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Looking at your profile and previous postings, it looks like your mom is in her 7th year of dementia, takes Seroquel and has double incontinence.
Who will care for her and provide transportation to the funeral events? Is mom okay in large, noisy, confusing and unfamiliar situations (my mom wasn't).
Consider that YOU need some time and peace to grieve YOUR loss.
Thank you for replying. My father hasn’t died. I just see him declining with age, pain and caring for my mom. He won’t change anything as far as her care and I’m just concerned that if he passes first, if the spouse, my mom, should attend a funeral or not.
Only the family can make this judgement. They know the person involved, are familiar with his or her reactions to grief, to being out of facility, and know if they have enough minimal understanding. Knowing your relative gives you the ability to assess what MIGHT BE best, because in the kingdom of Dementia nothing is a certainty. I wish you the best in making this decision.
I would say if Mom is in last stage of Dementia she will have no idea of who he is or what's going on. I would leave her with a sitter. You will have enough going on without worrying about her too. And it may all be too overwhelming for her anyway.
My MIL did. In her circumstance it was the right thing. She also had double incontinence and required one change which SIL and I managed w/o a hitch. Could have gone the other way but didn’t. She was no more upset than she would have been w/o dementia but she was very accustomed to rituals, even provided a Norman Rockwell moment when she unexpectedly stood from her wheelchair and saluted the flag while taps played at the grave site. A moment I will never forget. She died a month and a day after FIL.
And you are right, your mom may be the patient, but your dad could go first. In fact MIL was the patient until about six weeks before his death. He was overmedicated in an ALF, lost consciousness and while in the hospital fell and did not recover.
I would have a small, immediate family service that Mom could attend (even if it's at her nursing home if she's in one). She deserves closure if she knows who Dad is even a little bit.
Have the "official" service at another time without her.
It would depend on how advanced her dementia is. If its advanced being at a funeral surrounded by strangers could be overwhelming for her. It can also cause setbacks. A person who was able to feed themselves and communicate verbally will often lose those small independences when their routines are disrupted or there's a traumatic event. Consider these questions for your mother attending your father's funeral.
1) Is she incontinent? If so how will you change her diaper in the funeral home? What if she's bowel incontinent?
2) Has she lost short-term memory? Is her anxiety bad? Will she be overwhelmed by a traumatic change in her daily routine?
The OP adds, "My father hasn’t died. I just see him declining with age, pain and caring for my mom. He won’t change anything as far as her care and I’m just concerned that if he passes first, if the spouse, my mom, should attend a funeral or not."
Honestly, don't look for trouble. Your father may outlive your mother, who knows? Take life one day at a time and cross this bridge if you get to it. See how your mother is acting ON THAT DAY and go from there. Dementia changes like the wind, from one hour to the next. So the advice you get right now is subject to change by tonight. That's the nature of dementia. By the time dad passes, mom could be in a wheelchair making the whole subject a moot point anyway, b/c how would you get her to the cemetery in a wheelchair?
When my aunt with advanced Alzheimer's was schlepped to her husband's funeral, she sat there like a deer in the headlights. She had no idea where she was or WHAT was going on. It was actually ludicrous her children had thought it a good idea to take a woman in HER condition to a FUNERAL in the first place. None of them could focus on the funeral b/c they were paying too much attention to mom in the front row who was picking her scalp the whole time, looking dazed and confused, worrying if she'd be busting out in hysterical tears at any moment. She didn't. But they didn't know that.
That's dementia. A no win situation for all concerned.
It depends. Is this person yelling? Is this person talking about someone killing one of thier loved ones where everyone can hear? Is this person just jibber jabber outloud a lot? If so, then this person does not know thier loved one passed away. Maybe it's better to not.
However if this person is quite most of the time and not doing anything in the above mentioned then, yes. The person should go.
We did not have a funeral for my 85-year-old father. It was, to a great degree, because of my mother’s dementia.
She was not able to grasp the concept of death. She was very angry that my father “left” her, without even saying goodbye (she only visited him in the hospital twice during his 2-week stay; very hurtful to my dad.) She continually asks everyone where he is, not able to grasp that he is not in his body anymore. She is convinced that if he had not been cremated he could come home—and tells everyone so. EVERYONE. She asks everyone why my dad would do this to her, and why he can’t at least call? Couple this with an obsession with sexual comments, and well, I did not have it in me to arrange a funeral. I am also from 11 hours away, and had already been there for over two weeks, with dad as he finally died after a two-week hospital stay, and then a short stay in hospice. I was totally spent. Dad requested cremation and no funeral, so this made the choice a bit easier.
