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Caregiver Support Thread

 
3DC
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06/24/2014 02:07 AM

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Caregiver Support Thread
Hi everyone!

Are you a caregiver for someone? Do you sometimes feel like you just need to vent openly or talk without repercussion? This thread is the place for you. It's an extension of an older thread that the original OP wishes to retire and I promised to join and restart.

A couple of quick ground rules though.

1.) This is NOT a thread for patients, unless the posts are related to caregiving. I feel for everyone, but this should be a place that caregivers feel safe to talk in! We care deeply for our loved ones but sometimes there are just things you can't say to them.

2.) This is not a thread about my problems specifically. This is for anyone who just needs to get it out, ask for help, advice or anything else. I'll be sharing my story as well, but the thread is about everyone who needs it!

With that out of the way, I'll start it off sharing my situation.

I met an incredible woman 11 years ago who turned my life around. We clicked immediately and have been together ever since.

5 years ago, she started having trouble walking, and one morning she woke up with double vision in each eye. Extensive tests and a few months later, she was diagnosed with progressive multiple sclerosis.

Nowadays, she can walk a little with canes, and uses a wheelchair for anything more than about 15 feet. She's still somewhat independent, as in I can leave for 5-6 hours from time to time and she's usually alright, but those days are probably numbered.

For us, it was a life-changer. We lost everything (no insurance) and had to start over from scratch. And we've never really regained our footing ever since, we've just learned to live differently.

I've learned how to be a caregiver, sort of. I am still trying to figure out things from time to time, and I make mistakes. It's a blurry line between lover and caregiver, and it has to be tread lightly. I handle just about everything these days, on top of my actual job, which thankfully has let me work from home most of the time.

Anyway, thanks for listening to my rant. Being a typical guy I don't really talk about things much to anyone, and in the last year, keeping it all bottled up is causing me some health problems. So, this is me, forcing myself to talk about it!

Now it's someone else's turn :)
Anonymous Coward
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06/24/2014 03:04 AM
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Re: Caregiver Support Thread
I have a family member who was seriously injured a few years ago.

The wife has total control ....of all that goes on....


She is a narcissitic personality disorder and very very very focused on just getting her needs met.

She has interrupted the family member's care several times for her own gain and can always find ways to

twist it around to make her look not so bad....

This sh*** is allowed to go on because of how messed up our world is ; the courts and so forth....

In most situations; the hands are tied and there is nothing that can be done....

Any ideas are greatly appreciated.
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06/24/2014 03:06 AM

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Re: Caregiver Support Thread
matrix
3DC (OP)

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06/24/2014 03:18 AM

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Re: Caregiver Support Thread
I have a family member who was seriously injured a few years ago.

The wife has total control ....of all that goes on....


She is a narcissitic personality disorder and very very very focused on just getting her needs met.

She has interrupted the family member's care several times for her own gain and can always find ways to

twist it around to make her look not so bad....

This sh*** is allowed to go on because of how messed up our world is ; the courts and so forth....

In most situations; the hands are tied and there is nothing that can be done....

Any ideas are greatly appreciated.
 Quoting: Anonymous Coward 19051875


Sorry to hear it AC. There really probably isn't much that can be done if you've tried it through the courts. How does your family member feel about the situation? They'd have the most sway I would think. If they are feeling mistreated, will their voice be heard?

Hang in there, that's terrible.

hf
3DC (OP)

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06/24/2014 03:22 AM

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Re: Caregiver Support Thread
matrix
 Quoting: Mister Obvious


banana2

MO, you have always been my favorite mod, haunting the late night hours and pinning the coolest stuff :)

