Father with dementia at my wedding? PART 2

Melanie12

Hello everyone! Melanie here! I’m new to this forum so bare with me! I don’t know how to post my last forum but it was titled “loved one with dementia at a wedding?” I wanted to say thank you for all the warm comments! Everyone who reached out really gave me new perspectives to look at. 

I have a few things I need to address that I didn’t in the first forum. My dad still knows who I am and who his family is. Yes he is still bed bound but he can still feed himself, brush his teeth, and let us know how’s hes feeling. Conversation can be tricky for him but on good days me and him can talk about anything. Me and my fiancé are planning to hire the best care giver on my wedding to be attentive to my dad all day. I saw someone mention that what I wanted was ‘selfish’ and in a way yes it is…but also seeing how my dad is still remembers me I don’t think I’m being selfish. If it comes to a point where he has no clue who I am I will take most of your suggestions to have an at home ceremony. His condition has been steady for the last 5 months so I’m hopeful it will remain so in June. Before my dad got sick he loved going to church…so I think my ceremony will bring him comfort. We will advise the caregiver to take him outside if anything should happen. I guess my biggest fear is what if it does progress in these next 3 months? I don’t have a backup plan…I don’t think I’m strong enough to walk down the isle alone (I’m not close with any male figures in my life and me and my mom have a rocky relationship) just thinking about it brings me to tears. I’ve decided not to bring him to the reception (even when he was healthy he hated receptions.) so please if anyone has brought a loved one to a ceremony tell me how it went for you. Also I want to start taking my dad to church now but our temporary caregiver is too small to lift him…anybody know of a company that can transfer him? I live in Michigan in macomb county. 

Also for those who didn’t have your dads at your wedding either due to death, Alzheimer’s or absent fathers… my heart goes out to you. I cried reading your comments and want you all to know I see you as some of the strongest women I know. 

mommyandme (m&m)

Melanie, as long as you’re  still signed into this forum (sometimes we get kicked off without knowing it and must log back in to post etc.) there’s a green button at the bottom of the last posters comment that says “add reply” to reply within your original thread.  

With that being said, congrats on your upcoming nuptials and good luck on sharing your day with your dear father. 

BassetHoundAnn

>>>Also I want to start taking my dad to church now but our temporary caregiver is too small to lift him…anybody know of a company that can transfer him? I live in Michigan in macomb county. 

There are companies that do medical transport. But they're pricey. Relatives used a medical transport company to transport a parent with Alzheimer's to a birthday celebration and it ran about $360 and it was under 10 miles. To find recommended medical transport companies in your area contact social workers at nearby hospitals as hospitals use these services a lot upon discharge.  

abc123

Hi Melanie, welcome to the forum AND congratulations on your engagement and up coming wedding. If you could tell us more about your dad we could give you more info. I read your first post and I feel like you got some good feed back. How old is he? What symptoms did he have at first, was he forgetful or confused, was he in an accident that brought on symptoms? Does he live with you? Who takes care of him now? I'm not being nosey, you will truly get better feedback from other people who are in a similar situation. There is always more to learn about any type of dementia. We have some members who have years and years of hands on experience and wisdom, some have already lost their LO to this disease, yet they continue to come here and help us. We have lawyers, scientist, nurses, doctors, a huge variety of people who have been where you are now and they can help you to help your dad. My mom has alzheimer's, she is 81 and considered to be in stage 7 now. I helped my mom take care of her mom when she had alzheimer's. Grannie lived to be 94. I'm just a regular, everyday person who loves my mom & dad a ton. 

