Both parents with dementia and one passes. Should surviving spouse attend funeral?

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Both parents with dementia and one passes. Should surviving spouse attend funeral?

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Both parents have Alzheimer’s and one parent is currently on hospice. Both live together in a facility and one parent will be passing soon. Since the surviving parent will want to know where the spouse is, I have been told to not say that the spouse died if it upsets the surviving parent. That being said, should the surviving parent with moderate Alzheimer’s attend the funeral of their spouse or might that be a bad idea? We are trying to prepare for the inevitable. Any ideas or suggestions? Have any of you experienced this that could share what you did? Thank you.

Alzheimer's & Dementia End of Life

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Alzh101 I am so sorry for your loss. Dad is released, out of pain. I hope all can go as well as it possibly can.

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Well the impending day came, and decisions were solidified. Although my dad has been released from the grip of Alzheimer’s and his constant pain, the mourning has begun for my mom and the rest of the family. She’s in the late moderate stage and has verbalized that my dad has passed. She however wants to know when she can kiss him again and wants to bring him his favorite snack. It’s heart wrenching to hear her repeat these statements over and over while I’m also trying to mourn the death of my dad. Hospice workers have prepared us to expect the possible decline of my mom shortly after burying my dad. I feel like the sharks are circling in these uncharted waters we happen to be currently swimming in.

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I’m so sorry for your loss and for having to deal with Mom’s confusion as well. Give yourself time and deal only with what absolutely needs to be dealt with right now. You will be dealing with her confusion long-term, I’m afraid, and you and your family will have to “tag-team” so it doesn’t all fall on one person. Rely on your church if you have one, or yiurhusbandyour circle of friends. Sending many hugs.

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Are you happy to be fooled as long as you like the answer better? What happens to trust if you discover that someone has routinely lied to you because they thought the truth would make you unhappy? If you think it's different because you're not old and you haven't got dementia, at what point in your decline do you expect not to care that you cannot rely on what people are telling you?

You owe a person the truth unless you have demonstrably sound reasons to withhold it in an individual's particular circumstances. The person in this case has moderate dementia, is probably not yet at the stage where repetitive questioning has become an issue, and is possibly well able to comprehend that her husband has died. The situation has to be handled with sensitivity; and if it proves distressing for her, or if she plain doesn't want to go, or if it's impractical to give her the close personal support she will need, then there is no shame either in her giving it a miss.

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So ... if you couldn't remember where your loved one is would you rather hear ... they died ... every time you asked or would you rather hear ... (someone) took her to the store/she went outside for a moment/etc.

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My mom had moderate dementia. She knew my brother had been taken to the hospital with a massive stroke & was in a coma. She did not want to go to the hospital and later regretted it (I assured her he was as if asleep & she wouldn’t have been able to talk with him...which helped). In the early morning hours the next day I took the phone call that conveyed my brother’s passing.

After breakfast, my mother matter-of-factly wanted to know what the phone call was about hours earlier (she’d heard the phone ring).

I was not prepared for her reaction. I explained that during the night, her son - my brother - experienced erratic and uncontrollable blood pressure and had passed.

It was as if she’d been stabbed in her heat. She gasped for breath and repeatedly exclaimed, “He died?!!...No!” I had to rush and get a paper bag & ask her to take deep breaths. She was hyper-ventilating.

Two weeks later she went to the memorial service & became emotional when “Going Home” was sung. She understood -in a deep sense-the words.

Three months later, we travelled by minivan to inter my brother’s ashes in the family plot (out of state). After the service, she got down on her knees and kissed his gravestone. She seemed finally at peace - she was quite agitated during the months prior (we waited till late spring to arrange a family reunion following the internment.

My mom died 8 months later. With moderate dementia, she still understood more than I’d have thought after my brother’s death. She kept wanting to know why we hadn’t “buried him” - but once that happened, her mind was able to rest.

