Father with dementia (long)

[xapora]

I''m having a hard time sleeping tonight because I can''t stop thinking about this...I was hoping you guys could help me out a little.

My father is 75 years old (mom is 50) and he started declining in his functioning about 8-10 years ago. He hasn''t been formally diagnosed with anything, as it''s hard to determine what illness he really has, so they''ve blanketed it with the term "dementia". The real problem with his illness is that he has lost almost all ability to recognize what words mean, and therefore, he has problems communicating and understanding situations. He can''t hold a conversation at all, even though he still can speak words perfectly fine and has very rare moments of lucid thinking. He also is unable to take the simplest instructions. His IQ is probably that of a small child, but he can''t communicate as effectively.

He has a constant desire to stay at home in his familiar surroundings. He always asks to come places with my mom, but as soon as he gets out of the house, he wants to turn around and come right back home. At his doctor''s appointment today he refused to sit down and cooperate, paced, was agitated, and generally was just irritable until he got home. If he has to sit around and wait a long time, he will tell my mother in a very loud voice, "I''m not coming here any more!"

I''ve already come to terms with the fact that he probably won''t be able to walk me down the aisle. He gets very uncomfortable when he''s not in air conditioning, and as we''re waiting to walk into the church, I''m afraid he will outright refuse to stay with me and become belligerent if I ask him to stay with me. I really don''t want to make him do anything that may make him uncomfortable. I have asked my mom to give me away on behalf of herself and my father to ease up the responsibility on him. This makes me very sad, but I''ve accepted it and am excited about my mom giving me away, as we are very close and have a wonderful relationship.

Even though he can''t communicate well, he has asked us a couple of times in the last few years if we''re getting married, and then told us that he wants to be there. He no longer remembers this or grasps the concept of a wedding. I know in my heart that he will be uncomfortable and be asking to go home the entire time. It would be different if he understood a little of what is going on, but I know he won''t understand where he is or what''s happening. He''s even seen me in my dress and veil, and didn''t even seem to notice I was wearing anything different than my jeans and shirt.

Scenario 1: He comes to the wedding. My aunt will have to watch him in the church. There is a 99% chance that he probably won''t sit and will be pacing the aisle, and we MAY be able to get him to sit down for a short period of time, but there is a high chance he will refuse. He may clasp his hands over his ears when the ceremony musicians begin playing, he may not. The biggest thing I am worried about is him having an outburst during the ceremony and vows, but if it happens, it happens, although it will be captured on our wedding video. We will have to get him at least a suit, but he hasn''t worn a suit in years, so I''m not sure if he will want to keep it on. He would be there for pictures, which would make me very happy. We would have to have someone drive him home (20-25 minutes away) before the reception, because I know he will want to go home by then and will become upset if there is loud music. But at least my father will be at my wedding and I would never have regrets in the future about him missing out on it.

Scenario 2: He stays home. It saddens me so much to think that my father may not be at my wedding, especially when I know he would want to be there so bad if he were in his right state of mind, but it also makes me feel better to know that he would be more comfortable in this situation. Both FI and I would get re-dressed the next day, take him to the church, and spend 5-10 minutes taking pictures with my mom and dad for our album. But I feel like everybody would be asking why we left him home, and I would always have a huge regret that my father wasn''t at my wedding.

This is the hardest decision I''ve probably ever had to make. While my family, dad''s doctor, and FI are all thinking scenario 2, I can''t help but think that all the disruptions he may cause would be worth it. Even now, with his impaired communication, he tells me, "You''re the best," and it breaks my heart. But I still know he wouldn''t understand what was going on and would be highly uncomfortable.

Any advice/support/suggestions? Do I have him there, risk the disruptions and stress of it all, make him uncomfortable, but know that I probably did the morally right thing? Or do I leave him at home, explain my decision to the guests who don''t really understand how bad he is, keep him in his own familiar surroundings, and possibly regret my decision in the future?

 

[diamondfan]

Xapora, first, my heart breaks for you and your family. This is awful and having a dilema about your wedding does not help.

