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Any tips to gently remind dad that a loved one died?
momovig
Posted: Tuesday, July 30, 2019 9:59 AM
Joined: 6/6/2019
Posts: 9


Hi there!  I know you guys will have to helpful tips on ways to either help my dad remember that his Aunt died, or to gently remind him that she died when he brings her up and has forgotten that she died?  My dad, up until his AD diagnosis in February 2019, was the primary caregiver for his aunt (my great aunt), who suffered from (regular) dementia and was in a MC facility.  My aunt's health began to decline right around the time my dad was diagnosed, and after stays at a rehabilitation facility, hospitalization for pneumonia and other issues, and a brief stay at hospice, she passed away in May 2019 at age 88.  My dad naturally did not handle her death very well, as he was very close to her and she was his last older living relative and link to his parents.  

Since her death, there are days when he remembers that she has passed away, but more often than not, he doesn't remember.  As a result, he insists that he needs to return home to go visit his Aunt and take care of her (he is out of state staying with his girlfriend, who is helping to care for my dad while my sister and I figure out a long term care plan for our dad).  Other times, he will text his brother (my uncle) to find out what needs to be done to make sure she can pay for her long term care. When my dad was staying with me, she came up a lot in conversation, and I always told him that she passed.  On a few occasions before he left my house, he insisted on going to the bank to handle some banking for her, even though A) she has passed away and B) he was removed from her account when he started to mismanage her money due to his AD, and became extremely upset at me when I reminded him of same.  He ended up writing himself a note in his planner on a sticky note that she is gone, and also put a reminder in his iPhone (but, of course, he doesn't remember to even look at his planner most days, so that note is effectively useless; he also looks at the reminder in his phone, but it's as if he doesn't see it).  Since he left my house to go to his girlfriend's house, she and I have reminded my dad several times about our aunt when it comes up and generally gets agitated and frustrated, and sometimes downright depressed, and those emotions usually last for the rest of the day.  

This is a frequent source of pain for my dad - I imagine every time we tell him she died, it's like he is hearing it for the first time and starts the grieving process all over again.  Should we keep reminding him or no?  Should we write a more prominent note for him? 


King Boo
Posted: Tuesday, July 30, 2019 10:10 AM
Joined: 1/9/2012
Posts: 3011


Telling him afresh that his aunt has died only creates a repeated cycle of pain for him.  Don't do that.

The best answer is the one that brings the most comfort and deflects the fixation.  Educate the brother to go along.  

"Don't worry about the bill, Dad, you took care of that already."

"Her bill is paid up for the entire year already"

"You are doing such great work for her, you set things up to be perfect for her, the bank pays automatically for her, it's a free service! I like freebies?  Do you know, they were giving out water ice for free today at Rita's?  I love cherry - what's your favorite flavor......."

Reassuring answers, one that hit his buzz points.

 


Rescue mom
Posted: Tuesday, July 30, 2019 10:55 AM
Joined: 10/12/2018
Posts: 799


Stop telling him. His brain is broken. He cannot remember, and it causes pain every time you tell him again. (This is a common problem, if you look through the threads you’ll find a lot about PWDs who can’t remember a LO is long dead). The standard is, don’t keep telling them.

Here’s  where you use little fibs. If he wants to see about her money, tell it’s its been taken care of and everything is fine. 

If he wants to visit, tell him ok, but the car is broken, or ok we’ll go tomorrow, or Ok we’ll go when the weathers better, OK but she’s away and we’ll  go when she gets back, etc..

If he expresses concern about something else, tell him it’s been handled and everything is working well. Then try to change the subject and distract him.

What kingboo said—make up something comforting and then distract them with something else—let’s go for a walk or let’s get a snack. Or look at that (whatever) outside.

As you say, there comes a point when notes are useless. They forget to look, or they can’t comprehend them.


