Should I take DH to out of state wedding?

starwood

Our grandson’s wedding is planned for late March out of state and I’m struggling with whether or not to attempt the trip. Our choice is a 5 hour drive or flying (direct, non-stop). DH is wheelchair bound, incontinent and has major balance issues. He’s in moderate (maybe late stage 5) range. He recognizes family members, is still interactive, and would love to attend his oldest grandson’s wedding. I have several concerns. It is extremely difficult to get him in/out of a car, but I think driving would be less stressful for him (and me) than flying, even with our daughter and son-in-law’s help. We would drive with daughter and SIL. Stops for food/bathroom breaks would be difficult. Another concern is just getting him in/out of bed at the motel (we’d have 2 nights there). I’m able to manage it alone at home (with my back issues) because we have a hospital bed, but I would need someone else’s help without the hospital bed. I always fear a toileting problem when we’re away from home, and it can be a major problem (I’d have to plan on what supplies I’d have to take to cope if it happened). He has celiac and can have food reactions unexpectedly, causing bowel issues. Another concern is just having him in a strange place and out of his routine. Already, there are good and bad days (when balance, strength and cognition are more compromised). To be honest, as much as I personally would like to celebrate the occasion, I am truly dreading the idea. There really isn’t any other family member who can take over his care for a short time (since they will be busy with wedding responsibilities) other than our daughter and SIL who want to celebrate her nephew’s big occasion. Even then, they are both uncomfortable with anything other than just being with him for supervision. On the other hand, I don’t want to deprive DH of the opportunity just because it would be lots of work and stressful for me. I’d love feedback from anyone who’s had similar situation to deal with.

CindyBum

I would definitely not travel with him at this point.

I took my DW on a 5 hour drive to see family over Christmas, she is not wheelchair bound or incontinent. It was the most stressful drive and trip I've ever experienced. She tried jumping out of the car on the freeway, yelling that we were going the wrong way and she "had to get out of here", after yelling at me for hours about how I was going to wrong direction and taking her somewhere scary. She was lost and confused the entire time we were staying in this lovely, but utterly unfamiliar to her, vacation rental. She barely slept, so I barely slept. She hated every minute of that trip except for a 1/2 hour with her nieces and nephews. I hated it too. There really is a point when they can't enjoy what you think they might still enjoy.

Bailey's Mom

I agree with CindyBum…what might sound like it would have some rewards for your DH would probably, in reality, be a nightmare for everyone involved, esp your DH. About 6 months ago I took my HWD on a vacation to the Fl Keys…a place where we lived for 13 yrs and have always loved to visit. It is a 4 hr drive and you would have thought we drove across country…he complained the whole time and was very upset by the time we arrived. We had a beautiful cottage on the beach and although he did enjoy sitting on the beach looking at the water, he was totally confused most of the time, esp at night. He couldn't find the bathrooms, bed, light switches, kitchen, and was up all night eating, which he never does. By the 3rd and last day, he didn't know who I was…thought I was a woman he picked up on the way and was wondering when we were going to meet up with his mother who has been dead for 2 yrs. He is continent and ambulatory, so at least I didn't have to deal with that…just saying that it sounds like it would be a better idea just to face time, zoom or something similar and not risk having him decline over it…I don't think it would be a pleasant experience. Follow your heart though…I could be dead wrong on this.

SiberianIris

From what you described, I would not attempt this. Too many variables you can't control. You're going to spend the entire time thinking "what if?". And, if something does go wrong, you'll be in unfamiliar territory 5 hours from home.

My nephew (Mom's grandson) got married last fall in the mountains, about 4 hours away. At age 95, in late stage 4, and still mobile (barely), I did not take her, and it was the right decision. She would have struggled with the large crowd, loud music, and unfamiliar location.

While Mom usually recognizes close family members one-on-one, I've learned that if there are more than a few at the same time, and especially if it's away from her home, she gets confused by who everyone is, even though it's her own family. For Christmas Eve, we did our usual luncheon with family, about 15 people. She kept asking me "Who are all these people?" "Are all these people my family?" Afterwards she asked me if I had even been there 😐️

frankay

I would not even attempt this. I went on 2 trips with DH (one by air and one by car) and they were a nightmare for both of us. Try to find a respite stay at a MC facility or see if an agency can send someone to help you. If these don't work out you can always video the wedding and have some face time with them in the comfort of your home. Everyone would understand and to tell you the truth , they may be more okay with it than you think since he may become a major disturbance at their wedding. I just don't think you would enjoy the wedding with your by then frazzled nerves; to say nothing about what shape he would be in by then. I hope you can figure something out and be able to go and enjoy yourself with your daughter and DIL. You deserve it. Congratulations to your grandson and his bride!