My mom is not just incontinent and detached, she presents in some very difficult ways. Six months later, I still think this was the right decision. From a selfish perspective though, I will say that I didn’t want my once-wonderful mother paraded in front of past friends and family members the way she is now. Our extended family is a mess anyway; I didn’t feel any great obligation to do this for them. My siblings and I are choosing a final resting place for my dad’s remains, and plan to have a very, very small memorial at home soon, perhaps six or seven people total. I am devastated this ended the way it did, but it is what it is.
People aging with all kinds of issues deal best with stable and consistent routines. Every time I think this is a good idea, go to a family wedding, celebration at a restaurant, it backfires on us. We have great intentions, that they want to see family they have not seen, or go out for something different, but this is not true. Going to a funeral is stressful for most of us, let alone people who are disrupted and uncomfortable in new and strange places. Consider instead having a small celebration of life at the place of residence with immediate family instead.
My mom passed unexpectedly last year and my father was there for both the funeral and wake. Oddly enough, he knew exactly what was going on, and even talked with his friends about the old days when they came to pay their respects. Long story short, the one thing my father remembers even now is that my mom is gone. He blows a kiss to her picture every night before bed. We talk about her and I know he thinks about her. Just last week he mentioned the funeral and cemetery where she is laid to rest. For us it was the right thing to do. I’m glad we did it and that my dad got closure.
When my dad died in 2018, I took my husband who has dementia to the funeral and I still regret that decision.
With people with dementia, you should not base their past behaviors to make your decisions. You should base their current behaviors, which is unpredictable, if not unknown. Anything could happen with them.
So, I would say avoid taking someone with dementia to any funerals.
Is her dementia advanced to where she will not even know if her husband has died? If he stopped being the one taking care of her, would she understand why? Would she understand why all these people were gathering or would the extra people and unusual activities just confuse and agitate her So much depends on her level of comprehension and her adaptability to changes in routine.
I have been to 2 funerals where there were elders with dementia in attendance. They kept asking what was going on, what are they saying, who is that — and not in a whisper because they couldn't whisper (or hear well) any more — even though there were plenty of familiar "handlers" sitting with them. Sitting far back wasn't a good solution since it made it even more difficult for them to see or hear anything. Their talking was very disturbing to the others in attendance, because many were not aware they had dementia and didn't know anything about dementia, so were not very patient with the chatting. These LOs were not spouses or parents or adult children of the deceased, but siblings.
First I want to respond to your follow up that your Dad has not passed yet you just see it as a great possibility as caretaking for your mom is wearing on him. It sounds like you have given in to his insistence which I totally understand. Perhaps you should ask him as her sole caregiver what he thinks. Let him know you are concerned about what to do should he pass before her and have a discussion with him about what he thinks as the person who knows her best, now. It might be a good opening to suggest an aid who would then be someone she knows and trusts to help care for her should something happen to him, even something like a fall or medical issue that just takes him away for a period of time, it would be so much easier on you and on mom knowing she was safe and cared for, that there was someone who could focus simply on her.
Now to answer your real question, it depends and it’s not a decision you can make now because it depends so much on where she is at that time. It may even be a day of decision but here is where my response above meets your question, if you can make it happen that she has an aid or someone who helps care for her on a regular basis that she’s comfortable with that person should take her and be in charge of her. If she isn’t dealing well that person can take her home. Short of a professional who has been helping to care for her an extended family member or friend who knows her best and she knows should ideally be asked to take on this role of being solely in charge of her. A huge consideration here is you and any siblings if you have any, your children and immediate family who need the time and space to grieve without having to worry about the care of your mother. That’s my opinion anyway and I think you are smart to be thinking this out already, it gives you time to set this up along with contingencies and short of that you will already have the bones of a framework on what to do in the moment should it ever happen. I hope it does not.
No. Absolutely no. The family and attendees need to focus on the supporting each other and honoring the one who passed rather than watching your mother's total confusion and possible rerunning pain which is often almost unbearable to healthy people.