Army_Vet60
Posted: Tuesday, July 30, 2019 11:03 AM
Joined: 6/21/2019
Posts: 334


momovig,

Add me to the list of people advising you not to keep reminding your DF.

Tell him she's not around but without the "she's dead" part.

It's unnecessary grief you're giving him in a repeat cycle.

You're not doing anything immoral by keeping unpleasant truths from him.

The goal is to keep him COMFORTABLE.


NoSiblings
Posted: Tuesday, July 30, 2019 11:10 AM
Joined: 9/3/2016
Posts: 192


My suggestion is to not tell him. It will only bring him repeated grief. My father died this past November. He and my mom were high school sweethearts and married for 70 years. While I did tell my mom when it happened, she wasn't able to remember. She would sometimes ask where he was, and I decided just to tell her he was resting. That satisfied her, and it also prevented the anguish of telling her again for both her and me. Everyone has to make their own decision about issues like this, but my thoughts are that it is ultimately kinder to tell a fib.
harshedbuzz
Posted: Tuesday, July 30, 2019 1:56 PM
Joined: 3/6/2017
Posts: 1581


My sister died in 1994 and dad spent much of stages 5 and 6 confused about whether she was alive or not. He tended to phrase the question as she's dead, isn't she? which felt as if it required a yes or no answer. Early on, some days he knew she'd been sick and passed and other days he was less certain. Over time she might be dead and alive in the same short conversation. A few hours before he died we had a convoluted conversation in which she'd been to visit, was working many hours and was really dead. Schrodinger's Cat comes to mind. 

One thing that sometimes helped get through this was to use the question as a talking point. He'd ask after her and I'd redirect with a story about her- the funny time she forgot all her lines in the school play, or how feisty she was as a preschooler or how pretty she is.
PaniniSandwich
Posted: Tuesday, July 30, 2019 2:24 PM
Joined: 7/1/2017
Posts: 94


I agree with not telling him.  Honestly I would use King Boo's script every time.  I know it's hard but it's the only kind thing you can do for him.  Validate his feelings and change the subject.

My mother is the last living member of her family.  There are many times when she will ask about a different sibling.  I always tell her they are fine and live far away with one of their kids but that they are fine and happy.  Sometimes she will say "I wish I could see them" and I tell her I know that she does but they are too far away to see and they are doing well and then I change the subject.  Validate and change the subject.

It's awful and I am sure you feel bad about lying to him BUT think about it, every time he is told it's the first time he is told, which only causes stress and pain for him. 


momovig
Posted: Tuesday, July 30, 2019 4:12 PM
Joined: 6/6/2019
Posts: 9


Thank you, everyone.  I really am struggling with lying to him - I literally only ever got in trouble growing up for lying, so it's kind of ingrained in my brain to tell my parents the truth.  Also, my sister and I disagree on this point (it's the only thing related to my dad on which we disagree).  She is a PA, so I think she tends to see a lot of this from the clinical perspective and believes he needs to know the truth, however painful.  As I know you guys know, this stinks!
SunnyBeBe
Posted: Tuesday, July 30, 2019 5:37 PM
Joined: 10/9/2014
Posts: 639


I might get some reading resources about dementia and encourage your sister to read it.  One book is entitled The 36 Hour Day.  I would question if it's appropriate to cause his emotional and mental distress for no reason, except to make yourself feel better.  I'd try to put his feelings first.
Suziesb
Posted: Thursday, August 1, 2019 10:03 PM
Joined: 5/22/2018
Posts: 171


Momovig,

I can attest to what all have said here about it truly being a kindness not to tell your dad.

My mom lost her last sibling this Spring, out of a very close knit family of 5 sisters, so she is the last surviving member of her nuclear family. I told her once and once only, the day her sister died.  After that, she forgot. If she does ask me, I won't tell her anymore. It will bring on fresh grief. Why do that to her? She wasn't even able to attend the out of state funeral. I have 2 pictures in her room of all of her sisters together, both as children and as adults, and she doesn't even look at it anymore. 