I know a bit about dementia and think this is a lose lose decision, either way you will be upset and worried. But the most important thing, to me, is that it will very very tough on your dad to go. Even if he does not have any overt outbursts, it will likely be agitating and unsettling for him. I am not sure that is worth it, especially since it is llkely he will not even remember much about it. If you have a caretaker for him, you might be able to get him there and be able to calm him if he gets upset. I know it is a tough call. And I know it might be hard to explain his absence, but you could simply say he is too ill t attend and leave it at that. I assume close friends and family are aware of the situation, so that might make it a bit easier on you. I just think, even if you are okay with any potential problems, people in his situation do not tolerate change well and it could very frightening for him to be out of his comfort zone and not really know what is going on.

 

[lauralu]

Hello,
First off I am so very sorry about what is happening to your father. I know first hand how difficult this kind of thing is for everyone involved. At some point it becomes worse for the caretakers and loved ones than the person who's mind is declining as they become someone else without even being aware of it any longer. Yet we see it and know it and feel it.

I feel how important it is for you to want him at your wedding. Of coarse you do! For a lot of women their dad walking them down the isle is the first step to the beginning of their new life.

It sounds though, You have come to terms and acceptance of a lot of what is happening. That takes courage.

Maybe you could have someone he knows and trust bring him to the ceremony site and make your dad and your pictures the first on the list. Get them over with and than take him back home. He will probly last just long enough to get those done. There won't be a lot of people around and he won't have to sit and be still or wait. That way you will have photos of you and he in the church with all your flowers and decorations in the picture as well. When the pictures are back it will look no different than if he would have been there the whole time. Of coarse he would not have. But, it might just be a nice compromise for everyone. He will not feel uncomfortable and you will have had him there on your wedding day! You could even have pictures of and he and you walking down the isle.

People who are close to your family will understand and know why your father is not at your wedding.

I hope this helps some. I went through this with a member of my family. It is heartbreaking I know. Finding the courage to see them as they are now and respond to their needs in their current state is so difficult as we are always wanting to have them back as they were.

 

[ringplease]

I am so sorry to hear about your situation. I know this must be very difficult for you and your family. I work in the medical profession and I have to say one of the hardest things is losing someone you love to things that take away the mind. I can understand that you would want your father at the wedding but you must also ask yourself what he would want if he were in his right mind. I think that any loving father would not want to be a disruption on your special day. Unfortunately, the reality of the situation is that when you take patients with dementia out of their normal surroundings it is natural for them to be afraid and confused. That said, I would recommend scenario #2.

However, I was also wondering if perhaps you were going to have a videographer at the wedding? That way, you could watch the video with him afterwards to so he could take part in it. You could also have him join in pictures at the house before the wedding if that were feasable.

One more medical note.... I am sure you have talked to your family doctor about some of the medications they use for Alzheimers dementia like Aricept and Namenda but if you havent you might want to. I have seen some improvement when patient''s take these drugs and it may be enough to allow your father to have some improvement and make it to the wedding.

Good luck. Take care.

 

[Ellen]

Date: 8/25/2007 3:47:15 AM
Author:xapora
Even now, with his impaired communication, he tells me, ''You''re the best,'' and it breaks my heart. But I still know he wouldn''t understand what was going on and would be highly uncomfortable.

Any advice/support/suggestions? Do I have him there, risk the disruptions and stress of it all, make him uncomfortable, but know that I probably did the morally right thing? Or do I leave him at home, explain my decision to the guests who don''t really understand how bad he is, keep him in his own familiar surroundings, and possibly regret my decision in the future?

This just broke my heart, along with the entire situation. I feel so sad for you, since of all days in a girls life, this is where she wants her daddy the most.

My gut reaction is, let him come. You will only do this once. I think it will ease your heart if you at least try to let him be there, even if it only lasts 5 or 10 minutes. As you said, then there are no regrets.

I''m thinking you may need to treat him as you would a child to help here. For example, does he have anything he likes to do with his hands to keep him busy (game, book, etc), or a sweet snack, anything that might pacify him at all? This probably wouldn''t help for very long, but maybe help a bit.

