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.
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.
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.
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.
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.
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.
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.
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.
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.
Have the "official" service at another time without her.
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.
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.
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.
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