Our son is getting married Oct. 3rd. My original plan was for John to attend the ceremony but not the reception. Our son really wants his Dad there for the reception as well. Family and friends have come together with a plan that will make sure John is well looked after and allow me to enjoy the wedding as well.(aren't they wonderful?) This week Johns facility had their first family and friends night. There was a good turn out of about 50 people. The room was crowded but we found seats against the wall. All was well for a few minutes then Johns face got red and tears were in his eyes. I asked what was wrong and he said "ohhh all these people." We beat a hasty retreat to the hall. We sat on chairs just outside the room and he was fine. I am rethinking our plans for the reception. If he felt overwhelemed by 50 people, how will he feel around 250? Our son and future DIL arrived just after the incident so we talked about it right away. They want to go forward with our plan and suggested requesting a mild medication for the reception. I fell so torn about this. My heart says don't deny John and Johnnie this very special occasion and my protective side says don't put John through it. John seems to understand the wedding. He tells the aides that he's going to wear a tux. Would you agree it's worth trying? We have a bailout plan in effect where my BIL would return John to the NH if things became too much for him. I already know this is what I'm going to do but I would like to hear your thoughts. Curse this damn disease, this should be one of the happiest days of our lives. xox cs
Go for it, cs. Sounds to me like you have plenty of backup and support, so whatever happens you'll know you did your best to make it a great day for everyone. I'm sure it will be a very happy day for you. Is he really going to wear a tux?
Can understand your conflict! Sometimes in protecting our loved ones we deny them in a wierd way.
Since you have an escape plan, if it were me I would go ahead with the plan. Even if he lasts for a short time there will be pictures that your son will have for the rest of his life showing both parents on his special day. Talk to your doctor about a mild sedative and try it before the wedding to make sure you do not have any untoward effects from the medication.
cs--My gut reaction was the same as your original plan. The ceremony will be quiet and there won't be nearly as much stimulation as during the reception. At what point will the pictures be taken? The ceremony is really the meaningful part, and John has already literally shown you that he can't take crowds. Besides, at the reception, your son won't really be able to spend much time with him, mingling with all the guests. Let him wear his tux, enjoy the reception, and then your BIL can take him back to the nursing home. I know that would be the only way I could really relax and enjoy myself, if I were in your position. Otherwise, even with an emergency plan in place, I'd be waiting for the other shoe to drop the whole time. It's tough to compromise sometimes, but may be the best thing to do.
JeanetteB...thanks and yes he really is wearing a tux. I'll try to post pictures on facebook. scs...thank you. I hadn't thought about a trial run with the sedative. marilyninMD...thank you also. Most formal pictures will be taken right after the ceremony. You're soo right about the other shoe. I'm gonna try hard not to helicoptor.
Last Thanksgiving, we went to DH's son's house for dinner - there were 20-25 people there, including both sides of their family. DH was VERY uncomfortable and we talked about it at his next appt. with the neurologist. The neurologist looked squarely at me and asked why I would put him through that. I answered that it wasn't that I had forced him to go to one of my family's affairs, it was HIS family. He said he didn't care, that it was up to me to keep DH out of situations like that that were upsetting to him. I am just sharing this to give you another perspective. I am already worrying about turning down their invitation this Thanksgiving.
cs, while we want to do what is best for our spice, and not cause them undo anxiety, we have to do what we can for the living, and for THEIR needs and memories. I would do a trial run with the medication to see if it works. I would take him to the wedding, and after the pictures are taken, I would have the family/friends help you take him to a quiet room to rest and someone stay with him so that you can enjoy the reception, and then go get him after 30 minutes or so, and see if he can "mingle" a little, and if not, then have someone else stay with him so that you can continue to visit and make memories. This way, in my humble opinion, you have done what you can to please everyone. Your son will have memories of Dad being at his wedding and reception; you will have memories (and pictures) of you both at your son's wedding; you will get to visit with everyone, and he can to - if he is up to it.
Please let us know how it goes, and I will look forward to the pictures!
buzzelena, your neurologist is not a member of your family, and I don't think he had any right to talk to you like that. I would not go back to him. We ALL get in uncomfortable situations, and we don't have AD!!! We DON'T want to upset our spice, because the ramifications can be difficult for a few days. BUT, we have loving families that should be able to say "goodbye" in their hearts when they see them for what could be the last time while they are mobile. There are or should be empty rooms where you can take them for "escape" if necessary. My husband just closes his eyes and "sleeps" if it gets to much for him. I want to tell you all what happened the day before Diane's memorial service.
