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My mom is a resident in AL memory care. I lost my dad, who was in a SNF, back in May. Right before my dad passed, my mom stopped eating and remained in the bed for 4 days straight. The memory care DON recommended we put her on hospice. When my dad passed away, the facility recommended we not tell my mom, thinking she would give up all hope. We followed their advice.


Fast forward to 3 months later. My mom is getting up some now, eating some, etc. The past 2 times I have visited her, she has asked about my dad for the first time in many months. Previously she didn’t even remember his name. The facility is still recommending I not tell her he has passed away but to redirect her. She hasn’t asked to go home for many months and today asked me who was taking her home. I don’t know the best way to answer her or how to cope with this. It breaks my heart when I’m already grieving losing my dad.

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I’m so sorry for your loss.

I wouldn’t tell your mom about your dad. She’s not going to remember it. She will continue to ask where he is and if you tell her, every time, that he died, she is going to grieve all over again. A therapeutic fib might be in order her, just tell her he wasn’t able to come to today or something.
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I'd spare her the pain that would come each and every time you would have to tell her, because, it would be fresh each time. When people are not able to process the information, there is just no where for it to go. So, to me, there is no point in providing painful info that she would never accept or recall until the next time. Eventually, she may stop asking. I never thought that my LO would stop asking about her parents, but, she did eventually. I'd try to think of something that would make sense, like, he has a cold and didn't come or is at work.
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"He's not able to visit anymore, remember but he is being well cared for and isn't in any pain, he misses you and sends his love." Not a lie just not the entire hard truth.

When she asks who's taking her home maybe ask "home where Mom"? (maybe) "We didn't need to move you to the hospital this time mom they took care of you right here in your apartment/room this time."
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NYDaughterInLaw Aug 2019
Excellent answer!!!
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Hurtbabygirl, my heartfelt sympathy to you and your family on the passing of your Dad.

When it comes to your Mom asking to go home, please note for those with Alzheimer's/Dementia, home usually means their childhood home. Your Mom wants to see her parents, and any siblings she may have had.

My own Mom [98] asked to go home, and eventually I learned from clues which home she was talking about, it was the house where she was born and raised along with all her siblings. I had to use "theraputic fibs" any time she ask to go home, to see her parents, or to see her siblings. I just made up excuses that would make sense to my Mom, and it worked, until the next day when she asked again.
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I’m so sorry. It’s heartbreaking to read this. I don’t have experience with anything like this but I still wanted to offer support. Others have given useful advice.

I am glad she is getting around a little and eating a little too.

If AL is saying not to tell her about your dad then I wouldn’t. They spend enough time with her to see her patterns. Are you speaking with her nurse or social worker? I suppose they will keep you informed on her behavior. You can update them too.

I hope you find helpful solutions and you can gain some peace in a difficult situation.
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Very hard choice, but I would follow the advice of the facility and redirect her. If she is going through a temporary improvement she will stop asking, and even if she remains at current abilities, redirecting may stop the questions. Good luck with finding a good solution for you all.
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My condolences on the passing of your dad. And on the daily loss of your mom as the disease progresses. It is such a rough time for you. Hugs to you.

When Mom reached the stage of not remembering Dad, it was heart wrenching yet a relief. She was no longer inconsolable about his passing. Then one day out of the blue she asked about him, wondering why he wasn’t with her or she hadn’t seen him. She was crying & asked me if he left her because “of the way I am now”. My heart broke because for the 70+ years they were together they were always “my gal” and “my fella”. I assured her that was not the case, he passed on and now was getting things ready for when she joined him. The relief was instant; she stopped crying & got the most beautiful smile on her face. For the next few years, she remembered less & less about anything. Yet, that stayed with her, giving her comfort. She would point to their wedding picture, saying she would join him when he had everything ready.
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Might your mother's dementia prevent her from really understanding what it meant that her husband had died? Does she still think he is "at home," with home perhaps representing her life when she remembered things better If you told her her husband had died, would she remember that the next day? It would not be good to jeopardize your mother's waning ability to cope with her own situation, but it must feel devious to avoid answering her directly.