I really feel for you. {{{hugs}}}

 

[KimberlyH]

Xapora,

My now deceased MIL had late stage Alzheimer''s when DH and I were married, and she broke 3 bones in her back 3 weeks before our wedding....I share this so you know that I empathize with what you are dealing with. We hired a private nurse to take her from hospital rehab to the wedding. It was not easy to find a company who does this (DH called at least 15 places before he found someone who would be able to do so because she had both medical needs due to her injury on top of Alzheimer''s). She didn''t have outbursts like your dad may at your wedding, but she didn''t know who I was and spent most of the evening wanting to go "home." She died 6 months after our wedding and now, looking back, I am so glad we found a way for her to be there, even if only in body and spirit (her mind was certainly not in attendance that day!). I struggle to tell you what is best as his MD has recommended he not attend; my MILs MD told us the same thing, but we had her there anyways, because it was important to us. If I were in your shoes, and it''s not going to harm him to attend, I would have him there. Whatever you choose you need to be at peace with your decision. Good luck to you, I know how hard it can be.

~K

 

[havernell]

Wow, that is really tough situation, but I''m glad you are giving it so much thought. I''d be going crazy over it too! Here are two things that I thought of

1. Can you wait to make the call until after the ceremony rehersal the day before? Maybe you could bring your dad to the rehersal as kind of a test (and do all of the music, noise, etc of the real day). If he''s able to be calm through that, perhaps he''d also make it on the actual wedding day. If he''s too agitated even at the reherasal, then perhaps think about having him stay at home the next day.

2. Could you bring him to the ceremony, but have someone with him that could just quietly escort him out if he gets too uncomfortable? I know having your dad escorted out of yoru ceremony isn''t the greatest thing to think about, but at least that gives you the opportunity to TRY to have him there. If he''s calm through the whole thing, great! If not, at least you gave him the opportunity to attend (and at least he will have seen a few minutes of the ceremony). Plus, like someone else said, if most of your family and friends know about his condition, they will understand why the escorting out may have to happen, so it won''t be that big of a deal.

I hope everyting works out for you and your dad on your wedding day!

 

[rainbowtrout]

I''m so sorry, this must be very hard for you. As to what to do about bringing your father to the wedding--as long as he can be taken home when he starts to be unhappy, perhaps it would help to give you some closure?

It is frustrating that the doctors cannot give you a more targeted diagnoses.

 

[xapora]

Thanks for all of your advice and suggestions, I really, really appreciate it.

Diamondfan - It is a lose-lose situation and it''s so hard to determine which is the better of the two, but I agree, the most important thing for me is that he is comfortable and not forced to do anything he doesn''t want to. Thanks for your kind words.

Lauralu - Taking my family pictures early is a very good idea. My mind is all over the place with this situation and I hadn''t thought about that possibility, thank you! I guess I could take family pictures before the ceremony with just me, my mom, and my dad, and even though FI won''t be in them, it''s better than having no pictures of him at all. Maybe one of my relatives could arrive early and drive him home before the ceremony starts, this way he will have gotten to see me and participate a little, and I''ll feel better knowing he was there. I''ll have to run it by my mom, thank you for the suggestion.

Ringplease - That''s one of the things that is comforting me, knowing that if I could speak to my dad as I knew him for just a second, he would insist on staying home so he wouldn''t be a problem for us. I thought about the video thing, and I think if I pointed to the screen and told him that was me he would smile and be excited that I was on the TV.

That may be a good idea, at least to involve him somewhat. He''s been on both Namenda and Aricept in the past, and I believe he''s been taking Namenda steadily for several years now. We''ve noticed the progression of the disease to have slowed a lot, and I feel really lucky that he''s pretty stable these days because of it.

Ellen - You''re right, I think it would work if we brought him in for pictures beforehand, like Lauralu suggested. This way he can at least participate in the day for a small portion of it and he will have gotten to spend some time with me on the big day. He may not be able to last until the ceremony, but at least he''ll have been there.