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Thank you all for your heartfelt responses. I decided to let the POA sibling make the decision as I’ve made enough up to this point regarding healthcare and what would and wouldn’t be done. I also let my sibling know my wishes to leave her at the facility. We have reached the conclusion that if he wishes for her to come, then a person besides me will be escorting the surviving spouse because I need to mourn and be not be responsible for another person’s safety and welfare. We have agreed to disagree and will attempt to support each other the best we can on our own terms. Thank you all once again for the suggestions and prayers.

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My mom died suddenly/unexpectedly. At that time my dad was still in early dementia stages. I’m not sure how well he understood mom’s passing. Dad lived with my husband and myself for 4 months until we moved him into assisted living. During this time he didn’t ask about mom. He did though when he was in assisted living. Once or twice he was told his wife died and became a bit upset. Over the next 4 years he would occasionally ask where “she” was. “She” being mom. I fibbed and had a variety of answers, hair appt, grocery shopping, lunch with friends. He seemed to accept my answers and would shortly forgot he asked.

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We have rituals like wakes, visitations, funerals, memorial services for a reason. They are familiar social structures to help wwith grief, and realize a LO has truly died.
The process of getting LO dressed. For a woman, getting her hair and makeup done, are part of the ritual. If her memory or ability to recognize the person comes and goes, you might say,
" Someone you loved/cared deeply about has died. We are going to say our final farewell". Use words used in her family for generations, avoid new terms like Celebration of Life. Then, if she asks, tell her who had died, and how many days ago.
Take photos of her with the family, a few group shots or shots from a distance of the casket and flowers, the casket being placed in the hearse. At the cemetery. And get several Memorial Cards.

The ritual will help imprint an important passing. The photos can reassure her she was there to say her goodbye.

For example, she may not recognize her son, but only the very nice blonde man who is so kind when he visits. Even if that is all she has on her good days, she will be more saddened if she was prevented from attending. Her grief will be compounded by mistrust and feelings of betrayal.

Remember, dementia patients have communication stuggled. They do not verbalize all of their thoughts. Why mention a son you know to be alive, and you know you forget when people visit. I is not always an indication that they don't think of that person.

If they are so advanced they are forgetting the death months or a year afterwards. This is when going with their beliefs, rather than re-traumatizing them is the way to go. If there is a day they wonder about the person, then you have the photos, etc. to share with them, comfort and reassure them that they got to say goodbye.

The only exception is if she has a medical condition where the doctors feel the stress of the news would likely kill her. Rarely is that truly the case.

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This is such a difficult journey we are all on and I learn from each and every one of you. Thank you.

When my mom was in the moderate stage her last surviving brother (who we'd visit often, until I had to place her) passed away. When he died, we (5 of us) took her out on the patio away from the other residents and staff and told her "he was sick and didn't make it, he passed away". She stared at us blankly with no emotion as though we'd said nothing. Our family was split on whether to take her to the funeral or not. The family member with the POA made the decision ( with the rest of us objecting) and she attended. At the end of the service she then said, clearly, "Oh, now I understand what you were trying to tell me, My brother died" and we said yes and gave her hugs. she's never said anything more.
My mon was fond of my husband she'd always ask where he was if he wasn't present.When he died suddenly, I was dreading her asking me while trying not to look sad or cry. She asked where he was as she always did and I calmly said "He went home to be with the Lord" she quietly said, "He died" and has not asked about him since. It was just she and I when I told her and I didn't bring her to his services.
So, I think each situation, each family is different and you know your family member best. I think the wording you use is important, simple words, brief explanation if necessary, how many are present when you give the news I think one or two people and not a crowd is best and where the information is given could make the difference in whether they understand what's being said with whatever level of cognitive functioning they're working with.
I will keep you in my thoughts and thank you for reaching out.

