Caregivers only... You and your PALS

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Citlalli

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I am beginning this thread because I feel that caregivers need a place to talk freely and unapologetically about the complicated dance of relationship issues with our PALS.

I am inviting you to give voice to the unspeakable...


PALS, come in at your own risk. :twisted:
 

Citlalli

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I am copying here a post from another thread that I just wrote because I think it would be useful to begin a fresh discussion on this...

How do you deal with anger, guilt etc

What about the "unspeakables"

Anger

Sometimes it is easier to try and do whatever necessary so our Pals won't be angry, like they are dealing with so much already (That is guilt speaking) or out of self defense, because you really don't need any more stress or problems than you already have without them being angry with you.

Andres used to be really angry a couple of years ago, would take it out on me, like nothing I would do was ever good enough. We had huge fights, because I had to push things that I knew he needed, like the cane, then the walker, then the wheelchair when he was falling and breaking his head. It angered and bewildered him to realize he was getting worse. At the same time I was in so much pain because, to support his denial, he was using me as a cane and I was a part of that little game.

Then when he couldn't use his hands he was angry because I, of course could never do things exactly like he wanted them. Anyway, we had a therapy session and he told me an amazing thing. He said “I am like a boy that needs limits to be set I will get away with as much as I can" Wow! so I realized I wasn't helping anybody by letting him pour hiis anger on me. Of course they feel bad too when that happens it makes them feel wretched to treat bad the person on which they depend on and love. They are dealing with strong emotions but they have personal spiritual and emotional work to do in dealing with this disease ( you may or may not believe or that growth is one reason that we are going through this, it doesn't matter) and part of our work is to help them do it right ( hurting others is not the way) to learn the lessons they are being taught in surrender, tolerance, patience, compassion and right action.

Andres and I are partners in this way he won’t let me get away with neurotic behavior and neither will I. Which means we will let the other vent frustrations and try not to take it personally or get hooked in the story line but also to try to look at what is underneath the pain and frustration under the anger. By the way anger is almost always a reaction to fear.

I also want to say that nothing is permanent and emotions also happen in stages. The Angry phase ended and he went into a much more loving and tolerant phase which happened partly due to the magic of acceptance, but also because I began to set boundaries and would very fiirmly not let him take it out on me. Everybody has to make their own judgement on what is healthy venting and when it becomes destructive unfair or hurtful, and therefore is in no ones benefit to tolerate it.

Weakness


Although I know they can often lose parspective trapped in the huge demand of their failing bodies and will do and say many things in their very real quest to get their needs met. It is obvious to everyone ( except probably ourselves) how incredibly strong we are

Of course he knows that perfectly, though he might not let on as a way of keeping you doing what he needs you to do, his life depends on it. I really am speaking of myself here in this last bit, I do not know your relationship. I do know that Andres can manipulate me with that, although he has sometimes told me I am the strongest woman he knows. I know I have a big fear that he will think I am weak, maybe it is in the face of such endurance that we feel we have to be at least as brave as they have to to live through this.

And somethiing ellse I want to say is that they will manipulate. Be it with anger , guilt trips, ( Every tiime I would tell him something like I am tired, Something hurts or I need space or whatever he would respond with, soomething like “I am worse off than you”, “I never rest, I never gett time off from this disease”, “mine hurts worse” etc. My answer, and I truly believe this, is for example : yes , you are always worse off, we know that, but yours hurting more doesn’t make mine hurt less and this (fill in the blank) is what I need to get better.
 

CindyM

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Go for it, Citlalli! And since I am neither a PAL nor a CAL, I'll keep a respectful distance. I am a firm believer in the theory that CALS have a right to vent (the reason you started this thread, right?) If anybody tries to tell you differently you guys remember: you are the angels of this world and if anybody doubts it they should try to walk a day in your shoes! Cindy
 

duplinwino

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You hit on some really good points! My husband is still in the anger stage and I have had a lot of temper tantrums and blow outs directed towards me, but I'm learning how to nip those in the bud. I also get guilt trips here and there, the "I'll trade places with you" if I complain about being sick with a cold, being tired, or whatever. I think I will use your example when this comes up again.

