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I need your ideas and advice on how to handle my father's death. I've been going back and forth on what to do - so would appreciate all comments to help my thinking.

My mother has dementia for the past 15 years, from a head injury she sustained. She is able to learn and remember some new things - like her new cat's names and my husband's name - whom she did not know before her injury. But it is hard to predict what she can remember.

Both of my parents have lived with my husband and myself for the last 9 years in Japan. Dad frequently traveled back to the US - to see his doctors and friends. During his last trip, he took ill and died. Since these trips to the US are fairly common, we've gotten into a routine of keeping Mom calm. So when she asks where Dad is - we typically tell her - Dad is shopping, or out walking or on the computer checking his email. Mom typically accepts these answer and then goes on with other things. We use the method of distracting her frequently, as if we told her Dad was in the US - then she gets angry that he did not take her.

So the advice I need - do I tell her about my father's death ? And more importantly, do I take her back to the US for the funeral ? She is 79 years old and prior to her injury, was quite the world traveler - very use to flying. However, I notice that since her dementia, she is stressed when put into environments that are not familiar to her. So I expect that flying will cause her some stress - even if my husgand and myself are with her.

I do feel it is best to tell her, as they were married for over 60 years and at some level, she should know. Since she can remember selective things - I am wondering if I should take her to the funeral - which will be at Arlington National Cemetry. I think this could be something she might remember. But then again - I have no way of knowing.

After the funeral, my curent thinking is to use the same strategy, that if she asks about Dad - meaning she does not remember he died - then we keep telling her he is out. That way - she doesn't have to re-live the grief.

Should I take her to the funeral ?

Should I tell her that he died ?

Many thanks for your comments.

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Oh my god, this is a tough one. I have a friend, whose mother has dementia. Her father died and her mother was told and did go to the funeral. Afterwards, she constantly asked my friend, where her husband is. She did not remember he died, and when my friend reminds her, she just relives the grief over and over again. She wishes, she didn't tell her now, but I think you need the advice of one of the professionals from this site. Sorry about your Dad.

Marylynne
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I am so sorry about your dad, My dad died in may he had dementia also he could not remember his parents passing away along time ago. Every time he would ask where mom was , I thought he ment my mom not thinking he ment his. well when we told him she died a long time ago , he would get upset and relive the grief and was angery for a while . so I would talk to a professional. It all depends on what you and your husband can handle, You are the ones that have to be her support after the fact. Well best wishes .But one thing You have to live with whatever you choose to do . so think about that. if you don't tell her will you be able to live with that choice later when your mother is not here. so think of all things you will have to endure. I know it was hard to see my dad go through that each time. but I felt he needed to know .just remember no matter the choice it will be hard, but you will get through it. take care

Sherry
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As a former nurse I would tell her that he died and leave it up to her if she wants to go to the funeral- but be aware she probably will not remenber that he died most of the time and it will be a constant problem her asking about but m you need to do what in your heart is best for both of you-only you can decide and then after you make a decision-you know you did what you thought was best and do not second guess yourself.
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My mother is aware that her husband, my dad, is gone. She often still cries about him and he died in 1982. She wanted pictures of him when he was young and in his military uniform. She tells me frequently that she misses him.

I don't think your mother will remember that your dad has died. Traveling from Japan to the US may be more than she is capable of enduring at 79. I would check with her primary physician to see if she is able to fly. If you do decide to make the trip, inform the airlines of her age and condition so they can accomodate you getting on and off the plane and with seating. Arrange for a skycap to meet your flight so she won't have to walk long distances.

When my uncle died, his older brother kept asking where "Mama and Papa were and why weren't they at LeRoy's funeral." Of course, his parents had been dead for decades. I don't think your mother would be aware of why you are at the funeral and who the funeral is for. I would spare her this information.

Instead, I would get her some photos of your dad. If she doesn't have one, start a photobook that she can look at when she asks about him. Sometimes, ignorance is bliss and at this point in her life, I would let her have the bliss.

My condolences on the loss of your father.

Julie Q
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This is a heart-breaker. My mom had dementia when my dad died, and I had to tell her repeatedly that he died. I think she knew on some level, but she just couldn't accept it, even though she was in the room when he passed. Every day she would say, "Did he really die?" And yes, she did go to the funeral. We helped her with the cards, and she received Dad's flag.

