I hate this disease!

[Jason's Dream]

Just another rant...

Today I was reminded again how this disease alienates us from other people in our lives... from doing the ordinary, mundane, and fun things in life... a simple post on a social network listed every girl friend I know and how they had a night out and what fun they had... never was even asked... didn't they know how nice it would have been to have a night out for a change and not talk about the albatross that everyone seems to think that is the only thing they can talk to me about?... I'm no longer a human being... no longer have feelings... I am only Jason's wife.. the wife with the weight of the world on my shoulders.. just a care giver... I don't have any identity of my own and of course... since I take care and love someone near death.. I certainly have no use of wanting to have fun and get away and talk about non-sensical stuff... ugh!

I know its stupid... but the other night the pastor at my parent's church started a sermon talking about me having the weight of the world on my shoulders, what all I am dealing with... and how I am soo young to be dealing with soo much... thanks pastor.. remind everyone why they don't want the "debbie downer" around.

I can't reply to anyone because if I try to be there for someone else, I get replies, like "why am I even complaining, when you are dealing with soo much more, etc?"...

Why does it all lead back to THIS?

I hate this horrible disease!

/: rant over

~ Becca

 

[joni51]

Becca unfortunately that is how most "friends" see us now. I tell wives of the couples we used to be close to to call me if they do stuff, they never do. I feel like they think the same thing...I am depressing to be around. Yep it sucks! Sorry love hope today is a little better..

 

[susanf]

I made the mistake of telling some of my daughters friends moms because of my slurred speech. I didn't want them to thing I was having an extra glass of wine at lunch. Now they avoid me like the plague.

 

[Ladyinn]

Becca, I think that we have probably all experienced a little bit if not a lot rejection by friends who don't know how to act around us. When I was a caregiver, I started a Friday night appetizer night at our house. I invited a few friends to bring a finger food and I would supply wine and soft drinks. They were invited to bring their spouses if they wished.

I set the time to be limited from five till eight. What started out as a few friends that winter turned out to be a lifesaver for me. They began to bring other people and some nights the fellows would do some "honey-dos" while the ladies caught me up on all the things that were happening outside of my little world.

Eventually, they were some of the very people that became my lifeline to the outside world and began including me for short outings, while one of them would sit at home with Ron.

I don't know if this would work for you but it is a thought.

 

[Anastasia]

Life can so easily be taken over by all of this and become appointments,explaining,searching for answers ,catching up on lost sleep,etc.
Remember to take care of you to ,cos who will care for the carer when you need it most?!
Diannes idea seems like a goer....well done....might give that a try myself...take heart all you fellow cares.Anastasia.

 

[jwife]

Becca, this isn't much help and I know it, but it is the only thing I know to tell you. From my experience, after you are no longer the care giver, everyone seems to reappear in your life and act as though nothing has happened. That is almost more infuriating than what they are doing now. My family seems to just ignore the fact that I just lost my husband and might need some time to grieve and to try to straighten out my life. Only a few people ask how I'm doing and then it is just out of courtesy not really caring. I know of no way to try to excuse your friends. If you asked, they would tell you that they didn't want to hurt your feelings because they knew you couldn't go. Poor excuse if you ask me.
I have found that you do get your life back. There is time for you after the one you love so deeply is no longer here, but there is also a big hole in your life and your heart. The relief is canceled by the hurt. two months have passed for me and I still don't know which way to turn.
I think the only logical conclusion is that you are absolutely correct - This disease and all that comes with it STINKS! You are in my thoughts and prayers. I wish that there was more that I could do to help. I know of no words to ease your burden or pain. Wish I had a magic wand or a million dollars. Then I might be able to do something. Janis

 

[Jellycat]

Becca, you're right. It sucks. I'm sorry your friends didn't invite you. Even if you hadn't been able to go, it would've been good to be included and to feel part of it.

But, you know, you are a human being and a wonderful one at that.

I think Dianne's idea is fabulous. I wish I had thought that big when I needed some company. I used to tell my friends to just stop by. Then when they didn't, when they asked what they could do for me, I used to try to spell it out - please could you drop by for a cup of tea or coffee. You don't have to stay long if you don't want to, but I'd love to see you and the company would help me a lot.

For me this was a huge request, cause I'd always been the one out there doing stuff for them. I guess my friends see me as the strong one, someone to lean on. I knew I needed their help and thought by telling them I needed them they would respond but I guess I should have made it a more attractive, party like prospect because few of them responded.

One really stood by me and visited as often as she could. Even when she just breezed in and out to say hi it was a support. Most I never saw. They are still my friends. They're good people. But I do wonder why they never came. Were they scared of what they might see or hear when they visited, preoccupied with their own affairs, too busy, or was it too much to show my vulnerability or what? I still don't know.

When my mother died they were there at the funeral and very present for a few days but since have been very much business as usual, so this continues to be something that they really don't want to hear about. They have, I think, expected me to just fall into the patterns of being with them in the way I was before als came into my life. With some it's like this last couple of years never happened. I still don't know how to deal with it. But one thing is sure, I am not the same person I was so they have a surprise coming!

