Re: Caregivers/Caregiving

[Guest guest]

June, I am not the caregiver but you have some valid points. It sounds like he is in major DENIAL. He has to eat and drink better than he is. I am sure most of his emotion is that he has feelings of powerlessness. Being the one who is sick...I can tell you I do not have the control of my tongue that I used to. It is a struggle to control myself. You do not deserve to be treated like this. He does not deserve to be so sick. You have to work together every day to find balance and it is frickin'(here i go again...) hard. He may still want to have whatever control he does have left and may feel like even that is being taken away...even by reasonable suggestions. I receive 'suggestions' better when someone is telling me what someone else said or went through rather than 'You should

do______.' A lot of my anger is really me feeling like crud not an attack on the other person. I need to have more time to process things than someone who isn't sick. The sicker I am...the harder it is to eat ptotein, much less look at it. The same goes with vegetables. I MAKE myself eat the protein and veggies cuz I know it will make me feel better. He may have to learn things the hard way...like the rest of us. When dealing with members of my family...with their own issues...I tell them about something I read or saw rather than trying to tell them what to do. I have all guys in my house. But then it is their responsibility, not mine, on the follow-through. Whether his needs feel like they have to be met first depends on what they are. There may be a safety issue for him. My hubby has given me the wrong meds in the wrong amounts at times. Now I have to look at all the pills

and he doesn't like that. but I am the one who could get even sicker by taking the wrong ones. Your hubby may be going through Anger, too, at this point. These are all parts of the Greiving process. It took me over a year to go through the hard-core anger part and it still rears it's head at times. Not good to hear...I am sure. Everyone is different. Is there someone else he can talk to about what is going on within him? Does he participate in any online support groups? I am the one who finally had to make the decision to eat better, to drink more fluids, etc. I don't know if i would have listened until I was ready. Take what you want from this post and leave the rest. God loves both of you despite all you are going through. Hang in there...we are here for you. hugs S.Life is short...live it to the fullest...to your last living breath.Subject: Caregivers/CaregivingTo: "Neurosarcoidosis" <Neurosarcoidosis >Date: Tuesday, March 9, 2010, 5:37 PM

Feeling so "alone" at the moment. Need to vent! I've gone thru moments like these, but for some reason, it's hard to pull myself together, in spite of my faith/religion matters. Which leaves me filled with guilt of not giving it ALL (overwhelment, anxiety, depression--all of the above) to the ONE I have been believing in and where I did mention at one time, where my strength is relied on to get me thru. I'm feeling such anger/resentment and the question pops up: Why me, what did I do to deserve this?

From one caregiver to another--How do you do it? Must you also go thru combative issues, belittlement, derogatory languages/statements and moments of hatred that you just want to curl-up and die yourself. Or what about going to the grocery store and think about NOT returning! Does your beloved one who has the illness, believe they must come First, no matter how there are other family members to take care of? What about the statement: What do you do all day? No use of explaining because you're wasting your breath/energy and he doesn't want to HEAR it!!!!

Does one go thru episodes of noticing how the color of their pee is, or not even that--that they need to drink more WATER and keep hydrated, only to be told, "stop telling me what to do, or because he's not eating the right foods, of which he needs protein to help with the healing of his bed-sore (other than eating cereal/fruit-1x/day) that I'm not a doctor and I don't know better! The best one yet: Just leave me the f____k alone!

I'm sorry if I came on too strong, but I know for a fact, unless I release these "negativities" I'm going thru at the moment--I won't be able to snap out of it. The term: just one of those days....has turned into a week. What do you think?

[Guest guest]

I am approaching my one year diagnosis anniversary...yippee...The pain in my knees, scapula, and buzzing in feet/hands are tolerable. What bugs me the most is the "band wrapped tight" around my waist feeling. Does anybody have this one?