Your situation is much more complicated. It will be painful, but I think your mother has a right to know. She will be confused, and the trip will be hard on her, but she also has a right to be at his funeral if you can at all manage it. The funeral may make it more real to her, also.

I even struggled with telling Mom that Dad was going on hospice, but the hospice people wisely told me that she absolutely needed to know (I knew she would immediately think death). And they were right. It was hard, but sometimes we have to do tough things, and boy this is one of them.

You have a good heart and want to do the right thing. And there's no perfect answer. You are the one who knows your mom and the situation best. But my feeling is that she needs to be told (maybe repeatedly), and if possible, attend the funeral.

Carol
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I agree with creating a memory album. Research shows that this kind of mourning helps.

I believe in telling the truth.

I also think that those with dementia most need their routines and travelling might not be a good thing.

My father was angry, after mom died. No one told him what happened. He had delirium at the time, and was quite wicked. He didn't remember anything. Your mom has a right to the truth!
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I don't envy your situation. Naomi's Feil's Validation methods might be useful for you now. If I can paraphrase, it's not generally a good idea to lie to someone with dementia, because on some level inside they know you're lying. On the other hand, it's also not a good idea to re-traumatize the person whenever they ask about someone who died. I think perhaps your mom should be told about your dad's death and allowed to go through her own intense mourning period - once - with you and any other close family members there. Maybe her mourning period on the conscious level will only last a few minutes or maybe she will remember - it sounds like you're not sure. I honor you for struggling to find the best option for her.

Would it be an option for you to set up a small community memorial service for your dad there, after you get back from the funeral? Then your mom could get whatever she can out of the service, but be saved from the difficult trip.

In the future, though, there's no point in sending her into fresh grief whenever she asks about him. If you can get away without lying, it's best. When she asks where he is, sometimes you can put the question back on her: "It's 2:30, Mom. Where do you think Dad would be at 2:30?" or "Today is Monday. What day did Dad's bowling league meet?" Another strategy that can work at times is taking her question as an indicator that she's thinking about him and wants to talk about him. The "validation" response in this case would be to spend time asking her about him, drawing out whatever she's feeling/ thinking about him at that moment.

These are just some possible strategies. In the long run, you know your mom best, and there's not going to be any perfect answer that'll make this easy for you. Good luck!

~ Linda
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somewhere deep inside she will know and you will feel better by telling her the truth. Whenever she ask about him in the future ask her would she like to look at pictures of him and let her remember what she will.Sometimes just a picture is all that is needed.My prayers are with you.



Bennie
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i pray you will make the right discision about telling your mother about the death of her husband.and i pray God eill comfort you. My experience with my mother ,has alzheimers sister dieded three months ago. She went to the funeral and during the 3 minute remarks she asked me to say something abouth my aunt on her behalf ,because she felt she couldnt get the words right,wow that surprised me because I thought she was in one of her state of no recognition.Make a long story short,she had forgotten that we had traveled to the funeral and buried her sister. Now at times she asks I wonder how her sister is doing.I tell her she is with god because she passed away,and I she will see her one day.She said I know'. I used to say I don't no ,she's probably resting.She accepted my answere.I felt better better about finally telling her the truth. You will know what to say when the time presents itself.God bless
Rose1
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Dear Everyone - it is so helpful to read your thoughts and ideas. I appreciate the quick responses. There are some really good suggestions here = that I will definitely incorporate.

Here is what I have decided to do:

1. I will tell my mother tonight that Dad is gravely ill and is not expected to make it. I will observe how she reacts and then take my cues from that.

2. It is early evening now, so I will see how she is in the morning. If she remembers (probably not) or how she reacts a second time with the news. If she is consistent in her reaction - then I have a good idea of what direction to go in.

Will keep you posted on the progress.
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I'm sorry to hear of your dilemma, I was wondering would taking a picture of the his gravestone help?
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Good plan. Watch her reactions and go from there. Each person is different, and you have the travel problem, which can be very upsetting to someone with dementia. Yet, funeral attendence can help some people. It's an unusually tough situation for you.