Biggles

Oh dear I am sorry but I’m also a glutton for punishment, oh and I am also celiac have been since a baby so I understand dietary needs. You said your DH recognises family members, is still interactive and would like to go. I therefore would list my concerns and see if you can tick them off. If not then you have your answer. It will be hard for you no matter what. My first question would be will you have a positive reaction from other family members and guests when you arrive. Will you and your DH feel comfortable. Could you take a dedicated support carergiver with you? Or organise one for where you are going? Blue Nurses or other health professionals? Just like organising help when we had babies. We had a little break last year, I did a little report on this site you should be able to find it. It was about a 3 hour drive, a carefully picked but unfamiliar place to stay and dog friendly, we have a lively Schnoodle puppy. I was so scared and apprehensive, first night my DH said he wanted to go home so I said ok tomorrow but we didn’t leave. We had four days hard work but we still talk about it so as far as I am concerned it was worth it. Good luck this is just another very difficult part of this horrible disease it cuts into families and friends and is enormously stressful.

sandwichone123

When my dh was about stage 5 he got where he could only tolerate two or three people at a time. Even at that, if the two other people chatted he would feel left out. Any groups larger than that and he was just overwhelmed and felt disrespected by all those people talking to each other and not to him.

GothicGremlin

@starwood - I think your post kind of sums everything up. There is so much going on with your DH, that I think putting him through all of that would not be doing him any favors - even if he really wants to go.

I had a similar experience when my uncle died and my sister wanted to go to his funeral. It would have been only an hour drive, but she was incontinent, couldn't deal with crowds, and was mostly in a wheelchair. Getting her in and out of a car was a nightmare. Just getting her in and out could easily add 20 min each way.

Any trip we took to the doctor's resulted in sheer exhaustion for her. And that was only a 15 min drive.

Really, I wouldn't do this.

SDianeL

I only took one trip with my DH and regretted it. My daughter drove. He wasn’t in a wheelchair or incontinent. Being out of his routine caused anxiety and agitation. He didn’t eat much at all. He sat on a sofa by himself and was upset because the TV didn’t have the same channels he watched at home. He was miserable and so was I. I would face time the wedding unless you can find respite care for your DH.

White Crane

Our twin grandchildren were married in separate ceremonies three years ago. I wanted to attend the weddings but had no one to stay with my husband so I could go. He was not incontinent nor was he wheelchair bound but he did not recognize family any longer and was a fall risk. Our daughter and her husband came to our rescue and made a way for us to attend both weddings. They flew in and rented a luxury van with comfortable seats and lots of room and drove us to each wedding. Our youngest son borrowed a wheelchair from his church so DH would not have to walk and risk falling. The entire family rallied around us. Our daughter helped us at the hotel to get settled in. We were able to attend the rehearsal dinners as well as the weddings and receptions. It took some work and a lot of patience but it was worth it. DH didn't know where he was or who was getting married but he conducted himself very well during the ceremonies and enjoyed the receptions. He enjoyed watching the people dancing and our children and grandchildren were all very considerate of him and very attentive to him. When we got home, he was glad to see his recliner and immediately relaxed in it and went to sleep. The next day he had no memory of being gone but I had wonderful memories to treasure in my heart.

Brenda

CampCarol

My DH also wants to take a spring trip far away, and I am really not sure if he will be able to handle it. So we’re going to have a little practice run…2 nights, 2.5 hours away. My sister and BIL have agreed to come with us and are prepared to turn right around and come home if necessary. I’m hoping this will give me a better indication of how he will do away from home. I like the idea of a luxury van and will look into that, ty!

cdgbdr

I think it will really be up to you and what you believe is doable. I took my mother in a rented van with a hoyer lift and rented a hospital bed at our destination to take her to a family reunion, along with her hired caregiver and her young daughter. I'm not sure it was worth it but by golly we did it.