June,

I have been angry at times just trying to get a grip around this illness and why me. What helped me the most was receiving a hug from my spouse. Try giving him more hugs

From: June Heileman <junebug_4647@ yahoo.com>Subject: Caregivers/Caregivi ngTo: "Neurosarcoidosis" <Neurosarcoidosis@ yahoogroups. com>Date: Tuesday, March 9, 2010, 5:37 PM

Feeling so "alone" at the moment. Need to vent! I've gone thru moments like these, but for some reason, it's hard to pull myself together, in spite of my faith/religion matters. Which leaves me filled with guilt of not giving it ALL (overwhelment, anxiety, depression-- all of the above) to the ONE I have been believing in and where I did mention at one time, where my strength is relied on to get me thru. I'm feeling such anger/resentment and the question pops up: Why me, what did I do to deserve this?

From one caregiver to another--How do you do it? Must you also go thru combative issues, belittlement, derogatory languages/statement s and moments of hatred that you just want to curl-up and die yourself. Or what about going to the grocery store and think about NOT returning! Does your beloved one who has the illness, believe they must come First, no matter how there are other family members to take care of? What about the statement: What do you do all day? No use of explaining because you're wasting your breath/energy and he doesn't want to HEAR it!!!!

Does one go thru episodes of noticing how the color of their pee is, or not even that--that they need to drink more WATER and keep hydrated, only to be told, "stop telling me what to do, or because he's not eating the right foods, of which he needs protein to help with the healing of his bed-sore (other than eating cereal/fruit- 1x/day) that I'm not a doctor and I don't know better! The best one yet: Just leave me the f____k alone!

I'm sorry if I came on too strong, but I know for a fact, unless I release these "negativities" I'm going thru at the moment--I won't be able to snap out of it. The term: just one of those days....has turned into a week. What do you think?

[Guest guest]

Ask their advice sometimes too. The only thing that can hurt more than being a burden

is feeling there's nothing they can offer. Asking advice and opinions can let them know

they still count.

And yes, of course it helps if he does the same back to you.

Cheers,

Darrin

To: Neurosarcoidosis From: dmhs1666@...Date: Tue, 9 Mar 2010 16:14:00 -0800Subject: Re: Caregivers/Caregiving

I am approaching my one year diagnosis anniversary...yippee...The pain in my knees, scapula, and buzzing in feet/hands are tolerable. What bugs me the most is the "band wrapped tight" around my waist feeling. Does anybody have this one?

June,

I have been angry at times just trying to get a grip around this illness and why me. What helped me the most was receiving a hug from my spouse. Try giving him more hugs

From: June Heileman <junebug_4647@ yahoo.com>Subject: Caregivers/Caregivi ngTo: "Neurosarcoidosis" <Neurosarcoidosis@ yahoogroups. com>Date: Tuesday, March 9, 2010, 5:37 PM

Feeling so "alone" at the moment. Need to vent! I've gone thru moments like these, but for some reason, it's hard to pull myself together, in spite of my faith/religion matters. Which leaves me filled with guilt of not giving it ALL (overwhelment, anxiety, depression-- all of the above) to the ONE I have been believing in and where I did mention at one time, where my strength is relied on to get me thru. I'm feeling such anger/resentment and the question pops up: Why me, what did I do to deserve this?

From one caregiver to another--How do you do it? Must you also go thru combative issues, belittlement, derogatory languages/statement s and moments of hatred that you just want to curl-up and die yourself. Or what about going to the grocery store and think about NOT returning! Does your beloved one who has the illness, believe they must come First, no matter how there are other family members to take care of? What about the statement: What do you do all day? No use of explaining because you're wasting your breath/energy and he doesn't want to HEAR it!!!!

Does one go thru episodes of noticing how the color of their pee is, or not even that--that they need to drink more WATER and keep hydrated, only to be told, "stop telling me what to do, or because he's not eating the right foods, of which he needs protein to help with the healing of his bed-sore (other than eating cereal/fruit- 1x/day) that I'm not a doctor and I don't know better! The best one yet: Just leave me the f____k alone!

I'm sorry if I came on too strong, but I know for a fact, unless I release these "negativities" I'm going thru at the moment--I won't be able to snap out of it. The term: just one of those days....has turned into a week. What do you think?