Keep us posted, and bless you for being so caring.
Carol
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One post said, "i pray you will make the right discision"

Ultimately, you make the best decision you can at the time, with the information you have access to. Typically, short term memory isn't something that those with dementia have 100% of the time. Dementia patients have a sense of reality at some times. I don't think you can lie by omission. They have the right to truth.

They will read it in your face, your demeanor and your manner, the truth.
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Excellent words, Jen.
Carol
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Quick update to all:

We told Mom that Dad was very very sick and the doctor's do not think he will make it. Her immediate response was to go into a type of denial mode - where she blamed Dad's past behaviour for making him sick now. She clearly understood the severity. I then asked her if she wanted to go see him ? And she asked - is he consciously, will he recognize me ? Because if yes - then she wants to see him. But if no - she doesn't want to see him. I then asked her - what if Dad dies - does Mom want to go to the funeral. Her immediate reply was - of course.

Within 15 minutes - she forgot the entire conversation and asked where Dad was. So I repeated that Dad was very very sick and not expected to make it. She looked very intently into my eyes - and ask me how serious it was. And I told her with complete honestly that I did not think Dad would survive. She said - wow - that serious, and got quiet. She then said - well - maybe he will get better. And I said, Mom - dont get your hopes up. The doctors are quite sure he wont make it. But let's call in the morning and see how Dad is. She said OK and then settled into bed.

I will let you know how it goes in the morning.

BTW - I am thinking of taking pictures of the funeral in Arlington and even possibly video tape the ceremony and Dad's coffin, maybe even Dad in the coffin. I know it sounds morbid - but I am thinking that this will be the only way to sustain a future memory for Mom, if she wants to see it. We will also get the flag from his coffin and put it in some type of memory case. I want to display the flag in my home and 1 picture of the ceremony, to honor Dad. I am so heartbroken that he died. However, will this be too difficult for my mother to see every day ? Any advice on this ?
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Why don't you display the flag with a happy picture of your dad instead of a picture of the funeral?
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Wonderful thought. Maybe a wedding picture of both of them. You did the right thing. Be strong, remember he gives you no more than you can handle. Be in peace.


Bennie
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Thank you, Carol!

With dementia patients, they don't necessarily deal with current reality. It is hard to differentiate between what they want to know and refuse to acknowledge. It is hard to tell if seeing a picture of a funeral will sustain a memory if they cannot or will not accept it! You'll have to see how your mom is in the a.m.! With dad I never knew.
They told me, after he passed, that they knew he was going to have a bad day if he woke up asking for mom.

M dad mourned his dog more than my mom. And the dog was simply given a new home! He hallucinated more about the dog, too. Mom he would sometimes call to, as if she was in the next room, to talk to her and ask her something.

I kept up their last church formal picture as a couple in his room. He loved it.

With the way the amygdala works (where memories and associations are stored) she may associate the coffin with another funeral and not your dad's! Don't you want to keep a visual record of when he was healthy? I put my favourite photo of dad on the front of my book. He was in the middle of his garden, working away. You could see he was a bit more frail, but it was when he was in the happiest frame of mine.

I look at a ceremony as part of a tradition. A picture should be a celebration of life, strength, loving relationships! My dad passed away two years ago next month (Feb.). I bring out the beautiful moments - like a favourite garment that is to be loved and cherished.

sorry - just /my two cents~
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everyones two cents adds up to more than change. This is how we as a group of caregivers hold each other up. If not for this web site I for one would have already given up. When you get up in the morning ask for an open heart and a calm soul. You will make the right decision.

Bennie
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Just reading everyones comments to onlydaughter16 ,gave me an idea to use with my mom. My mother commented before ,how she enjoy seeing people that are happy. We have great family pictures of happy times it brings awarm sensation to remember. i had a few hours today(doctors appointment) i saw a lot of photo albums front cover displaying a photo of a happy moment that put a smile on my face and I didn't know the people. Your mother probably enjoy a display of a picture of she and her husband or him in a happy moment. Rose1
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It's so gratifying to read how you help each other! Everyone has such good ideas, that the whole community becomes exactly that - a community of friends. I loved Bennie's input - yes, this is way more than "just change."

