances and caring for someone whether an adult parent or new baby, is NEVER convenient, always exhausting, & always an emotional & economical burden (unless rich). I wouldn’t tell someone to abandon a newborn even under similar circumstance and wouldn’t abandon a parent either.
citations to follow.
This is a repost of the final comment and citations:
IF her mother is REALLY that forgetful now, it seems like a kindness to tell her she will go home soon, her spouse is alive, and all is well with the world.
HOWEVER, if her mother was really that severely symptomatic, she wouldn’t be wondering about lying. And if she is coherent, she can process and understand:
- the news,
-to understand the threat of covid,
-that she can’t go home w/multiple caregivers potentially exposing her
-the writer doesn’t wNt her to move into her living room (that IS what people do)
-and nothing about that can until the crisis is over.
The Writer CAN start scheduling e-visits for her continued neuro eval to
-begin treatment of her symptoms
-determine underlying condition
-access additional treatment options
The Writer can also talk to her mother. And actually consider her opinion. She’s about to die. It’s a sad but undeniable fact. As an adult who raised at least 2 children, grew up herself a long time ago, and lived her life, she should have a say in how it ends- even if that means someone else is temporarily- and even extraordinarily- inconvenienced.
-CaringHasValue
****parenting: there is an unintentionally humorous book suggesting parent’s should abandon their child (even as a toddler!) alone in a yard AFTER digging holes in it for them to ‘fall in and explore’. And IF you’re “too emotional to leave them unsupervised make a hole in the wall or use a Periscope” - that is copied from a best selling book at the time
***diagnosis: even the basic Medical definition includes some of this same information and I am happy to dig up the multitude of studies on this if you want them-however, you can also find them yourselves quite easily with a google search.
-There are also Peer Reviewed publisher studies on social isolation as a CAUSE of Alzheimer’s. Not just a contributing factor, an outright cause..
Death may be certain, but the pace of the disease is not.
Three to eleven years typically, from diagnosis to death, but up to twenty years is not unknown.
I suppose it's still "within months." 36-240 months.
This gives me the happy thought that my 35th birthday was only "months" ago. I am a babe!
The "sentence" is set by the body/mind/type of dementia. It makes no difference, really, where they live. Some forms of dementia have a much steeper time line, some people decline faster, some don't. We have no way of knowing, and there could be underlying conditions that hasten death as well. My mother has regressed in time, but still carries on. The place she is in is nice, if I needed care, that's where I would want to be! The staff is nice, and they like her. As far as fibbing, lying, whatever, it really doesn't matter what I say to my mother, she forgets it in the blink of an eye! However, some memories are longer term, so she might react badly to telling her truths, like my dad passed away years ago, her mother has been gone 40+ years, etc. She would be devastated if I told her they were gone. Do I have to repeat and/or cover up? Yup. Is it cruel? No. Cruel would be telling her over and over again that they are dead. She REMEMBERS them, but in the past, not current time. She would be hurt if every time she recalls them and asks about them she were told they are dead. LIES are told to hurt people and/or cover your own butt. The fibs we use are done to NOT hurt the person - you have to learn to live in their "reality" and give the kindest most CARING response, even if some consider it lying. This person needs to either live up to their screen name or change it. Caring absolutely has value. This person has neither caring or values. From what you've said (I haven't looked at other posts), it sounds like this person needs to get off this forum and go seek some help.
Did you even READ the original post? She has been moved.
"I had found a nice NH. Her room is massive with her own bathroom. As my brother got her out of the house I had movers waiting to move her entire living room and bed to her new place. We got her in just under the wire when the lock downs went into effect. Its been 2 weeks."
- and that was posted on April 1, THREE DAYS ago, so it has been OVER 2 weeks.
I can't believe you are still posting on this site. This is one of your more benign posts, but still, clearly you don't read and just spew what you think is right. R-E-A-D and try having a little understanding and empathy for others. Dementia is NOT a choice and those who develop it do NOT intentionally do things to irritate, anger, upset or anything else. It is what it is, and THEY can't control or help it. We can only do what we can.
BTW, just changing your screen name doesn't change who you are. It is easy to recognize your signature posts (rants, although some are outright cruel and disturbing!)
Is it possible they might have Rxed something? There are some medications, like anti-anxiety meds, that can take the "edge" off without doping them up. They did use this briefly when we moved mom to MC, only as needed. It was a one time Rx, never refilled (until later, we needed it to tone down the sun-downing she got big time with a UTI!) The smallest dose was just enough to take care of this, but she was still up, about and responsive. Also, many places do recommend at least a 2 weeks hiatus before visiting, primarily/especially for those who are dead-set against moving. In your case it will be a lot longer, due to circumstances!
Enjoy her over the phone while you can. Some people have suggested some kind of Echo thing, audio and possibly video, which would allow you to see/chat with each other. You might consider that, if someone can post the information. Keep the gifts going - she liked getting those! Anything to keep them happy!!! :-)
Question - is this really a NH, or an assisted living memory care?
As to the original question - whatever works, use it! Still being treated, wait for this "flu" to subside, until doc gives the okay, defer to your brother, he is taking care of it, whatever works! That is if she even asks - don't offer info, just respond if she brings it up. Short term memory is usually the first to go, so she will likely forget whatever you did say and she will ask, possibly again and again and again! My mother can repeat the same statements, questions, comments over and over again - usually one has to "move" the conversation onto something else. She also pestered my brother about taking her back to her condo, but never me. I let my 2 brothers do the "move" and stayed away at least 2 weeks. She has never asked me to take her back. Nine months after moving in, that focus changed to their previous home (sold over 25 years ago) and her mother (gone 40+ years!) So, she stepped back a little in time, and has a little more since then, but hasn't mentioned the house in a long long time.
Meanwhile, use this lock down time to take care of yourself and get healing! Worry about visiting later, much later, when we get past all this virus stuff! Work on getting better!!!
Also, try to alternate your "gifts" with cheery greeting cards, letters, magazines, or other little trinkets - unless she is a string bean and can use extra calories, be careful with too many "goodies"! Mom gained 20 # in her first year, mainly due to ice cream bars they offered for dessert... I might bring some little treats now and then, but limit it (and she usually tries to give some back, so I have some too! I make sure we each have a couple.)
I hope your mom will continue to be happy where she's at. And if it takes chocolate and other junk food to keep her happy and keep both you and her from going off the deep end, then I think it's very worth it.
Visits these past 3 weeks are through glass windows with no chance of going for rides together. Mary cries every time I leave...as do I. Constantly working on positivity in meditation and prayer softens the burden.
peace
Enjoy your cattle ranching! Watch out for those cattle hooves! They can break bones in your feet!
(my daughter an I tended a few who went for a walk-about until we could get the police to rouse the owners - I tried, but no response... first trip out I was shoeless and on giving a little kissy noise like you would for a dog, the closest one says Hey! People! and started heading our way... I jumped into the back of my truck, then left daughter - she was over 18 then - with them while I got some good heavy duty boots on!)
Oh well! Do our Best
My mom was also a narcissist who never said she loved me. She was pretty cruel... I used to question why in the world I was working so hard to take care of her. Now that she is non compos mentis, she actually smiles when she sees me and tells me she loves me all the time! Go figure.
Yes your health is more important - she is safe where she is, and everything is taken care of. Now get yourself healthy and happy.
My condolences on the loss of your son.