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My mil had dementia and 7 years ago her son died and she was told, What a nightmare. Every 5 minutes she would ask about Steve and cry hysterically when told he was gone. So when my fil died 5 years ago (and he was her caretaker in assisted living) my husband and I decided that she would not be told about his passing. It would be too devastating to her. She rarely even mentioned him after that. It was a good decision. Some people thought she should know, but she did not understand and it was not fair to tell her.

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May I say that there is no RIGHT or WRONG answer to your question. You must decide what is best for your parent, and please be at peace with your decision. I chose for my mother to attend my step-father's funeral. As difficult as it was to see her hurting, I believe that was best choice at the time. The funeral made it real to her that he was gone. Later, I chose for her not to attend the funeral of her brother and later of her son. She enjoyed when they called or visited her, but she didn't ask about them. I believe not attending their funerals was the best choice at that time. Please don't allow anyone to make you feel guilt over whatever you choose.

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Our Mom had moderate to severe Alz when dad passed away in the house under hospice. She had become extremely paranoid/angry/delusional, when all the medical equipment was suddenly brought to the house for dad. There were many family members, there to help, not all at one time, mainly to keep mom under control.

Dad passed after only eight days under hospice care. At 1am, after the hospice nurse had been called, my brothers, sister in law and I, were at a loss whether to wake mom and tell her that dad had passed away. The hospice nurse told us to wait until she departed the house.

Mom went completely off the rails, screaming at us all, "you are all lying to me, you all get out of my house, that is not Bob, what did you do with him", screaming. The whole episode was SO disturbing to everyone, we all attempted to talk her down, one at a time, to a calmer state, but nothing worked. Then the funeral home people showed up....it did not get any better.

My family and I never had a quite moment to be with dad after he passed. And all we had in front of us was the care for our mother. The next few weeks were nothing but quickly learning how to deal with an Alzheimer person that had become paranoid/delusional/angry. To this day, she will ask, "where is your father! ".

My suggestion to you is, NO. They most likely will not remember the entire situation. You can believe that they would want it like this or that, save them and yourself from anything like we had to go through, and we still have to deal with.

It's so sad.

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You are 100% correct to think in this way. Why ? Because Your Brain is functioning perfectly well hence You are thinking rationally, but unfortunately Both Your Parents Who have alzheimers are no longer capable of thinking rationally hence my answer to Your Question is a definite NO. Why upset the surviving Parent, and when Parent number one dies do not tell the surging Parent. Just say Mom or Dad is gone to visit Uncle Paddy or Who ever. If in a few days or a week You are asked why isn't Parent Home then say Mom or Dad decided to take a few extra days. It's not a lie when You
are trying to protect Your Parent from grief and sadness and
it is done out of pure love.

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See how the surviving parent is as the day gets closer to the funeral. I do have to agree that people with dementia (Alzheimers) don't fare well with changes. Even transporting someone for a doctor's appointment or changing something in their room can cause confusion. You know your parent best, so make the decision you feel is best for them. If people fuss, let them know that both you and your parent made this decision together—they don't have to know the details, since you are your parent's voice and heart right now.

I pray that all will go as smoothly as possible and that your parent will not have to endure any extra suffering. Many of us have been down this road with our parents and it is not easy, but God can give grace in these special times of need.

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Dad had mild dementia, but Mom's was rather progressed. He understood completely that Mom had passed, but he was thrilled to see all the family and friends at Mom's funeral. His spirits were lifted. Unfortunately, he fell and broke his hip and joined her a week later. To see his joy around friends and family was a great blessing for all of us.