Been a long day and I am off for the night. Will bump this tomorrow. Every hour of every day is busy for me, but I will keep it active as much as I can!
Anonymous Coward
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06/24/2014 03:24 AM
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Re: Caregiver Support Thread
IT IS A HARD job.
been doing it for 18 years .
its even harder when its a family member.
I applaud you op.
Anonymous Coward
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06/24/2014 03:37 AM
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Re: Caregiver Support Thread
ok here goes..
I take care of my sister.
I have a fulltime job at the hospital..
what does my sister have ?
Shes diabetic .
they cut off her legs
shes going blind.
now they are cutting off more tissue and fat In her legs.
im watching her die.
ITS HARD..
I only have one sister.
her husband doesn't do shit for her.
her kids are drained .
im tired of watching her suffer..
I hate this disease..
all the women in my family have it except me.
my mom is not helping her shes to selfish.
its all me I only have one sister and im watching her suffer and die,,
she always ask me why GOD is doing this to her,
I changed the subject. I don't want her to die giving up on her faith so we don't talk about GOD much.
I don't want to give her hope either then her die thinking GOD gave up on her.. LIFE IS HARD.. AND IT SUCKS!!!
Anonymous Coward
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06/24/2014 03:50 AM
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Re: Caregiver Support Thread
ok here goes..
I take care of my sister.
I have a fulltime job at the hospital..
what does my sister have ?
Shes diabetic .
they cut off her legs
shes going blind.
now they are cutting off more tissue and fat In her legs.
im watching her die.
ITS HARD..
I only have one sister.
her husband doesn't do shit for her.
her kids are drained .
im tired of watching her suffer..
I hate this disease..
all the women in my family have it except me.
my mom is not helping her shes to selfish.
its all me I only have one sister and im watching her suffer and die,,
she always ask me why GOD is doing this to her,
I changed the subject. I don't want her to die giving up on her faith so we don't talk about GOD much.
I don't want to give her hope either then her die thinking GOD gave up on her.. LIFE IS HARD.. AND IT SUCKS!!!
 Quoting: Anonymous Coward 58389873

I feel for you having to watch them cut cut cut.

this is what traditional med does.

It is too bad ; early on
she did not seek out that which would reverse her diabetes

It is water under bridge now tho...

Now it is time for you to spend quality time with your sister
So, you have good memories. It is important to try and not focus as much on the negative and things you can't change such as her hubby issues and such.

Focus on the positive and making your sis happy as she can be in the late stages of this disease process...

Spend good positive quality time with her...
Anonymous Coward
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06/24/2014 04:23 AM
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matrix
 Quoting: Mister Obvious


Keep the heart of a lion , that's my advice OP hf
Anonymous Coward
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06/24/2014 11:30 AM
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Re: Caregiver Support Thread
Always load up on garlic to combat sickness , eat a variety of fruit and I also use alive liquid vitamins daily , try to walk one to two miles a day

All effective, all very important
Anonymous Coward
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06/24/2014 11:35 AM
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Only the hard , only the strong
3DC (OP)

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06/24/2014 11:38 AM

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Re: Caregiver Support Thread
Always load up on garlic to combat sickness , eat a variety of fruit and I also use alive liquid vitamins daily , try to walk one to two miles a day

All effective, all very important
 Quoting: Anonymous Coward 18980809


The walking and the vitamins I definitely need to do. I have started eating a lot of garlic and making fruit smoothies in the blender, but only in the last week or so. I am enjoying them so far. The walking is the next big thing for me, it's just a matter of forcing in time to do it I think. That, and I should probably give up smoking lol. Thanks AC!
Anonymous Coward
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06/24/2014 11:40 AM
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Re: Caregiver Support Thread
Always load up on garlic to combat sickness , eat a variety of fruit and I also use alive liquid vitamins daily , try to walk one to two miles a day

All effective, all very important
 Quoting: Anonymous Coward 18980809


The walking and the vitamins I definitely need to do. I have started eating a lot of garlic and making fruit smoothies in the blender, but only in the last week or so. I am enjoying them so far. The walking is the next big thing for me, it's just a matter of forcing in time to do it I think. That, and I should probably give up smoking lol. Thanks AC!
 Quoting: 3DC


Start slowly and build from there on the walking , it's huge trust me

You are very welcome
Anonymous Coward
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06/24/2014 11:53 AM
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Thread: Why are we kicking our kids out?