Rant over and back to you Becca. Sending love and hugs to you, Jason and the kids.

 

[susanf]

Becca, Does your church help you with anything? The sermon should be about helping your neighbor. Our church has a ministry specifically for people with illness. They will come and clean, yardwork, dinner and respite care on a schedule
Rant away, we're all here for you

 

[brooksea]

Becca, I'm sorry your friends did not think to ask you, or perhaps they did, but felt you would not be able to arrange to get away on short notice.

I'm a little conflicted with your post and that may be because I've been dealing with this longer and you are much younger than I. I wouldn't even know what to talk about if someone did invite me out for a night of fun! I have the opposite problem: I can only think about what needs to be done on my "to do" list, whether that be upkeep of the house, upkeep of my kid or upkeep of my pALS. I think I'm out of touch with reality! :wink:

If you do get the chance, by all means go out with your friends and enjoy those times while you can!

Maybe you can place a comment on the social network site re: "sounds like y'all had loads of fun! Hope to be able to join you on next outing, just let me know in advance...would love to be there to let my hair down for a change and talk about (insert your interests here)!" Something like that anyway... What could it hurt? :smile:

 

[Gentleman Jim]

Yep, I think Ladyinn really thought out of the box. The others are right on also. Becca, with out
doubt we feel so lonely. I remember feeling lonely when I wasn't a caregiver.

We truly don't get the time even to think, now do we? But think we must, then act on those
thoughts. When I worked, it was hard for me to "think" it was ok for me to go golfing. In
fact, it was my pal who used to ask me the most. How weird is that? I was gone most of
the week with my work.

Now, retired, kids raised, Eddie with ALS, here I am again. Busy, busy, busy...

But this summer I golfed every Monday, fortunate to have help at the Ponderosa.

There are five levels of communication. Hi, how are you? Or, how you doing?
Beautiful weather we are having. Many statements or sediments like these or
just surface conversation is sometimes all we are capable of at the time.

Realize that this happens to everyone in one form or another. Parents with
children, friends from work or high school. Many people don't even know
their neighbors anymore. These are facts that we all deal with. "Everyone
working for the week-end."

Besides the time grouliing task of our loved ones, we must make and invent
time with timing. Grocery shopping while shopping for friends. Fellowhship
with those at Church if we can. Each one of us doesn't care how much we
know, till we know how much we care. This old world isn't handing out
commitment like it used to. We are busy with our stuff. We have
stuff we have to do, stuff we have to take care of and stuff that we always
do. Stuff, enough.

Good comments though, you made me think, now I will see if I can turn those
thoughts into actions.

 

[Polar]

Strange... I found the opposite.. Friends visit more often and always lend a helping hand.. I tend to get mad at times because no one let's me do things (that I probably should not to tiring to do) as it makes me feel totally useless. My wife gets mad at me because I never ask anyone for help.. One thing ALS is not taking away from me is my stubbornness .. Biggest downside for friends and family is that I never want to go out anywhere. Restaurants tend to embarrass me because it takes me three times as long to eat then everyone else. Walking about is just too much of a drain.. Most of my time is spent on Facebook (Thank god for Facebook or I would be real bored all day)

 

[heymom05]

You should put a post telking them how happy you are that they could get together and let that be. Feelings are hurt but you are an amazing woman who would not do that to them. Bless them and let God convict hem for leaving you out....betcha get an invitation next timeand you should go!

 

[Mrs C]

All I can think to reply is this: 1) do I miss my social life I used to have? Sometimes. But will I regret the time I should have spent with my hubby when he is gone? Hell yes! My priority is him. Now. Us. Now. There will be plenty of time for other things without him later unfortunately. Is this ok? Yes, it is what I want. It is what we enjoy. Us and our time. The kids come and go as they always have, that is what we want as well, for they need to live their lives. I have never depended on anyone for anything, I sure as heck am not going to start now. 2) will I hold it against my friends and family for what they do not do? NO. They have their own lives. Everyone deals with these things differently, it is not their fault they cannot handle our situation. That does not make them bad people, It just makes me that much stronger.

 

[Katie C]

Mrs C.... I'm really glad that works for you. Seriously. For me the isolation was agonizing.. I had a husband with advanced dementia who really didn't like me much any more and who required 24/7 supervision... not care, supervision. Luckily I found a dementia specific adult day care to give me a few hours of respite a week. I had to pay for that respite because Glen's brothers couldn't be bothered to stop by and be with ther brother for a couple of hours. Do I resent that... and the fact that Glen missed them and they still didn't come? You betcha. My son left school and moved back home to help care for his dad. I will be eternally grateful for that. Do I feel stronger for having travelled the road of caregiver for an ALS/FTD patient? Not really... perhaps it's because I damaged my hip so badly that I currently use a mobility scooter to go to the grocery store. I guess my point is... like everything else with this disease, we each travel a different road and what works for some does not always work for others.

 

[Mrs C]

I am so sorry to have been so abrupt with you, not knowing your entire situation. Now that I have a greater grasp, let me offer this: I am sorry I was not here for you sooner, and I am sending you nothing but positive vibes and prayers.