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Just went through that exact scenario. Dad died at home on hospice. Mom has moderate dementia. When he died she said she didn’t want a wake...that’s not what he wanted. We knew exactly what he wanted which DID include a wake but she said if we do it she’s not coming. My brother and I made the arrangements according to dad’s wishes. When we were gathering photos for the photo board she had a meltdown. Said we shouldn’t be planning a big party with all this stuff, etc., we ended up sneaking all the albums out of the house and doing it somewhere else. When the day came she just said I need help deciding what to wear. So we brought her. She was good during the service, sort of in a fog, but courteous and polite to visitors. It’s been almost 3 months and she doesn’t remember anything about it. She doesn’t remember where he died and some days doesn’t even remember he’s dead. But sometimes she will ask “was I there” and at least I can say yes with good conscience.
I don’t know the extent of the surviving parent’s dimentia, but if they didn’t have the disease they would want to be there so by bringing them you did what you know they would have wanted. BUT if you feel it will really upset them I see no harm in not sharing the bad news. Sometimes little fibs are for the best. I should add that my parents were both at home and it would have been impossible for me to make excuses as to where dad is day after day.

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You must do what seems right firstly for your surviving parent and after that for the family.

I realise this does not answer your question, but only you know whether on balance attending the funeral will help your parent come to terms with what has happened (however imperfectly and temporarily), and how able your family will be to give him/her practical support on the day; and you will only be able to decide that *on* the day, given the unpredictable fluctuations in mood and coping ability that you're likely to be having to deal with in addition.

I hope slightly more helpfully, I would like to point out a number of things that you ought not to worry about:

having to decide on a fixed plan right now
other people's being huffy about changes in plan if they are necessary - let them huff
other people's not knowing what to say to a mourner with Alzheimer's
other people's opinion on whether or not your parent should be present

This is for your immediate family alone to decide on, and you should do so without anxiety or apology. You will be doing your best in extremely difficult circumstances and no one has any business to second-guess you.

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Right on!

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I say certainly, although clouded by dementia, your surviving loved one is still in there. Two questions for you. Will you be upset when your loved one passes?? Will you attend the funeral?? My Mom attended my Dad's funeral, I don't think the cause of death is relevant, and she received the compassion from friends and family without any ill effects. Most likely that short term memory will fade quickly anyway.

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Our Dad passed four years ago at the age of 75 after a six month battle with Lukemia. He was fairly healthy until this unexpected diagnosis. His only sibling, my aunt ten years younger than him, had been diagnosed four months prior. She passed four months after Daddy. Our Mom had suffered from Dimentia for maybe 6 years. She would repeat sentences and get somewhat confused but knew everyone. We never questioned whether or not to take her to the services. After the funeral she would tell people for the next three years “Do you know my husband died?” She would cry on and off in the months following Dad’s death. I feel in an odd way that the Dementia helped in her coping with his death. Her mind didn’t stay focused regarding his passing and would wonder in other directions. Mom passed a year ago when she stopped eating. I guess this is part of the disease. She was confused and forgot things but still knew her three girls. Mom was 84 blessed years old. Mom is with Daddy...and that’s where she wanted to be. Like others have stated, I think your decision has to be based on the mind of your parent. We also didn’t have to deal with the travel that you are facing. Praying for you and your family.

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Thank you.

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We unfortunately had this happen this past Thanksgiving. My Dad lived next door to my Mom in the skilled nursing facility and my Mom is in assisted living. Mom has moderate Alzheimer's. Every day they would take Mom to visit Dad first thing in the morning. She actually handled his passing better than we ever anticipated. It wasn't sudden - Dad was on hospice for a bit - so not sure if that helped? Mom wanted to go to the funeral, etc. so we did take her. She definitely had minor agitated episodes but surprising to us mostly stayed "in the moment". She of course kept asking if we should check on Dad and we would gently remind her that he had passed. She'd then repeat the series of events leading up to his passing - like a loop she had to go through. The events would change ever so slightly each time until she's now landed on her "version" of what happened. It's not accurate but it's what she's got in her memory bank. I wouldn't correct her because I felt like it was something she was obviously working out in her head & if I contradicted her it didn't make a difference. Not sure if that's the best thing to do but it worked with my Mom. The days & weeks following my Dad's passing were challenging because her routine had been upset. She got agitated more from that than the fact that he was gone. So I spent a lot of extra time with her and had other relatives visit her so her mornings weren't so alone. She called me so very, very much with the same questions, concerns, etc. A lot of paranoia kicked in too with the handling of my Dad's possessions. She kept thinking things had been stolen...not just from the retirement facility staff but from us kids as well. That was hard to handle but I just kept trying to be gentle with her. It's been 10 months and she's actually not doing too bad. She doesn't talk about him too much unless we happen to be at the same funeral parlor for someone else's passing and she usually will just say something like "poor Dad - I think he's at peace now". I think she's remembering him on hospice? So, looking back I think it was the right thing to do for my Mom. If she was in later stages of Alzheimer's we may have made a different choice. Hope that helps but let me know if you want any further info. Peace