KimberlyH - Thank you for the advice. Although this type of disease is so common, I have a hard time finding people who truly understand what it''s like to have a loved one with the disease. Being 22 years old, most of the people I know have not dealt with anything like this. I''m so glad everything worked out with your MIL and she was able to be there, thank you for sharing your experience.

Havernell - That''s a great idea! Maybe he could even walk me down the aisle at the rehearsal, just for kicks.

I''m pretty sure he won''t do well, but at least we''ll be able to practice - who knows, he could surprise us all and behave really well. The thing is, the whole subject is really touchy with me and I can''t help but cry at the drop of a hat when I think of seeing my dad escorted out of my wedding. I just don''t think I''d be able to smile through it all - I wish I were stronger about the whole thing.

Rainbowtrout - It is VERY frustrating. I can''t wait for the day that they''re able to at least diagnose these types of illnesses better, let alone cure them. I know it will be too late for us, but it makes me happy knowing that it will be somewhat easier for everybody in the future.

 

[lauralu]

Not knowing what the logistics are from ceremony, reception and where your dad lives. But, is it possible to stop over at his house in between maybe ceremony and reception just for a pic or 2? If you are limo'ed to a reception place from the ceremony site and it's close, it might be a nice little stop over to tell your dad your married and get a few photos. Whomever is taking care of him that day can have him all ready and prepared for your stop over. If you took before wedding ceremony photos with him and you and your mom at the church. Than he went home, and you stopped over briefly after for pics of you and your new hubby with him. That might be kind of nice too!

Also the video would be a spectacular idea as well.

I think your right in trying to avoid a situation where you have to watch your dad be taken out of the ceremony. Your dad would not want that as well.

may you find peace in your decision....It will be a beautiful day. Your dad above all else would want that for you and I am certain he trusts in your decision.

 

[labbielove]

Xapora,
My heart goes out to you.
I can understand somewhat the pain that you are going throught- My father suffered from dementia as well, although I believe his was caused by vascular/circulatory issues and he died 5 years ago from complications of diabetes.
I know what you speak of when you explain his desire to be at home in familiar surroundings,etc. And I would just like to share that we found that worked best for dad also.

I read and re-read your post, and I know that only you can decide what is right FOR YOU.
You mention what is the morally correct thing to do- and it''s obvious you only want to do what is best for your father.
To me, the morally correct thing is to put your loved one and their needs ahead of your own, as hard as that is. While you may want your father there, and he "would have" wanted to be if he were at full mental capacity, try and also think of the flip side of the coin. In scenario 1 that you mention, would your father really want to be out in front of all of those people when he is so not himself? Would he really want to risk disrupting your wedding ceremony? I don''t think that is the case.
Also, if the guests have not seen him in so long you run the risk of him being swarmed by people afterwards asking him how he is doing,etc. This can be a very uncomfortable and scary situation for someone with dementia who is used to a routine.

All I can offer is what I would do- if my dear father were alive today, I would have him stay where HE would be most comfortable, in his familiar surroundings, and not around all of those people.

Here are couple of ideas, have you thougt of:
1) possibly going to see your father with FI in between the ceremony and reception for photos?
2) getting photos of you, mom and dad before the ceremony, or even with FI if you are open to that.
3) having someone videotape the ceremony and sitting and watching it with your father and FI and mom all together

My heart aches for you, I know it will be so very sad on that day to not have your father with you, but also you deserve to have the peace of mind that he is comfortable and cared for, and not on edge during your entire ceremony having one ear open to listen in case he disrupts.

 

[surfgirl]

What a difficult decision to make. I feel for you...That said, I am in the "do what will make your father most comfortable" camp. It is about his comfort, to me that''s the most important thing here and I agree that if he was lucid for a moment he''d most likely tell you that he would never want to make a scene at your wedding (even if unintentionally) so he''d probably prefer to stay home. That said, I think that if you really want him involved, you need to re-consider not seeing your FI before the walk down the aisle. Honestly? I think it''s wonderful having that "first look" privately, rather than in front of a room full of people. It''s much more intimate! And that way, you could do the "first look" shot at your parents home (maybe coming down the stairs of your parents home or something romantic like that?), then do the rest of your family photos there, before the wedding. You could also have FI''s parents come over if you think that would work (if he doesn''t really know or recognize them though, it might agitate him). I''m sure all concerned know about your Dad''s situation so if it became uncomfortable, you could always stop the photos, or his participation in them, and move on.