Ordinarily I would be stunned at such a question, but I take in consideration how being exhausted and emotionally whipped disables clear thinking. I'm sorry for what you are going through but it would be pointless, and in some cases cruel, to put a bewildered lamb through this experience.
Depends on your moms stage and temperament at the time. If your dad passes a year from now, your mom could be in a totally different stage of dementia.
There have been four funerals that have taken place in our family in the last 12 yrs. The first funeral was my husbands aunt. We took mom and she kept saying loudly that she was hungry and want to go to lunch....right in the middle of the service. The second funeral was my dads and my mom was acting strange but we didn't know it was dementia at the time. Mom showed up at dads funeral wearing a leopard print dress and we were shocked. Now we know she wasn't firing on all cylinders at the time. The third funeral was my troubled niece who my mom hadn't seen in years and never asked about. We thought it would throw mom over the edge to know that her granddaughter had passed so young and the circumstances around her death, so we did not tell her and did not take her to the funeral. Family was not happy that we did not tell mom, but they aren't the ones caring for mom, so not their call. The fourth funeral was my grandmother....so mom's mom. We told her and drove her out of state for the funeral and stayed in a hotel. Mom kept asking why we were there. I couldn't leave mom in the hotel room while I showered. Had to have another family member come in to sit with her so that she wouldn't walk out the door. People that knew mom from when they were kids came up to her and she didn't have a clue who they were. It was awkward. My mom showed no emotion that her mother had passed. I suppose it was a blessing that my mom didn't realize that her own mother had passed, but it was extremely sad for me to watch it play out.
So, really it depends on your moms temperament at the time of your fathers death as to whether it makes sense for her to attend. If you do take her, you will need help managing her. Another set of eyes to watch her and maybe take her to the restroom, etc. You will need time to grieve and "attend" the funeral of your father yourself, so ask a cousin or friend to help you manage mom on that day.
I’ve been told that the first rule of dementia is “nobody dies”. Once they get to the point where they aren’t in control of their faculties, it does no good to try to bring them to our reality. Telling them if the death of a loved one only upsets them and 5 minutes later they don’t even know why they were crying (if they know they were). If they hear it over and over, they are experiencing it for the first time each time. My mother keeps talking about my dad who passed 12 years ago as if he is just not home now. We let her. There is no reason to upset her again and again.
If the person with dementia can "remember" their spouse and miss him/her, then attending the memorial/funeral can be a source of comfort for the loss. If the person with dementia can not remember his/her spouse or has advanced dementia, it will only be upsetting to that person and others at a ceremony intended to help people remember and find peace with the death of a loved one,
1. What stage of Dementia? Someone who is in the early stages, and Dementia is the only issue, they want to attend, and have not lost their rights in court, of course you will honor the living spouse's wishes. And, I would also say the spouse should be involved in the funeral planning, to the level that he/ she wants to be involved.
2. Other factors:
A. Does the living spouse need doctor's clearance to attend?
B. Would it create an extreme physical, mental, emotional hardship on the living spouse? If spouse is estranged and living in another state or country, then maybe it would be better if the living spouse "attends" by watching a Zoom recording or live feed of the funeral. Oftentimes now, churches have started offering this as part of the program benefits since it can protect many from COVID risk.
C. Physical hardships might include that it is difficult or nearly impossible for the living spouse to travel by car, plane, train or medical transport - or - someone who falls asleep very easily due to being heavily medicated.
D. If the living spouse is prone to verbal outbursts of rage against the deceased spouse, and this would disturb other family members who would attend, maybe there are alternatives.
Early stages of dementia many people seem very normal most of the time.
IF you have a "wanderer", you may have to assign one person, or two, to stay with your living spouse person so they stay more protected.
Caesi Bevis (Healthcare) Crisis-Coaching "join our new FREE FaceBook group" Search under "Crisis Coaching Global Community Support"
Familyfour: As you've stated that your father has not passed away, while you've posed the general question, let's consider the fact that you really don't know what will occur. The facts as they stand are that mother suffers from dementia. Whether an individual with dementia should attend their spouse's funeral when such TIME COMES involves many variables, e.g. what is the stage of the dementia?, how far would the individual have to travel? and many other questions.