EVERYONE was at the house, and it is not a big house, just average size. The den had upwards of 10 people in it (12 x 20) and people were in and out, sitting and walking - and through it all, my husband was sitting in his recliner, letting it all go by him. Our 5 year old granddaughter went to the bathroom and got Granddaddy's hairbrush and went to him and brushed his hair. He even bent down so she could!! Neither of them had said a word! Then, she got one of her books, crawled in his lap and started showing him each page. He watched her and looked at it! Then she got down and went to put the brush back and he got up and went to stand at the back door to look out the window of the door. She came up beside him and said "I want to see out too" and he reached down, lifted her up, and they looked out the window for a couple of minutes, then he put her down and went back to his chair! We were all dumbfounded!!! Number one, he actually connected with her, comprehended what she was saying to him, remembered what to do and did it! We were thrilled! Of course, he went back in his "sleep mode" and stayed there after that, but for 20 minutes, he joined us and made memories we all will cherish.
My DH is in early stages, but social anxiety has been one of the first things to affect him. I don't know if this helps or not, but somehow with him there will be times that he is fine, and times he is not. We recently went to a friends for dinner, several people there, first time in....well a long time, and he was fine. He didn't want to stay long, but that was okay. Other times, he has made a scene, and embarrassed me. He seems to do better if the attention is focused on others, and not on him. If he feels people expect something of him, he gets anxiety. But with such an important occasion, and so much support, I would go for it, who knows, maybe it will be great!
Social anxiety -you never know how they will react in a multitude of people and lots of activity and movements going on around them.
they may last for a very short while or not at all. if you have meds that can be admininstered to calm him some during the ceremony i would use them. having a wheelchair available to push them in/out of places is a plus too instead of making them walk alot.
i agree with mary that small doses in both the ceremony/pics/reception are ok but heed warnings of anxieity and time to give him a quiet place if he shows becoming distraught.
if it were me i would hire a trained caregiver to have on hand at all times to take care of his special needs so i could enjoy the wonderful time without having to worry! i tend to believe family can make things worse if they dont know how to handle the situations that can occur with AD divvi
Ladies - Please, I feel like I am intruding. Where are the men? We all have similar experiences? I hate to be the only man involved in this conversation, but, the coming family gathering for Thanksgiving is something that I am wrestling with also.
I took my DW to our Sons house for labor day. Her first trip since surgery, rehab in nursing home, etc. The trip was difficult and she was uncomfortable in the house with our children and grand children. She couldn't sleep the first night and wandered around thru the house. Not able to really enter into the conversations. Always wants to talk about her Mother and when she was growing up. So, What to do?
I appreciate you all discussing the and look forward to reading your suggestions.
Dean, my grandmother and mother in the later years only talked about their childhood. My father-in-law talked about the war over in Europe. I learned a lot about my grandmother and mother that I didn't know. My only regret is that I did not write the stories and escapades down! If the kids are sensitive they will listen to her stories and interact with her. Maybe you can suggest this to them. Ask them to write down what she tells them and them put the stories together as a memory book.
A thought - is there a chance you can stay in a motel instead of at their house?
dean--- Have no idea of distances. Could you arange to arrive just shortly before meal, eat and then only stay a little before going home? And be sure there is a room she could retreat to where it's quiet. As far as what she wants to talk about, if any of the grand kids are old enough, they should have some interest in her growing-up years. That might help. Alternative might be to go late, and have supper of left overs with whoever is still there, but after main hubbub is over. Just ideas.
I've been dealing with this social anxiety for a long time and he's still moderate stage. Whatever the reasons, it makes me feel very isolated in a group when he has no interest in joining in. Just now I came in from my morning swim and looked into the casual dining area that overlooks the pool and saw lots of people at small tables of 4 to 6, all chatting away and enjoying themselves. And I know that if we were in there he'd be "turtling" and by now no one wants to sit with us. We live in a retirement complex where many people get involved in all sorts of things this place has to offer and as a result get to know lots of people. We've been here over five years and he has yet to find anyone he wants to get to know. His life since retirement 27 years ago revolved around golf six days a week. After some hand surgery that put an end to that he never developed any new interests at all. We've only been married six years and at first I didn't really notice this and we still are great when it's just the two of us, but I need more. I 'd noticed that when we travelled he didn't seem to like anyone else and it got worse to the point of rudeness. Now that our travel is pretty much over I can't seem to find anything else that would engage him. However, I now realize that much of what we saw in our travels was wasted on him. The true enthusiasm was missing more and more. I get out by myself and have lunch a couple of times a month with old friends, but the rest of the time I feel like I'm all alone and at the moment am trying not to cry.
