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.
Marylynne
Sherry
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
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
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!
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
Bennie
Rose1
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.
Keep us posted, and bless you for being so caring.
Carol
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.
Carol
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 ?
Bennie
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~
Bennie
Take care, my friends. You are the best.
Carol
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.
Bennie
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.
But, I do feel people need to be told that their spouse died. I think they know on some level.
Carol