Feeling hopeless/helpless/useless
- Thread starter whimsy_1971
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checkmat2
Active member
- Joined
- May 21, 2008
- Messages
- 36
- Reason
- Loved one DX
- Diagnosis
- 05/2008
- Country
- US
- State
- CA
- City
- Royal Oaks
Hi all
And tonight was the 8th grade dance.........my son is really shy and was so excited to go tonight......in away it's kinda sad tooo that life still goes on and on, even thought this terrible disease is in our life.......I wish it had never came knock at our door.
Christina
And tonight was the 8th grade dance.........my son is really shy and was so excited to go tonight......in away it's kinda sad tooo that life still goes on and on, even thought this terrible disease is in our life.......I wish it had never came knock at our door.
Christina
ekm1979
New member
- Joined
- Oct 23, 2007
- Messages
- 4
- Reason
- Loved one DX
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- US
- State
- ca
- City
- san jose
Just breathe
I find myself waking up many times through the night scared at the thought of losing my mom; I think, how will I take care of her, financiallym if something happens to my Dad. He is the sole financial provider for my mother. All I can do is take deep breaths. God will never give us anything that we cannot handle. I tell myself that.. not because I'm religious, I don't even go to church... but I know there is a God.. and he is not testing us, he hasn't stopped loving us; we are human beings with enough strength to give to the world. Sounds cheesy but the strength helps me.
I find myself waking up many times through the night scared at the thought of losing my mom; I think, how will I take care of her, financiallym if something happens to my Dad. He is the sole financial provider for my mother. All I can do is take deep breaths. God will never give us anything that we cannot handle. I tell myself that.. not because I'm religious, I don't even go to church... but I know there is a God.. and he is not testing us, he hasn't stopped loving us; we are human beings with enough strength to give to the world. Sounds cheesy but the strength helps me.
I think the major problem is that people don't seem to know what to do; the obvious is too obvious and when dealing with our PALS they are sometimes insecure and scared. I'd love it if someone would wash the bathroom, do a load of laundry (piquets alone count for a load a day!) make a meal but it doesn't seem to register...I guess we all seem "on top of things".If they only knew how close we feel to implosion, keeping everything pent up because how selfish of us to feel sorry for ourselves... It is safe to say that when someone we love is sick ,we are all sick on some level. In my experience we waited to long to ask for help and people get comfortable with it. When we started trying to reach out she had already progressed to the point where her needs weren't blatantly obvious to anybody but my husband and myself. People would get nervous and would require our help anyway...sort of defeated the purpose,lol. And to make matters worse often our PALS don't want anyone else to help; they don't make it easy on those trying. It requires some patience on their part to allow people the chance to learn to read their expressions(what's left of them), but we must give others the opportunity....our health hangs in the balance.We won't be much use to anyone if we fall apart. I remember how much I needed a break after my daughter was born, stress and sleep deprivation, people cleaned my house, brought meals for the week, offered to help wherever they could but stayed away to allow us some privacy. Its funny how people know how to conduct themselves in certain situations while others are just too "tricky". The fact is I can't say I blame them... I "wing it" half the time!When you don't live there right along side them its hard for anyone to undertsand their needs and wants or ours. I will say this though whatever social workers,nurses,PABs, physiotherapists offer take them up on it! Sometimes we think that we wont or would never use or do certain things and when we realize that we do its too late or more complicated. There are waiting lists, some things must be custom- built, there is paper work,politics and just plain bullshit sometimes but there is a process to all these things, so get the ball rolling. If you change your mind thats fine but at least all options are available. And even when you do the paperwork there is still more paperwork...her work insurance kept sending us a form asking what skills she had that would still enable her to work. I felt like sending it back saying she could type 3 words a minute with one hand, what position is available? This after her neuro sent a letter stating she had an incurable,progressive disease that would eventually lead to her death.....Unbelievable!
sschult
New member
- Joined
- Jun 22, 2008
- Messages
- 7
- Reason
- CALS
- Diagnosis
- 06/2003
- Country
- US
- State
- IL
- City
- Saint Libory
OMG I'm with you!
Hi everyone. I know exactly how you feel about people not knowing what to do to help. I wish that I would have just told people what to do. I wish that I could go back and do things differently. It's too late now. So if you can, tell people who say "let me know if you need anygthing" exactly what you want them to do. Be specific. If your PAL doesn't like it, you're going to have to explain to them that it sucks but you can't do this alone and they need to understand that. Your PAL is suffering with this God Awful disease and so are you. I didn't realize that people can be so ignorant when it comes to knowing what to do for others who need help. Seems like it should be automatic, especially for family members. I also wish that I had forced my PAL's brother to help with him in more of a hands-on way. Hell he didn't even take time to visit more often. It was probably because he didn't know what to do. I should have trained him how to feed, bathe, transfer, etc. Honestly, I think that now he feels quilty about not helping his brother more. That is his problem to live with, but I could have made him do more hands-on work with his brother and he wouldn't have to feel guilty or helpless. I also understand about not being able to deal with making little trivial decisions. You just can't deal with anything else. You're not losing it, you're normal. It's called overload. You're just one person. When Alan went to live at the nursing home, they explained that it will take a whole staff of people, working three shifts a day to provide the level of care that he needs. We as caregivers shouldn't feel guilty about not being able to handle this alone. My best advice to everyone in this situation: solicite help and train people how to do the bathing, toileting, transfering, etc. Because it's not going to get any easier. You will need a break. I wish that I would have realized all of this several years ago.
