Caregivers only... You and your PALS

[brooksea]

Praying,

Take the advice from the other CALS here: be straightforward with your PALS! Even though you may understand why they are insulting and hurtful, that doesn't give them the right to take advantage of your good nature. Stand firm in a nice or joking way and tell it like it is. Who would take care of your PALS if you weren't there for her? Sometimes we have to remind our PALS that we are people too with feelings and needs. We don't stop existing because of ALS!

Good Luck!

 

[hopingforthebest]

My husband is 57 and is losing the use of his arms, has neck weakness and writing is so very difficult for him. We will be going to 3rd neuro to concur on a diagnosis of PMA. As I read all your posts, I weep. My heart goes out to all of you. Some are so darn young!
I will pray for you all tonight.
My husbands illness is very very difficult on him. He, as most of you can relate, was athletic, a huge help around the house and my best friend. Well, he is still my best friend. He no longer exercises, oh, he is still working. When he comes home he watches a lot of tv. Never wants to talk about his illness. I want to talk but instead go online and read and read and read. I never cry in front of him. I lie awake and watch him sleep and look at his shoulders that have wasted away and cry. My sons are grown and married and I never burden them so I read and read and read. This disease is just aweful and I want to know why there is no help out there.
I think of all you caregivers as angels! Your work is endless and some days you get very little appreciation but know that you are not alone and tonight a sleepless woman will be praying for each one of you!

 

[brooksea]

Hoping-

Thanks for your prayers! My husband is younger than yours and he is no longer working, but they sound similar. He has become very frustrated that he can only do a limited number of things around the house.

It is sad to watch a previously robust individual literally waste away.

Please hang in there. Thank goodness we have this forum to communicate with each other and support each other. My husband sees me on the computer and always asks, "Have you cured me yet?" He doesn't realize I'm mostly garnering information for what may be waiting for us in the near future and seeking support from people like you.

Hang in there!

 

[Lou]

Oh Thank you! I am new to this forum and I started out complaining and then felt really guilty. I thought everyone would hate me. My children do not want to hear my fatigue and depression and have threatened not to talk to me if I can't be more positive. It is four years now and although things are going ok I have health issues of my own [arthritis and two sets of stairs to do whenever I go to my husband's room-carrying trays and answering bells} I get lots of anger from him as well because I won't just keep quiet and carry on. He won't leave the house and I get out to grocery shop twice a week. We live in the deep country and I am so isolated. Good neighbours help but there isn't much they can do in personal care or emotional support. Thank you for letting me know that I am not alone. Question? I don't seem to be on a thread. How do I appear in this forum?Lou

 

[brooksea]

Lou,

the "thread" is the start of a topic of conversation into which you have responded with a "post" or answer. You are appearing here in this thread with your response. Perhaps I don't understand your question. Maybe CindyM can help?

It must be terribly hard for you handling yourPALS all by yourself. You have to take some time for yourself. Could not one of your children give you a weekend off? Have you contacted the ALS Assoc? They might be able to offer some suggestions.

 

[Lou]

Hello jimercat,
Thank you for answering. I did see where I got on the thread after I asked the question. I maybe meant how do I start a thread?
I do have Community Access help otherwise I could never handle my husband. He is 6'1" and 215 lbs and totally unable to move. My children give what they can and in August I did get 6 days in three spurts to be away. Didn't mean to complain. That was the first time I had away in the four years and I will not get it again for quite some time. The grown kids do not want to do any personal care for their father so I must always have nurses to cover my end of the duties.

It sure does help to know that other people get anger vented at them and how they deal with it. My husband thinks that it is just me, that I am so flawed that I drive him crazy. Could be but I keep coming back. That should be worth something.

My kids think that this isn't so hard because my husband is always so gentle , quiet and cheerful with them. So it must be me? He's the same with the nurses. So it must be me.
I am hallucinating doorbells in my sleep because that is how he calls me and I sleep with a monitor on at all times. I think lack of good sleep is killing me.

I had to go away in August because he wouldn't consider going to a respite bed so I could get a good night's sleep in my own house.That was what I craved. Oh well enough complaining. It's good to read all this stuff. Thank you. Hope I didn't make you say I'm annoying. Lou

 

[brooksea]

Lou,

This is the place to be to vent. Don't worry, us CALS won't call you annoying!

My husband is the same exact way with "others." Always positive and nice. He just lets it all hang out with me, which can be mentally exhausting sometimes!

Anyway to start a new thread go to the page that lists all the threads. Near the top left hand side there is a green tab that says "New Threads." Click on that tab and you will be able to start your own thread.

Ain't technology great?

 

[lak48837]

hello,
just chiming in with my .02 cents worth. I think our pals take things out on the people they love the most and feel free enough to do so. It sucks for us but that's the way it is. My Mom went thru her bitter ugly stage too...sweet as pie to others and had a nasty tongue with Dad and my sister and me. We "just didn't understand" well hell, we are going thru it too, aren't we?. We don't feel the pain and don't struggle to wipe our own butts but we are right there helping her facing the same emotions of anger because we hate to see them in that condition...knowing it's never going to get better, just worse. I for one became really hurt but always tried to let her vent with me and I in turn vent to others. Everyone just needs to let it all out and take as many breaks as possible. Smile, make the best of your time with each other and live with no regrets. Thanks for listening.
LAURA

 

[Cdngirl62]

New and already venting!