I think IF he is still seeming comfortable with coming to the ceremony AFTER the photo session, then pre-arranging for someone he''s comfortable with the take him there and sit with him in the back row, and take him out and home as soon as he expresses he wants to leave is like "Part Two" of the scenario. But I think you really should get married in a situation where you can focus on you getting married, not on whether Dad is going to have an outburst during the ceremony. I think if you arrange for the photos shoots beforehand at home, that will be a lovely way for him to participate at a minimum. Then, if he''s able to have someone bring him to the ceremony, assuming he wants to go, that''s icing on the cake. But I wouldn''t push him. It seems like you already know he''s not up to coming to the ceremony. But at least having a pre-ceremony photo shoot would involve him on his terms, in his comfort zone. You could also have a nice little breakfast or something, at your parents home the day of, and have photos of that as well? That would be more informal and he wouldn''t have to dress up. More candid celebration shots. That might be an added option? I know it''s a difficult situation, but I think as long as you keep his comfort in mind, you''ll be fine...

 

[Mara]

this situation sounds so close to one i was involved with years ago, i had a good friend whose wedding i was in and her father had something similar, there was a name for what he had i think...but basically he did not recognize or understand words and would talk to you in this gibberish language but to his mind he was speaking clearly. i don''t quite know all the details as i didn''t spend much time around him, but he was pretty quiet for the most part...and didn''t seem to really have too many outbursts but i imagine he was frustrated probably wondering what was going on, who knows the level of understanding he had at the time.

i will just never forget this scenario though because he was able to function and move around quite normally and understood many things but just couldn''t communicate back too clearly. i guess sometimes he was kind of lucid and other times he wasn''t. so he was driving the bride/my friend and myself to the church and he was talking in his gibberish language and my friend, who was typically the sweetest girl ever...totally snapped and like started screaming at him about how he should shut up because no one could understand him anyway and she just basically like went off on him, and there were a lot of cuss words involved, and at one point she said something like ''you don''t even understand me do you?''. i was so shocked and astounded, all i could do was sit there. he just laughed and said something back to her and it made me so sad because i knew he didn''t understand a word she said or that she was upset or speaking to him in such a horrible manner.

anyway, she turned into seriously evil bride that day of her wedding, treating everyone so badly after that....it really colored our friendship and i purposefully lost contact with her afterwards. she was just too dr jekyll mr hyde that day...it made me question our friendship and what was in her heart. anyway...i will just never forget that moment in the car with her father and all the anguish she was probably feeling about her father being ill and who knows what he was feeling...but man. i know that people can turn on their wedding day but that whole thing and the rest of the day (including a time when she ordered me out of the brides room and made me stand outside because i wasn''t putting her dress on the ''right way'') were just so horrible that i never could look at her the same way again.

so my heart definitely goes out to you in this scenario, i would agree with the others who say find a way to include him, either before or after the fact (maybe he can be involved in the dress rehearsal and he could think it was the real thing?)....but i wouldn''t involve him on the day of the ceremony..for various reasons. really because i wouldn''t want to subject my beloved family member to anyone else, a crowd, in a church, a formal ceremony, too much pressure. i am so sorry that you are having to deal with this and understand how sad you might be to not have him there but think of his best interests. good luck and you are such a good person for thinking about this beforehand.

 

[Efe]

My heart goes out to you. I know this has to be very difficult. Is there any way that you can have whomever is performing your wedding meet you and FI at your dad''s home before the wedding to do some sort of wedding blessing. That way he will be in his comfortable surroundings and will also be a special part of your day. This might work if you don''t have a problem with FI seeing you before the actual wedding. Maybe even a special trip after the wedding/before the reception?

 

[cara]

Wow, tough situation. I would think really hard about what he is capable of, and if it is reasonable for him to sit through the whole ceremony and all.