You're all wonderful!
Shari
Hi everyone. I know exactly how you feel about people not knowing what to do to help. I wish that I would have just told people what to do. I wish that I could go back and do things differently. It's too late now. So if you can, tell people who say "let me know if you need anygthing" exactly what you want them to do. Be specific. If your PAL doesn't like it, you're going to have to explain to them that it sucks but you can't do this alone and they need to understand that. Your PAL is suffering with this God Awful disease and so are you. I didn't realize that people can be so ignorant when it comes to knowing what to do for others who need help. Seems like it should be automatic, especially for family members. I also wish that I had forced my PAL's brother to help with him in more of a hands-on way. Hell he didn't even take time to visit more often. It was probably because he didn't know what to do. I should have trained him how to feed, bathe, transfer, etc. Honestly, I think that now he feels quilty about not helping his brother more. That is his problem to live with, but I could have made him do more hands-on work with his brother and he wouldn't have to feel guilty or helpless. I also understand about not being able to deal with making little trivial decisions. You just can't deal with anything else. You're not losing it, you're normal. It's called overload. You're just one person. When Alan went to live at the nursing home, they explained that it will take a whole staff of people, working three shifts a day to provide the level of care that he needs. We as caregivers shouldn't feel guilty about not being able to handle this alone. My best advice to everyone in this situation: solicite help and train people how to do the bathing, toileting, transfering, etc. Because it's not going to get any easier. You will need a break. I wish that I would have realized all of this several years ago.
You're all wonderful!
Shari
Jeanie
New member
- Joined
- Dec 30, 2007
- Messages
- 7
- Reason
- CALS
- Diagnosis
- 01/2006
- Country
- US
- State
- Florida
- City
- Tampa
Hi..I'm so sorry you are going through all this..and I do know how you are feeling..Is your husband a Veteran by any chance...the VA has been so wonderful to us..anything..and I mean anything we have needed, they have come through with..A wheelchair that wheels over the potty, another one that connects to a removeable frame in the bathtub so he can take a shower...for months i was giving him a bath while in his wheel chair...oh..he just got a new wheelchair with everything you can think on it..he has no use of his legs and minimum use of arms/hands..he is 230lbs and transfers use to be so stressful, but they also provided us with an electric (battery) lift..i dont know what we would do without all these aids. Also a hospital bed for when he may need it...
If your husband isnt a vet...ALSA has also been very helpful...I hope things get better for you, .. I still worry so much about what 's to come..but God showed me to just take very small looks into the future..so thats how i'm getting by day to day...
Good luck to you and your husband..God Bless
If your husband isnt a vet...ALSA has also been very helpful...I hope things get better for you, .. I still worry so much about what 's to come..but God showed me to just take very small looks into the future..so thats how i'm getting by day to day...
Good luck to you and your husband..God Bless
fiddleplayer51
Distinguished member
- Joined
- Mar 24, 2008
- Messages
- 337
- Reason
- CALS
- Diagnosis
- 03/2008
- Country
- US
- State
- VA
- City
- Harrisonburg
I love y'all for your honesty. Your words speak volumes! One day this will be the past. Y'all that have kids at home and are having to downsize have such courage.
At least this ALS thing happened to my PALS and me after our kids were grown and gone, and just as my PALS was retiring. We already live in a little cottage that's paid for and I can be with my PALS all day.
(Of course ten years ago when I was working full time and mostly nights and was going through breast cancer and treatments, two of our kids were home and one was in college. That was my turn to feel utter fatigue and despair. I was the one carrying our insurance and was the main bread-winner. Also during that time my dad was dying of cancer and I was going 200 miles away to nurse him on my weekends off. Then one of our daughters was in a head-on collision and was on a vent in a hospital 200 miles away. When it rains, it pours!) Thank goodness this ALS thing didn't happen then.
You all really impress me as you juggle ALS, family responsibilities, jobs, care, and all the fatigue and discouragement that goes with it. Hang in there! Be strong! I can assure you that you'll make it and will one day look back on it all. It will just be a memory and the pain of it all will recede with time.
Jane
At least this ALS thing happened to my PALS and me after our kids were grown and gone, and just as my PALS was retiring. We already live in a little cottage that's paid for and I can be with my PALS all day.
(Of course ten years ago when I was working full time and mostly nights and was going through breast cancer and treatments, two of our kids were home and one was in college. That was my turn to feel utter fatigue and despair. I was the one carrying our insurance and was the main bread-winner. Also during that time my dad was dying of cancer and I was going 200 miles away to nurse him on my weekends off. Then one of our daughters was in a head-on collision and was on a vent in a hospital 200 miles away. When it rains, it pours!) Thank goodness this ALS thing didn't happen then.
You all really impress me as you juggle ALS, family responsibilities, jobs, care, and all the fatigue and discouragement that goes with it. Hang in there! Be strong! I can assure you that you'll make it and will one day look back on it all. It will just be a memory and the pain of it all will recede with time.
Jane
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