How do you plan!?

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Mattydejr

New member
Joined
Feb 15, 2012
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5
Reason
CALS
Country
US
State
Texas
City
League City
Let me first say, when she was diagnosed I was dedicated to try to make our/her last years as comfortable and apply as possible. As the two years have passed it has been harder to stay focused on that initial plan. Do any of you have the issue of trying to plan anything? Maybe I am too concerned with making everything right. She deserves that, but I need her to help me. It is so hard to be a caregiver/husband, or is it? Maybe it's me! There is no manual for this stuff. Yet I feel I am certainly not following it. I don't want to do support groups or counseling to whine about a situation that has no fix or real solution. As she says , "suck it up, buttercup" that is virtually all there is for those of us who may share my frustrations. I hate to sound selfish but the bottom line is , this disease is devastating it knocks you on your ass and doesn't offer a hand up. It does affect all of us equally in the sense, that they are helpless to help us help them and we have the biliary to help them and yet are unable. Lost!
 
Actually there are many publications you can get from your area ALSAssociation. They also have support group meetings. Please give them a call. Typically, they also have a loaner closet they can loan you any equipment you need for as long as you need it.

The advice I have for you is get the equipment before you need it. Remember to take care of yourself too. Accept help when it's offered. Ask for help when you need it.

I know that being a CALS is very difficult and you have my admiration. Remember, if she asks you to do something she most likely doesn't mean right away. Ask her if she needs it now or can it wait a bit.

http://webtx.alsa.org/site/PageServer?pagename=page_not_found
 
You have come to the right place. I was like you--thinking this woudlbe over quick and kowtowing to everything for my pals. sometimes it goes on and on and life needs to be lived everyday in a normal (as possible) way. you are in a tough situation like most cals--spouse and caregiver. while you can't fix als and all the crap that goes with it--it is good to talk or "whine" about your feelings because sometimes saying them out loud makes them easier to deal with. your feelings are real and important and can not be forgotten. Your pals has a terribly hard row to hoe, but you have to be menatlly strong to help her . To stay strong requires taking care of your self physically and mentally. dont feel guilty for having needs and feelings.

no one is perfect so first cut yourself some slack. This is not easy--not for anyone. This forum is a great place for advice and support because we are all on the same road as you. I have learned so much here, and I know when I feel really terrible I can come here and say how i feel and know that I am accepted and understood. I hope you will join us and let us help you.
 
Nothing wrong with support groups... not only can you vent (my preferred verb) you can also learn tips and techniques from those a little ahead of you on the road. ALSA is a wonderful resource. UCSF is another wonderful resource with a lot of published information. You can't make it perfect. It just isn't in the cards. My son and I eventually went with our own support phrase... it is what it is. Cut yourself some slack, make sure you have help ... accept what people offer and if they don't offer, ask. And remember we're here to help too.
 
Matty - I know exactly how you feel. It's as if you read my mind. I feel just as lost for my father and myself. Just when we seem to figure out a sort of solution to a problem, another one pops up and on and on, whether it be health related, caregiver issues, equipment, you name it. It's so overwhelming! I'm looking for that magical manual that helps me stay on top of the issues so I can be proactive and not reactive.

I do have to say that going to a grief counselor for the duration of my father's disease has helped me tremendously. She's very knowledgeable and loving. She's helped me to see the "gifts" that come from this awful disease. At first I was reluctant to believe there could be any "gifts" and I rolled my eyes but now that my father has had this for over 15 months, I do see the "gifts". For example, the quality time, laughs, etc. Don't get me wrong, I'd give every gift back to have my dad healthy again.

This forum is new to me so I'm hoping to find some useful advice.

You're not alone.

Karen
 
Matty, I hear you. You can plan for the physical stuff, wheelchairs/feeding tubes/etc. But there is no way to plan for the emotional/mental stuff that ALS brings. Like they say in AA, I try to take it one day at a time.... just grit and bear it.....But I know it is easier said than done.
We have a care giver support group that meets monthly that I sometimes attend. We set aside some time just to vent. Knowing there are others in the same boat, it may be leaky and barely staying afloat, makes it a wee bit easier.
 
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