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Mom and dad are 91 and married 71 yrs. Both have progressive and different forms of dementia. They lived rather independently with my sisters and my help until this past year. Dad having health issues and was just discharged from hospital to rehab. He's not doing well. They tell us he's in failure to thrive and and now has pneumonia. I don't think he has a good prognosis. Mom doesn't understand. She can't remember where he is and why. Every minute we have to explain to her. We see her failing now too. Have no idea how we should tell her or if we should. Do we continue to let her believe he's just in the hospital for ever even if he passes?? If he passes, she will probably lose the will to live and we'll lose her too. Thoughts???

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So, dad is home now under hospice. Mom was just getting to the point she sort of knew he was in hospital or at least not home. And she was adjusting. Now she's confused cos he's home and in a separate room, advice of Hospice.
We felt it's best they be together in the end, but may not have been the best decision. Dad hollers and is quite disruptive much of the time. And this upsets mom and confuses her more. Now mom keeps asking when dad is coming home, so we have keep to tell her he is home and in bed in his room. I think the white lie the best way to going forward. Seeing the confusion and sadness in her face is awful knowing she dont understand and never will. What a terrible way to leave the world. So heartbroken.
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There’s nothing you can do to make your mom understand since she cannot remember everything you tell her. All you can say that your dad is at the end his life and you guys must hold on. Don’t be surprised if your mom would be passing after your dad dies... I’m sorry.
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Cattieangel - it is clear that you understand and pretty much agree with the "fibbing" that is or might be needed. In one reply you said "My sister keeps telling her. She thinks we shouldn't like to her. Mom just gets upset over and over again."

You need to clue her in how much this is hurting your mother. Most people (myself included) do NOT want to lie, but when it becomes so painful for someone who cannot understand or remember, and they have to live through the "truth" over and over, how is that better?

There should be info in this website for how to inform people like your sister. I am sure there are plenty of online sites that have suggestions for how to handle this issue. It may be that nothing will convince your sister, but if mom gets upset over and over, maybe she'll 'get with the program.'

What she does need to understand is the "lie" is done to PROTECT mom from pain and grief, NOT to hurt her! Once she can figure that out, hopefully she will go along.
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I kinda disagree my mom and dad were in nh in Florida my sister had neglected them for years .he died on Xmas day 2015. I was there 3 days later as I got snowed in @ Chicago O’Hara the nh called me and told I had to get there to tell my mom , they don’t understand about snow. Everyone nurses even the social worker all had tears they were married 65 yrs, of course she wanted to see him . My brother had advised there was no hurry so he died alone and was not embombed, funeral director advised not so I could talk her out of it .we but a rush on cremation $$$$ I brought mom home to ohio it took me 10 days to find place for her, meanwhile we had cracked her rib and had pneumonia. Drs advised not to worry they would not release her until I found place . Move ahead my brother had heart attack . My hospice nurse advised tell her . She was sad but did understand. He finally passed on March 23 2017 she cried I think it break her heart again hospice was with me . Brother died on Thursday his funeral was tues about 3 hrs away ,I went came home same night mom was declining but after brothers death it went fast. She passed wed morning . I lost my brother and mother within six days of each other. I am still not over all there deaths I think you have to do what’s in your heart and what the drs advise, in my case hospice . I don’t think you ever get over their deaths. I still cry but I was with her everyday glad I could have that time with, I guess what I am saying we all can only do our best it was all in God’s hands. Bless you all
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When my friends' dad died, and they do have a mother with dementia, they never told her that he died, if she ask they are saying went to the doctor, went to some relatives, went to the summer house etc, she forget for some days, then ask again...They decided do not take a chances to tell her the truth....but i think everybody decide based on specifics.
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Hi Cattie, from reading your post it appears you have it a tad easier to use the, “he’s in a place where he can be taken care of for now”, since he already was physically separated from her by going to rehab. ( that’s a huge step in her being able to handle him being gone) I’m trying to look at the silver lining in a horrible situation. If they lived together and one passed in front of the other, then you’d have a whole different scenario and have to come up with a different strategy. I wish you strength and send you hugs as you and your family continue on this journey.
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My thoughts are that everyone deserves to hear the news of a death of a loved one.
But, they only need to hear it once.