The year before mom 86 came to live with me, I picked her up and brought her over for Christmas afternoon with the family. She seemed to enjoy it for a couple hours then became increasingly agitated when we had to change her soiled pullup, and her shirt which had spilled food on it. Soon I took her back home and got her settled. The next day she was very upset, called another family member telling them she had just come from my husband's funeral the day before. She was beside herself! This wasn't even a funeral. It was a Christmas get together. And my husband was there alive and well. As others have said, just being in a group of people may be too much for her. Only you know your mother well enough to make this call.
The funeral is for a celebration of the deceased individual’s life. If she is not well enough to understand (and retain) this and/or could destroy others’ ability to remember and celebrate his life, it is not appropriate for her to go.
This could turn into a house of horrors for your mother or other funeral attendees.
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Looking at your profile and previous postings, it looks like your mom is in her 7th year of dementia, takes Seroquel and has double incontinence.
Who will care for her and provide transportation to the funeral events? Is mom okay in large, noisy, confusing and unfamiliar situations (my mom wasn't).
Consider that YOU need some time and peace to grieve YOUR loss.
Knowing your relative gives you the ability to assess what MIGHT BE best, because in the kingdom of Dementia nothing is a certainty.
I wish you the best in making this decision.
In her circumstance it was the right thing.
She also had double incontinence and required one change which SIL and I managed w/o a hitch. Could have gone the other way but didn’t.
She was no more upset than she would have been w/o dementia but she was very accustomed to rituals, even provided a Norman Rockwell moment when she unexpectedly stood from her wheelchair and saluted the flag while taps played at the grave site. A moment I will never forget.
She died a month and a day after FIL.
And you are right, your mom may be the patient, but your dad could go first. In fact MIL was the patient until about six weeks before his death. He was overmedicated in an ALF, lost consciousness and while in the hospital fell and did not recover.
You will know what to do.
Have the "official" service at another time without her.
A person who was able to feed themselves and communicate verbally will often lose those small independences when their routines are disrupted or there's a traumatic event.
Consider these questions for your mother attending your father's funeral.
1) Is she incontinent? If so how will you change her diaper in the funeral home? What if she's bowel incontinent?
2) Has she lost short-term memory? Is her anxiety bad? Will she be overwhelmed by a traumatic change in her daily routine?
Honestly, don't look for trouble. Your father may outlive your mother, who knows? Take life one day at a time and cross this bridge if you get to it. See how your mother is acting ON THAT DAY and go from there. Dementia changes like the wind, from one hour to the next. So the advice you get right now is subject to change by tonight. That's the nature of dementia. By the time dad passes, mom could be in a wheelchair making the whole subject a moot point anyway, b/c how would you get her to the cemetery in a wheelchair?
When my aunt with advanced Alzheimer's was schlepped to her husband's funeral, she sat there like a deer in the headlights. She had no idea where she was or WHAT was going on. It was actually ludicrous her children had thought it a good idea to take a woman in HER condition to a FUNERAL in the first place. None of them could focus on the funeral b/c they were paying too much attention to mom in the front row who was picking her scalp the whole time, looking dazed and confused, worrying if she'd be busting out in hysterical tears at any moment. She didn't. But they didn't know that.
That's dementia. A no win situation for all concerned.
However if this person is quite most of the time and not doing anything in the above mentioned then, yes. The person should go.
She was not able to grasp the concept of death. She was very angry that my father “left” her, without even saying goodbye (she only visited him in the hospital twice during his 2-week stay; very hurtful to my dad.) She continually asks everyone where he is, not able to grasp that he is not in his body anymore. She is convinced that if he had not been cremated he could come home—and tells everyone so. EVERYONE. She asks everyone why my dad would do this to her, and why he can’t at least call? Couple this with an obsession with sexual comments, and well, I did not have it in me to arrange a funeral. I am also from 11 hours away, and had already been there for over two weeks, with dad as he finally died after a two-week hospital stay, and then a short stay in hospice. I was totally spent. Dad requested cremation and no funeral, so this made the choice a bit easier.
My mom is not just incontinent and detached, she presents in some very difficult ways. Six months later, I still think this was the right decision. From a selfish perspective though, I will say that I didn’t want my once-wonderful mother paraded in front of past friends and family members the way she is now. Our extended family is a mess anyway; I didn’t feel any great obligation to do this for them. My siblings and I are choosing a final resting place for my dad’s remains, and plan to have a very, very small memorial at home soon, perhaps six or seven people total. I am devastated this ended the way it did, but it is what it is.
