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My 91 year old husband was first diagnosed with early on set Alzheimer's, then reevaluated with LBD. He is unable to stand or walk, not experiencing hallucinations but needs information given repeatedly.
In the last 4 months my brother and his wife have passed away within 2 months of each other, another brother was diagnosed with adenocarcinoma of the lungs, nephew has stage 4 cancer, my sister's husband prostate cancer, I have not shared any of this with him. Concerned he will become more depressed and the stress will take its toll on him..I’m fighting with myself about telling him what’s happening. We have always gone through these kind of things together and I feel like I’m lying to him when he asks questions. Try to say things like they’re being taken care of. Has anyone else had to decide what or when to share this kind of information and how was it handled?

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Your..... has lost his wife...he has "loss issues". Hospice can help. If he askes about someone answere him with what ever is going on. every body has death and separation in all of our minds. It takes a little off the edge when we lose them.
Talk a lot to him..answer his questions. This will help to keep his depression at or above "situational depression". Keep him going on his schedule. Do not do things for him that are difficult for him to do. It is good for his brain. It is very comforting that you are with him.
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Hello.

i will ask how do you feel each time you remember someone you love who's died.

is it with a sense of relief or with mild shock and sadness.

my daughter died a year and a half ago and tho intellectually i know that, when i think of her i imagine her in her little house back east. Have i achieved anything positive by knowing shes dead ?

give your husband good thoughts.

im sorry if this sounds harsh.
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Don't apply rules of 'normalcy' to a disease like LBD! Such as applying a moral code of 'lying' to a person who is much, much better off NOT knowing the horrid truth than suffering FROM knowing the horrid truth. Allow common sense to prevail, and use white lies whenever necessary to keep your husband calm and relaxed.

Don't ever share bad news with a person suffering from ALZ/dementia. It only serves to deepen their anxiety and agitation each and every time you are forced to repeat the bad news.

Sorry you're having so much of it to deal with! Sending you a hug and a prayer for peace
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Imho, there is no real need to inform him of your family members' deaths. Prayers sent.
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I don't tell my mom anything.
If she asks (which she really never does) I would be truthful. But, when a friend or LO dies, it seems pointless to have to go in to the nitty gritty of where, when, why of their passing.

Oddly, she never gets upset, she seems actually angry.

Withholding information of that sort is NOT lying, it's just not bringing it up.
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My mother has dementia, stage 6 (of 7). My father passed away on Father's Day. I took her to the funeral, I know that's what my father would have wanted. When she read through the memorial pamphlet she figured out what had happened, but when the service was over she had forgotten, and thought we were at a church service and then wanted to "go home." I have her in memory care and the caretakers there have reminded her occasionally of my father's passing and it only brings her severe heartache for 30 minutes, where she pounds her fists against chair arms and sometimes has a panic attack, and then she's forgotten again. I've asked them to just let it go, it's too traumatic and hard on her and I'm afraid it will harm her already fragile health to be repeatedly reminded. I really don't see the point in putting someone who is already fragile through this trauma. I'm going to let my 91 year old mother live out her last few years as stress-free as possible. I don't feel it is "lying" to them, when they can't process facts. She's dancing and singing with the other residents otherwise and that's how I feel it should be from here on out.
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JackieThom Nov 2020
I agree with you. Give them as much joy and peace as they can have. My father, 98, is very confused about his parents being alive or dead. I am learning how to reply to him. Blessings to you.
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My husband has LBD and when he asks about people who have passed away I tell him that they don’t come to town much anymore, or they are working or at school or something like that. It’s called therapeutic lying and if it keeps them calm and satisfies them, then it is not a bad thing to do. They don’t usually remember what you have told them anyway but they don’t have to know that they have lost their loved ones.
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I agree with Frances73 and some of the other answers given.
I personally wouldn't tell him and have made those decisions.
Another way to honor him is when your husband asks about his son instead of telling him point blank is to redirect and bring out photos of them together and talk about the good times they had together. If you believe they will see each other again.
Do not feel guilty as hard as it is but he's hurting enough and in moments of clarity let him know his nephew loves him and again redirect with some positive note about their relationship. Your husband doesn't need to go through that anguish and both of you are dealing with quite a lot as it is
This is just my opinion and from my similar experiences.
Angela
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I am so sorry for all the difficulty your are going through. You say your husband "Needs information repeatedly." So how many times will you need to tell him about these sad things, over and over? How many times will you make him sad? Will it make his life better to know this?

