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Topic But I don't want to RSVP Go to previous topic Go to next topic Go to higher level

By parkinit On 2011.11.08 23:07
We are invited to a lot of events and, of course, around Christmas time the number increases. We used to attend a lot of social events and I know "we" caregivers are told to encourage our spouses to get out and allow them to be as social as they want to be. It is me that doesn't want to get out. Why? It stresses me out trying to watch my spouse and I'd rather stay home than be that stressed just so we can be "social." Here is what I deal with:

1. Being late. We are always late to events and it is oftentimes embarrassing to be late.

3. Will he damage something with his power chair? He HAS damaged many items when we go out and it doesn't seem to phase him at all. He has damaged furniture, torn off doors, scraped walls, knocked down gates, etc. These are only the ones I know about.

2. Will he freeze up or will he not? He oftentimes tries to walk into places with his cane, but may freeze up. Then I have to run out to the car while he leans against something or someone struggles to take him to the nearest chair. If the facility or home doesn't have wheelchair accessibility then I have to struggle with him half leaning on me and half being on the brink of falling as we try to get him out the door.

3. Drooling. No, it doesn't bother him. He can drool all over the floor, his shirts and pants. If I try to discreetly give him a hanky, he tells me I'm the only one it bothers that he is drooling . . . right.

4. Don't I have a vote in this? It seems if he wants to go to something, I'm forced to go along whether I don't want to have to struggle through the night or not.

I know some are going to respond to talk openly to my spouse, but I have. He has some dementia and may or may not remember our conversation. I feel guilty for robbing him of this apparent pleasure.

He does get out weekly to a local meeting where others have assured me "we will look after him." He doesn't know they have told me this, but it provides me with relief knowing others know the situation and are willing to deal with him/it. Also, he has a dear friend visit once a week and they do whatever he wants during this visit - which may or may not include a drive to run errands.

How do you balance public embarrassment with "being social." Don't I have a right to say, "I really don't want the stress of being seasonally sociable?"

By LOHENGR1N On 2011.11.09 00:06
parkinit, I don't know about others but I always answer any invite with qualifying it as a it depends on how I'm feeling when it's time. Maybe you can rsvp with a subject to change depending on health or condition at the moment. That way you can include your health and how you're feeling when the time comes and they don't have to know wether it's your spouse or you. Sneakily they'll assume it's your spouse who's feeling under the weather, just send answers out when He's at his weekly meeting.

By karolinakitty On 2011.11.09 08:10
parkinit... I am one of those who believes in the social activities and getting the pder out..but....I also know how stressful it can be on the caregiver...watching and wondering and worrying and trying to make them look not so imperfect....so here is what i do..maybe it will help.....

I always answer with..it depends on if it's a good or bad day....they always understand

If it's somewhere maybe I am not too comfortable or I really am not up to the socializing...I let him know he's on his own... lol ...I will go..socialize but keep in the background..let others do the "caregiving".. more or less turn my back..whatever happens ...happens and I let others take care of incidents....I figure if they can't accept things as they are ... then they won't invite us back....

We all know the outside things that go on...the drooling, stumbling, the spills...ya know all that stuff....sometimes we as the caregiver want the outing to go as "normal" as possible so we tend to hover and make sure it does. You need to back off...i say that with love...i really do.....sometimes when you go out in social situations you need to just relax and enjoy yourself and forget about them...hard to do... completely understand.....but do it....

Another thing you can do is call in some favors..perhaps the friend coming once a week will take him to an event..so you can just chill...
I also find that honesty sometimes works wonders....One time i just said..he really wants to go but I am sooooo tired, could someone come get him?.....that way you don't even have to get dressed and you can stay home and relax..or catch up on things.......All our new social people( i say it that way because most older friends have fallen to the wayside) know and understand how much I love him, but, also how much I need time for me.....I actually get offers now for social events where they offer me the out.....

I guess after all that..I'm trying to say...don't put yourself on alert...go with things and let the chips fall where they may...and don't stress before you even get there......

By parkinit On 2011.11.09 12:07
KK - I understand your response and Al's, too, but also in the world of etiquette (and I've been on the receiving end of this recently), you don't say "maybe" when a $20/dinner is at stake. People want to know. I hosted a dinner recently and had several "no shows." It cost the person hosting the meal to have "maybes" or "no shows."

Also, how can I turn my back when my spouse is ramming into someone's beautiful antique furniture without a care in the world and a large scratch suddenly appears or the leg is broken and fine china on the table falls in shambles. I don't feel that it is "up to others" to take care of my spouse when we go to social events. They didn't come to the event to have to "hover" over him either. They didn't invite him knowing that he would damage their walls, break their furniture, etc.

This is why I feel obligated to decline almost all invitations. Al, you're right, I should probably respond to these while he is away and he will probably not remember that we were invited in the first place. I'm just stressing thinking about stressing! ha ha

I did recently suggest that I go with a friend to an event. He suggested that I request "a special tour" just for the two of us. No, I don't always want to request special considerations. Finally, He agreed after I said I would "take lots of pictures" (it was a combination of touring a new facility with dinner included).

I think I'll take Al's good advice and just decline while he is away from the house or not around. Thanks to you both for your response. It helped me work through this in my own mind.

By karolinakitty On 2011.11.09 20:32
I guess truthfully i wasn't thinking in terms of dinner parties of that magnitude....

Shoot..the closest thing my friends have to antiques are the rusty old tractors in their fields...lol..

By barb On 2012.02.06 12:24
It was the getting ready that wiped me out. It takes him several hours and he always wants to shower. Even if everyone else is casual he wants a nice button down shirt
unfortunately it is hard for me to button (I wear pullovers). By the time he was ready I was exhausted. I never had time to put on make-up. We were always late and stressed out

By seawench On 2012.02.06 16:20
Hi! I've been reading this site for awhile but finally got a log in. My PWP has Pd plus (MSA) so we have had a really fast decline. As for invites the first two years he was housebound due to mobility and other health issues.
But now after a few proceedures, some wonderful incontinence devices and a scooter he is raring to go. I used to be skittish about taking him to church with me. It was my time to get away and worship and recharge and it seemed like when he came I was still "Working", but ever since he got the scooter he hasn't missed a service and people are getting to know him.
The result is the guys at the door now know how to put the scooter together (we still have a sedan so the scooter has to breakdown) and get him out of the car and park him in the sanctuary. They whisk him off to class after and he socializes til it's time to go.
I'm learning how to not feel embarrassed by his "issues" and let others get used to them, let them care for him, and know in my heart that they are doing this just as much for me as for him.
I have adopted the basic philosophy that you all are going to have to understand and we will be on time, late or not be able to come at all - it just depends and we have no control.If you want us invite us if you can't cope then don't, if we feel that it is beyond our ability we will decline and if we can find alternatives we will.
Fortunately we don't have the damage issue and we would decline or find other ways to socialize if that were an issue.
One last thing this site has been extremely helpful and because of it we have been prepared for the hospital and surgery, and had an amazing trip on the plane to a niece's wedding all because of the tips and advice you all share - thank you
Seawench


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