Caregivers and abuse

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sufernan

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This is a difficult subject to talk about and one that we have already heard about in this forum. Like most people here, my husband was very loving and caring even during the terrible times of loosing control of his body and his life. I know that not everyone with ALS reacts the same way. Fear and pain could transformed anyone into an abusive person.
Emotional and verbal abuse could be a part of your reality when taking care of a loved one, please let's talk about it. Allow people to speak about what they feel without judging them. They are the ones that need most support.
Love
 

Paty

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PALS
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Mexico
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Baja California
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Mexicali
Finally I feel like talking about this subject

Many times I felt like talking about this and it is until now that I decided doing it, I am the only caregiver for my husband who is 57 years, and was diagnosed with ALS, last year Oct. 17.

Lately he's always in a bad mood, nothing I do for him is ever right, and is always telling me that soon I am going to rest, that his time to die is coming soon, that makes me very sad, he deteriorated very rapidly, he had the first symptoms on march last year, right now his voice is barely understandble, but he can still eat although he coughs a lot.
Today he told me that he wants me to respect his wishes and to tell our daughter and son that he wouldn't go for a PEG or a respirator, nothing to prolong his life.

I don't know how to deal with this, at times I feel I am going to turn crazy, I love him very much and place myself in his shoes, but this is a lot for me. We've been married 35 yrs.

He was always a very healthy person, never been sick, and comes from a family that have died very old.

Thanks sufernan, for bringing the subject up.

I WOULD APPRECIATE IF ANYONE CAN ADVISE ME ON THE BEST WAY I CAN HELP HIM, HE CANNOT WALK, MOST OF THE TIME HE WATCHES T.V. AND ONLY SEES TWO OF HIS CHILDHOOD FRIENDS, HIS MOTHER, HIS BROTHER AND OUR KIDS (34 AND 31).

PATY FROM BAJA CALIFORNIA, MEXICO
 

TBear

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My suggestion would be to get some help on a regular basis. Respite care... community organizations and even church if you do it. The brief time (even if it's only food shopping) will give you a break and try to normalize your life... and it might give your husband an appreciation for your "job" in this journey.

Cheers

T.
 

Paty

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PALS
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Thank you T-Bear

Thanks T-Bear, I do go out for food shopping, once a week and he stays by himself, watching T.V. thank God I have a Supermarket only 3 minutes away, but I hurry most of the time, since he get's extremely anxious.

When it takes me more time is when I have to do some shopping across the border to California, since most of the time it takes me about an hour to cross the border, I go to Waltmart to buy my dog's food, etc.

But I never do these chores without feeling nervous, although I let my mother in-law know I will be out of the house and I let her know when I am back.

God bless you and these wonderful forums I had the pleasure to come across since here in Mexico we don't have anything where we can go and vent and know that people understand what we're going through.


Sincererly Paty
 

NED

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old bridge
Paty,
My mom is the primary caregive of my dad with ALS for 11 years. They now live
with my and my husband and kids. My mom gets frustrated a lot and so does my dad.
It seems neither can know how the other one feels. This is tough. The only thing I
can say is the patient with ALS (at least wsith may dad) sees only his hardship and
what else could we expect. No one ever told me or my mom that we have a horrible
disease. I try to just talk to my dad and say we are doing the best we can and I
cannot imagine what it would be like to be in your shoes I tell him. I think just
knowing that I admit I do not understand gets him thinking and he calms down. Just
be there for your husband and agree a lot. Good Luck and God Bless.
 

pamwagg

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Going out on a limb...

Dear Paty,

I am taking a risk in suggesting what I am going to suggest, so I hope you will think about it before you take my advice as I could well be wrong!

I am disabled, not with ALS but with another illness, and I have a homemaker come by twice a month. She and I have become friends and we talk all the time, both in person and by phone and she is always telling me it's important for me to plan my own funeral and prepay for my burial plot and casket. She has already done so herself, and she does not even suffer from an illness! She has a good point, though, as none of us knows when we may die, ill or well!

My idea then is that since your husband seems to focus on the outcome of ALS exclusively, that is, on his eventual death, perhaps you should gently ask him if he would be interested in making some of these plans. Maybe he would like to know or decide for himself what his funeral will be like or where he will be buried? Maybe he would like to choose some music or a singer or a poem to be read? Maybe...well, you see what I mean. And there are practical decisions too. Has he made out a will? Has he a "living will" for emergencies and end of life care? I don't know what happens in Mexico of course, but these are important in the US.

The thing is, it is possible he is serious about dying, and thinking only about wanting to die without a PEG, etc. OR he is stuck in pessimism and hopelessness and needs someone to shake him out of it and get him back interested in life. Maybe the shock value of planning his death would do it...He needs to do more than watch TV! And he needs to (want to) get out with friends and be taken places and do things...Now what I worry about is that he could only get more angry and upset with YOU for bringing the matter up at all...and not change and not do anything different.

But this was the idea that ran through my mind when I read your post, and I just thought I'd share what my intuition told me was needed. Take it all with a grain or several of salt and your own common sense! 8D

Best wishes and good luck,

Pam W
 

CNA

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Just a note from a non-family caregiver. It is so typical for our loved ones to give family "the dickens" for everything, then have a non-family caregiver come in and be 100% wonderful to that person. I lived through it with my parents, and I see it now with my Hospice ALS patient and her family caregivers. It is heart wrenching for them to handle. Please know it's the disease and the fear that makes them lash out at you. I wish I could say more to ease the pain I know you're having, daily, 24/7. Pray for strength to stay the course.
 