My husband still functions well, he can walk (with a leg brace) and still has use of his left arm, but boy he is STUBBORN (anyone relate? hehe). He has never been one to ask anyone for help, ever. He's always been a very capable man. So when he first started losing use of his right arm I would offer help all the time, for any little task because I didn't want him to get frustrated and blow up. I would get a very irritable (sometimes irate) response, so now I wait for him to ask me. He finally came around. We now have a few daily things that are incorporated into our schedule that I help him with. It might sound horrible that I don't offer, but it just works for us for now.

I told him from the beginning, when he was hiding physical issues from me or taking things out on me, that I am the last person he needs to shut out or alienate. I am here day in and day out for the long haul. How can I help him if I can't stand being around him!

Anyway, I truly hope for his sake that he will come to acceptance and just start living again. I told him that I don't want our daughter to remember him as this angry, mad at the world person who is full of hate. I realize now that acceptance has to happen in his own time.

Ashley
 

Citlalli

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Hi Ashley

Stubborn, mine too. Big time.

Acceptance will come, I am glad you know it. Your husband is probably on one of the most difficult phases emotionally. Losing his physical abilities of walking and using his arms. Losing the Personna which he has identified with all his life: The capable man. It is huge. You are wise to step back a little and let the hurricane rip keeping in mind always it is not personal, repeat it to yourself like a mantra: "It is not personal".


It is very good that you are giving him space and letting him ask for the help that he needs, he has to start getting used to that, it is part of his path now to learn how to ask for help. And you need to let him learn by himself how to do it. If he skips this because you offer all the time, when it is time for him to let others help it will be harder. Also it is very annoying for them because they are the ones that know what they need. That is one of the most difficult aspects for Andres of having his father take care of him, that he can't move an inch or even glance in his direction because he will be al over him showering with quiestions about what he needs.

Isolating

Last night I realized when he is uncomfortable or in pain ( physical or emotional) he goes into a cocoon and there is no going in. I can tell him something and get no response whatsoever, even questions will get answered with him asking for something else that he needs. I used to get really pissed at this. I have kind of relaxed now, though it still hurts. The lack of communication. But the worst is the frustration of not being able to make him comfortable and get him out of the cocoon.
 

brooksea

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Citalli,

Thank you for starting this thread.

Usually it is the woman that is the caretaker of a PALS it seems. My husband is still in the anger stage and says very hurtful things out of the blue. I know it is his frustration with a situation that he is unable to control and the unknown is scary for him. Men that have been healthy all their lives and especially outgoing are now just "shut down." I cannot relate to that, but I do try to understand. Men have always handled emotional needs differently than women. Women are not afraid to ask for help most of the time. It is a matter of pride for a man. I really think this is true.

So, I would say these men that we take care of are lucky to have us. I have always joked with my husband when he starts "joking" around about me in front of others: "Just wait til you are in the wheelchair. I will take the battery off and sit you out in the rain all day if you don't watch it!" Of course I would not do that, but it is a hint.

And Ashley - We have a seven year old son. I also do not want my son to think of his daddy as always mad at the world. Unfortunately he will tell my son that they will do something say when he gets home from school only to be too tired to do it when son gets home. This breaks my son's heart as he doesn't understand what is going on. But what ends up happening is my husband gets angry and takes it out on poor son. I know he feels bad afterwards, but it is too late for a seven year old.

I too, hope that my husband will move on to the next phase of acceptance. He now goes to church, but I just don't see the benefit for him. It seems he's going out of some kind of obligation. I don't know -that is a whole other topic.

I now just let him figure things out for himself. I no longer go running everytime he has a coughing/choking/saliva spell. I do the things I think are necessary to keep him unharmed, but I no longer baby him. And I think that is "a good thing."
 

duplinwino

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CJ, my daughter is seven also (eight next month). Have you talked with your son about what was going on with his dad? We are preparing to do this soon, just wondering if you had any advice. She hasn't really said anything about his arm and he broke his leg in February so she thinks the brace is due to that, we haven't said otherwise.

