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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 :(

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Yes. Whatever keeps her calm. The truth won’t do her any good. You need a good long time to heal and recover. Don’t sell yourself short on that. She needs time to acclimate. There seems to be a phase where they ask a lot of questions but it passes. My mom asked about the entire inventory of a house she had moved out of 10 years prior. I told her everything was in storage and that “thing” was in the back - I know exactly what box - and I’ll try to get there soon. That worked quite well. Take care of yourself during this time and do not listen to the critical people saying what you ought to do or should have done. If they aren’t giving their time or money, they can go jump. Dementia behaviors are not a blessing.
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Sendhelp Apr 2020
Hi Sandwich, good to see you here.
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I am sorry that you lost your son. That loss must be traumatic. It must be very difficult to handling the grief and your mom as well. I don't see where "the house isn't ready" is a lie - since it is not ready for her. I hope you are recovering from the surgery since we all have to stay in. You are so right - you need a break.

Dealing with dementia is filled with so many ups and downs. You know you've done your best and if you need to make choices to make her as safe as you can - do it! Take time during this "staying in the house" time to relax. Good luck.
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It's tough I know. Mom is in a NH after a hospital stay and a few days on a respirator (we said no but dr didn’t get the message). She was in AL and doing OK but now is very confused and will probably never get back to where she was mentally. At age 93 any hospital stay is bad for mental health let alone now with no visitors allowed.

I visit her most days and we sit by a window and talk on the phone. At first she would cry when she saw me but that has stopped. Each time I tell her it will be a few more weeks before she can go home, blaming it on the virus. This might be her permanent home now.

For myself, we did not give her back her cell phone and she has not asked for it. She was calling several times a day with complaints and nits about other residents or staff. Calling late at night with weird requests and comments. So it’s been a relief for me not to have to keep fielding those calls.

So yes, keep coming up with excuses for your mom and don’t feel guilty about it. She is safe and cared for by lots of people. They might not all be the best, but most of them are excellent, caring professionals.
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Our cousin had Lewy Body Dementia and has three children. He would call my husband and ask him to come and take him home. When my husband arrived he would talk with him or take him for a drive. We helped out so the kids could work during the day as they took turns at night staying with him and his wife.

I am now taking care of my husband and I have to remember over and over "I am dealing with an illness." "I am dealing with an illness." As far as your mom not being the Mom you needed before the dementia - do yourself a favor and forgive her. You will feel so much better.

Every person has faults and those closest to us usually sees them. My mom killed herself and left us 4 kids with an alcoholic dad. I didn't find out until years later as a teenager. I just couldn't believe she'ld left us with him. I also couldn't believe he didn't tell the hospital that she had swallowed all those aspirins.

So, I dealt with the pain by trying to take my own life. I lived with family in another state for six months and during that time my dad went into the hospital, quit drinking and straightened up his act.

Before I went home I understood the pain my Mom went through. I also understood what alcohol can do and the pain and guilt he lived with. I chose to forgive them both.

Now, my mind is flooded with good memories and the pain is gone. I know God tells us "Forgive others and I will forgive you." God also provides comfort and a peace that no one can take from you.