I'm gonna give you some food for thought. People with dementia need a routine, they need to feel safe and secure. New surroundings, activities, people and sounds can actually be emotionally painful for your dad. Have you thought about bringing him to church every Sunday prior to the wedding?(Yes you have.) That would help him become familiar with the interior of the church again. I'm assuming this is your family church and he's been there before. What will he wear that day? A suit or tux? Does he still enjoy dressing? Getting my mom ready and dressed for a special event was a nightmare and it took me and my dad to accomplish it. Is he used to getting shaved everyday? Is he incontinent? Who will help him with bathroom issues at the church? You mentioned hiring a caregiver for the special day, that's great but your dad will do better once he's familiar with the caregiver and feels safe/comfortable with him/her. This caregiver should be hired at least a couple weeks before the wedding. Others will have different ideas. Do you have the music picked out for the ceremony? It would help to start playing it softly for him now. Who will he sit near and next to during the ceremony? Is it people he likes and enjoys? Who ever will be in charge of getting him shaved, showered and dressed will have to be someone he is used to and has a routine with. You can't throw any curve balls to him on the wedding day. You need a plan B exit strategy worked out in advance just in case he has a melt down, bathroom accident or even a case of bad nerves and becomes ill. A plan to quickly and quietly whisk him out of the church if he should become upset. It's all a lot to consider and I wish you well. 

Wishididntneedtobehe

I was wondering if you possibly could move the wedding to sooner? I don't know if that is possible- but since having your dad be there with you is so important- do you think it would be possible to move the wedding up- so you don't need to worry about if he gets worse. 

The other option might be to have the ceremony sooner- as soon as possible (with your father going down the aisle with you) but have a 2nd ceremony and reception as you have planned for June. 

I know this might not feasible planning wise or financially. But I was curious. My sister got married the first time- in a small ceremony and then she had a big ceremony and reception a year later with everyone.

Just an idea.

harshedbuzz

Melanie12 wrote:

Hello everyone! Melanie here! I’m new to this forum so bare with me! I don’t know how to post my last forum but it was titled “loved one with dementia at a wedding?” I wanted to say thank you for all the warm comments! Everyone who reached out really gave me new perspectives to look at. 

It sounds like you got signed out. This happens all the time- sometimes I'm logged in reading one post and kicked off by the time I open the next. Another thing that happens too routinely is that the board will "eat" a post randomly- typically one that was longer. Some old hands writing in word and paste into a post to avoid this. 

Speaking of forum housekeeping, it's really helpful to flesh out your bio with some details of your situation. Age of the PWD, type of dementia (if known), stage of the dementia, physical condition of your LO including any other medical issues, where your LO is residing and who the caregiver is, do you live with the PWD, locally or long distance, are you POA or guardian is applicable or how you are related to the situation. It really helps people offer suggestions that would be most applicable. 

I have a few things I need to address that I didn’t in the first forum. My dad still knows who I am and who his family is. Yes he is still bed bound but he can still feed himself, brush his teeth, and let us know how’s hes feeling. Conversation can be tricky for him but on good days me and him can talk about anything.

What stage is he in? The rule of thumb is that a PWD is considered to be in the latest stage for which they have symptoms/behaviors. Most PWD seem to follow a very similar progression, but sometimes a PWD can be much further along in one area than in another. 

This link can help you consider the stage in which your dad finds himself. I am curious as to why his is "bedbound"- in dementia that is typically a later stage symptom unless it is related to some other medical condition like a stroke. 

Stages of Dementia Dr. Tam Cummings

Here's another one-

Measure and Manage the course of AD using The Functional Assessment Staging Test (FAST) (mccare.com)

Me and my fiancé are planning to hire the best care giver on my wedding to be attentive to my dad all day.

Here's the thing. The best caregiver is the person who takes care of him the most. PWD typically have a preferred person who they will glom onto if available. If your mom is his regular caregiver, she is most likely that person and he will want her attention meaning she will not be able to enjoy the day as MOB. 

At the very least, the caregiver for the day needs to be someone who knows your dad and vice versa which means they will need some time together to build a relationship. I would start this a couple months before the wedding in case they just don't click and have to start over. FTR, an agency aide where I live is over $30/hr with a 4 hour day/15hr/week minimum. 

I saw someone mention that what I wanted was ‘selfish’ and in a way yes it is…but also seeing how my dad is still remembers me I don’t think I’m being selfish. If it comes to a point where he has no clue who I am I will take most of your suggestions to have an at home ceremony.

As others have suggested, routine and familiarity are very important to how well a PWD is able to function. Your dad's ability to recognize you may be baked into part of that routine if your live there or if he only sees you there. He may be disoriented outside of his home and not know who you are in the hustle of being dressed and transported to the church. 