She has also started to forget that our dad passed away, and they were married 60 years. I don't remind her. It makes her happy to think he's only at work for the day. She has been grieving him so much since he died, I don't need to add to it. Her wish that she expressed to us many times is for her to be able to join him sooner than later. 


mermac
Posted: Friday, August 2, 2019 7:39 AM
Joined: 3/30/2019
Posts: 3


I'm learning a lot from these replies, too so thanks everyone. Just recently, my father starting asking about my brother who died 12 years ago, whether he was at home, etc.. The first time we told him he had died,. He had many questions-how he had died, how we know he had dies, etc.. so I'm really starting to understand now how it would be better to respond. I'm the one who was devastated about lying about selling my Dad's beloved pick-up truck.   One question related to this-I am certain my Dad's sister-90+ years will die sometime soon. Should I take him to the funeral? What have other people done?
harshedbuzz
Posted: Friday, August 2, 2019 8:32 AM
Joined: 3/6/2017
Posts: 1581


mermac wrote:
  One question related to this-I am certain my Dad's sister-90+ years will die sometime soon. Should I take him to the funeral? What have other people done?

That's a tough call to make. For me, it would depend on a number of factors.

Where is he in terms of stages? I might take my own dad in stage 5, but not in stage 6 where he probably wouldn't recall by the next day.

Is it physically easy for the you to get you dad to the funeral? If the funeral is local and dad is good with getting up in ready on time, I might consider it. 


If his sister is a regular part of his life, and he was up to it, I might attempt at least part of the day. If he's OK with crowds, the church service might be an option. 

I'd also consider whether him attending would be a comfort to other family members or a distraction. My dad insisted on attending the visiting hours for his younger brother's best friend. This was a man who he'd known 60+ years and who had been a part of one of dad's golf groups twenty years prior before he moved away in retirement. Dad was stage 5-ish at the time and still cleaned up well physically but his empathy had tanked (everything was about him) and his social filter was almost non-existent. I was skeptical that this was a prudent idea, more so when I got to their house as they were getting ready and dad was acting as if he were going to a celebratory event- like it was great that this guy died so he could see his golf buddies and brother's kids. My mom was a little embarrassed by his behavior at the wake and told him the funeral was just for family. 

I saw this with my late sister's ex-MIL at her husband's funeral, too. She was probably a solid stage 6 at the time and seemed almost oblivious to why she was there.  It was like she forgot her husband of 65 years was dead; her youngest son would walk her up to the open casket from time to time as a prompt be he felt like she didn't recognize that she was at a solemn occasion or that her husband died. I feel like it was still a good call to have her attend. It was important to her kids that she was there and it didn't seem to upset her. 


Army_Vet60
Posted: Friday, August 2, 2019 8:50 AM
Joined: 6/21/2019
Posts: 334


Is your father still able to go out in public and maintain control of his behavior?

If he gets belligerent, physically defiant, hostile, incontinent, in a normal setting, think of what presenting him to a deceased family member that he loved could trigger?

And again, if his short term memory is shot, do you really need to subject him to a pain he won't remember?

The bottom line for a caregiver of a PWD is "Keep them Comfortable."


Agent 99
Posted: Friday, August 2, 2019 11:13 AM
Joined: 6/7/2013
Posts: 2163


I started lying to my mother who does not have dementia while I was caring for my late husband with dementia.  I couldn;t handle the nonhelpul intrusiveness.  Now that I am alone I continue.  I also grew up with strict consequences for not telling the truth.  But I shed that internal punishment, took 50+ years and frankly it is a relief.  If she catches me so be it.  

Dementia exposes that there is more to humanity than living in the black and white.  There’s more grey, green, blue, purple, red, yellow, fuschia, etc.!