[Guest guest]

Bill,

I have the feeling in both upper arms of a blood pressure cuff wrapped around and inflated.

Vivien

From: June Heileman <junebug_4647@ yahoo.com>Subject: Caregivers/Caregivi ngTo: "Neurosarcoidosis" <Neurosarcoidosis@ yahoogroups. com>Date: Tuesday, March 9, 2010, 5:37 PM

Feeling so "alone" at the moment. Need to vent! I've gone thru moments like these, but for some reason, it's hard to pull myself together, in spite of my faith/religion matters. Which leaves me filled with guilt of not giving it ALL (overwhelment, anxiety, depression-- all of the above) to the ONE I have been believing in and where I did mention at one time, where my strength is relied on to get me thru. I'm feeling such anger/resentment and the question pops up: Why me, what did I do to deserve this?

From one caregiver to another--How do you do it? Must you also go thru combative issues, belittlement, derogatory languages/statement s and moments of hatred that you just want to curl-up and die yourself. Or what about going to the grocery store and think about NOT returning! Does your beloved one who has the illness, believe they must come First, no matter how there are other family members to take care of? What about the statement: What do you do all day? No use of explaining because you're wasting your breath/energy and he doesn't want to HEAR it!!!!

Does one go thru episodes of noticing how the color of their pee is, or not even that--that they need to drink more WATER and keep hydrated, only to be told, "stop telling me what to do, or because he's not eating the right foods, of which he needs protein to help with the healing of his bed-sore (other than eating cereal/fruit- 1x/day) that I'm not a doctor and I don't know better! The best one yet: Just leave me the f____k alone!

I'm sorry if I came on too strong, but I know for a fact, unless I release these "negativities" I'm going thru at the moment--I won't be able to snap out of it. The term: just one of those days....has turned into a week. What do you think?

[Guest guest]



I used to have the "Why Me" thing going. A couple of things have helped me through. 1. My dad once said "I cried because I had no shoes until I saw the man that had no feet."

2. I said to my spouse, Why Me. And he said Why not you". Wow did that knock be back to reality.

3. There is a song that says, "I get knocked down but I get up again, nobody gonna keep me down." My daughter made me a cd of those words that play over and over, I get mad and things snap into place. I work harder, have more patients with myself and others.

It works for me maybe it will help you too.

My prayers are with you and everyone who has to deal with this monster, if it be as caregiver or self.

Love to all and God Bless You.

Jackie

Caregivers/Caregivi ngTo: "Neurosarcoidosis" <Neurosarcoidosis@ yahoogroups. com>Date: Tuesday, March 9, 2010, 5:37 PM

Feeling so "alone" at the moment. Need to vent! I've gone thru moments like these, but for some reason, it's hard to pull myself together, in spite of my faith/religion matters. Which leaves me filled with guilt of not giving it ALL (overwhelment, anxiety, depression-- all of the above) to the ONE I have been believing in and where I did mention at one time, where my strength is relied on to get me thru. I'm feeling such anger/resentment and the question pops up: Why me, what did I do to deserve this?

From one caregiver to another--How do you do it? Must you also go thru combative issues, belittlement, derogatory languages/statement s and moments of hatred that you just want to curl-up and die yourself. Or what about going to the grocery store and think about NOT returning! Does your beloved one who has the illness, believe they must come First, no matter how there are other family members to take care of? What about the statement: What do you do all day? No use of explaining because you're wasting your breath/energy and he doesn't want to HEAR it!!!!

Does one go thru episodes of noticing how the color of their pee is, or not even that--that they need to drink more WATER and keep hydrated, only to be told, "stop telling me what to do, or because he's not eating the right foods, of which he needs protein to help with the healing of his bed-sore (other than eating cereal/fruit- 1x/day) that I'm not a doctor and I don't know better! The best one yet: Just leave me the f____k alone!