My grandfather just attended my wedding, is well on his way on the dementia path (though he sounds slightly more functional and aware than your father), and luckily it seemed to go OK. But he has deteriorated so much of late that is was really more about all the family seeing him there than it was about him being process what he was attending.

Even last year, when my grandfather was doing much better than now, I was concerned about the strain of watching him and traveling with him on my parents. My mom really wanted him to come and made it happen, but my sister clearly felt it was the wrong decision. And we were definitely lucky - it could have gone much worse.

 

[sera]

So sorry to hear what your father is going through; I know it''s a very sad and difficult situation for you.

With his problems remembering and communicating, have you tried using pictures? If his communication is very impaired, pictures could be used to represent common things he wants to communicate.

And maybe since he forgets you are getting married, etc, what about having a book... pictures of people with names, your wedding invitation, a picture of the church you will be married in, etc?

What about getting him used to going out by starting small? Walk to a corner and back, then further and further? Or getting in the car and sitting in it (with ac on) and then going around the block and then maybe going to get an ice cream or something special he likes, then driving to the church, etc. Maybe even having a place to sit that will be similar to how it will be at the wedding... like if there are pews in the church, have a bench at home for him to sit on... round tables at the reception, have the family sit at a round table with him, etc... then maybe he would feel more comfortable if "it''s like at home." And maybe get him use to a suit a piece at a time. Maybe it will work out that he can go for a short time or at least for some pictures.

You could try some things that might help and then as it gets closer to the day, decide what is the best decision and be ok with whatever you decide... the love is in the heart wherever he may be when you get married, but I know it''s sad to think of him not there with you.

 

[risingsun]

I really feel for you. My Dad had Alzheimer''s, when I remarried almost 12 years ago. Since he did not have public outbursts, he was able to attend and walk me down the aisle. As we started to walk, we came to the runner and he couldn''t understand how to step on it. We had to take a some time so that I could help him take that first step. When we got to the pastor, my brother-in-law was assigned to look after Dad. He got him seated and took care of him throughout the ceremony. He was supposed to help my Dad get dressed that day, but found him already in his suit. It was a rare, lucid moment for him. Dad was able to dance with me at my wedding and I have some wonderful photos of us. Not long after the wedding, his condition deteriorated significantly. Within six months, we had to hire 24 hour care for him. If my Dad was in a similar circumstance to your Dad, I don''t think we would have been able to include him in the wedding. I think some of the suggestions on this thread are very good alternatives. Having him attend the rehearsal and even try to walk you down the aisle might be a meaningful gesture for both of you. If that doesn''t'' work out, at least you tried. If you know that he isn''t up to this, than time spent before the wedding and photos together do seem like a way to include him without harm. Whatever you decide, my thoughts are with you.

 

[xiuying]

My heart goes out to you and the many members of this board that are familiar with this kind of situation. I am so sorry.

I am fortunate enough that I will likely not encounter this problem at my wedding, and the suggestion I have may be very odd simply because I haven''t had to think about this kind of problem before. You mentioned that you would like for your father to feel comfortable, and at the same time be able to view the wedding. It is hard to determine from your post how much your father understands at this point. Would it be at all possible to have a live video feed of the ceremony going to your father''s house? He could be most comfortable in that case, but he would still be very much a part of the wedding as it was occuring. With laptops, good internet connections and webcams, live videos actually wouldn''t be as difficult as it may sound. I know it would be extremely unconventional, and I do apologize if my idea sounds like it may be coming from left field, but it would be one way to give your father the comfort he needs while still being a part of your wedding.

 

[xapora]

Unfortunately my dad is at the point where he doesn''t understand pictures or video. He watches TV during the day but he can''t really pay enough attention to to realize what is going on. His facial recognition is off also, even to the point that he thought my mom (a white lady with blonde hair) was Oprah!

That doesn''t mean I won''t show him pictures/video though, I will definitely attempt to get him to understand.

Thank you for all of your wonderful suggestions and advice, though. It means a lot to me and it was really, really helpful in helping to calm my fears and nerves a bit.