WOW... I really needed some kind of support... ANYTHING before I just completely lose it. Well, I came searching the internet to find a group of some sort! All I can say is Thank you too all of you! This is a great site, and a great Thread...

You mean there are REALLY other people in this world going through what I'm going through?

I love my husband dearly... I would do anything for him (and believe me, I ALREADY DO) but sometimes... oh man (Lord give me strength) because I would love to just walk away from all of this!

Stubborness? HUH... that's an understatement! And how in the world can you "snap" them out of their self-loathing, depression? Wayne is now becoming a hermit, he won't go outside and he gets very upset when he has company drop by. It's so tough sometimes.

And every day listening to him beg me to just "let him lay in his bed so that he can die..." That makes me feel soooo good because I thought he would at least have our marriage to look forward to in life... I thought I could be the one who he MAY actually want to live for! Silly me!

OK, now I'm rambling... once again, thank you everyone. I won't be a stranger. I've posted our "story" in the new section under say hi. Send me a reply... would love to hear from you all!

L.A.

 

[brooksea]

Hey Cdn,

Welcome and sorry you had to look us up. Feel free to vent anytime!

 

[landscape]

Lou:

Even if your husband were gentle and quiet all the time, you'd still need that vital sleep! Being a caregiver 24 hrs a day is an exhausting job, even in the best of circumstances--
sleep deprivation adds to the burden and makes you glassy eyed and craving a den in which to curl up and sleep on the sunniest of afternoons!
You have a lot to cope with. Hang in there!

 

[beaner1]

Everyone - I can totally relate to what every caregiver has said here! I have gone through all of these things too - hubby is sweet as pie to everyone else but takes his anger out on me. He never complained to anyone, lied to all about how he was doing - I'm sure people thought I was nuts when I'd tell them how bad he was getting. I was starting to think I was just making things out to be much harder than they were, but this forum has helped so much - now I know it's not "just me" so thanks to everyone!

My husband had a really tough time accepting this disease and the loss of his freedom, pride, etc. He too was a very active man - has never relied on anyone! Fortunately, he has gotten better - he will talk about his disease now, and is more accepting of help. His attitude towards me has been better too - he hasn't been so angry, and I think he now realizes that this disease affects the entire family - he too has said to me many times that I have no reason to complain, and there is no way I can understand what he's going through, that I hate him, want him to die so I can get on with my life etc, etc, - all of it totally NOT TRUE!

I've gone through the bad stuff with him for three years - the hardest thing I've ever had to do! Many times I thought about running away, many times I cried driving home from work (only time I was alone), and I still feel like I can never get enough sleep!

I think that my husband doesn't have a lot of time left - he's gone downhill so much over this summer! It's like he's disappearing before my eyes, and I think he knows there isn't a lot of time left too - maybe that's why the change of heart and attitude. No matter how much time we have left together, I want it to be without the anger and bad feelings, and I want him to know how grateful we are that we still have him in our lives for as long as possible.

Hang in there all of you wonderful caregivers! Maybe your PALS doesn't show how much he/she appreciates what you do, but deep down they know how lucky they are to have you. I know how hard this is, and I appreciate you!
Beaner

 

[Al]

Hi Beaner. My wife and I have been married for 37 years and whenever I was being a real jerk (only once or twice I'm sure) Lee would write me a letter similar to your post. That shows your true feelings in a non confrontational way and I was wondering if you had thought of printing your post and leaving it for him to read as you go out to work if he'd give it serious thought. I know I did.
AL.

 

[Lou]

Oh Beaner,
You have just said it all for me- all my unspeakables. It really does help to hear others. It helps too, Al, that you can speak for my husband, things he won't say he understands but must. That has been my big worry - that all I'll be left with are the bitter words and frustrations when in reality we have had 39 good years. Why does this Monster have to rip away at everything. I don't think other illnesses do as much damage to relationships.
Hang in Beaner.

 

[beaner1]

Thanks Al and Lou - I appreciate the positive feedback and kind words - Lord knows we all need it sometimes. Your suggestion is a good one Al, and I think I just might have to try it. I think that you, of all people, can appreciate what my husband is going through, and it's great to get your side of it - I'm not in your or my husband's shoes, and no matter how much I try to understand what you're going through, I never truly will. Your comments give the other side of the story, and gives me another perspective to consider. Thank you for doing it.

Lou, it's so good to have this forum where you can speak of the unspeakables, and you aren't judged - I know that many times I keep everything in because I don't want people to think I'm a monster because of the feelings I have sometimes. Unless you are in this position, I don't think anyone can truly appreciate the tiredness, unhappiness, frustration, anger, etc. but the people on this forum do - it's a safe haven for me - especially as sometimes I don't feel I have one where I can truly expess what I feel, and know I'm not crazy or a monster!

So thanks to all!
Beaner