Be patient with yourself, too. You are grieving your father's death plus dealing with your mother's dementia. You must be emotionally drained.
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We were told to tell them once. So they can only relive the hurt and dis pare once. Don't keep telling them so the will relive the pain of their husbands death over and over. In our case only a few minutes or hours. we just go with the flow. Sometimes we say he's gone to work, out in the barn, gone to the casino. Just flow with the conversation. We probably would have lost her if she really knew where he is at and where she is at. She needs 24/7 care and we were spending over 11,000 a month at home, so now in Memory care home.
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At this point I would continue to redirect her or tell her little white lies. My mother was pretty far along in her Alzheimer’s progression when my father died, but she was still living at home with him. Even though she was there every day, including paths funeral, she could not remember that he had been sick for weeks before he died, and she forgot that he had died. She asked for him constantly, asking why no one told her that he had been sick. We finally realized that she was not going to be able to process this new information. She got very upset every time we told her the truth; it was heartbreaking to see her grieve over and over. So we stopped telling and started redirecting her if we could. If redirection did not help, we said that Dad was at work, at the grocery store, or at the farm. She was satisfied most of the time and eventually stopped asking.
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I love Lymie's answer: "He's not able to visit anymore, remember but he is being well cared for and isn't in any pain, he misses you and sends his love."
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I absolutely disagree with not telling her. She still has rights and you deserve to grieve properly. While there is no perfect solution, you need to do what feels right in your heart. No one can make that decision for you. Personally, I know from experience, things are not as bad as we conjure up in our mind. It's usually a relief to get it out. And I have found that most often there are blessings that come out of it that we didn't expect and could have missed out on. You have more courage and strength than you know to handle whatever comes. I wish you the best and pray for a peaceful resolve to the situation. Blessings!
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Tell her about her husband. My mother was in a rest home with loss of memory and generally bedridden. My father lived with us and visited her as often as he could, several times a week: the NH was only in the next town over. They had been together married for sixty four years. They spent time together with my Dad doing most of the talking, but unfortunately for him he was quite deaf, and when my mother ventured to say one or two words he missed them and would ask her to repeat what she said, which she never did. This went on for a few years, Then my father died suddenly while visiting my sister in the next state. I wondered at the time whether I should tell her, as you seem to be wondering, but decided that because they were so close in life she really ought to know regardless of the emotional consequences. So I told my mother a few weeks later and she stopped eating for a week, but then resumed as she had been, and lived for 1- 1/2 years more. I believe she understood what I told her about him passing. I don't think that my telling her really changed anything for her as I would visit her at least once a week. She must have missed him, but never showed it.
