Can somebody tell me?

[brooksea]

How do you get it across to people that caregiving is a "constant?" I mean, who do they think bathes, dresses, feeds and tends to their loved one's needs?

Rhetorical questions, really.

Why do they think I would want to do all of that and then take him to a party, where all I do is watch him like a hawk, interpret for him and help with personal care, while they are all having a grand ole time? Then we go home - back to our reality.

The level of care has increased significantly and I've noticed that his invitations from friends now "include" me.

(Maybe I'm just a little sensitive at the moment, but I've been sick and feel like I'm going to lose my mind.)

Plan your damn party, but don't guilt me into bringing myself and my husband! One of his friends called me and practically demanded to know if I would bring my husband to a get together in August, so he could "plan things." "All his friends from high school will be there and everyone is so busy and spread out, we need to know if he can come." He threw out a few names and stated where they would be coming from and how it's such a long way to our house and his house would be a better option. Blah, blah, blah...(These people get together several times a year, with or without my husband.) Before, someone would have picked him up and he could have spent the night. Guess that offer is off the table now.

Instead of a party, I'd just like someone to come sit with him or better yet, spray our yard for weeds or cut the grass or do a load of clothes or vacuum or dust or help with a repair or at least ask if they could help us with anything!

Yes, party on, dudes! You do that! :roll:

 

[Miss]

My husband's crew is heading in this coming weekend. Right now, I have a creature that has died in the crawl space under the guest bathroom, clothes from my son's 14 day hiking trip piled in the breakfast room, paperwork covering the dining room table and a layer of dust all over everything. If some of it gets cleaned up, it will be a bonus. If not, they will just have to wade through my reality.

 

[cervus]

Brooksea....I think you need to tell your friends and his that you need help with everyday stuff - things that you're not able to handle now. Don't feel bad to ask. I made up a list of things and got one of our friends to organize a work bee. About 20 friends came by and did everything on the list. They've been back in smaller groups to maintain our lawn, plants, little things that go wrong in the house, etc. And they're pleased to do it. You'll find a lot of friends waiting in the wings to help out. They want to feel like they're doing something. And as far as going out to parties, tell his friends that you're not able to do that anymore and that it's difficult to come home afterwards and then have to provide all the care needed to get your husband in to bed. They all should understand. If they come to your place, earlier nights are now the norm - that's how it has to be. You have to think about yourself too! Hope this helps. Yasmin

 

[cervus]

Missy....let them wade! Or better yet, help you clean up!

 

[BarryG]

As the person receiving the care I know that most people have absolutely NO idea what it takes to just survive when someone cannot do even the most basic things for themselves. They will never get it unless they go through it themselves or look after someone.

 

[jrscott3]

Dearest Brooks (and Cervius and Miss and all caregivers)

To me, what you do every day and night is truly amazing. I have the utmost respect and admiration and love for you. I agree with Barry; and have to remind myself (you just did) what it is like for the other people in my life who also deal with this insidious disease. You didn't ask for this anymore than we did.

I don't know how you manage to maintain any sanity throughout the years. Just know that you are much admired and revered by all of us. God has a special place for all of you

 

[Mick n Ang]

Dear Brooksea,
You are completely right, they wouldn't last a day in our real world, instead of that they all seem to live in their own little bubbles without a clue of what we do (as lovingly and uncomplaining as we can for our loved ones) I wouldn't want to go to their party either, but would love to come and help you if we weren't oceans apart, as we sing from the same hymn sheet, sending you lots of love Ang xxx

 

[brooksea]

Thanks, all.

That's just it, Ang! Why would I want to go? Everyone will have on their designer clothes and the women will be perfectly manicured and coiffed, sporting their tans. What would I have to talk about? Certainly not handbags and heels! LOL It would be feeding tubes, assistive technology and the latest fall. ;-)

 

[LizT]

I hear you loud and clear CJ. People just dont get it.
I am, however, glad that at least his friends still want him around and invite him to get togethers. My PALS friends bailed on him. Every. Single. One. No phone calls. No letters. No personal emails. And certainly no invites.

I know this doesnt help at all- just wanted to add my 2 cents.

 

[joni51]

Most of Bruce'sfriends have bailed already, along with most of his family...that figures.

 

[brooksea]

I know I should be glad they invite him, but otherwise, no one calls, emails, asks about him or visits him (except his best friend and a couple of neighbors). It's like they can handle it if it's a party, but not one on one.

 

[HelenL]

They're afraid... afraid of seeing him, afraid of saying the wrong thing, afraid of being awkward... which it will be at times, but would get better if they gave it a chance. If they ask you to let them know if there is anything they can do, say YES, as a matter of fact, and give them a couple of things that need doing! See if they'll step up to the plate for their friend. Better yet, send out an email asking for help on a specific couple of days, with the larger tasks. I did that, and many people helped me, the ones I always knew I could count on were there, a few surprise people were there, and the ones I knew who'd have an excuse weren't. Fine by me, stuff got done, and we had fun doing it!

Missy, your house smells and looks like mine I think: I have camping stuff for both boys who are leaving at 2:30 a.m. this coming morning all around, and there is definitely something dead underneath my screen porch! I've been burning lots of candles around there for the time being, as hubby is off with his friends "again"...

You caregivers are always told to "take some time for yourself" by everyone, even though they don't have a clue what that entails. God bless you all for all you do. (But advocate for help!)

 

[Miss]

The few friends coming in town have now increased - 2 from Knoxville, 2 from Nashville, 2 from Atlanta and 2 from Dallas. We'll probably have 6 friends from around here over, too. It will probably end up being about 25 people for a Friday night cookout. Honestly, I am thankful they still want to come around and hang out. As for taking my husband to parties, that really doesn't happen anymore. I do take him up to the local tavern on Fridays when he friends are going to be there. I drop him off, let him hang out for a few hours and pick him back up.

Barry, my 16 year old son went to Philmont Scout Ranch in New Mexico and hiked into the mountains for 2 weeks. I had no idea anything could smell so bad (until the creature died under the house). He had to wash his hair times and use Dawn dishwashing soap to make it come clean! Sincere there were bears and mountain lions around, I'm guessing the smell kept them at bay.

 

[Atsugi]

Yep, yup, ditto to all the above.

One time we showed up to the party in the wheelchair. I was looking tired and unkempt, of course. People avoided us. So we left very early. When we got home, we deleted several people from our speed dial.

I know I should be understanding because they are awkward and don't know what to say. But I don't have time for half-way friends.

 

[Danijela]

CJ - no wise words, but I can relate to this situation and associated feelings. Thinking of you. Dani