PrisR, My DH has always been a "loner" and I don't expect it to change with Alz. When I read about some of our LO's going to a Day Care program I can't imagine him ever doing that. So far he is still in the mild stage but I don't expect it to last especially after yesterday (see Now What post). He doesn't mind me going out to lunch with my ladies circle from church and I will be going to a lunch on Monday....one of our older ladies is moving to Georgia to be closer to her family. The problem is the lunches are few and far between and I keep thinking I should do more for myself but I don't know what! I probably am alone but it doesn't really bother me so maybe I am a "loner" too. We all need to do whatever we are comfortable doing and not feel guilty about it. I don't know if any of this helps you but I do hope you will get to feeling better.
PrisR and Jean21--may I say "DITTO"? From our earliest years DH has always don't better with small groups and one-on-one activities. He never could do larger group things which required much social interaction. Neither crowded events nor family reunion type things. I attributed it to the dificulties he had separating input from multiple sources and difficulties processing information becaus oif his learning disabilities and also later his Mental Illness. Now there's advanced VaD as well. When we were raising our Daughter, I was involved with school related thigns with her, as an added outlet. Isolation became the norm after she moved to California and DH was Dx'd. I had already learned that I had to take care of myself if I was to Care for him, after the Mental Illness crisis. I was doing that to some degree, but since his Dx with Dementia, I have started work harder at self care. He may not be 'happy' when I do something for me, but that's life, and he will get over it. We can be 'loners' but we still have to live with ourselves. We have to do the medcal care, but we also have to maintain our own mental health and self identity. I plan to survive this Dementia trial. To do it I have to maintain "Normal world" contacts, and build more. I now get a whole 4 hours per month of respite care for DH so I can do 'me' things. When this was first set up, my immediate response was, "What the H-- do I do with that?" Sad, huh. Now, I'm going to an exhibit with demonstrations on Herbs and Gourds. I'm planning to research and plot a new landscape for our yard--less hands-on maintenance. I'm planning to check out a couple stores, other than the one mega-store we go to every Sunday morning for DH's coffee time. I'm still pushing at the local paper to do an article or feature on Caregiving--taking care of the Caregiver. I haven't given up on that. As I have started pushing myself to make these things happen, I'm feeling better--have a better outlook. This is one more thing to do on my plate. But it is just as vital, if not more so, than all the other things I have to do to care for DH and keep the household running. If, we don't take care of us, who's going to take care of the rest?
A couple people have said there's nowhere they want to go, even if they can leave their LO's. Have you considered volunteer work? It does not have to be much, many organizations are happy with whatever help you can give. It can be a wonderful change of scene and way to meet people. I've been a member of a local group (called The Sunflower) that organizes visits and outings for handicapped, elderly, shut-ins, whoever seems to need it. The other volunteers have gradually become a large and loose but valuable circle of friends. Sounds kind of ironic that I have another sort of "care-giving" task, but it's so different, it's like a breath of fresh air every Monday morning when I visit my elderly person, take her for a walk (she has a walker but is almost blind, so dare not leave the house alone) who has become a very dear friend and always wants to know how I'm getting along with dh. ANd I'm only gone from home for an hour. The outings and other activities are all voluntary on a "whoever has time" basis. At a meeting earlier this year I told everyone about dh, most of them knew already. But by that time he was starting to come in search of me whenever an activity was taking too long, so when he does that now everybody knows what's going on and are able to handle it well. Lately I've been taking him along on the outings as a paying guest; of course he thinks he's a volunteer and gets on well with the old ladies and gentlemen. He doesn't mind listening to their stories several times or retelling his own. And EVERYBODY in this group has learned a lot about AD!
Although seldom do we go anyplace overnight but on the few times we did I always got a Motel room. There we can each relax a little and not be in a strained situation. He does not do well in someone else's home, even our daughters. He is ok for a meal and visit a half hour after then wants to go home. I don't insist we stay because he starts getting antsy.