I'm sorry if I came on too strong, but I know for a fact, unless I release these "negativities" I'm going thru at the moment--I won't be able to snap out of it. The term: just one of those days....has turned into a week. What do you think?

[Guest guest]

Thanks Vivien

That is the sensation but from belly button down to thighs

From: June Heileman <junebug_4647@ yahoo.com>Subject: Caregivers/Caregivi ngTo: "Neurosarcoidosis" <Neurosarcoidosis@ yahoogroups. com>Date: Tuesday, March 9, 2010, 5:37 PM

Feeling so "alone" at the moment. Need to vent! I've gone thru moments like these, but for some reason, it's hard to pull myself together, in spite of my faith/religion matters. Which leaves me filled with guilt of not giving it ALL (overwhelment, anxiety, depression-- all of the above) to the ONE I have been believing in and where I did mention at one time, where my strength is relied on to get me thru. I'm feeling such anger/resentment and the question pops up: Why me, what did I do to deserve this?

From one caregiver to another--How do you do it? Must you also go thru combative issues, belittlement, derogatory languages/statement s and moments of hatred that you just want to curl-up and die yourself. Or what about going to the grocery store and think about NOT returning! Does your beloved one who has the illness, believe they must come First, no matter how there are other family members to take care of? What about the statement: What do you do all day? No use of explaining because you're wasting your breath/energy and he doesn't want to HEAR it!!!!

Does one go thru episodes of noticing how the color of their pee is, or not even that--that they need to drink more WATER and keep hydrated, only to be told, "stop telling me what to do, or because he's not eating the right foods, of which he needs protein to help with the healing of his bed-sore (other than eating cereal/fruit- 1x/day) that I'm not a doctor and I don't know better! The best one yet: Just leave me the f____k alone!

I'm sorry if I came on too strong, but I know for a fact, unless I release these "negativities" I'm going thru at the moment--I won't be able to snap out of it. The term: just one of those days....has turned into a week. What do you think?

[Guest guest]

First June, Let me say that I will keep you in my prayers. Itoo am the caregiver fro my wife . As I read your words I found myself seeing exactly what I go through at times here. I make sure that I am home everyday to get dinner ready for yet she doesn't want to eat at times. She argues that she doesn't need the cane that the docotor prescribed to help her walk. I think that in many cases our loved ones who suffer with this disease lash out because they have nothing else left but their stubborn side. I always try to remember that before this disease took a good part of from me she was very independent doing many things on her own. Now she needs my help with many of the simplest things. It gets extremely difficult at times and I want

to scream because like you I am doing the best that I can. There are errands to run, groceries to buy, others to take care of and my daily job. Yet there are times when with everything I have done it does not seem to be enough. However, when all is said and done I will keep on doing what I need to do to take care of and I will do what I need to do to take care of me. I will continue to keep all of you in my prayers MattSubject: Caregivers/CaregivingTo: "Neurosarcoidosis" <Neurosarcoidosis >Date: Tuesday, March 9, 2010, 12:37 PM

Feeling so "alone" at the moment. Need to vent! I've gone thru moments like these, but for some reason, it's hard to pull myself together, in spite of my faith/religion matters. Which leaves me filled with guilt of not giving it ALL (overwhelment, anxiety, depression-- all of the above) to the ONE I have been believing in and where I did mention at one time, where my strength is relied on to get me thru. I'm feeling such anger/resentment and the question pops up: Why me, what did I do to deserve this?

From one caregiver to another--How do you do it? Must you also go thru combative issues, belittlement, derogatory languages/statement s and moments of hatred that you just want to curl-up and die yourself. Or what about going to the grocery store and think about NOT returning! Does your beloved one who has the illness, believe they must come First, no matter how there are other family members to take care of? What about the statement: What do you do all day? No use of explaining because you're wasting your breath/energy and he doesn't want to HEAR it!!!!