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My Mother passed with a Dad who also had Dementia..and we did not take him to the Funeral nor discuss this with him it seems only to add to any further confusion,
..Then my Dad was alive when his caretaker son, was in the room with him,after having a seizure and dying the next day...……..after prying the door open,
..as I found them togethter with Dad blind and demented thinking his son was sleeping ……….I found him after many hours..so my brother had a cell phone but was incapacitated...…..to add insult to injury Dad had to go to a Nursing home after simultaneously being admitted to a Hospital with his son five rooms away in Palliative care..no no no as agreed in NYTIMEs article whether to tell a person suffering from dementia that his son caretaker died...I simply would tell Dad that my brother had gone to Italy for a vacation...as I was around him for the next six months until he died of a UTI admitted to hospital from NH with
TOXIC SHOCK... don't know about this..ill have to live with this until I die.

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I’m so sorry for your losses. Thank you for sharing your experience.

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I see no need to bring the surviving spouse to the funeral. Not only will the trip be stressful but all the people will be confusing and stressful. Not to mention every time someone says they are sorry for the passing of "Stan or Sue" the surviving spouse may react as if the news is fresh and react as if they are learning about the death for the first time.

And getting to that....
Depending on how aware the surviving spouse is I may not even tell them, or tell them once then not again. If asked again where "Stan or Sue" is explain they are in another wing because they have a cold, they are out to the Doctors office, out for a hair cut, shopping...any number of places. There is no need to learn again for the first time (does that make sense?) about the death of the love of their life.

Do not feel guilty about not bringing your parent to the funeral. No one will question why they are not there..and if anyone is so insensitive to do so they do not deserve an explanation as they will not understand the why.
And another side note, do not be surprised if your surviving parent declines quickly after the death of their spouse. Even if they seem unaware of things going on around them I do believe there is a connection that continues and they in some deep spot within will feel and understand the loss.
((hugs)) to you during this time, I do hope Hospice has helped you through this.

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Thank you. I have family members who aren’t quite on board with leaving the surviving spouse back at the facility. Reading these responses is making me think that the attendance of the surviving spouse won’t be a good thing. Ughhh.

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Five hour drive each way? No do not take her.

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If parent will not know what is going on, then don't take them. Five hours is a long time for a Dementia patient. Especially if incontinent. And you will have their care.

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My husband w alz I thought wasn't too bad yet so took him to brother in law memorial 3 hrs away. Sitting in church, bulletin in hand w picture, he asked me why are we here several times. Luckily he stayed composed not like today. My lesson now I always leave him w caregiver & he's happy not being drug around & im happy. Glad the relatives saw him in his state of alz to know was for real. He never had a clue why was going on.

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Thanks for the feedback folks! I neglected to mention that the funeral will be in another state where my parents bought their plots. I guess that’s the monkey wrench that is in the equation because bringing the surviving spouse on a 5 hour “trip” each way, there will be no respite for me nor a place to bring my confused and possibly agitated parent to. I would be the one responsible for bringing the surviving parent while I’m trying to mourn and hold it together. I’m afraid I’ll snap under stress and pressure because if surviving parent goes, there will be lots of things going on, staying in a strange place, being around people that aren’t familiar with therapeutic fibbing, etc. On the flip side, it is still their spouse and each would want to honor the other if dementia wasn’t part of the equation.