Mary, that was a lovely story about your granddaughter. Little children and animals have a sense about the old and sick. Our cat watches Paul. She sleeps in the hall outside his door and when he starts to get up she growls to wake me. Situations like this are very nice to observe.
Mary, loved your grandaughters story. its so true they seem to gravitate towards the innocence of children. mine too smiles alot at my 7yr old grandaughter and she can get get him to do stuff i cant:) divvi
Dear cs: When our son got married, DH was deep into AD but we all wanted him to be at the wedding. We hired an aide from his care facility for the day. (The aide brought his little daughter, all dressed up & pretty.) DH had a bit of med to take the edge off, not enough to make him too sleepy. He was fine during the ceremony. It was a bit unusual, but our son, DH and I all walked down the aisle together so we could keep hold of him, then he sat quietly with me throughout the ceremony. Afterwards he was doing his usual aimless walking about, the aide was with him all the time so I didn't have to watch him, (although I did from the corner of my eye). He would 'talk' with people, some were surprised at how much he had changed, told me afterwards how bad they felt. But he was there & we have the pix to prove it. Our son, his bride & I had all agreed that if he acted up, the aide would be there, things would be resolved and people would just have to deal with it. He was so much a part of our lives and AD was something we all had to deal with, it was life--our life--and so I think that if your son wants him there & his bride understands, then do it. If something happens, it will happen, but they'll still be married and you have a plan--as we did--everyone seems to be on board--so enjoy.
If you will permit me one more comment inre socialization please. I still insist that we go to dinner with another couple each week because I want to. But, it is getting harder for me to visit with them because DW won't quit talking once she starts. Of course, they are understanding, but they aren't much interested in what she is saying and neither am I. I know she can't help it, but, if I'm not careful I can let it ruin my whole evening.
Now, I will shut up (only for a little while tho).
PrisR - I would get involved with activities there at your place. You have to have a life and this seems like a good situation where you can have 'a life' outside of AD. If you are in a situation where your husband just sits there, I would let others know he is fine. If people refuse to associate with you because he will not join in, I would call that 'shallow' or they are afraid they may 'catch' something from him. My hb was the social one in the past - he would be chattering up a storm with guys and I would either stand there or be sitting somewhere. I am not the typical 'female' so could always talk with men better than women. I am not into fashion, makeup, was never pregnant, did not have babies (they were 1 &2 when adopted) so have little in common with women. In fact, we usually hung out with the seniors groups in our churches because their conversation was something we could identify with.
So go for it. Get some outside contact - you deserve it.
DH, Please don't "shut up"..your comments from the male point of view are interesting and important..I have enjoyed your posts very much. Keep them coming, please.
dean haywood, I know just what you mean about the constant talking.My DH talks so much about nothing that I could scream.I started a discussion about that a while back "constant talking" it is a problem for many of us.I think DH just likes the sound of his own voice.Then some say their Dh/Dw's don't much say much of anything.Must depend on the stage if the disease.
Morning everyone...thanks for you thoughts and suggestions. I think everything is set for the big day on Saturday. John will start taking atavan today to make sure he tolerates it well. The staff will shower shave and dress him in the morning then my BIL will pick him up and bring him to our house so I'll have final approval of his appearence. I'm packing a bag for him which includes a change of clothes , his beloved Crocs and a baseball cap. There will also be additional adavan, a food processor, extra lined Depends and thickit. Did I forget anything? Now that my ducks are in a row I'm getting really excited. PS. You know how they say no wedding goes off without a glitch? Well, two days ago my son had a minor car accident. Sunday his brides hair dye came out waay too dark and my son may have to fly to Chicago on Friday (rehearsal day) for a much wanted job interview. And I thought I'd be the one out of control at the end. lol xox cs
Dear cs: So glad it's going this way. Even with a possible problem, it's going to be a memorable day. Not only are you doing exactly what we did w/DH for our son's wedding, but the bride also had a minor fender-bender & a bad flu the day before. I, who never cook, made a big pot of steaming chicken soup which she ate completely. Everything went off just fine, great memories & pix. It's now 10 years and they're very happy. I send you and yours the same beautiful event and a happy, happy future for the dear couple.
Happy wedding and wonderful future to son and bride. We'll all be waiting for a report on the festivities as well as how DH does. You just ENJOY it all, dear Mother-of-the-Groom!