BPS

My wifes mom died a few months ago and I decided not to take her to the funeral. It would have been a 4 hour drive to get there and she would have sit quietly and talk a little with who ever spoke to her. She would have been upset because of her mother dyeing but she would not have remembered it the next day. My wife has had a stoke so getting her in and out of a car is difficult and she is partially incontinent but needs help when she does use the toilet so stopping along the way would be difficult not knowing where I would be able to help here. I had told her but she had forgotten so she was not aware of if or when there was a funeral so not going did not upset her. I don't know for sure what I would have done if she was aware she was missing it and wanted to go.

jsps139_

I think you may have to think about your grandson and his new wife. What happens if he is incontinent at the ceremony or reception? You wouldn’t want other guests experiencing that. Those are the kind of memories nobody would want on their wedding day. This is their special day and all decisions should be made with them in mind. At least that is how I would look at. ????
Nothing is easy with this disease.

stgharding

https://alzconnected.org/discussion/71905/should-i-take-dh-to-out-of-state-wedding

Hire a male nurse

starwood

I appreciate all the feedback. It helps to get others’ perspectives, along with suggestions. I’m still unsure what we’ll do, although if his physical condition deteriorates more, I definitely won’t try it. I think it would be easier if his cognitive ability was more impaired and he was less aware of what’s going on.

Carl46

Starwood, if you are truly dreading the idea, I think you should listen to your intuition.

housefinch

If it were me, I wouldn’t, because of the myriad possible things that could go wrong. I would not want to disrupt the wedding ceremony or reception they’ve been planning for months. I wonder if you could be seeing the event through your own perspective when imagining denying your husband the chance to go. It’s hard to avoid doing that—I’m not criticizing you in any way. I just am picturing the bride who has been waiting for this day—-and thinking that a bathroom emergency in the middle of the ceremony, or a 911 call in the middle of the reception would devastate her. I would have a fiblet ready, that the doctor advised against traveling—rinse and repeat. Maybe someone can take a video to send you.

Palmetto Peg

I absolutely would not take him. The last trip my DH and I took was a nightmare and he was still continent and ambulatory. He was so confused at night, and kept trying to leave the hotel room. He was rude to strangers, inappropriate language, etc. When we got home, he really never got back to what I had considered his base behavior. You will not enjoy a minute of it! And, the guests at the wedding will not enjoy having a someone there who may get very disruptive. I would either find a respite stay for him or stay home and enjoy the video! Think of yourself first in this case.

RetiredTeacher

https://alzconnected.org/discussion/71905/should-i-take-dh-to-out-of-state-wedding

https://alzconnected.org/discussion/71905/should-i-take-dh-to-out-of-state-wedding

https://alzconnected.org/discussion/71905/should-i-take-dh-to-out-of-state-wedding

Only you can decide if this is a trip you should take. I understand your DH would enjoy seeing your grandson get married but that can't be the only consideration. It will be a very difficult trip on him both physically and emotionally. It will also be extremely hard on you and exhausting. Will you really be able to enjoy the wedding festivities when you will need to be constantly caregiving? Will you regret not going?? Possibly but you might regret it more by going, having your husband struggle and you exhausted and perhaps resentful of making the decision to go. I advocate for face timing with the bride and groom and watching a video of the ceremony. It's not the same as being there but m8ght be your best option.

Denise1847

https://alzconnected.org/discussion/71905/should-i-take-dh-to-out-of-state-wedding

I get that you don't want to deprive him of the experience. However, most AD patients get really stressed and agitated in large groups with alot of noise. You are putting alot on yourself and you are going to burn out for sure. I love the video idea and face time.

sandwichone123

My dh was not quite as far along as yours when I made the decision not to take him to a large wedding here in town. He did not like crowds of people and had trouble navigating conversation with more than one or two, so I decided not to take him. Afterwards, although he was still on Facebook and saw posts and pics about it, he didn't seem to notice or be upset that he hadn't been there.

lenbury

https://alzconnected.org/discussion/comment/235267#Comment_235267

The practice run is a good idea. I did the same with my wife on a short trip to see if she could handle a coast to coast trip. The answer was clear she could not -- the short trip was very unsettling.