Take care, my friends. You are the best.
Carol
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Dear All - another update. We decided to take mom to the US for the funeral. In the morning- she did not remember our discussion from the previous night. This did not surprise me. But the good thing is - she reacted in the same manner as the night before. She is usually more alert in the morning, and this time - she made the leap in logic that Dad has already died. So the conversation actually advanced to the point of planning for the funeral. Naturally - in 15 minutes after all this - she forget again. But what has comforted me - is her consisten reaction. So regardless of whether she remembers or not, at least she will see Dad one last time.

On the travel side - we have planned as easy of a trip as possible. We have our own small wheelchair - so she does not have to walk. And we are breaking the trip across 2 days - so Mom can sleep overnight before continuing the next leg of the trip.

I very much appreciate everyone's "two cents" as there are some great ideas that I will use. I will order the book on the Naomi Feil's technique - as I am not familiar with this - and I think this will help us to interact with Mom in the future. The idea of the flag with a good happy picture is great. Will definitely do that.

Our next hurdle is to see how Mom handles actually seeing Dad in the funeral home. I am dreading seeing Dad, so I can only imagine how she will react. We will try to gently warn Mom and get her mentally ready - before walking in. I think that if she refuses to see him, then we will not force her.

Thanks again for your lovely comments.
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Please let everyone have an update on the trip when you return. Have a safe flight and we'll keep you in our prayers.

Bennie
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Dear Everyone - this is a final update on our situation. We buried my father yesterday in Arlington Cemetery and just returned home to NY today. We will be here for another week - attending to my father's will and ensuring the house is being taken care of - before we return to Singapore.

Overall, Mom has handled everything quite well. She got tired in between the various "events" but she was quite social with all the relatives that visited her. The hardest part was the ceremony in Arlington. I felt that was the only time she really grieved, because she knew how much it meant to Dad to be buried there. It was his dream and Mom said that Dad would be so proud to be in Arlington.

Of course, she still does not remember Dad has died and continues to ask where Dad is. But we found an interesting reaction from Mom. Initially - we said that Dad died - and she was shocked each time. However, when we say that Dad is in Arlington - she is more accepting - "oh - he died" - but not the shocked reaction as before.

When we return to Singapore - we may not tell her Dad is in Arlington - as we want to keep her happy with life. However, we find that when she doesn't see Dad - she starts thinking that Dad has abandoned her, or left her - which makes her mad. But we will read the various books we bought and see if we can get some insight into how best to handle this.

Again - many many thanks for your wonderful comments. And thank you so much for your thoughts and prayers.
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l You handled that just right. No one could have done a better job. Be proud and hold your head up high. Working through this has showen you the right way to tell mom. Have a wonderful time with your mom while you can. Enjoy life. With much love and prayers Bennie
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God bless you OnlyDaughter. I pray you have safe travels and journey. I wonder if it would be good to talk to Mom about heaven. Now that would be a wonderful thought! You sound so strong in writing. I'm sure that you are grieving, too. May the Lord be with you and comfort you and give you peace. You are a wonderful daughter.
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Clearly God made sure your mom is in the best of hands - yours.
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I remember telling my Dad that it was OK to let go. He was fighting a brain tumour, had lost his wife, home, precious pet dog, mobility, etc. I told him that Mom was waiting for him. He looked around the room and asked, "Where?" Sometimes the best intentions go awry.
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Funny, Jen! I was always told it was good to say that, and when I told Dad that he thought I "wanted him to die." It was awful! You just never know.

But, I do feel people need to be told that their spouse died. I think they know on some level.
Carol
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OnlyDaughter16, yours is a tough situation. Years ago, I never understood why some individuals would not share a life event with an aging loved one. Now, I personally know why, as there are some things I would not share with my Mom today if they were to occur, including certain deaths, whether friends, or family. Dementia creates its own confusion. Anything added to that mix is entirely unpredictable. I would add that it also depends on the degree of emotional, cognitive and psychological trauma your Mom experiences when she temporarily becomes stuck on a category that fades and resurfaces. Is it worth it for her to go through that over and over? It may, or may not be, but only you know. Whatever you do, you will do what's right for you and your Mom. You are doing the best you can. Don't start to second-guess yourself.
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