The hardest thing I have ever had to do was tell Mom that my brother had died. I would never want to have to do that again let along repeatedly.
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If he does not remember things long term, there is no point in depressing him short term. Just say they are fine, doing ok, etc and let it go.
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My mother has lost two beloved cousins in the part year. I would never dream of telling her.

Please resist the urge to tell your husband even though I know you'd like to have someone to talk to about it. He's not the person for that now.
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I’ve both shared the info and withheld it.
There are problems with each.
Since you mention these are family members of yours, I’m hoping you are able to openly grieve and visit with your family, if not your husband.

Most recently my DH lost a nephew, 54, heart attack. I decided not to tell DH aunt, 94 with dementia.

In the past. I have told her of other family deaths and she quickly forgets.

Somehow, I just couldn’t tell her about this death for her sake and my own. It was two days before her birthday and I was so devastated by this very unexpected death that I was unable to celebrate her birthday (two days after his death) as I normally would.
So I decided not to tell her.

The next thing I know there are neighbors wanting to talk to her about nephews death! Such a stress.

So I wish you luck in handling this with your DH and I encourage you to seek a comforting outlet for yourself as this loss and severe illness is happening to your loved ones and please take care of yourself during this difficult time.
Sometimes we get so caught up in protecting the moods and well being of our loved ones that we forget that we need a shoulder as well.

I am very sorry for the loss of your brother and his wife.

I also have a nephew recently diagnosed with cancer. He’s only 36. So I do understand some of the stress you are under and I know you miss being able to share these circumstances with your DH as that is equally a loss for you.

I was going to suggest that you keep a gratitude journal. I read your profile and see that you are looking for bright spots and finding them. Perhaps have those discussions of things to be grateful for with your DH as a way to honor your loved ones. Perhaps it will help you both.
I’m so glad you have your son to help.
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I’m not sure what is to be accomplished by providing news to someone who can’t process news. I learned to go into the world of my LO who has dementia. It’s not reality. I learned to focus on happy news and comfort. She could not handle anything else. I’m sorry for your loss.
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Don't tell him the bad news. No benefit, only pain.

Don't beat yourself up about it. He's not himself anymore and having this information will not have any positives for him.
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dear somanyquestions, yes, there are so many questions and not enough answers for those caregivers who put their life on hold to care for another. It's an enormous responsibility and those who take it on ( not everybody can or should) deserve a special place in heaven.

It may bother you but what good would it do to tell your husband about the family deaths or illnesses? It certainly won't boost his spirits. No, he has no need to know.

You are giving him a proper response in what you're currently saying. “Therapeutic fibbing” is a term that a lot of caregiver's struggle over because of the implication of it being a lie. Consider this: did you ever talk about Santa Claus, the Easter bunny or the tooth fairy to your kids? Did you feel guilty in doing that? Were you lying or just fibbing? The progressive effects of dementia causes one to revert back to their childhood over time so we too, as caregivers, should accommodate them.

Your profile states you're trying to sort out his stubborn personality from his dementia behavior. Unless he's always had a stubborn personality, his behavior now is all LBD related.

And don't forget to care for yourself. Without you where is he?
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somanyquestions Nov 2020
Thank you for your kind words and understanding..
the confusion of my LO’s diagnosis is torment enough.. trying to accept the doctors responding with the attitude of his age being the answer to any treatments or correct diagnosis is very frustrating.. yet I am trying not to focus on that..this disease creates so much second guessing for caretakers.. being able to reach out on this page and share with others is truly a blessing for me..
God’s plan..God’s timing ❤️
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