Loved one with dementia at a wedding?

Melanie12

My name is Melanie and I’m 26 years old. This past December my fiancé proposed to me. It was a beautiful moment but short lived. We decided to get married in June 2022. The sooner the better for my dads sake. He has some sort of dementia. We never got a full diagnosis but symptoms started in June of 2020. He is bed bound and needs assistance sitting up. For my wedding I wanted to walk next to him while someone wheeled him down the aisle. He hasn’t been out much due to being bed bound. The few times he accepts a stroll outside he becomes tired and wants to go back to bed. I’m worried he won’t be able to last during the ceremony. It’s an hour long. It’s so crucial that he is there. My dad is my world and I know he’s been dreaming of this day. I need tips on how to make sure he is comfortable and feels safe there. My family members have told me the church was fine but the reception afterwards was a big no…I’m wondering if others disagree? My family thinks the music will irritate him and cause a reaction or make him restless. I’ve never been in a situation like this before so I’m not sure. To me the most important part is the church so if he can’t make it to the reception it will sting but I will accept it. Please share your experience and provide any tips you have! It’s much appreciated! 

Thank you!! 

Wishididntneedtobehe

Melanie,

That sounds really difficulty to go through, I am sorry you even need to figure this situation out. I had a few ideas/ questions. Is it his full time caregiver that doesn't think he will tolerate both the ceremony and reception, if yes then I would assume they may a better idea of that? I would talk further to them about the reception to see if they have any ideas- for example do they think he could tolerate an hour of the reception, instead of the whole thing. Or do they know of anything that helps him remain calm and relaxed, etc? If they are dead set against it, then I would probably just aim for the ceremony- because if he really can't tolerate activity then you don't want him to be unhappy and restless.

  Have you seen him in a noisy and active environment recently? Does he currently go out of his home and into the community at all in a wheelchair? If yes, you could do a trial in a noisier and more active environment within the community (a mall, park, etc?) and see how it goes. 

If your goal is the whole ceremony , you could plan or aim for that and then have alternative plans if that doesn't work out. 

 Does he have a reclining wheelchair? If yes, he may be able to recline in the chair and have pillow/blanket for him to be comfortable if he does need to rest/ does fall asleep during the ceremony? I don't know if he would tolerate head phones or ear plugs to reduce noise/ or calm him with music?

My dad loves music, so I use it to help keep him calm, but everyone is different.

I would just try to go into the situation prepared as much as possible and have back up plans if your first plan doesn't work out. 

M1

Melanie welcome to the forum and congratulations on your upcoming wedding. I certainly can understand wanting your father there, but as a full-time caregiver of someone with dementia who is not bedbound, I have to say that I think what you are wishing for is unrealistic and would be very hard on him. Does he know you? Does he understand you're getting married? If so, perhaps you could dress in your wedding dress so he could see you and you could have pictures made together  (I saw an article about someone who did this with her grandmother who was too ill to attend). But he is unlikely to tolerate the ceremony, much less the reception. Consider: if you tried this and it fell apart, wouldn't that be likely to ruin the whole day for all of you? Respectfully, your focus on your wedding day should be on your fiance. You can have your dad with you in your heart.

I had a friend whose father died the day before her wedding. It was expected (though the timing was not) because he had been ill for a long time. They went ahead with the ceremony, and it was beautiful, she knew it was what he would have wanted. 

Good luck, I am sorry you are having to deal with this. One of the many, many losses of this terrible disease.

harshedbuzz

Melanie12 wrote:

My name is Melanie and I’m 26 years old. This past December my fiancé proposed to me. It was a beautiful moment but short lived.

Best wishes on your engagement and welcome to this site.

We decided to get married in June 2022. The sooner the better for my dads sake. He has some sort of dementia. We never got a full diagnosis but symptoms started in June of 2020. He is bed bound and needs assistance sitting up.

That progression sounds quite swift. Alzheimer's is diagnosed by ruling out other causes, especially in a person who presents at a younger (50s and 60s) age. This is important because some causes of these symptoms might be treatable.

For my wedding I wanted to walk next to him while someone wheeled him down the aisle. He hasn’t been out much due to being bed bound. The few times he accepts a stroll outside he becomes tired and wants to go back to bed. I’m worried he won’t be able to last during the ceremony. It’s an hour long. It’s so crucial that he is there. My dad is my world and I know he’s been dreaming of this day.

Alas, this may not be possible. It's very likely that this dream he carried since your birth has been erased by the same brain disease that has robbed him of so much else. He may not even be able to reliably recall who you are or what your relationship is/was.