When my dad died in 2018, I took my husband who has dementia to the funeral and I still regret that decision.
With people with dementia, you should not base their past behaviors to make your decisions. You should base their current behaviors, which is unpredictable, if not unknown. Anything could happen with them.
So, I would say avoid taking someone with dementia to any funerals.
So, like the other responses, I think it depends.
Now to answer your real question, it depends and it’s not a decision you can make now because it depends so much on where she is at that time. It may even be a day of decision but here is where my response above meets your question, if you can make it happen that she has an aid or someone who helps care for her on a regular basis that she’s comfortable with that person should take her and be in charge of her. If she isn’t dealing well that person can take her home. Short of a professional who has been helping to care for her an extended family member or friend who knows her best and she knows should ideally be asked to take on this role of being solely in charge of her. A huge consideration here is you and any siblings if you have any, your children and immediate family who need the time and space to grieve without having to worry about the care of your mother. That’s my opinion anyway and I think you are smart to be thinking this out already, it gives you time to set this up along with contingencies and short of that you will already have the bones of a framework on what to do in the moment should it ever happen. I hope it does not.
Ordinarily I would be stunned at such a question, but I take in consideration how being exhausted and emotionally whipped disables clear thinking. I'm sorry for what you are going through but it would be pointless, and in some cases cruel, to put a bewildered lamb through this experience.
There have been four funerals that have taken place in our family in the last 12 yrs. The first funeral was my husbands aunt. We took mom and she kept saying loudly that she was hungry and want to go to lunch....right in the middle of the service. The second funeral was my dads and my mom was acting strange but we didn't know it was dementia at the time. Mom showed up at dads funeral wearing a leopard print dress and we were shocked. Now we know she wasn't firing on all cylinders at the time. The third funeral was my troubled niece who my mom hadn't seen in years and never asked about. We thought it would throw mom over the edge to know that her granddaughter had passed so young and the circumstances around her death, so we did not tell her and did not take her to the funeral. Family was not happy that we did not tell mom, but they aren't the ones caring for mom, so not their call. The fourth funeral was my grandmother....so mom's mom. We told her and drove her out of state for the funeral and stayed in a hotel. Mom kept asking why we were there. I couldn't leave mom in the hotel room while I showered. Had to have another family member come in to sit with her so that she wouldn't walk out the door. People that knew mom from when they were kids came up to her and she didn't have a clue who they were. It was awkward. My mom showed no emotion that her mother had passed. I suppose it was a blessing that my mom didn't realize that her own mother had passed, but it was extremely sad for me to watch it play out.
So, really it depends on your moms temperament at the time of your fathers death as to whether it makes sense for her to attend. If you do take her, you will need help managing her. Another set of eyes to watch her and maybe take her to the restroom, etc. You will need time to grieve and "attend" the funeral of your father yourself, so ask a cousin or friend to help you manage mom on that day.
Take care.
1. What stage of Dementia? Someone who is in the early stages, and Dementia is the only issue, they want to attend, and have not lost their rights in court, of course you will honor the living spouse's wishes. And, I would also say the spouse should be involved in the funeral planning, to the level that he/ she wants to be involved.
2. Other factors:
A. Does the living spouse need doctor's clearance to attend?
B. Would it create an extreme physical, mental, emotional hardship on the living spouse? If spouse is estranged and living in another state or country, then maybe it would be better if the living spouse "attends" by watching a Zoom recording or live feed of the funeral. Oftentimes now, churches have started offering this as part of the program benefits since it can protect many from COVID risk.
C. Physical hardships might include that it is difficult or nearly impossible for the living spouse to travel by car, plane, train or medical transport - or - someone who falls asleep very easily due to being heavily medicated.
D. If the living spouse is prone to verbal outbursts of rage against the deceased spouse, and this would disturb other family members who would attend, maybe there are alternatives.
Early stages of dementia many people seem very normal most of the time.
IF you have a "wanderer", you may have to assign one person, or two, to stay with your living spouse person so they stay more protected.
Caesi Bevis
(Healthcare) Crisis-Coaching
"join our new FREE FaceBook group"
Search under "Crisis Coaching Global Community Support"
This could turn into a house of horrors for your mother or other funeral attendees.
Dementia is confusion; brain chemistry distorts reality.
It will add pain to the already confused mind.
Why would you consider doing this?