JMH

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My dad is so quiet and non-complaining that I cannot imagine what you are going through. He looks so sad and helpless. The only complaint he has is that "No man should have to live this way". Sometimes I wish my dad would get mad and show some of his old spirit. The transition from being an active man to what he is today has turned our world upside down. I can only imagine what it's done to his. It's difficult to put things in perspective. Maybe all we can do is to show how much we love him. Dad does not talk about dying - for whatever reason, be it fear or something else. Maybe he is protecting us. All we can do is be there for him and care for him.
My 2 sisters and I are caring for him and it is a big job for the three of us. I can't imagine doing it alone. I hope you can find some support to help you and the strength to carry on. Take care.
JMH
 

TBear

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I found that there was a time when I could talk to my wife about her final wishes. Keep in mind that emotions for ALS patients are usually very close to the surface so that even the slightest upset can be a trauma! I mostly reasurred her that whatever she hoped for would be honoured. The biggest job that a spouses as CALS can have is trying to remember that, for the most part we are spouses and not nurses... or doctors... or therapists!
 

jhviv

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you're right, Tbear. about remembering to be understanding of PALS emotions. mi partner is in awful denial. He was never exactly mr level-headed to begin with, but now its just a roller coaster between the most heart-rending, desperate sadness and intense anger. He seems to have decided that he's going to let me and all of his many and supportive friends know exactly how we're screwed up. granted, everyone has issues, but I get sick of hearing about my flaws as I spend all my time caring for him. I'm able to work from home, but sometimes, I'll be on a conference call and he'll just start screaming at me over some imagined slight. He's convinced I'm having an affair even though I am rarely away from him for more than an hour. most of the time, he's not the person i fell in love with, and it breaks my heart.
 

liz

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jhviv -

I give you credit for hanging in there while your partner is so difficult to care for. He's obviously feeling miserable about his situation but it must be draining for you to cope with his behavior. Can you or he access some ALS Support group?

Liz
 

jhviv

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thanks, Liz.

i've tried a support group, but maybe because his symptoms are advancing slowly it freaked me out more than anything. maybe its not the healthiest thing, but beyond planning for medical needs and healthcare proxies and the like, I don't want to think about and i don't want him to think about where he's heading. and those groups had people in a lot worse shape than he was in. it depressed the hell out of me and him.
 

jhviv

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don't know how much more I can take

I come here and I read about how caregivers get such emotional support from their husbands and wives suffereing from ALS and it makes me cry. my partner has turned into a nightmare. He's always been a difficult person, someone who lived outside of behavioral norms. that's part of why i feel for him. but now, he's unbearable. I've arranged to work from home, i take care of everything for him from all the physical care to all the medical bills to the disability to all the other bills. all i usually get is abuse. i'm like his personal whipping boy. everything i do brings criticism. he does nothing to help out. I try to plan meals that he'll like to keep his wait on and he refuses absolutely to do it, then he throws fits when there's nothing he wants to eat in the house. His tea is always too hot or too cold. despite the fact that I take care of him 24/7 he's convinced I'm having an affair. he's still very mobile, but on his good days, I'm usually working and he goes off with friends which does give me some respite, but i never get to leave. then he usually overdoes it and is sick for a week which means more work for me to the point where he is terrified and crying when i want to run down the street to the grocery store.

and yet he refuses any help. he won't see a therapist, go to a support group, ask friends for help. I've had friends come in, but he's such a bastard when they do, that its not worth it.

i love him, but i can't stand him anymore.

i tell him the way i feel. twice our arguments have gotten so heated that he attacks me physically, kicking me and trying to bite me (his arms are pretty much shot), but most of the time he desolves into a pathetic puddle, sobbing and apologizing and i end up comforting him.

just now, when i said i felt taken for granted and that i wish he'd save some of his good days for me. his response was to say, fine...i'll leave. i'll move back to my sister's. i'm tempting to tell him not to let the door hit his ass on the way out.

sorry to vent
 

ltr

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Nobody deserves to be abused, for any reason whatsoever. I understand your partner is scared to death and is hurting, but you do not ever deserve to be abused. In my opinion you need to seek whatever help you can and support for yourself. Your partner needs to think about you too and get help and support from others as well. Abuse just should not be tolerated. You are an important person, so please do something for yourself and take action to be safe.
 

Poco

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PALS
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Bend
My husband has ALS and it's progressing very rapidly. We are in the process of getting our affairs in order since we have a large mixed family. We picked out our buriel spot and had our monument engraved with a heart and the date we were married. It has both our names and dates of birth and when one of us goes they will engrave that date.
We did this together and made sure we will both be cremated and our ashes will be right next to each other. We tried to keep it light and humorous and decided to bring chairs and go there and have a picnic. It is not so scary since we planned it jointly as opposed to just planning his passing. Our will is in order and that takes so much stress away. He just feels so guilty all the time because of what this is doing to me and how he always wanted to take care of me. He is so wonderful but I wish he would get fired up a little and not be so passive and weak. He says this is no way for anyone to live. It is very hard to be a caregiver, I never realized before, and I do get tired and sore and we're not anywhere near some of the other physical challenges other caregivers face. I think you need to be strong and set limits and not tolerate the abuse and therapy is probably the only way to be strong enough to do it. I know as things progress I will need all your input but meanwhile my thoughts are with you.
Phyl
 
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