From that perspective, this plan even seems a little self-indulgent in the sense that even if he were to know what was going on "in the moment" given his memory loss he'd soon lose it. My dad was one of those PWD who found celebrations difficult in the stages leading up to this stage. His last Christmas at home- still verbal, still knew who we were and still ambulatory- he had a hissy fit because 5 people showed up for brunch and it overwhelmed him. 

It sounds like this entire exercise is about what you want and while that is the nature of planning a big traditional wedding in this case it could come at a cost to others. In this case, it is not just "your day". 

This isn't meant as criticism- it is perfectly ok to want your dad there and even be angry that all your friends will have this experience and you won't. FTR, there are others out there with you angry at dementia because their LO wasn't able to be the grandparent they'd wanted to be or see them walk at graduation or because the retirement they'd saved for will never happen even as their friends travel and explore in their golden years. Life isn't fair.

 I need tips on how to make sure he is comfortable and feels safe there.

Aside from installing a hospital bed and his regular team of familiar caregivers near the first pew, he isn't going to be comfortable. You should also consider the comfort of others. If your mom and/or siblings are his primary caregiver, they will be "on duty" while he is at the church which means they can't be present in a moment they, too, have dreamt of. On duty, they may have concerns about him acting out or soiling himself. There's also the notion of protecting dad's dignity; his wife may see part of her responsibility as protecting his dignity and how others remember him which is a challenge in such a public venue at this stage. 

My advice would be a dry run. You and your fiancé could try taking him to a Sunday mass/service and see how well he manages it. You might find the ritual and music are calming to him; you might find the opposite. The actual logistics might be fraught with difficulties you have not yet anticipated. But you'll have a better idea of what you are asking to do. My guess is it won't go well and he'll get upset, but he'll soon forget it.

My family members have told me the church was fine but the reception afterwards was a big no…I’m wondering if others disagree?

Personally, I think your plan borders on abuse. But my heart really does go out to you in this situation. The way I see it, you have 2 options- you could have the wedding at dad's bedside (assuming your religion allows it- I have a friend who did this with her mom who had late-middle stage dementia- the hospice chaplain "married" them and then their R.C. priest did) and a blessing in front of your guests at the church. Or you could have the church wedding taped for dad and visit him between the ceremony and reception. 

The reception gets a hard no from me. Aside from the imposition on family caregivers who deserve a day off, it would likely be confusing and exhausting for your father. 

I took my dad out of MC one time for a medical appointment when he was in a similar stage. He needed an injection to treat his prostate cancer (to avoid it going into his bones) and I couldn't get the MCF's doc to administer, nor the urologist to make a house call. Dad really needed the shot, but it took so very much out of him. We used medical transport so he didn't need to walk, used the doctor 3 miles from his facility, and got the appointment right after lunch to minimize the wait and he was in tears begging to "go home" 20 minutes into the outing. It was awful. 

My family thinks the music will irritate him and cause a reaction or make him restless.

"The Macarena" makes me want to harm myself so I get it. 

 It sounds like your family is providing care. If dad comes, they will be the ones who deal with calming him down which will likely mean leaving. If you insist on this, you need to provide a team of familiar caregivers from an agency to be responsible for dad's care and allow your family to enjoy the reception. 

I’ve never been in a situation like this before so I’m not sure. To me the most important part is the church so if he can’t make it to the reception it will sting but I will accept it. Please share your experience and provide any tips you have! It’s much appreciated! 

Thank you!! 

Wishing you all the best, but please rethink this. 

dayn2nite2

I'm sorry and I know this is important to you, but if it's crucial that your father see your wedding, you should be having an officiant in the home and do the vows bedside for his sake.

I don't think an hour-long church service is good for him and it's likely that the service will be disorienting to him and possibly cause a lot of agitation to him.  I understand you think he's 
"dreaming" of this day, but that is probably no longer a current dream for him.  He's just making it from day to day.  Hate to be so harsh, but you are an adult and need to see this through those eyes.

If you don't want to have a very intimate home wedding where he can be present and insist on a church wedding, I think you should plan for someone else to walk you down the aisle.

PlentyQuiet

My father died when I was young, so obviously having him at my wedding was impossible. I chose to walk myself down the aisle and had a favorite uncle give a toast that he believed my dad would have. 

Walking by myself showed my father was irreplaceable. Having my uncle give voice to the words my father would have said brought him and his memory to the forefront and made it a special part of the day. 

If your father is bed bound this may be the last memory of him many extended family and friends have. If the situation is poorly tolerated that would be an unfortunate way to have him remembered. 