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Hurtbabygirl-I just want to offer my complete empathy with what you are dealing with as I experienced something very similar and there is truly no perfect answer as each situation is sensitive and extremely difficult. I think based on your mother outlook would be a factor. In my case, my mother was in palliative hospice (meaning she was being treated for an incurable illness but timing was really unknown - major roller coaster of emotions). While she was in a brief stay at the facility (she would go in for a week at a time to regulate medicine when pain increased to find the right dosage - no more or less than required to manage). At the same time my step father of 25 years (my dad passed when I was a child) developed some foot numbness. I convinced him to get that checked out while I was in town and mom was being cared for. It was determined that he needed minor surgery to open a clot below his knee so was hospitalized. Surgery went great and they decided to keep him a few nights as hurricane Irma was moving through Florida and they knew his situation at home with limited caretakers. I struggled between who to spend my time with but since moms situation was more serious and I have always been extremely close to her, I stayed by her bedside until they told family we may have to leave to make room for other hospice patients in facilities near water. My wife called and pleaded with me to go home for that weekend (had relocated for work in Alabama) as she feared devastation. With much resistance and heart break, I secured their house and left. In a sudden turn of events and the night before my step dad was being released, he called at about 11 pm saying he thought he might be dying and the nurse took the phone and said they were doing all the could. A few minutes later the doctor called and said he passed. To this day we don't have all the answers as they said there was a clot in his stomach and records that I studied showed he had been asking for help since early that morning due to sudden pain. I will forever live with guilt of leaving. My three siblings insisted I be the one to tell mom and it took a few days to get back due to impact on the state and airports were closed. One of the hardest and scariest things I have done is to tell my dear mom as she laid so helpless that her husband had passed with no warning of this coming (simple surgery). I feared she would have a heart attack or give up right there. We had a pastor with us and it was awful but we pulled through. She kept wanting to see him but never had the strength to go so let me say good bye on her behalf and make the arrangements. Quite some time later I was checking her messages at her house and she had left several to him asking why he hadn't come to see her so we were unaware that she was looking for him as she assumed he had been released from the hospital (this was before she knew). In our case and not having any timeline of what to expect for mom, we had to tell her as she would continue to think he abandoned her as she was still in an awareness state of mind. We lost my mom 8 months later and my heart is as broken as day one so I hope and pray to move forward one day with finding peace and realizing the blessings still around me. All of this just compounded an already overwhelming situation. I am sorry for the long post but just wanted you to know that you are certainly not alone.
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I think the best and kindest way is to say something like he is visiting a friend or is out playing golf, etc. It will pass if you say something lightly about where he is, or he is working, whatever. Then redirect. Telling her will either make her horribly upset and do harm or cause total denial or otherwise have a negative effect. Once she has been redirected and given some light answer, she will move onto the next topic. This is normal and will always continue. What you say really isn't sinking in. Do NOT feel guilty or upset - it is the kindest way to tell her. She has no sense of time. I have seen this done time and time again with people and it seems to work. Listen to her experts - they have experience with this.
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I'm so sorry for what you're going through. Don't forget to be kind to yourself, which sometimes just has to mean doing what you can reasonably cope with rather than meeting some impossible standard of ethical perfection - especially when there isn't a right answer that will satisfy everyone.