Your loss is enormous and you need to mourn the loss of your mom as well. The virus will work in your favor as you must isolate. You have a lot of support on this site. Continue to use it.
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PowerOf3 Apr 2020
I agree, I think it’s best you accept the apology you will never get. I’m sad your relationship was of hurt, but you will feel better if you can forgive (for your sake) . It’s best you take care of yourself while you are postop...you are still alive and we want you to stay healthy. You cannot control the illness, you cannot control the shelter in place order. You did a damn good job getting her setup in time for your surgery, can you find peace that you accomplished that? That is a lot, an impossible feat for most. Remember you made this decision to place her and she is placed and being cared for... it’s time you give yourself a break after a decade. A decade she will remember very little of if any. I don’t suggest lying is an answer but in these cases I would consider it pacification tactics.
i think sometimes when that “call or visit” is in order, the longer people go without doing it the harder it becomes BUT she has memory loss. There’s no harm in manipulating the situation and pacifying her... for instance “ mom we spoke a day ago, I’m on bed rest remember?” You’ll probably repeat yourself depending on her condition and the staff will normally also pacify their patients also, “ yes Mrs. Smith they were here earlier this week/ oh yes you spoke with your kids this week over the phone” it’s harder on us than them in reality. The staff is there, trained to care for her physically and mentally so let them do their job. You need to rest and heal and get a break after 10 years and YES YOU EARNED IT!!!
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You've done everything exactly right for her, now start focusing on yourself!
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Please get some help and even therapy for yourself. Talk to a social worker about your mother and yourself and your feelings about her. You have reasons to be grieving and you need some time to take care of yourself. I'm surprised that the nursing home would even let you visit during this time of coronavirus. My mother's home has not allowed visitors for a few weeks.
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Dementia is such a squirrely thing. They forget more then they are able to remember. I would stick to the story that the house isn't ready for her to go back to. Change the subject to something she likes to talk about. When she talks about going back home, say it isn't ready and change the subject again. I know it sounds like you are lying to her but your reality is avoiding an argument and keeping her calm.
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Frances73 Apr 2020
That's funny, when I talk to my mom and she starts going to the dark side I practice what I call"Squirrel," distracting her by changing the subject.
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So very exhausted, I am so sorry for everything you have been through. Yes, by all means, keep lying to her and tell her the house isn't ready yet. It should be ready next week. Don't feel guilty!! You have been through so much!! Please don't feel guilty about anything!!
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Procrastinate with the answer.
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First, you may now be unable to visit your Mom because of the pandemic, but you must call her. Tell her she is being cared for and she is there because you love her and want her to be safe. Make those calls regular and when the quarantine is lifted, visit her and tell her you love her, but she has to remain at the NH for her her safety.

My condolences on the loss of your son.
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I say yes!! Don't ever bring it up, but if she does, keep telling her it will be ready next week. I got my mom moved out of her subleased condo, into a NH in 2013 by getting her landlord to say that he is selling it, she has to move. During the move, her car didn't make it to the new place. Oops! She asked constantly. I said ask my brother. He said to ask me. In fact she STILL asks where her car is, she wants it! For 3 years it was right downstairs in her parking spot. I finally sold it in 2016.

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.
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By the way: I brought a raspberry tart and chocolate cake to my wife today—and avocados and one our wedding pictures. And a deck of cards
Oh well! Do our Best
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Accepting a spouse entering a nursing home/long term institutionalization is a long process as I learned after speaking to many who have experienced this adversity. We learn from each other. The nurses and social workers deceived my wife in letting her believe she was in respite care. They realized I could not handle it all anymore as I was burned out by the incessantly requirements of caregiving. While I still am sad constantly I have begun to take hold of peaceful situations seized during this extra time I have that had for the past year been spent inside visiting the nursing home. Tomorrow I will volunteer on a cattle farm for spring chores.
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
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disgustedtoo Apr 2020
Hard for all of us during this lock down, but your post is just so sad... Hoping for the best for both of you - although it isn't the same, at least you can "visit" through the window. Mom's windows face an interior garden, no way to get into it without entering the facility, and she can't hear on the phone, so no calls either.

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!)
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SoVeryExhausted - SoHappyToHear! ;D

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.
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I had groceries delivered to the NH today. Well her idea of groceries. Chocolate, more chocolate, Pringles and diet coke. I called and spoke with her. She was very pleasant. Tickled to get the snacks and was busy watching TV. I told her that once this *flu* was over I could come and hang out with her. She thought that sounded great. Not a word about going home. Nothing. Strange. I think the dementia has progressed to the point that she thinks the NH is her house. This pleasant woman on the other end of the phone resembled nothing of the woman I have been dealing with.
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disgustedtoo Apr 2020
Sounds great! At least she enjoyed the "gifts"!

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.)
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My God, you have so much on your plate. I think the few words here should answer your question: "The DX is dementia." It is very obvious she has dementia and that alone, coupled with all of the incidents and personality, leave you with NO choice but to do exactly what you are doing - put her into a facility. You cannot continue to carry these burdens and you will be destroyed. You must do this - now. She may rebel and carry on - who wouldn't. But there is no reason for you to feel guilty. Blame it on the doctors or someone like that. Be tough and firm and ell her you are not well and you need a respite. Tell her she will be there until you "return" but she won't know it is permanent. Make the move and have someone with you to help handle her. Perhaps a pastor or priest or doctor, someone in 'authority' that she may listen to and if she doesn't, so what? She has no choice. If you don't do this and ignore her outburst, it will do great harm to you. Don't let her get away with that.
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disgustedtoo Apr 2020
You said: "...put her into a facility. You cannot continue to carry these burdens and you will be destroyed. You must do this - now."

