View unanswered posts | View active topics It is currently Sat Aug 30, 2014 10:34 pm



Reply to topic  [ 10 posts ] 
 Being included in a family celebration 
Author Message

Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Being included in a family celebration
In July, our grandson will be marrying his long time girlfriend. They've been together eight years. They will be married in the living room of an estate rented for the occasion. They will spend that night in an upstairs bedroom. The guest list has been limited to close family.

Since our daughter was divorced right after the birth of our grandson, they lived with us in the early days of our grandson's life. He and Dale are very close. Dale is like a father to him.

Dale is at the stage of Lewy when delusions and often hallucinations are a daily experience. He does not seem to have them outside the house yet. However, we have no idea how much the disease will have progressed by that time. Dale is not in a wheelchair but balance issues may be in the near future.

Any experience you have had attending a similar family event might shed some light on what we may be facing. Shall we include Dale in the celebration?


_________________
Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Tue Nov 30, 2010 11:48 pm
Profile

Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: Being included in a family celebration
Leone, None of us know about tomorrow, let alone July. I'd plan for Dale to be as much of a part of this celebration as possible. We attended a memorial for Frank's nephew, while standing at the cemetary I could feel him loosing his balance so I tried to get him to walk with me but he just can't process what is being asked. I didn't want to talk to loudly, he finally turned and we walked around, he seemed to get his bearing again. I've tried to figure what stage Frank might be in, he fits in some of 3 and 4. He told me he'd rather not go to family gatherings, our immediate family is only 8, but he interprets the laughing and joking as fighting. I still plan on bringing him to the gatherings although I will try to have a good part of them here.

Good luck with today, tomorrow and for July, it's a very special time that Dale will want to be part of.

Take Care, Gerry

_________________
Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.


Wed Dec 01, 2010 6:44 am
Profile

Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Being included in a family celebration
Thank you, Gerry, for your very thoughtful response to my question and thanks for sharing your experience. It seems that Dale and Frank are very near the same phase with Lewy.

Several people have said it's too early to be concerned about something happening in July but the 'event' is in San Diego and we live in Florida. The fact that the hostess is making plans to include us in a fully catered event puts more pressure on it as well. We are planning to fly to California at the end of January to help with the plans, in fact...

As a church musician, I'm always planning well in advance. :lol: You know, right after Christmas, we start working on Easter music.

_________________
Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Wed Dec 01, 2010 8:59 am
Profile

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Being included in a family celebration
Oh, Leone! It would be so nice to be able to plan ahead but we find it impossible. One day at a time. One foot in front of the other. Carpe diem.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Wed Dec 01, 2010 10:22 am
Profile

Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Being included in a family celebration
I know you're right, Pat. This attempt to plan ahead has been nagging at me since the diagnosis. In fact, that habit has always been a bit of a conflict in our marriage. Dale always did things the night before - and often ended up going to bed at 2 am in order to finish whatever it was. He never packed a suitcase. He would just throw everything into it at the last moment or have his clothes in the back seat of the car. He always said he was too busy.

In contrast, I'm always ready long in advance. Most men wait for their wives to finish dressing. I've always waited for Dale. (Remember Jack Kennedy saying in Dallas that it took his wife longer to dress - but then, 'she looks better than we do' ???)

Dale always wanted to go to an airport sometime and just pick a flight for a vacation and take it. I said that would take away half the fun for me. I like the planning and preparation for a trip.

That's the worst part about Lewy. We can't plan anything, can we?



_________________
Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Wed Dec 01, 2010 10:43 am
Profile

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Being included in a family celebration
Leone, our situation exactly! I've always made lists--and lists of lists--and planned everything in advance [part of the fun of travel, for me!] and Derek would always pack at the last minute. He'd be leaving on an overseas business trip the next morning and I'd ask if he had his stuff packed and, if he had his passport and airline tickets in his coat pocket, he figured he was ready. In the morning he would just throw a few things into his bag and go. But then, he's always been late and I've always tended to be early. Like you, I've always waited for him rather than the other way around. Opposites attract, I guess. :|

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Wed Dec 01, 2010 10:52 am
Profile

Joined: Tue Aug 17, 2010 9:20 am
Posts: 184
Location: So Cal
Post Re: Being included in a family celebration
Leone,
I say include Dale in all plans and remind him often of the upcoming event. My daughter was married in March of this year and when she made her plans had no idea what Ken's state of being would be at the time. As it turned out he walked her down the aisle and enjoyed the many friends who stopped by our table to greet him. The next day he had no idea why we woke up at a hotel but really pulled it together for the wedding day. I believe the 'showtime' that often happens for doctor visits and visitors also kicks in during important events. In retrospect I wish I had brought along a caregiver for Ken, and I would have mingled a bit more. You may consider that if Dale is in need of walking, toileting or other aid. Sher

_________________
Sher (53) married 29 years to Ken (66) who was diagnosed with LBD in 2008, but it most likely began many years before.


Wed Dec 01, 2010 1:23 pm
Profile

Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Being included in a family celebration
Thanks, Sher... You brought tears to my eyes... because I really want Dale involved in this family event if at all possible. Thanks for your encouragement. Today, he is so much better than yesterday. We just went to the grocery store and he carried his cane. That's a new skill for him.

Admittedly, he still is delusional. (He thought this morning that we had been 'arrested' and he asked what we were going to tell our friends.) It's almost as if he has two brains. One brain is still quite sane and loves joking around. That's the man I married.

I agree that we can hope for 'showtime' and that would be wonderful. He did have 'showtime' for the doctor on Monday afternoon... after being really insane in the morning.

_________________
Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Wed Dec 01, 2010 3:21 pm
Profile

Joined: Sat Jul 31, 2010 5:28 pm
Posts: 317
Post Re: Being included in a family celebration
My suggestion is that you consider having a paid attendant with you at the ceremony and at the reception. Then if things start to go south on you, the attendant can take Dale back to the room and you can continue to enjoy the festivities knowing that he is okay.

14 months ago we went to a nephew's wedding out of state. We got to the church fashionably late so he didn't have to sit too long. (These ceremonies are fairly short.) and then we had a room booked near the hotel reception room and when he got tired we just left the reception.

The next morning I went to the restaurant to get a cup of coffee and a newspaper and on my way back a maid walked out of the room she was in and said, in a loud voice, "Nancy, someone has knocked holes through the walls of your room." I went into panic mode. Had Del fallen and punched a hole in the wall with his head. My heart jumped. Then another voice said, "Well, what do you want me to do about it?" And I saw it was another maid. Then it hit me. She didn't know my name...It wasn't me she was talking to. Whew.......

Smiles, Nan


Wed Dec 01, 2010 5:36 pm
Profile

Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Being included in a family celebration
Thanks for the suggestion. The guest list is small and includes only family and close friends. We'll see if a room for Dale can be arranged.

_________________
Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Wed Dec 01, 2010 5:47 pm
Profile
Display posts from previous:  Sort by  
Reply to topic   [ 10 posts ] 

You cannot post new topics in this forum
You cannot reply to topics in this forum
You cannot edit your posts in this forum
You cannot delete your posts in this forum
You cannot post attachments in this forum

Search for:
Jump to:  
Powered by phpBB © 2000, 2002, 2005, 2007 phpBB Group.
Designed by STSoftware for PTF.
Localized by MaĆ«l Soucaze © 2010 phpBB.fr