If, with dementia, they forget that someone died, to be told again, day after day that their loved one is dead is causing acute suffering over and over and over.
Can you imagine the pain felt with this new news heard each time?
So, after the initial sharing of the news, deflection, distraction when asked about their loved one.
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I wondered about this with my mom and dad. My mom had dementia due to age and Parkinson's. My dad had cancer that spread to the bone and possibly the brain. At one time I was told by the family physician (who treated both of my parents) that I would likely lose my father before my mother. That was a shocking statement to me.

So I figured that if my dad passed first, I would tell my mom, but I would not keep telling her should she forget. At that point, I planned to just say something like, "Dad hopes to see you soon." It ended up that my mom passed away first. Then at one point my dad actually did forget about my mom's death. It was so hard to remind him that he had been to her funeral and that she was in heaven. He only seemed to forget her death one time, so thankfully we didn't have to keep coming up with a way to not discuss her passing.

Unless someone has dealt with loved ones who have dementia, they can't possibly understand how sad it is to see this happening to the ones they love. I agree that enjoying the time together that you have and letting your mom think your dad is still in the hospital is OK for her mind. Even telling her how much "Dad loves her and hopes to see her soon" is fine.
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hes gone to the store ... or to mail a bill ... or someplace she wont go to go to visit him ... like the hospital. He'll be back in a few minutes.
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So sorry for this, yes let her think he is just in the hospital, Dementia is horrible, and it will just confuse her with the truth.. Make the most of the time you have left.

Best wishes
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Yea it is very difficult. Mom had dementia, stepdad CHF, and age related decline. He was 88 when he passed in October 2016. They had lived separately for about three years because of mom's care needs. Mom knew something was amiss after he passed, did not ask for or about him. Her behaviors became even more difficult and was kicked out of the facility she was in. Went to a smallish care home which was much better for her. She passed eight months later.

Therapeutic fibs are best. My mom, even if she could have verbalized her emotions, missed him terribly. Somewhere in her brain she knew something was wrong.

What should you tell mom? Therapeutic fibs, redirect, distract. You cannot explain or reason with dementia.
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A friend of mine had to put her mother into a Memory Home. Her father needed a Nursing Home (leg ulcers) but the Memory Home allowed them to stay together in one room.

He passed first and surprise - although Mom knew he was gone, for some unknown reason, she just went on about her business in the Memory Home. She even found someone new to sit with her at mealtimes. She did pass later in the year but it wasn't because her husband of so many years had passed - it just came around to being her time to leave.

Wait until you must address the situation instead of making yourself crazy now. You might be worrying without cause and making yourself sick over it too.
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Take all of the good advice from others listed here below. The word is : APPEASE.

It was very hard for me to start "lying" to my mom. But when I realized that she would forget everything I said in five minutes anyway, it became easier. You tell her what she wants to hear.

He is fine. He is napping. He ate well today. He is coming to visit tomorrow.

This is no longer lying. With dementia, all the rules change. You are helping her through a horrible chapter of life the way she can handle it.

Make sure your sister reads these posts!!!!!!!!!!!
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Couples like this, in my work experience, are very special, very bonded and regardless of any health issues, the love is so deep that it is not ever surprising to lose one and then the other, but you never know and there are exceptions always. I think due to how WE react, or the absence being noticed at some level, it creates additional stress on the one not hospitalized or in another setting. A few years ago my dad wasn't feeling great and we went to an MD appt; turned out without any prior history to speak of, he was in heart block with a rate of 37 BPM. No need for ambulance believe it or not, and we had time to go home and get some stuff before going to ER. By time he was admitted and I was back home it was 2 AM. Mom was up and sort of pacing, was told the situation and finally went to bed. We were back at the hospital a good hour before the scheduled pacemaker procedure. She was much her snarly snippy self in spite of dementia, asking repetitive questions due to the stress. We were there until about 4:30 PM, came home. I took a nap and was heading back up there. When she saw me she wanted to know where dad was. Your mom may lose the memory of him, may stop asking questions. I had a friend whose parents both took ill...and her mom was fading away and just stopped asking so that it became a moot issue...when the horrible and sad reality was that he'd had a heart attack due to stress of worrying/losing her, and he was gone. Maybe a white fib if you have to about how he was feeling a little under the weather and will see her soon?
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Stop giving updates. Tell her he is resting, or sleeping, or relaxing, or napping.