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!)
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CaringHasValue - I looked back at your answers to other questions and agree 100% with your father that it's you, not him, who is struggling with accepting "this may mean it’s time for him to go". Your answer is filled with anger. I get that you are working through issues yourself but that does not justify spewing venom onto others.
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disgustedtoo Apr 2020
Not just spewing venom, but garbage too. I replied to a different comment, but it seems to just be a copy/paste with maybe a little editing... GARBAGE. If putting someone in a care place, whatever you want to call it, is a death sentence, then it must be the same as the legal death sentence, because my mother is now into year FOUR at MC, age 96.5 and still going (like my 21 yo kitty with dementia... EveryReady Bunnies!)

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.
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Facts are important. But "peer reviewed" publication that "social isolation" is an actual cause of a physiological condition like Alzheimers is highly suspect. Who were these "peers" anyway? It is also irresponsible to predict, without a bit of first-hand medical knowledge, that anyone will die "within months". The course of a disease like Alzheimers is somewhat variable, among individuals.
Death may be certain, but the pace of the disease is not.
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Countrymouse Apr 2020
"Somewhat" variable?!

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!
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CONTEXT is everything- and so is empathy, I didn’t hear a single word about her mother’s experiences.

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..
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NYDaughterInLaw Apr 2020
I looked back at your answers to other questions and agree 100% with your father that it's you, not him, who is struggling with accepting "this may mean it’s time for him to go". The repost of your answer is filled with anger. I get that you are working through issues yourself but that does not justify spewing venom onto others.
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Repost on main commentary:
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.
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NYDaughterInLaw Apr 2020
I looked back at your answers to other questions and agree 100% with your father that it's you, not him, who is struggling with accepting "this may mean it’s time for him to go". Your answer is filled with anger. I get that you are working through issues yourself but that does not justify spewing venom onto others.
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Yes, you keep lying to her until she is no longer on this Earth. And don't feel one bit bad about it either because you matter. When you do finally talk to her, as soon as she says something that triggers you, you tell another lie "Oh mom, someone's at the door. Gotta go. Love you. Bye."
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SVE,
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!
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Dementia or not you have the perfect truth right now providing it’s true in your state, you aren’t allowed in the place she’s living and she isn’t allowed out for everyone’s protection. You and she both are in the higher risk group on top of that so really shouldn’t be leaving your respective residents’. Maybe even thrown in what perfect timing that this is when her house was being fumigated because she is in the perfect place to have the help/ are she needs while sheltering in place. I suppose it could be why the fumigation is taking longer in the future when the lock down is lifted too but this might be a really good time to acclimate her to the new normal. “It’s so nice for me knowing you are cared for and in a safe place maybe you should consider staying even after this lock down is over”. You, your family, your brother and his family could get into a routine of visiting with her virtually so that when visiting is allowed again you are already in a routine that makes it possible for you to visit virtually 60-80% of the time if you want and still be in touch with her regularly for both your piece of mind.

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!
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YES...The roof leaks, the termites are back, the water pipe broke, the street is under repair, the sky is falling!!
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Your last 4 words say it all - "I need a break" Take the time and give yourself a permanent break. Your mother may not like it, but you deserve better. Tell her straight out - giving her hope is somewhat cruel - and deal with the fallout without feeling guilty or getting trapped. It is what it is, and all the screaming and guilt-tripping she does is not necessary, but be prepared for it!
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CaringHasValue Apr 2020
Not sure if I agree:
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.
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My mother used to tell my dad that she would take him home when the doctors said he could go home. She knew he never would. It puts the responsibility back on the doctors and off you. Good luck.
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I am ABSOLUTELY COMMITTED to the belief that when you are a caregiver, your first goal is SAFETY, the second is MEETING PHYSICAL NEEDS, and the third is SECURITY, PEACE , AND EMOTIONAL COMFORT.

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!!!!!
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SoVeryExhausted Apr 2020
Thank you so much. Xo
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We have had this with my mother. She has Lewy Body dementia and she sees people who aren't there too.
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!
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I should tell her *she's* "not ready." For the moment. Just for the time being. There's a big health emergency on. Best to be on the safe side. Just for now.

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.
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SoVeryExhausted Apr 2020
Lol. Thank you. And yes the manipulation and guilt trip was not lost on me.
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Here is a list...
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.
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kdcm1011 Apr 2020
We would just tell our mom the furnace was STILL being repaired & leave it at that. Eventually she stopped asking.
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