On your issue, I agree with all responses but would suggest sending your sister this thread.  You can edit it before forwarding if you want to but there’s nothing like hearing from the caregivers mouths and hearts.


GemsWinner12
Posted: Saturday, August 3, 2019 12:04 PM
Joined: 7/17/2017
Posts: 334


I agree wholeheartedly with all the above posts.  Please review older threads on this topic. Someone new asks about it at least once per week.  

I was instigated to respond because your "know it all" sister sounds like a possible source of future discord when it comes to the management of your loved one's care.  I also have a medical background, but when it came to Alzheimer's, I never told any of my Mom's caregivers that I knew anything. My personal feelings and emotions overcame my training at almost every turn, and I insisted that caregivers treat me just like a layman; count me as having zero knowledge and please help me understand.  I was able to speak with Mom's P.A. and MD in technical terms about her medications, but that's about the extent to which my background helped me.

Your sister could use a little humility and patience on the subject of your Dad's condition. For her own sake, and everyone else's, please ask her to get off of that high horse once in a while, and check out the view from the ground.  


OneofThreeDaughters
Posted: Monday, August 12, 2019 10:43 PM
Joined: 8/12/2019
Posts: 1


I am not convinced that the sister is on a "high horse." There are shades of gray in all of this lying/truth-telling thing. I have a view from the ground, in that my mother has lived with us in the two years since my dad died. Sometimes Mom remembers that he is gone; other times she doesn't. Her memory is terrible, but her reasoning and personality are intact. If she were to catch me in a lie, that would undermine all of my efforts to care for her. And from a selfish standpoint, at least in her current stage, she can move on from the subject of wanting to telephone her husband much faster when I tell her that it's just not possible, as opposed to me deflecting for a few seconds when she knows I haven't addressed her request. For now, I choose truth. Of course I may revisit that if and when things get worse.
sunnydove
Posted: Monday, August 12, 2019 11:48 PM
Joined: 3/9/2018
Posts: 6


mermac,

I wouldn't take him. There will be people coming up to him wanting to comfort him, people crying and sad. It will either confuse him because he doesn't know why (and will need to hear over and over about his sister's death) or upsetting because everyone else is so upset. It's family so they should understand the situation. If you feel it's important for YOU to go, perhaps you can get care for him that day so you can attend.


River Styx
Posted: Tuesday, August 13, 2019 9:00 AM
Joined: 1/30/2019
Posts: 30


I've tried lying to my mom about those who have passed away, but it back fires.  She'll resfus to eat, try to leave the house to go find them, etc.

Instead I gently remind her.  When she wants to delay eating dinner till Dad gets home, I remind her he is having dinner in heaven.  Ditto with her eight siblings who have passed on.  Her response is always, "Oh, that's right.  I forgot."  It helps move her to the next activity.  But, my Mom is extremely tenacious.  It sounds like most people have more success with lying.


Eric L
Posted: Tuesday, August 13, 2019 11:14 AM
Joined: 12/5/2014
Posts: 1045


I think this thread actually has some very good examples of using "whatever answer gives them the most comfort" is the correct answer. For some folks, telling a fib because you don't want to see the pain and anguish of your LO reliving a death over and over is the correct answer. However, if you are able to tell your LO that the person they are asking for has passed and they accept the answer, it is also fine to go that route. By the time that my MIL started looking for dead relatives, she was in a stage that no matter what we told her "we were lying" even if it was the truth. We figured at the point, we may as well lie because the lie was kinder than the truth.

Oneofthreedaughters - Obviously you have found a method that works for you and your mother accepts the answer. That's great! Your post kind of stuck out to me because you were worried about being caught in a lie. I know each person with dementia is kind of different (okay, all different), but I would say that if someone's memory is bad enough that they can't remember a significant event like a LO passing on, she probably won't remember that you lied to her. Like I said, you have a method that works right now so certainly don't change it, but if you do need to change things in the near future, don't get super hung up that you might get caught lying.
 
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