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When my sister and I lost our father, initially our bedridden mother didn't want to go to the funeral (which was a 7 hours' drive away from SW OH to central PA), so we were relieved because of the logistics of getting her there. Later on, she seemed to want to go but wasn't adamant about it. Even though she didn't go, she sometimes believed she had been there. However, just a little over a year earlier (while both parents were still living in PA) she had been to the funeral of her SIL, and because this was in the same place as our father's funeral with many of the same people who would have attended, we suspect she simply confused the two events.

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My competent stepdad passed, my mom with dementia had just been accepted to hospice. My mom was still mobile but extremely prone to anxiety and agitation. No she did not attend stepdad's memorial service. Had she had an outburst during the service that would have been very difficult for everyone. If it were a funeral with open casket that, I would think, be even more difficult for all.

Following his death, mom's behaviors escalated to the point that she was kicked out of the memory care facility. Was it due to his death and no longer visiting her, having lunch with her on a daily basis? Very likely, but there is no way to know for sure. Mom could not be reasoned with, barely verbal and never would have been able to figure out what had happened. Mom passed eight months later. So have a plan B in place for surviving spouse.

When mom was evicted hospice recommended a smaller care home where all residents had been kicked out of their previous facilities. There was a better care ratio and was even cheaper each month. Though she did need a private caregiver on and off to be a companion to her which helped with her behaviors and that was an additional cost.

Short answer? No surviving spouse should not go to the funeral. In foresight you should have a plan in place in the event that the surviving spouse experiences the increased agitation that mom did.

I am very sorry this is happening to all of you.

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Thank you so much for sharing this.

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When my FIL died, my MIL with dementia went to the funeral. They were in their late 80s.

The night before there was a gathering where many family and friends were in attendance.
She seemed to enjoy being with everyone although she was confused and upset when she would see FIL in his casket.
As long as she didn’t spend too much time by the casket she seemed fine. By the end of the evening she seemed to accept the situation. She may have simply been mirroring our behavior.

As she was on hospice and very ill with cancer she was in a wheelchair so we were able to position her where she was comfortable. We had one family member who seemed to think it was his job to make her understand her husband was gone. After we got him on board, she was fine.

The next day she went through the funeral service without a problem.

At the graveside, FIL, a WWII vet, was given full military honors. It was very touching when she unexpectedly stood and saluted when taps were being played. It was so spontaneous and is something our family will never forget. The honor guard were visibly moved by her response when they presented the flag. We all felt so proud of her.

Afterwards we had a meal at FILs Church. She was fine there as well.

if we had experienced a problem, a couple of us would have taken her back to her NH. It wasn't necessary.

She died one month and one day after FIL.

You know your parents best. It would have never occurred to us not to take her.

I think in some ways it was harder for me to take my mother at 94 to her son’s funeral. She didn’t have dementia. With dementia the heart gets a bit of respite. Without, all is perfectly clear.

You might find comfort in having your parent with you. I think my inlaws did. But do take time for yourself as well. No matter how sick they are or have been, it’s tough to lose your parents and it’s also tough to lose a spouse. No amount of planning can get around that.

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I am so sorry. I think it really depends on the personality of the surviving spouse and the degree of dementia. If the surviving spouse is prone to anxiety and panic attacks, I’d say no, don’t attend. But, my FIL with dementia was confused but very calm and agreeable.

Understand that even if the surviving spouse does attend, chances are they won’t remember having been there or that their spouse has passed. It might also be a good idea to have someone there to rely on in case the spouse needs to go back to the facility during the funeral or needs anything else.

Once the funeral is over, I agree that you should not constant,y remind the survivor that their spouse has passed. They won’t remember what they were told. Then is the time for the Therapists Fib. “She (he) will be right back.” Etc.

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Both parents with dementia and one passes. Should surviving spouse attend funeral?

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