My 92 year old father passed last month. My 90 year old mother is in mid to late stage dementia. They lived together in IL until just over a year ago when dad fell and his decline started and he could no longer care for himself or assist in her care. He went to AL and she went to MC. He visited her each night after dinner - bringing her a candy and fresh water for the night. However that stopped 3 months ago when he entered hospice. She still saw him once or twice a week in his apartment when her caregiver or I took her to see him. But he was pretty non-communicative and she was full of repeated questions about him and his condition - she never really grasped what was going on with him. She did see him a few days before he passed, when he clearly (to a non-dementia patient) looked like he was dying. She didn't react unusually. When he passed we told her - she was shocked and truly crestfallen. No tears but she sat for about 30-40 minutes repeating "no, no" as we reassured her we were there for her and would continue to be with her. Then we watched the news slip away from her and her face return to normal. Days go by when she doesn't ask where dad is. Other days she asks every day for him. We typically say he is in his apartment upstairs. Sometimes she asks what he's doing. We say napping or just hanging out. She has never asked to go see him. But I struggle every day when I have to lie to her. But I also don't want to put her through the pain of his loss over and over again. My fear is what are we going to do at Thanksgiving when I bring her to my home and he is not there with us- a situation that never would have happened when he was alive. I know she will ask repeated all evening why dad isn't there. I fairly confident whatever I tell her will not stick. But do I say he was too sick to come, he had other plans (which would be total abnormal), what?
You would have to repeat the truth over and over and she would mourn over and over while she still retains capacity to care at all, but she is worrying and fretting with each lie and to me worrying is the worst. I would rather repeatedly mourn.
I would not bring mother home. The time for happy holiday celebrations round the laden table and round the Christmas tree are now over. There will be activities where she is. Join them. Allow Christmas and Thanksgiving to be just another day for her rather than chaos and disruption in her routine which will be very disturbing.
You mom is no longer in your world of normals now. She has her own world (as Oliver Sacks used to say). And you won't be able to understand that world fully. But the best thing you can do for her now is to create peace when you are able. Practice the serenity prayer. There is little perfection in the end when dementia is involved. Just make it peaceful as you are able.
"I myself wouldn't do the lying. You would have to repeat the truth over and over and she would mourn over and over while she still retains capacity to care at all, but she is worrying and fretting with each lie and to me worrying is the worst. I would rather repeatedly mourn."
I thought you had typed it wrong until I read the rest of the paragraph.
I haven't had to deal with this yet, but feel it may hurt the daughter also if she has to keep repeating the truth over and over and relive the mourning too. I may be wrong but I feel a lie that has been thought out ahead of time may be accepted easier because it may not affect the mother's feelings as deeply.
However, I would strongly suggest telling others who will be coming so as to be on the same page. I feel this would apply whether someone decides to tell the truth or a therapeutic lie.
Your story really touched me, brought tears to my eyes.
I'm honestly not sure , what the right thing to do here, as for the white lies or not. That's a really hard one.
As for Thanksgiving, I was thinking same as for what Alva said, just let it be another day for mom.
I would take Thanksgiving dinner to mom and reserve the private dining room in her MC as we did with my mother for the holidays. She won't expect dad to be there because it's a new environment you've never celebrated in before. Bring along an 8x10 framed photo of dad, a head shot is preferable, so in case she does ask, you can place the frame at place setting in dad's honor. I did that in honor of my father at Christmas. If mom asks where dad is, THEN you can say he's gone, but still with us in spirit, as you place the photo on the table. Just one idea.
Best of luck and my condolences on the loss of your dad.
Dont take mom home for the holiday, bring the food there to her.
A lot of people and noise is confusing and frightening.
And there is a VERY good possibility that as soon as you get her into your home she will want to "go home"
And you will not be able to enjoy time with your family if you are the caregiver for the day.
If you wish ask the facility if you can bring family to visit and have a dessert there. Most have a private dining room that you could use.
Or have family members drop in and visit her a few at a time over the course of a few days. Keep the visits short. If family wants to visit with each other arrange to meet at a nearby restaurant .
Oh, your responses to mom about where dad is are just fine. You are not lying it is a "therapeutic fib"
Don't make such a big deal out of this, if she asks just say " He is not feeling well" or something like that.
Personally, I would not bring her home, she will have a dinner at the MC facility with her new homies. Visit her before or after their dinner and leave it at that.
Her life has changed and so must your attitude, she is not who she was and never will be, accept this fact of life.
"Dinner at the MC with her new homies". LOL
Thanksgiving at your house is more for you than for her because her reality is different now, and it's natural for you to long for family life as it always was. But it's not and never will be. Enjoy the facility celebration, let someone else do the cooking, and be with mom where she is.
Families get hung up on the holidays , thinking they have to bring them home . Your mother will not remember the holidays .
In this late stage of dementia , Your mother is better off not having her routine changed and getting upset . Bring a meal to her and visit .
he’s in a good place
you’ll see him soon
he’s good
Take her home. Do what you've been doing to get through the holiday. He's not feeling well and repeat as needed.
Whether or not you decide to celebrate the holidays at your home or the facility does not really matter as long as the time together is treasured knowing how precious time with family truly is. Make the most of your resources and keep God first in your plans trusting everything after that falls into its proper place according to his will. You're not alone here Jesus will light your way. Bless and be blessed.
Give her hope.
You do not tell a person with dementia the 'truth.'
You talk to them to keep them calm and in their own reality. This is all they have.
Gena / Touch Matters
Part of a caregiver's responsibility is to protect their LO. I don't see how this type of technical "truthfulness" accomplishes this.
Bring to holiday to your Mom and tell her whatever you think will protect her emotional peace.
Perhaps you could use pics of your mom's Dad and couple it with your Dad as her long-term memories are there but short term is no longer the gateway to blueprint new memories. I would do this while recalling all the wonderful memories through the pics saying how lucky you all were to have had Dad as long as you did to minimize the negative and place it in a more positive frame. I hope this helps someone.
Depending on how far gone she is with th dementia, make up a story when she asks about your father. If she asks tell her he got called into work. Or that he's still in the hospital but will be getting released soon. Don't tell her he died because that will only upset her and and upset can cause setbacks for a person with dementia.