My sibling and I both decided to not tell dad, our mom passed. A CNA decided different after we had talked to nursing staff. I was livid.

If you feel the need to tell her do it once. If she has dementia and asks every other day, your devistating her over and over likes it's the first time. Why would that ever be helpful? I personally think it is cruel.
He's resting, he's fine, he's napping, etc. Usually suffices. Over time she will stop asking. Why make her horribly miserable when it's not neccesary? They are like children. You shield them from hurtful things because you care. Let her live out her remaining days in peace and love. It is hard enuff with failing health.
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Cattieangel Aug 2018
Thanks...I agree! While at the hospital I say, hes taking a nap, let's not disturb him yet. Let's go do your hair, and distract her. My sister keeps telling her. She thinks we shouldn't like to her. Mom just gets upset over and over again. How will she be if he dies???? Heartbreaking.
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I remember when Grandpa Higgins died. Grandma had been 'spinny' for quite a while. She was lost without him and died within 5 months. It may sound terrible, but she needed to be with him and just lost the will to live. They were in their 80's at the time.

It was sad to lose her so soon after Grandpa, but it was terrible to see how lost she was. They had been married about 65 years.
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bigsun Aug 2018
Was the best thing
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after my dad died...I guess it worked out for my mom and me and sister. i feel lucky about that. (meaning my mom didn't keep asking where he was)

my mom has dementia. but she knew he passed. he had a very small funeral service and she attended. i wrote his obit and picked out his picture to use. i tried to include my mom with some decisions. even if she didn't remember later that i had asked.
if she ever asked i would tell her, Mom, he was old and tired. He was such a good dad. you had so many good years. I miss him a lot, but his time just came. i always tell my mom we all have expiration dates.

your mom may be stronger than you think when he dies. ive seen a lot tho where couples who have been married a long time...die within a short time of each other.
i made a wall of pics for my dad in my moms assisted living apartment. one is an enlarged picture (the funeral home had made from a regular camera pic.) I framed it and put it over the couch. plus the military flag he got from the VA. i bought a rectangular box frame i found at walmart.  plus i framed his obit from the newspaper.
NOT to be mean, but i also removed ALL my dads personal items - clothing, shoes etc from her closet. so she didn't get confused. i got rid of his easy chair(was dirty) and bought her some new furniture.

you know your mom best, so it will be up to you what you end up being most comfortable with telling her. At this point in my moms situation  i am comfortable telling her the truth. Maybe down the road if she starts getting 'mental'...and she started asking where he was, i may have to figure out some 'story' to tell her. either that i will very kindly tell her: mom he went to heaven remember?
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disgustedtoo Aug 2018
once they cannot retain the information (could start asking again in 10 minutes, next day, next week) it will be harder to give them the "truth". You will likely know, when she gets upset that he is gone, and you have to repeat telling and going through the upset, it will be time for some other excuse...

As I noted in another post here, our mother (95) is focused on HER mother - I know from past dealings with mom that telling her something that goes against her "reality" results in arguing the issue or clamming up... she cannot handle the truth. So, I do whatever I can to deflect questions/requests to visit...
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Usually rehab is for therapy. Is Dad being switched to LTC. Where I live they are in same building. You may want to call in hospice and evaluate.
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Cattieangel Aug 2018
Rehab is being wishy washy. We feel they can't handle his needs and aren't being up front with us. It's a new doc, nurse cna each day and a different diagnosis. No where to move him. It's FL, and facilities maxex out Ins gives him 8 days to make progress or they have to discharge. Rehab is steering us to Hospice and we are having eval done Moday. It's all too much!
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Sad to say, but your mom is probably past the point where she will understand the concept of death. Even if you tell her, she will forget and keep asking. In the moment, she will understand and be very upset, anxious and will cry. Then she will forget and five minutes later, ask you again. So, it’s better just to use the Therapeutic Fib and tell her your dad is still in rehab and will be back when he’s better. Don’t make any long, involved explanations It’s so hard to do, I know. I had to do it when my 95 year old mom would ask where her parents were. Sending you hugs...
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Cattieangel Aug 2018
Thats what I think we will have to do. I don't think she will accept or remember as her mind far too gone. It's to sad to watch this amazing couple ending life with each other this way. It's hard to lie to, but I think it's necessary to keep her calm. Heartbreaking!!
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