A powerful thread about commitment and family
3DC (OP)

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06/24/2014 12:21 PM

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Start slowly and build from there on the walking , it's huge trust me

You are very welcome
 Quoting: Anonymous Coward 18980809


That's my exact plan. I am looking forward to being able to crank music while doing so - something I haven't been able to do in a long time. I'm thinking "The Mind Is A Terrible Thing To Taste" from Ministry would be good walking music (in my opinion anyway). Yeah, I'm a semi-reformed metalhead :)

Thread: Why are we kicking our kids out?

A powerful thread about commitment and family
 Quoting: Anonymous Coward 18980809


I read a lot of that thread. I agree whole-heartedly. Sadly, when my girl first got sick, we tried living with family for those exact reasons. In our case, though, said family is completely off their rockers. It made our life 10x harder than it is without them. It doesn't change the fact that society as a whole should be adopting this type of lifestyle.
FlashBuzzkill

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06/24/2014 12:22 PM
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Re: Caregiver Support Thread
ok here goes..
I take care of my sister.
I have a fulltime job at the hospital..
what does my sister have ?
Shes diabetic .
they cut off her legs
shes going blind.
now they are cutting off more tissue and fat In her legs.
im watching her die.
ITS HARD..
I only have one sister.
her husband doesn't do shit for her.
her kids are drained .
im tired of watching her suffer..
I hate this disease..
all the women in my family have it except me.
my mom is not helping her shes to selfish.
its all me I only have one sister and im watching her suffer and die,,
she always ask me why GOD is doing this to her,
I changed the subject. I don't want her to die giving up on her faith so we don't talk about GOD much.
I don't want to give her hope either then her die thinking GOD gave up on her.. LIFE IS HARD.. AND IT SUCKS!!!
 Quoting: Anonymous Coward 58389873


She's missing the point of how precious each moment we are given is. Hard times and trials come to us all and some bear more than their fair share but without it we would never appreciate anything. Happiness is a decision anyone can make at any time. We don't see beauty with our eyes but with our hearts.

OP, so sorry to hear about your wife's MS. Bravo to you for all you do out of love for her. May you treasure every moment you have together.

My wife and I have been caregivers for 3 of our parents over the last 3 years - all had terminal cancer and we were the only remaining children living close enough to care for them.

It was difficult as I am disabled to boot but for us it was our privilege to be able to return the care and love they had given us. You never think you that one day you will giving your mother a bath or wiping your father's rear but love will make us do that and anything else they need. Sadly we have no parents left in this world and we both feel like there is a big hole that cannot be filled. We will try though to keep up the traditions they established for us especially for the holidays. Everyone will be coming to our house this Christmas and we'll do our best to make everyone feel as at home and as loved as they did.

Tell you what though - our parents are a tough act to follow. How fortunate we are to have been their children.

To all caregivers: thank you! You make the world a better place. You put the human in humanity.

Last Edited by FlashBuzzkill on 06/24/2014 12:25 PM
early to bed, early to rise, makes one a day laborer
lap
Spiritual Quest for God

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06/24/2014 12:24 PM

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Re: Caregiver Support Thread
ok here goes..
I take care of my sister.
I have a fulltime job at the hospital..
what does my sister have ?
Shes diabetic .
they cut off her legs
shes going blind.
now they are cutting off more tissue and fat In her legs.
im watching her die.
ITS HARD..
I only have one sister.
her husband doesn't do shit for her.
her kids are drained .
im tired of watching her suffer..
I hate this disease..
all the women in my family have it except me.
my mom is not helping her shes to selfish.
its all me I only have one sister and im watching her suffer and die,,
she always ask me why GOD is doing this to her,
I changed the subject. I don't want her to die giving up on her faith so we don't talk about GOD much.
I don't want to give her hope either then her die thinking GOD gave up on her.. LIFE IS HARD.. AND IT SUCKS!!!
 Quoting: Anonymous Coward 58389873


My daughter is an aspergers/autistic borderline personality 375 pound 34 year old totally dependant with fibromyalgia and barely takes care of herself begrudgenly......and I love her very deeply because her capacity to love her family and God is incredible.....but sometimes I am so frustrated with small gains that come and go, that I thought my head would explode!

still, one of tge hardest guestions she asks me, and often, is, like your sister: why did God do this to me? And what am I good for?
I've put a lot of thought and time into this and my answers help her and myself. I hope it can help you too.