His condition has been steady for the last 5 months so I’m hopeful it will remain so in June. Before my dad got sick he loved going to church…so I think my ceremony will bring him comfort.

Tell me about "sick". When most family members describe the onset of dementia is it a more subtle thing- some emotional dysregulation one day, memory lapses another until the glitches happen so often that family decides to seek help. The only PWD I know of personally who "got sick" had a massive stroke that triggered VD. VD is a little different than Alzheimer's in that it tends to progress in a series of plateaus followed by step-like declines compared to Alzheimer's where the decline is more like a steady slope. 

We will advise the caregiver to take him outside if anything should happen. I guess my biggest fear is what if it does progress in these next 3 months? I don’t have a backup plan…

You always need a shovel-ready Plan B with dementia and not just for a single day. He needs a caregiver he likes and is familiar with his needs and abilities who can make the call regarding whether he stays or heads home. If your dad is unable to assist in his transfers, he would be considered a "2-person lift" and your caregiver will need an assistant. 

I don’t think I’m strong enough to walk down the isle [sic] alone (I’m not close with any male figures in my life and me and my mom have a rocky relationship) just thinking about it brings me to tears.

I walked to the altar with my husband with my MOH (mom) and FG (niece) ahead of us. 

I’ve decided not to bring him to the reception (even when he was healthy he hated receptions.) so please if anyone has brought a loved one to a ceremony tell me how it went for you.

My mom did something a little similar. She brought my dad, then in stage 5 closing on 6, to his brother's best friend's viewing. My dad had known this man since he was 12 and they'd been part of a weekly golf group for years. I advised my mom against it, but she insisted. Dad was pretty unfiltered and kind of lost the narrative on why he was there. He was quite inappropriate and upset his dear brother and the dead man's family. The widow and mom live in the same gated community and she talks trash about my mom whenever she gets an opening from what I hear. 

Also I want to start taking my dad to church now but our temporary caregiver is too small to lift him…anybody know of a company that can transfer him? I live in Michigan in macomb county. 

Can your dad be transported in your car- i.e. can a capable aide transfer your dad out of bed, into a wheelchair and then into a car? If so, a PT might be able to instruct you or your fiancé on using a gait belt to move him in a manner that is safe for both parties. 

If this is not possible for your dad, then you are looking at hiring medical transport. FWIW, these people will do transport, but they don't stay with or tend to the PWD as a rule. Since you'll be private pay, you may need to pay a premium for a weekend ride. 

Either way, if your dad is incontinent, you will need a "diaper bag" that contains a change of clothing right down to the shoes and socks for him, adult wipes, rubber gloves, plastic bags to take the soiled things home and a space large enough to complete the clean-up and change. Some folks throw in a fresh shirt for themselves just in case.

This might be useful reading for you as well. 

12 pt Understanding the Dementia Experience (dementiacarestrategies.com) 

Also for those who didn’t have your dads at your wedding either due to death, Alzheimer’s or absent fathers… my heart goes out to you. I cried reading your comments and want you all to know I see you as some of the strongest women I know. 

My nieces both lost their mom as young teens/tweens and have gone through the usual milestones motherless. It is a sad, sad thing. The younger allowed it to be her excuse out of anything difficult, but the older one is a strong and capable woman.

dayn2nite2

You will do as you wish, but to me this sounds like a logistical nightmare that will agitate your father.

If it were me, I would have a small bedside ceremony at the house with him in attendance (soon) and arrange to either walk the aisle alone or find someone else to do it.  I wouldn't want to create any distress for my LO with dementia by moving him here and there on a day that is likely to be highly emotional for everyone.  To me, that would be the kindest solution for him.

Melanie12

Thank you for the long response I really appreciate it! Can you tell me more about VD? I think that might be what my dad has. 

Thank you! 

Michael Ellenbogen

This is one of the most important things in my life is to see my daughter marry and that keeps me going. There will be times he will be in pain and one needs to prepare for that. I am ore then happy to speak with you. This will require a lot of planning depending on the involvement you want.  I so commend you for doing this.

Melanie12

Hello Michael thank you for those words! Is there a place we can message more privately? I tried to message your Facebook group but from your last post it seems like you no longer use Facebook. Please let me know I would love to chat more! thank you!