Is he verbal? Can a video  of him giving a blessing be played? Or, if he is not can a photograph of you and your fiancé joining hands with your father be taken and used on the wedding program? Even a photo of just the hands could be powerful.

I'm truly empathetic and sorry. This is a terrible situation to be in, and I believe you will need to be creative.

Neverends

Congratulations  Melanie on your wedding! I'm sorry about you having to deal with this issue on your special day. I care for my 87 year old mother in my home. This past summer  I had an engagement  party outside for my daughter. About 20 people attended and it did not go well. I got her situated  on the patio and the problems  started. The arrival of people, chatter, music and her basically  not knowing  what was going on  proved disastrous. She became increasingly  agitated, paranoid and aggressive not to mention shes incontinent. She is also able to walk.I was trying to care for her and trying to keep this get together  from becoming  a fiasco. I was exhausted  and on the verge of tears. I shuffled her inside my house and spent most of  MY time keeping her from a meltdown. This engagement  party was for her favorite  granddaughter and my daughter. Who she would have done ANYTHING  for. As sad as it is I wish I would have been able to " send her somewhere else for the day". Too much stimulation does not fare well for someone with dementia.  My daughters  wedding is in September  of this year. I will be there her grandmother  will not.

harshedbuzz

dayn2nite2 wrote:

If you don't want to have a very intimate home wedding where he can be present and insist on a church wedding, I think you should plan for someone else to walk you down the aisle.

That's a great option.

Several of my nieces chose to walk themselves down the aisle as the independent adults they were as PlentyQuiet suggested. I chose to walk down the aisle with my very-soon-to-be husband- I liked the symbolism of equals approaching marriage together. 

HB

jfkoc

This is a special day for you and for your father. I would "plan" this;

Your father "walks" done the aisle as you proposed. After the walk he is wheeled to the back of the church where he can exit as needed. Or if everything goes really well he can stay next to your mother as long as possible. So what if he needs to leave early. The important part is to hire someone who will be attentive only to his needs and no one will care if he has to leave in the middle of the service. If he lasts the whole time your new husband can wheel him to the back.

Reception? It could work. Again you must have someone there for him only and transportation at the ready to take him back home. He may stay a minute or last longer than everyone thinks. 

Having someone  with your father who is dedicated to his needs and they know what those needs are ....it might work. 

This is your wedding...flexabitily is the key.

MN Chickadee

I would count the reception out and be pleasantly surprised if the ceremony piece works out. The reception would be way too much for most PWD even in earlier stages -  the noise and bustle and having people you don't recognize coming up to you is overwhelming to the senses. I would do a trial run for the ceremony by taking him to church on a normal day; this will tell you if he might be able to handle it and what kinks to work out. If it goes ok then look at who will be in charge of his care on the day of the wedding. Someone hired who does not need to care about anything else is probably best. Your siblings and family will not be able to focus on both. Someone will need to have him as their only priority and be ready to take him home at any time. I would also gently say that you should be prepared to have your plan not work. A bed-bound PWD is in very late stages of the disease, and June is a ways away. If he is still here he may be even weaker and it may be out of the question to transport him. The key will be to set low expectations and be flexible, hard  and unfair as it is.

King Boo

There is nothing, not even this disease, that will take away you love for your father, and his love for you.

But, times have changed, the illness brings deterioration, decline and loss.

Best outcomes are obtained by meeting the person with dementia 'where they are at' -which, from what you describe, is a long way from your healthy Dad who wanted to walk you down the aisle.   This may no longer be possible in a productive manner.   

All weddings are fraught with complications and feelings run crazy, whether it is just the changing roles of parent to child or long held emotions of family conflict.   I bet you just about everyone will have a tale of something gone 'wrong', or at least, unexpectedly during their wedding.  Even sans dementia.

You have received good advice above.  If Dad is bedridden most of the day as you describe, this is no longer a possible or productive thing to do.  Letting past dreams dictate a challenging, over stimulating day which is not good for him would be difficult.

It also bears thinking about what an upsetting situation it could be first to Dad, second to other close family members;  if you proceed with this, hire a professional caregiver who can take charge of Dad.

I would recommend walking down the aisle, in full knowledge that your Dad would be there with you if he could, and that all his past love is there with you now, even in his physical absence.

There's a lot to let go with this disease.  Most of it painful.

Joydean

Melanie congratulations on your engagement and up coming wedding!  I think it’s every girls dream to have there dad walk them down the aisle.  Having said that you have received some very good advice here. But only you and your family know how your dad and what stages he is in. Have you asked his doctor about what you are asking of your dad? As some have suggested having a private ceremony at home with family and your dad then “the big day “ at the church. Nothing wrong with having two weddings. Search your heart and look at your dad and you will have your answer! 