First of all, I believe God's greatest joy comes from knowing He is greatly loved. I always tell my daughter that I am sure He would not care if you flip burgers for a living, or collect money from people for some kind of service. He cares more about "how" you love him and even how you help people by how much you love others. He doesnt judge you if you cant do physical work because of a disability, but instead knows how much you have helped people with thier pain by being an example or assisting them to reframe thier pain and even sometimes if you have helped people spiritually to be able to love Him more.

I believe in my heart that those that suffer either mentally or physically are blessed with the possibilty of fine tuning thier soul so you can be more suited to join Jesus or God in heaven someday. Lets face it, seriously disabled people have time on thier hands, Some of this time can be used to search inside themselves to define and answer any spirtual quests they can embark on. This will give them a sence of self worth that may have been derailed when thier crisis first appeared and when they are ready, they can turn this outward and begin focussing on other's struggles. Everyone can do this in thier own time and in thier own way. My daughter's best days are when she makes a connection with one of her online friends and can see that she can make a difference in another's life.

The favorite thing I say to my daughter is this: You are a child of the universe and God wanted you to be here!

Also: I think it was the last pope who said, pain gives others the possibility of a compassionate responce. I have certainly learned that others become thier best selves sometimes when given an opportunity to be kind to someone.

Last Edited by lap on 06/24/2014 11:01 PM
lap

Forgive yourself, forgive family, forgive nieghbors, forgive your country, forgive God, then: freedom is possible!
lap
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06/24/2014 12:35 PM

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I pinned this thread. I for one, would really love to have a non-judgement place to talk about how hard it is to be a caregiver. This is the first time since she was littke,,,by some miracle...that i am on the pity pot where it concerns this part if my life and I want to get past this mood so I can be better with my adult daughter! Thank you VERY MUCH op.
lap

Forgive yourself, forgive family, forgive nieghbors, forgive your country, forgive God, then: freedom is possible!
3DC (OP)

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06/24/2014 12:37 PM

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I pinned this thread. I for one, would really love to have a non-judgement place to talk about how hard it is to be a caregiver. This is the first time since she was littke,,,by some miracle...that i am on the pity pot where it concerns this part if my life and I want to get past this mood so I can be better with my adult daughter! Thank you VERY MUCH op.
 Quoting: lap


hf

And thank you!

I have so much I'd like to say, but right now, priorities are calling. I'll be back to the thread as soon as I can!
3DC (OP)

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06/24/2014 12:38 PM

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that i am on the pity pot where it concerns this part if my life and I want to get past this mood so I can be better with my adult daughter!
 Quoting: lap


I so understand where you are right now. I'm in the same place.
3DC (OP)

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06/24/2014 02:04 PM

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She's missing the point of how precious each moment we are given is. Hard times and trials come to us all and some bear more than their fair share but without it we would never appreciate anything. Happiness is a decision anyone can make at any time. We don't see beauty with our eyes but with our hearts.

...
...

To all caregivers: thank you! You make the world a better place. You put the human in humanity.
 Quoting: FlashBuzzkill


A lot of wisdom in this post. Happiness IS a decision, and sometimes, one of the hardest ones to make. You have to find joy where you can and take it for what it's worth.

My daughter is an aspergers/autistic borderline personality 375 pound 34 year old totally dependant with fibromyalgia and barely takes care of herself begrudgenly......and I love her very deeply because her capacity to love her family and God is incredible.....but sometimes I am so frustrated with small gains that come and go, that I thought my head would explode!

...
...

Also: I think it was the last pope who said, pain gives others the possibility of a compassionate responce. I have certainly learned that others become thier best selves sometimes when given an opportunity to be kind to someone.
 Quoting: lap


The self-worth thing is a big one. My girlfriend was very well known and respected in a field she treated as a hobby when she was healthy, and it was great to see her take it back up again recently on a very limited basis. She often feels useless (which is an attitude I refuse to feed) and needs to be reminded how much she still has to offer the world. Thank you for everything you do for your daughter, and for reminding her that everyone has something to offer this world!