A bit of a rewind: did your father visit your mother in the memory care unit before he was admitted to the SNF? What order did things happen in? I ask so as to understand what kind of routine your mother is used to, and what layers of memory might still be accessible to her. Was she aware that your father wasn't well? - Come to that, was his passing away expected by anyone?

And, how long had they had to live in separate places before she took to her bed and he was admitted to the SNF?

Starting at the default position: a wife has a right to know where her husband is, including if he has passed away. A wife with dementia has not lost that right. It is just very much harder to gauge what information she can handle and how to help her handle it.

Whatever conclusion you come to about what to tell her, how, in what way, and when, and how many times if need be (again, I'm so sorry for your situation) - I repeat, Be Kind To Yourself. It is all right to be upset in front of your mother, that is only appropriate. It is all right for your mother to be upset about losing her husband, that is appropriate too.
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I would tell her when the doctor, in writing, says she can go home, then it will be considered, until then she cannot go home, you will let her know when you get the letter. As far as telling her about your father's death, I would just say that he is living somewhere else due to his health issues.
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We all have different reality filters. I've noticed that the kids tend to project their values on to their parents, rather than remember what the actual stance of the parent is. Regardless of state of mind, I personally would certainly want to know where and how my husband is... and if he died while I was incapacitated, when I was aware enough to ask, I'd prefer an honest answer, even if it's horrible news.
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I'm sure as caregivers, we all understand the importance of "validation" it's a process of active listening, remaining in the moment and attentively responding to the need accordingly. Under the circumstances mentioned, it is imperative to remember that "decision-making" can be difficult and personal reflection as well as professional advisement is necessary. Emotionally, this can be more heart-felt for family caregivers. Moreover, professionals in this particular field can built-rapport with patients, relate to both sides of the situation due to prior experiences/observations as they work. It will at most times, come to the best interest of the person's well-being, considering how it will effect them from a holistic point of view. As a caregiver experiencing the process of "Grieving" it can take years to be fully at peace, so communication, self care and using the resources for support is beneficial as far as "endurance" in this journey of care. Prayers and blessing to you.
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There are many good answers posted. My own inclination would be to speak the truth. Have the pastor and maybe the doctor present. Consider presenting her with a momento that was your dad's, or that had special meaning for them. If after a few days it doesn't seem to sink in, use one of the other many strategies mentioned. You then have tried to have a conversation. Good luck, my sympathy to you and your mom.
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I can sympathize with you, it's a tough one. My uncle passed away and my grandmother, who had dementia, would ask where he was, why he hadn't visited. In the beginning I thought being honest was best. I told her three times and each time, the impact of sudden loss, panic, pain... After the 3rd time, I vowed never again. I told her he was out of town. It worked.
For the care giver, we want to be honest, treat with dignity and keep them, even for ourselves, a little bit connected. For the victim of Dementia/ ALZ, it's hearing the dreadful news for the first time and it hurts.
Mu suggestion is not to tell her. The kindest thing to do is protect her from emotional pain, including the death of her husband. She is in no state of mind to accept and process. I hope this helps, I know it's hard for you to hear her ask where is he, and it's a heartbreaking moment, but hang in there. Time does help for you, and for her, in this case, luckily, she doesn't have to remember and carry her grief.
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I can advice only from my experience. When my dad passed my mother accepted his death quite well. She was involved with the planning of his funeral and attended his funeral. My mother would sometimes forget, and I would remind her as gently as possible, that dad died. He is at peace with God. My mother is a religious woman, and her faith has helped her through many trials and tribulations during her lifetime. I still to this day tell her the truth about everything. Her son, my brother passed away three years ago and I remind her occasionally of his death. She also went to his funeral and handled it very well, and if she gets upset, that is ok, it is part of life. I was always truthful to my mom and I will continue to be truthful to the end. Hospice is not always right, you know. You know your mom better than any outsider. Why not make your own decision about your mom, and be content with that decision.
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Pray TELL! Your responsibility is to tell her. As a wife, she at least deserves to know and grieve. Who are you to deny that? You will have to remove yourself from the equation and do what’s right! If she decides to follow him, then it’s her choice. By not telling, you are denying her. Leave the consequences to the power above.
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Your questions touch my heart, as I experience these issues every day, too. I am so sorry for your loss and that your mom is so lost.

I do agree that telling her will likely hurt her a lot, and she will grieve, at least for a while. And then she'll forget and ask again, probably, where he is.

I know this because my brother died in 2014 -- and Mom was right there when he died. They had lived together more than 40 years, after my father got very ill in the mid-1970s and then died. But, my mother kept asking how Jim was doing -- and so I told her that he had died. She was shocked and hurt that she did not even remember.

But then, a few days later, she forgot. When, she asked about him again, I told her he was doing fine, that he wished he could see her, but that he could not travel. She is satisfied with that.

We have put up pictures of our family -- my brother and sister, and Mom and Dad together many years ago, and pics of family gatherings and the grandchildren and great-grandchildren. She loves these pictures and we can still reminisce with her about her childhood and early years during WW II. But, we try to stick with positive news.

Really, it is up to you. Do what your heart tells you to do.