Rescue mom

Melanie, I am so sorry you’re dealing with this. I saw your newer post about “help me diagnose my dad,” and it’s breathtaking to see what you’re dealing with. It’s too much, with help needed from people smarter than I.

But FWIW,  my DH has mid-stage dementia, sounds a lot like yours except he’s mobile, and  just IME. He was very social and family oriented, and like your dad, church was important. (That struck a bell. ) That allchanged with dementia. What he liked before, he no longer recognizes, including the church he was so active in. He is very easy (compared to many) at home, away from home he is very different. Even surrounded by family, at a event he wanted to attend, he gets upset and just wants to go home. 

Also, probably more why I’m writing this, two nights ago (for the second time in 6 months) I saw a person with dementia have a major public meltdown, with extremely graphic physical reactions, at an event. 

In both cases, the caregiver spouse was screaming “but she wanted to come,” and “this was all fine before, and “this has never happened before, she loves this” Etc. The event was disrupted and delayed, in this case, sections of the facility were not usable and people had to leave, or be placed elsewhere. It had to be horrible for the person herself, and awful for everyone else.

A big part of what makes this disease so bad is how it changes people, the changes are often hard to predict, and gradual. Here one, day, gone the next, back again, etc. I think it would have been easier if he went quickly from fine to being immobile and “out of it.” But it rarely works that way. You just never know, for so long.

The Alzheimer’s Association has a free 1-800 hotline that has experts available for counseling 24/7 IIRC. You can Google the number. Ask for “care consultants”, . And I hope you get him to a doctor soon. Good luck!  I can see you are determined, and that will be needed no matter what. Michael, who offered help above,  is a treasure, and exceptional, maybe unique. That’s a good thing!

Michael Ellenbogen

I just sent you my phone number. Call me till 4 PM Easten time or tomorrow after 9AM.

Melanie12

Hello rescue mom! 

I’m so sorry about your spouse. If I’m being honest we’ve never taken dad out to a public setting before due to him being unable to walk. We would also need someone strong enough to carry him and a car big enough for his wheelchair. I am curious now to take him to church as a test run. Do you think church service would be fine? I could wheel him in the back of the sermon. He still loves religion now but like you said your loved one is different out in public…I guess my best bet is to give it a shot.  

harshedbuzz

Melanie12 wrote:

Hello rescue mom! 

If I’m being honest we’ve never taken dad out to a public setting before due to him being unable to walk. We would also need someone strong enough to carry him and a car big enough for his wheelchair. I am curious now to take him to church as a test run. 

I spelled the usual steps out in my previous post:

Can your dad be transported in your car- i.e. can a capable aide transfer your dad out of bed, into a wheelchair and then into a car? If so, a PT might be able to instruct you or your fiancé on using a gait belt to move him in a manner that is safe for both parties. 

If this is not possible for your dad, then you are looking at hiring medical transport. FWIW, these people will do transport, but they don't stay with or tend to the PWD as a rule. Since you'll be private pay, you may need to pay a premium for a weekend ride. 

Either way, if your dad is incontinent, you will need a "diaper bag" that contains a change of clothing right down to the shoes and socks for him, adult wipes, rubber gloves, plastic bags to take the soiled things home and a space large enough to complete the clean-up and change. Some folks throw in a fresh shirt for themselves just in case.

Rescue mom

How a church (or any crowd of strangers involved with something else)  reacts is hard to predict. I do think people in crowds are less patient now than they were a couple years  ago. One-to-one is one thing, but a crowd as a whole…?

You said he has incontinence issues but he can tell you if he needs changing. 

Think through in your mind, do kind of a mental rehearsal,  how you will handle things if he announces in the middle of a ceremony, or an event, that “that” happened or is about to….

HB gave very good summary of supplies you will need on hand, and transport matters. You’ll also need to locate the closest place you can get him to, to clean him up or change him. Not all restrooms are big enough for what you’ll need. 

Can’t help but wonder about your mom’s feelings and involvement with all this. I think you said you don’t get along great, which is not unusual, but if there’s a lot going on here…