I am curious if we have any other male caregivers here. Do you find it difficult to maintain your "self" when doing this? I've never been a wildman, but at 34 I feel old before my time. It's like a big part of my personality has been shuttered. How do you keep your definition of self in a situation like this?
3DC (OP)

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06/24/2014 08:28 PM

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bump

For the evening crowd. I am working on a project but keeping this thread open :)
lap
Spiritual Quest for God

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06/24/2014 10:54 PM

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I am female and used to be a psychiatric nurse before I became disabled myself. I do believe my husband feels way old before his time, what with wife and daughter disabled. We make sure to give him time to himself. He doesnt go out to bars or anything like that, but he does go hunting every year and I send him off to his brothers for a weekend once in a while. He also spends a good half hour in the shower every day....dont laugh, it helps!

He admits, I am the main caregiver for our daughter and I find time for myself when she lets me. (like right now). I try to focus on my blessings. It takes a lot of trial and error but balance is key. Sometimes being a caretaker means lots of ups and downs but if you have some personal rituals it helps a lot with your own sence of self.

Last Edited by lap on 06/24/2014 10:57 PM
lap

Forgive yourself, forgive family, forgive nieghbors, forgive your country, forgive God, then: freedom is possible!
Anonymous Coward
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06/24/2014 10:58 PM
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ok here goes..
I take care of my sister.
I have a fulltime job at the hospital..
what does my sister have ?
Shes diabetic .
they cut off her legs
shes going blind.
now they are cutting off more tissue and fat In her legs.
im watching her die.
ITS HARD..
I only have one sister.
her husband doesn't do shit for her.
her kids are drained .
im tired of watching her suffer..
I hate this disease..
all the women in my family have it except me.
my mom is not helping her shes to selfish.
its all me I only have one sister and im watching her suffer and die,,
she always ask me why GOD is doing this to her,
I changed the subject. I don't want her to die giving up on her faith so we don't talk about GOD much.
I don't want to give her hope either then her die thinking GOD gave up on her.. LIFE IS HARD.. AND IT SUCKS!!!
 Quoting: Anonymous Coward 58389873


God Bless you for taking care of your sister. You are one of few that have a heart of gold
Keats

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06/24/2014 11:02 PM
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Take care of my father with Alzheimer's and mother who has multiple health problems and is disabled with spinal stenosis. In my home. 24/7. People who don't do it 24/7 and call themselves caregivers piss me off. I knew a lady who's mother was 1000 miles away and she visited her 4 times a year and said how "hard" it was to be a caregiver for her mother. Ugh.

I think depression is the hardest thing to deal with. And with dealing with someone w/advanced dementia, you start to doubt your own sanity.

Thanks for listening and bless you for taking care of your significant other.
And Scooby Doo if you come through you're gonna have yourself a Scooby Snack!
Thats a fact!
Keats

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06/24/2014 11:04 PM
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Take care of my father with Alzheimer's and mother who has multiple health problems and is disabled with spinal stenosis. In my home. 24/7. People who don't do it 24/7 and call themselves caregivers piss me off. I knew a lady who's mother was 1000 miles away and she visited her 4 times a year and said how "hard" it was to be a caregiver for her mother. Ugh.

I think depression is the hardest thing to deal with. And with dealing with someone w/advanced dementia, you start to doubt your own sanity.

Thanks for listening and bless you for taking care of your significant other.
 Quoting: Keats


Oh and another poster reminded me to add - I have an older brother and sister who stopped visiting years ago and refuse to provide ANY financial support for THEIR parents. Suddenly they were "my" parents when they fell ill.
And Scooby Doo if you come through you're gonna have yourself a Scooby Snack!
Thats a fact!
TAZZY

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06/24/2014 11:14 PM

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Care giving for 13 years for a loved one with Parkinson's at home followed with care giving (not 24/7) but a lot for almost another 10 years, gave me care taker burn out. My health was damaged (back). It changed my life in both good and bad ways. Now karma has rewarded me with my own (kind) of care giver. It use to make me so angry when other family member's would not pitch into help. They dumped all the responsibility on me and walked away. But they, in their own way reaped their own karma. I know this is not always the case but positive attracts positive and selfish people attract their own kind.

