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.

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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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MaryKathleen Sep 2018
Right on!
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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Alzh101 Sep 2018
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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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 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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Five hour drive each way? No do not take her.
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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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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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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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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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Alzh101 Sep 2018
Thank you so much for sharing this.
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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