Thanks!
 

raggedymary

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Thank you for allowing me to vent. I just tell my husband I am a selfish mean person. It is my mother that has limb onset ALS. I am just exhausted. I am working full time and she and my father are trying to ignore things. This means she is injuring herself all the time. At this point I have bought 20 days since she fell and broke her ankle in 2 places and medicare will cover 20 days in transition care. They live in a 3 story condo with unaccessible bathrooms which is how she fell trying to balance in a 1/2 bath on the main floor. She will not accept that she can't go back to the way she was. She won't get rid of the millions of throw rugs which I myself trip on. Now that she will totally be in a wheelchair, she won't be able to stop me from getting rid of them.

Since being in the hospital (this is day 7) she has decided she cannot do anything for herself. She has only moved to the wheelchair 4 times. Yet she wants to come home. I am trying not to spend too much time there because she can talk me into doing things for her that they want her to do for herself. Meanness alert. She still has use of her arms, but refuses to dress herself, etc.

I am at a total loss as to what I am doing as of August 20. If I quit my job to take care of her, I cannot afford the extras I am providing for them at this time (co-pays on equipment, etc). I have been paying for a cleaning lady because I cannot clean to suit them. I won't be able to afford this. A care facility starts at $150-$300 a day. I cannot afford this even if I do work. And I still have my dad to consider.

Even though it has been 1 year since diagnosis, my mom was still a traditional wife and never showed my dad how to do anything (not that he wants to learn). He cannot run a washer/dryer, cook, operate dishwasher, etc. He thinks I can just do these things. I took quilting to do during surgery and now he wants to bring me mending.

I work out of town so with travel and lunch, this is a 10 hour day. I have a husband and 5 grown children, 2 still at home. And I am expecting my first grandchild who will live out of state. I see my husband less that an hour a day, by the time I get home, make dinner, go over there, come home after bedtime and get up and go to work.

I can't say a word because she is angry/denial/defeatest. She just says I don't want to be this way and cries. What do I say? She is horribly depressed all the time and this makes me depressed. Her doctors keep suggesting anti depressents, but she refuses because she has a right to be depressed.

And I am leaving out the attitude at work, which is kindly allowing me the time to go to all the appointments, hospitals, etc, but I just don't get paid for the hours I am gone and am imposing on my co-workers who are constantly covering for me. My son is getting his wisdom teeth out this Friday and now I need ANOTHER day off. Aren't you glad you don't work with me!

And there is no solution but plowing through. This is the crappiest disease ever.
 

brooksea

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Ashley,

My son just turned seven in July, so being he is a boy and younger than your daughter, he is not as mature.

We have told him that his dad has an illness/disease that makes him very tired. He has already witnessed two broken feet , a broken leg, and a very unpleasant "not being able to swallow saliva" episode. He took this all in stride. I've taken him aside on many occasions (because he just doesn't understand why daddy said he would do something with him but now cannot due to exhaustion) and explained again that daddy has ALS, a disease that no one can catch like a cold, but that some people get and we don't know why. He just says "oh." So you can't really tell what it is they are absorbing. We even took him to the last appointment at the ALS clinic. He watched with interest, but was more intrigued with my SIL giving blood! (That's a boy for ya!)

Anyway I would advise against any mention of major issues or death. If you think about it, it is hard for an adult to grasp the meaning of this disease, so think what a child must understand or not. Most likely she will start asking questions as she gets older.

I fortunate this year because the counselor at my son's school lost a sister to ALS :( and she completely understands our situation. So if you can speak with your daughter's counselor at school as well as the teacher and administrators involved in her education, it may be of some help. At least they would be able to observe any problems she may be having while at school.

There is something online for kids that explains the disease in scientific terms on a kids level, but it really would be over my son's head right now. It's on one of the ALS sites, can't remember which. Also there is a workbook for children thru teens for children of PALS on the Georgia ALS site, but frankly I haven't bought it because $25.00 for a child of a PALS just doesn't sit right with me. I hope I have enough intelligence to help myself and my son through whatever this disease throws at us without the help of some psychologists book! Sorry this is really a pet peeve with me...PALS are suffering enough without someone charging for a book. At the least the ALS association could ask permission to cull some of the major points out of the book and give this to PALS free. Then if we wanted to invest in the book so be it!)