Does one go thru episodes of noticing how the color of their pee is, or not even that--that they need to drink more WATER and keep hydrated, only to be told, "stop telling me what to do, or because he's not eating the right foods, of which he needs protein to help with the healing of his bed-sore (other than eating cereal/fruit- 1x/day) that I'm not a doctor and I don't know better! The best one yet: Just leave me the f____k alone!

I'm sorry if I came on too strong, but I know for a fact, unless I release these "negativities" I'm going thru at the moment--I won't be able to snap out of it. The term: just one of those days....has turned into a week. What do you think?

[Guest guest]

June,

my heart goes out to you. I know that my husband bends over backwards to make my life easier, and at times, I react in such a a way, that he figures I must absolutely hate him.

What I hate- it this disease.

With NS-- many of us have frontal lobe involvement, and that is where personality, problem solving, comprehension, multi-tasking, reason, sexuality, is governed. That being said, we cannot use this disease to justify being assholes.

So many times, early in this disease, I honestly felt that would be better off without me. So I pushed him away. He'd come with a hug-- and I'll pull away. He'd want to talk, and I wanted to bitch at him. Nothing he could do was going to make me happy, and he deserved better than that. So-- I worked hard at undermining our relationship. Very hard.

I figured that if I made him mad enough, he'd leave and find someone to love him the way I wanted to love him-- the way it had been before I got sick.

I seriously considered suicide--and even had a plan.

Even prior to sarcoidosis, I had already injured my back to such an extent, that I was on huge amounts of pain meds and in constant pain. All the things we loved to do as a couple changed-- and was again-- thinking he "deserved" better.

When I ended up in Auburn Pain Medical Rehabilitation Center for a 3 wk outpatient pain management program, he and I had to go up for a "pre-admit" interview. The very first question they asked me- was "do you have a plan to commit suicide?" I said yes. was livid-- he had no clue that I was that despondent. Right after that interview, we had to leave for lunch, and then come back for an afternoon of intake exams.

We stepped out of the office, and he grabbed my arms, spun me toward him-- and screamed- tears running down his face-- "what do you mean you want to kill yourself!" How dare you--- do you know how devasted Tor and I would be without you! ....

Needless to say, that was the hardest lunch hour we've ever spent together. The insult from that still lingers-- and still raises it's ugly head on occassion. Buggers.

What I learned was that he WANTED- to take care of me. He signed on "for better or worse, in sickness and in health" and he meant it!

I really thought I'd be doing him a favor if I wasn't a part of their life-- and he'd be better off with someone else--someone healthy. So-- as a friend of mine puts it-- if you're going to be a bitch (or bastard) be the best bitch you can be.

There are days when I take a glimspe of that time- and count my blessings that I am still here-- and he still has hugs available. I still have times when his head on a platter seems like a good idea-- and then I remember how totally selfish that time and energy was -- and how hurtful it was for him.

If you've not picked up a copy of Piburns BEYOND CHAOS-- order it today! It is heart opening information-- and a book that each of us needs to read-- whether you are in a relationship or not. It is about a husband taking care of his chronically ill wife. In man speak-- so the guys in our life can get it- and so that we can understand where they come from.

It's hard-- the loss of self-reliance, the loss of income, careers, health, sexuality, the stranger that has come into our bodies and made us less than we were- and we get angry. Sadly, we attack the one person that wants to fix us- and since they can't- they feel not only the rejection of our attitude-- but their impotence in alla that they do -- and it is a huge nasty cycle.

With chronic illness, you both experience the loss of self, the loss of intimacy and relationship- and you both grieve.

When we first get sick-- we find ourself in DENIAL-- heck, this will burn itself out in time. It doesn't-- and we have to learn to deal with it. We then get ANGRY--- and that manifests itself in so many ways-- and the hostility comes roaring its ugly head up-- devouring our very soul. We end up feeling GUILTY-- and that makes us ANGRY; and we want our life back, and we want our spouses to be happy--- and to be loved-- and we can't do it-- so we push you away.. Then we catch our breath-- and we start looking for answers --we BARGAIN for every possible health alternative to find a way to heal-- and hit wall after wall. That makes us ANGRY, feeling GUILTY, DENYING what is happening, and by god-- there has to be an answer. Then hopefully, we have a good day-- and we see that there can be some small amount of ACCEPTANCE.