God bless you and your dear dad. 

Phoenix1966

Melanie, let me add my congratulations to what others have wished you. I was only a few years older than you are when I was married and I was so very lucky to have both my parents in attendance and give me away. However, less than 5 years after marriage, my fifty-something father dropped dead of a heart attack in my own driveway. It was sudden, out of the blue and completely unexpected.

It wasn’t fair. It wasn’t what I thought would happen, expecting him to live at least as long as his dad into his mid-eighties. I had dreams of taking care of him(and my mother) financially after I made a name for myself, doting on him and having him in my life for decades to come. He was stolen from me. I feel cheated to this day, somewhere in my heart believing that we all have a “guarantee” for a certain amount of years, which is a foolish thought to carry. We have only as long as we have.   

I feel like your dad has already been stolen from you, but you haven’t quite realized it yet. I just “finished” caring for my grandmother, who died from Alzheimer’s in December. I’m still adjusting to not being a nearly 24/7 caregiver(my mother holds that honor and it almost killed her). I would drive 45 miles one-way almost every day(in traffic that made the commute almost 2 hours) to help, bringing food, changing adult diapers, feeding, redirecting during delusions and hallucinations and I still had it easier than my mother, who was there all the time with the screaming, sleep fragmentation, etc. It’s exhausting, heartbreaking work for the caregiver and so very stressful on the person suffering with AD. And my grandmother suffered. Childhood memories of concentration camps came back to haunt her in vivid detail.

I don’t know what your father’s comfort level is. I don’t know if he’s incontinent or not. I do feel like he would have to monitored at all times(to make sure he’s not overwhelmed, needs to be changed, etc.). I also know that will fall entirely on the primary caregiver for that day. Do you know who that will be if it’s family? Because if it is family, he will be their sole focus. They will not really be “present” for your ceremony. Are you okay with that? Are they?

Will you be okay if your father has a meltdown? Becomes confused? Soils himself? Starts singing at the top of his lungs? Will it be okay if distant family/friends who know him see him like this? Would this be what he would want?

I don’t know the answers to those questions. Posters here have already given some lovely suggestions like having an intimate ceremony with just him in attendance at his bedside. I would consider them if I were in your shoes, which I am not. You could walk yourself down the aisle or if your mother is still in your life, you could have her do it if your belief system allows for that. I had both my parents do it because they were both the ones “giving” me away. 

This is a tough moment for you where you have to weigh what will make you happy versus what may be in the best interest of your father’s health and wellbeing. It’s very challenging having to make those kinds of decisions, but that’s where you are. 

I wish you and your husband well in your journey together and I will keep your father in my thoughts. 

BassetHoundAnn

First of all, congratulations, Melanie! This is such an exciting time of your life. I hope that the days of preparation and the married life ahead bring you much happiness. 

You've received a lot of excellent advice here. 

My dad died of brain disease and was absent from my wedding and all the other big events of my young life, and that absence still breaks my heart many years later. The grief and sense of loss never go away. I understand what you're going through and what's at stake here. 

From what you describe your dad has early-onset and he's already bed-bound. Early-onset can progress very quickly. It sounds like the wedding is still nearly four months off. Your dad's illness may progress very quickly in that short span of time. 

Planning on the side of caution, maybe the most prudent thing to do would be to plan for a bedside blessing following a church ceremony. That would not subject you, your fiance and family to the anxiety of getting your dad to the service, caring for him through it, and wondering whether he can handle the strain of the day. A bedside blessing can be as beautiful a service as a wedding, with flowers, music, prayers and best of all loving family. It's the loving family that matters the most in all this. 

If you stick around on this forum--which I highly encourage because it's a wonderful place with many incredible people who give amazing advice--you'll read about how the decision to stop including an Alzheimer/dementia-sufferer in family holidays and events is always a gut-wrenching choice. I'm sorry that you have to consider such a heart-breaking decision during what should be a joyful time in your life. I know that whatever course you choose it will be the best for you, your dad and your family. I wish you much good luck--and a future of boundless happiness. I know your dad would wish that for you too.  

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May flowers

First, congratulations on your upcoming wedding! I know it’s so hard with your dad’s situation. 

I like the idea of two ceremonies that others have mentioned. Another thought is maybe you could set up a video feed - he could watch the wedding from his bed… or you could set up a FaceTime or Amazon echo so you could see him and he could see you at the ceremony. Just an idea.