Well, I wish you luck with you daughter and your husband. If you have any feedback on what I've said good or bad feel free to comment.

Mary, Mary, Mary...

Girl you are gonna burn yourself out! I bet if you were firm with your Dad and explained that you have confidence in him (just like you would do a child) and train him on the chores (those that you know he could do) then I bet he might just step up to the plate. But I am not you, so you Know your Dad better of course than I.

Your mother is still angry and may not be able to move on right now. I know my husband can't at the moment. Are there any close friends/neighbors you could enlist? And what about the ALS Assoc. have they been any help? I have the opposite problem: Do I find a job ( we are still fighting his disability ins for the proper payout) cause I need insurance? Or will I get a job and have to quit due the task of taking care of my husband?

Got to go. Good thread.
 

Lorie

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Amen Sister!

I am back! Most people on here have read the post I put on last week when I had taken Tim to he doctor and he went into a "Rage" on me and cussed and screamed at me. (i think its under general discussion-brother with als). I had a good bit of response to it. And I want to thank all my friends for caring so much.

Here is the update: The same night, I called Tim just like I always do. My Mom has to put me on speaker phone. I was very calm at that point. He was quiet at first, then he said in a low voice. Lorie I owe you a huge appology. I am so ashamed of my self. I would have never thought of all people I would have treated you like that. I am so sorry!
I asked him how it felt to be treated that way? He said it didn't feel good at all. Lately, before that he would rage about 1-2 times a week. I would be there or on the phone trying to console him and get him to stop. I am the peace maker, president of the family and all.
I told him I had had enough. I would get him help. But as much for his benefit as ours he had to stop. He was going to have a heart attack or stroke or make one of us have one. He has been a doll all week. We had our birthday party last saturday night as planned and went very well. When his sister (me) does something like she had to do, he knew it was bad. He now knows, I WILL NOT PUT UP WITH IT. AND I LOVE HIM TOO MUCH TO SEE HIM LIKE THAT AND HOW HE MAKES US FEEL! I told him we have the side affects of the disease that he don't have and then some. And how lucky he is to have us.
He told me that he needed mental help. I think a lot of it comes from the chilhoods we were raised in. And it is not fair what he has to live and die through now. But I encourage him to concentrate on "Living not Dying". We had a good report from his ALS doctor today. I will post about that under another topic.

I am with you citalli! Sometimeswe have to let them have it, to appreciate us. Anybody with this Disease is very fortunate to have loving Caregivers instead of sticking them in a nursing home. Which is going to happen to one of my PALS because his family either want or can't take care of him and he is just now loosing the use of his hands and arms, everything else works. And I told Tim that story today. We will not be abused.

Especially with all the Love we have in our hearts for them.

I now work part time for a friend of mine. Take care of my family. Help with Tim's cargiving and deal with my own disabilities.

SOMETIMES, WE JUST HAVE TO DO WHAT WE HAVE TO DO! IT WORKED FOR ME! AND I AM IN NO WAY A CRUEL PERSON.

CAREGIVERS VENT CLUB-MEMBER,:mrgreen:

Lorie
 

Lorie

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One Flaw In A Women

ONE OF THE MALE PALS THAT LIVE IN THE SAME COUNTY I LIVE IN, SENT THIS TO ME THE OTHER DAY. IT MADE ME FEEL SO GOOD, I ALMOST CRIED. HE IS A SWEETIE. I THOUGHT I WOULD SHARE IT WITH YOU BECAUSE, ITS TRUE!

One Flaw In Women:
(you will see what it is in the end)

Women have strengths that amaze men.

They bear hardships and they carry burdens, but they hold happiness, love and joy.

They smile when they want to scream. They sing when they want to cry.

They cry when they are happy and laugh when they are nervous.

They fight for what they believe in. They stand up to injustice.

They don't take "no" for an answer when they believe there is a better solution.

They go without so their family can have.

They go to the doctor with a frightened friend.

They love unconditionally.

They cry when their children excel and cheer when their friends get awards.

They are happy when they hear about a birth or a wedding.