Last Edited by Tazzy on 06/24/2014 11:28 PM
3DC (OP)

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06/24/2014 11:20 PM

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I am female and used to be a psychiatric nurse before I became disabled myself. I do believe my husband feels way old before his time, what with wife and daughter disabled. We make sure to give him time to himself. He doesnt go out to bars or anything like that, but he does go hunting every year and I send him off to his brothers for a weekend once in a while. He also spends a good half hour in the shower every day....dont laugh, it helps!

He admits, I am the main caregiver for our daughter and I find time for myself when she lets me. (like right now). I try to focus on my blessings. It takes a lot of trial and error but balance is key. Sometimes being a caretaker means lots of ups and downs but if you have some personal rituals it helps a lot with your own sence of self.
 Quoting: lap


I am sure he appreciates that! And he must be a pretty patient guy. Guys have some difficulty adapting, as caregiving isn't as natural to us I think.

I do find time occasionally late at night or in the morning, but it's a zoo here all the time it seems.

God Bless you for taking care of your sister. You are one of few that have a heart of gold
 Quoting: Anonymous Coward 59611403


hesright

Take care of my father with Alzheimer's and mother who has multiple health problems and is disabled with spinal stenosis. In my home. 24/7. People who don't do it 24/7 and call themselves caregivers piss me off. I knew a lady who's mother was 1000 miles away and she visited her 4 times a year and said how "hard" it was to be a caregiver for her mother. Ugh.

I think depression is the hardest thing to deal with. And with dealing with someone w/advanced dementia, you start to doubt your own sanity.

Thanks for listening and bless you for taking care of your significant other.
 Quoting: Keats


I can't even imagine dealing with alzheimer's or dementia. I'm not surprised you would doubt your own sanity in that kind of situation. I'll be honest, I'm not sure I could handle it. Stay strong!
3DC (OP)

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06/24/2014 11:28 PM

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Care giving for 13 years for a loved one with Parkinson's at home followed with care giving (not 24/7) but a lot for almost another 10 years, gave me care taker burn out. My health was damaged (back). It changed my life in both good and bad ways. Now karma has rewarded me with my own (kind) of care taker. It use to make me so angry when other family member's would not pitch into help. They dumped all the responsibility on me and walked away. But they, in their own way reaped their own karma. I know this is not always the case but positive attracts positive and selfish people attract their own kind.
 Quoting: TAZZY


It's understandable to be angry at family, especially when they walk away from their responsibilities. I don't know if it happens out of fear, or where it comes from, but it's very sad to watch it happen (my grandmother went through this). You don't want to believe these people are capable of malice, but extreme situations bring out the worst in some, and the best in others. You did the right thing - try to stay positive and attract only others interested in doing the same. And yes, I know that's way easier said than done. Staying positive can be very difficult, too.
lap
Spiritual Quest for God

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06/24/2014 11:32 PM

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Take care of my father with Alzheimer's and mother who has multiple health problems and is disabled with spinal stenosis. In my home. 24/7. People who don't do it 24/7 and call themselves caregivers piss me off. I knew a lady who's mother was 1000 miles away and she visited her 4 times a year and said how "hard" it was to be a caregiver for her mother. Ugh.

I think depression is the hardest thing to deal with. And with dealing with someone w/advanced dementia, you start to doubt your own sanity.

Thanks for listening and bless you for taking care of your significant other.
 Quoting: Keats


Oh and another poster reminded me to add - I have an older brother and sister who stopped visiting years ago and refuse to provide ANY financial support for THEIR parents. Suddenly they were "my" parents when they fell ill.
 Quoting: Keats


So often family makes being a caretaker much much harder! Sometimes they feel so much guilt they try to convince themselves that there is something wrong with us for caring! Truth is though, God chose us for the task, not them, and He has his reasons. I am glad that God felt I was up to the task! That kinda makes me feel close to Him.
lap

Forgive yourself, forgive family, forgive nieghbors, forgive your country, forgive God, then: freedom is possible!
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06/24/2014 11:48 PM
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Re: Caregiver Support Thread


May The Lord shine his glorious face upon thee

Bless you all hf

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