My motto these days: Be kind, and be brave.
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jacobsonbob Aug 2019
You could also say "Oh, he's about the same"--maybe this would satisfy her. This is what my mother said to her aunt when the latter asked about her sister and brother-in-law (my mother's deceased parents), and the aunt accepted that without further questions.
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People may disagree with me on this but if it were me, I would want to know where my husband is and what happened to him. Your mom married the man and lived with him, sharing ups and downs, raising a family and growing old together. They both were aware that the end was not far away and many couples that spend their lives together pass soon after one goes.
It's all a heartbreaking part of life. Your mom may not want to continue a life without her husband or she might have the fortitude to begin a new chapter after she has the chance to mourn and pay her respects to his memory. That is really not your choice to make for her. The truth may hurt but I feel she needs to know that her husband is no longer with us. Not knowing and being left to wonder why he doesn't come to see her is far crueler than being honest and supportive and allowing her to grieve for him.
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TaylorUK Sep 2019
And if she forgets each day and asks again and has to go through through the pain of loss day after day because each day it is new? Trouble is we don't know whether she will remember and be able to grieve once - surely the best thing to do is to try this out with something else - even something made up "do you remember Mrs Jones Cat tiddleshe died yesterday" or something more suitable - and see if she knows the next day and the day after, if she can still tell you a week later then it probably as you say only right to tell her, if she doesn't remember you telling her where is the kindness in telling her about her husband every day?
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You've had a lot of great answers, and as you see, there are several viewpoints on this question. So much depends on how your mom is, and where she is in her journey of needing 'memory care.'

In general, people who can maintain a coherent conversation for more than a few minutes, know what season of the year it is, and recognize family members even when they don't visit often ... can probably be told about the death of a spouse. And probably they should be told, once or perhaps twice. Don't be surprised if it comes as brand new information the second time.

On the one hand, she'll be upset at the loss, but grieving is natural and to some extent necessary (even though painful for others to witness). In addition, the fact that you are grieving the loss of your father will not escape her notice -- even though she might not recognize that what she's witnessing is grief, or see that it's about your dad.

On the other hand, she probably doesn't need to go through the initial shock and pain more than a couple of times.

What has worked best in the facility where I worked and without my hospice patients who have a dementia diagnosis: Don't lie, but don't tell the unvarnished and painful truth either. Ask a question instead.

"What do you think is happening?" or "Where do you think he could be?" are great answers when she asks where he is, or why he hasn't come to see her, or how he's doing in the SNF. Be careful about your tone, though -- not "What do YOU think!?" the way kids ask each other when they want to make the other kid feel bad. But more like 'hmm, I don't know for sure, what sounds likely to you?'

Sometimes the person with Alzheimers or another dementia will surprise us. "Oh, he's probably dead and I just didn't remember" was an answer one lady gave often, right after saying something like "I can't imagine why my husband hasn't come to see me."

Remember, too, that in your own grieving process you may not be able to be as clear about your mom as you are used to being. Give both of you some slack and don't worry too much about getting this 'right.'

Love and hugs if you want them.

--Maggie
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RedVanAnnie Sep 2019
Asking questions like "Where do you think he could be?" sounds like a great idea. Mom's answers to questions might reveal she has more idea what's going on than was realized. Or might reveal she has no comprehension at all. But I love the strategy.
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IMHO, she has a right to know that he passed.
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A person with Dementia may not understand what "he died" really means. She would recognize the words but perhaps not their signifigance. Let your mother's degree of dementia help influence how you answer. I really liked the advice about asking your mother a question like "Where do you suppose he could be?". Her answer could give you a clue to her awareness and her immediate concerns.
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Very hard on you so early in your grief. I kept to the truth however many times I had to repeat it. But then I hadn’t been advised not to. I think you’ve been given some excellent suggestions re asking your mum and that seems the kindest way to go forward now. Remember to be kind to yourself too - that’s just as important,
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I live in Colorado and I moved my dad here from Oklahoma. The person he asked about was his Mom. Grandma died in 1960 at a time that my dad did not have dementia. I just said she was in Tulsa and that satisfied him because she died that is where she lived. I did not lie because she was buried along with her husband at Memorial Cementary. I could always remember what I told him. I did not elaborate because he would have heard the difference one might tell him she was dead. Tell as much truth as you can.
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