Their hearts break when a friend dies.

They grieve at the loss of a family member, yet they are strong when they

think there is no strength left.

They know that a hug and a kiss can heal a broken heart.

Women come in all shapes, sizes and colors.

They'll drive, fly, walk, run or e-mail you to show how much they care about you.

The heart of a woman is what makes the world keep turning.

They bring joy, hope and love. They have the compassion and ideas.

They give moral support to their family and friends.

Women have vital things to say and everything to give.

HOWEVER, IF THERE IS ONE FLAW IN WOMEN,

IT IS THAT THEY FORGET THEIR WORTH.


Lorie:-D
 

Sammantha

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Sorry to intrude but i think it is way important for caregivers to vent especially about things i think about like, your partner not being their normal self, being strong or helpful, then there are the sexual problems because having an illness is not very sexy! I can't believe i am going to say this but if it were not for my kids i would run off and live aimlessly experiencing life..... I HATE to think of what a dissapointment i am to my family when i see them struggle and i cannot help and they are so frustrated and sad. It's like these men push you away so that you go away and do not have to deal with this also..It reminds of that song Hate me, hate me so you can finally so whats good for you. Anyways, NEVER feel guilty about what you say think or feel because you all are truely going through ALS too!
 

Lorie

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Samantha

Samantha, You are definitely not intruding. That is what we are here for. This sounds like a blast off. I can understand your frustration, when we all could be getting the best of the moment in life, everyting seems to stay in an up roar. When we all could concentrate on Living the best of Quality of Life as possible. And enjoying what we have left with our loved one. Instead of making it harder that it should be. I think I have calmed my Brother down, for a while atleast.

We are "Human" to. We feel, and we do (cals) have side affects of this disease.

I think PALS and CALS sometime need to sit back and re-evaluate what they really have.
And what we can make it be.

Unless someone is making you feel this way?

From what the experts say: ALS does not affect Sexual Drive. But the physical problems, may?

I have disabilities of my own that I struggle with (and being tested for a Neuromuscular disorder along with what I already have). My husband adores me Mentally and Physically after 20 years of marriage. But we are in this whole thing together, including helping my brother with ALS.

It's ok to Vent. We all know I have done it!

We are here for all of us!

Lorie:-D
 

PrayingforGrace

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Venting

I completely understand frustration with our PALS. I love my friend dearly but she drives me absolutely crazy at times. I am with her 24/7 with very little help. I KNOW what I am seeing in terms of her abilities and how she acts around home. When I report this to caring friends, they will contact her and as you'd expect ask her how she is doing. She NEVER gives a report similar to mine. She's always upbeat and thankful she's not progressing as quickly as others. People think I'm insane or overreacting.

It doesn't help if her friends want to do something she is all about it. Takes trips, goes shopping for hours at time, but gets home and I is too tired to participate in life. She complains about my cooking, and has told me she will starve to death before ALS kills her. I understand what people are saying about being here for the kids because that's about where I'm at. She doesn't appreciate what I or other do for her if things aren't done just so. Some friends have just given up trying because they feel nothing is ever good enough.

When she's confronted about this attitude we hear "this is about me, not others...."

How do you all handle this? I didn't choose this screen name by mistake. I pray God helps me show her grace everyday. I wish more than anything I could heal her body but I can't. I want to help but I'm at my wits end on how to help so she is happy, thus making the rest of us happy...
 

CindyM

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Hi Grace-I saw that your fellow CALS have been too busy to respond and didn't want to leave you hanging. (Imagine! A CAL being busy!:-D LOL) I relate to the caregiving role in terms of my Mom's terminal illness. It is not MND but she is just as helpless. I feel for the family members of her peers who have patients with cranky dispositions to deal with. It makes the job harder, to say the least. One woman I met says she looks at it like this: her Mom is ungrateful and confrontational and so is her toddler. She tells herself that both stages will pass, fortunatey for the toddler he will outgrow his stage. Her Mom is another story.

That said, I urge you to get some relief once and awhile. Next time your friend goes out shopping I beg you to take some time for yourself to do something special for yourself. If you get burnt out everybody will suffer. Cordially, Cindy
 
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