These are the FIVE STAGES OF GRIEVING (Kubler-Ross) and we ALL go through these stages-- time and again. Initally, we only stay short periods of time in each phase-- and acceptance seems so far away. As the years go by, we learn to recognize when we are reentering each phase, and because it becomes more "comfortable" --actually more familiar-- we are gentler on ourself and our loved ones-- and the dynamics less hostile.

Knowing that what your husband is going through-- that a huge part of his anger is not about you- is key to you being able to stick it out. Calling his 'bluff' and letting him know that no matter how much he pushes you away--- you're not going anywhere- helps to take the fear of rejection out of his sails- and he has no other choice but to either leave on his own-- or pull you closer and hold you- so that you can both find the strength to continue on. You have to tell him that you're not buying into his hostility-- and you will see him take a deep breath, and he will be humbled.

It may happen with you screaming at him-- he may scream at you-- but when you put the your guards down-- and embrace what is- even this frickin illness can be a blessing.

Truly, my heart goes out to both of you- it's not easy, and I don't wish this path on anyone-- yet it is do-able.

Most sincerely

Tracie

NS Co-owner/moderator

To: Neurosarcoidosis Sent: Thu, March 11, 2010 6:37:01 PMSubject: Re: Caregivers/Caregiving

First June, Let me say that I will keep you in my prayers. Itoo am the caregiver fro my wife . As I read your words I found myself seeing exactly what I go through at times here. I make sure that I am home everyday to get dinner ready for yet she doesn't want to eat at times. She argues that she doesn't need the cane that the docotor prescribed to help her walk. I think that in many cases our loved ones who suffer with this disease lash out because they have nothing else left but their stubborn side. I always try to remember that before this disease took a good part of from me she was very independent doing many things on her own. Now she needs my help with many of the simplest things. It gets extremely difficult at times and I want to scream because like you I am doing the best that I can. There are errands

to run, groceries to buy, others to take care of and my daily job. Yet there are times when with everything I have done it does not seem to be enough. However, when all is said and done I will keep on doing what I need to do to take care of and I will do what I need to do to take care of me. I will continue to keep all of you in my prayers Matt

From: June Heileman <junebug_4647@ yahoo.com>Subject: Caregivers/Caregivi ngTo: "Neurosarcoidosis" <Neurosarcoidosis@ yahoogroups. com>Date: Tuesday, March 9, 2010, 12:37 PM

Feeling so "alone" at the moment. Need to vent! I've gone thru moments like these, but for some reason, it's hard to pull myself together, in spite of my faith/religion matters. Which leaves me filled with guilt of not giving it ALL (overwhelment, anxiety, depression-- all of the above) to the ONE I have been believing in and where I did mention at one time, where my strength is relied on to get me thru. I'm feeling such anger/resentment and the question pops up: Why me, what did I do to deserve this?

From one caregiver to another--How do you do it? Must you also go thru combative issues, belittlement, derogatory languages/statement s and moments of hatred that you just want to curl-up and die yourself. Or what about going to the grocery store and think about NOT returning! Does your beloved one who has the illness, believe they must come First, no matter how there are other family members to take care of? What about the statement: What do you do all day? No use of explaining because you're wasting your breath/energy and he doesn't want to HEAR it!!!!

Does one go thru episodes of noticing how the color of their pee is, or not even that--that they need to drink more WATER and keep hydrated, only to be told, "stop telling me what to do, or because he's not eating the right foods, of which he needs protein to help with the healing of his bed-sore (other than eating cereal/fruit- 1x/day) that I'm not a doctor and I don't know better! The best one yet: Just leave me the f____k alone!

I'm sorry if I came on too strong, but I know for a fact, unless I release these "negativities" I'm going thru at the moment--I won't be able to snap out of it. The term: just one of those days....has turned into a week. What do you think?