The Long Hold Support Group

[[4G...]]

Just seen this. Thinking of you and Mykala, Trishy.  💙💙💙

[[In...]]

I checked on Cathy today. It is not a good situation.

 

Her Bahcets is progressing rapidly and she’s been told by the doctors at the university that it is fatal in her case.

 

She is on steroids to fight the inflammation which is everywhere on her body. And she is swollen from the steroids even as she lost 11 lbs. They are turning this into a case study as it is rare to see this in the US. She has sores everywhere on her body and cannot use her right hand to grip anything. Cannot sign her name. Cannot see at all out of her right eye, can’t  hardly swallow.

 

We talked on a free phone she was able to qualify for and it kept cutting out. The cognitive effects seemed better in the beginning, but got involved towards the end as she said we had failed as parents.

 

Turned into a rough conversation. But we will see her. This is an autoimmune disease and is not contagious. I can see no connection or how this came about. My only thought there is that I have idiopathic subglottic stenosis and that also is an autoimmune disease also.

 

I needed to do this as I must keep up with what is happening with her.

 

Unfortunately, Cathy doesn’t understand why none of her children will see her or talk to her. She wanted me to get Blake to sneak Delilah (her granddaughter) over to see her, but I told her I would not ever do that. Blake would not do it himself.

 

This kids of her do not speak to her anymore because she neglected them throughout their childhoods and drank heavily. Her 1st husband is a decent man, but her 2nd one was stingy himself with the kids and used her tanf funds for the two of them and the kids had to fight for food. The 3rd husband was decent enough, but by then, the kids were mostly teenagers and young adults who drifted away from the two of them.

 

This a stressful time for Dan and me, but we will deal with it. I gave her legal resources as she plans to fight the state for putting her in jail, and will also need an estate planner. I’m not sure about that one as she really has nothing, but her youngest is the one with aspergers, and he may need something as he is being taught to live on his own.

 

I was sorry to see the confusion come out of her as we talked, but it happened. I had asked her before if that part was better, and she said sometimes it is and other time it isn’t. So it wasn’t today as we spoke.

[[Ma...]]

I checked on Cathy today. It is not a good situation.

 

Her Bahcets is progressing rapidly and she’s been told by the doctors at the university that it is fatal in her case.

 

She is on steroids to fight the inflammation which is everywhere on her body. And she is swollen from the steroids even as she lost 11 lbs. They are turning this into a case study as it is rare to see this in the US. She has sores everywhere on her body and cannot use her right hand to grip anything. Cannot sign her name. Cannot see at all out of her right eye, can’t  hardly swallow.

 

We talked on a free phone she was able to qualify for and it kept cutting out. The cognitive effects seemed better in the beginning, but got involved towards the end as she said we had failed as parents.

 

Turned into a rough conversation. But we will see her. This is an autoimmune disease and is not contagious. I can see no connection or how this came about. My only thought there is that I have idiopathic subglottic stenosis and that also is an autoimmune disease also.

 

I needed to do this as I must keep up with what is happening with her.

 

Unfortunately, Cathy doesn’t understand why none of her children will see her or talk to her. She wanted me to get Blake to sneak Delilah (her granddaughter) over to see her, but I told her I would not ever do that. Blake would not do it himself.

 

This kids of her do not speak to her anymore because she neglected them throughout their childhoods and drank heavily. Her 1st husband is a decent man, but her 2nd one was stingy himself with the kids and used her tanf funds for the two of them and the kids had to fight for food. The 3rd husband was decent enough, but by then, the kids were mostly teenagers and young adults who drifted away from the two of them.

 

This a stressful time for Dan and me, but we will deal with it. I gave her legal resources as she plans to fight the state for putting her in jail, and will also need an estate planner. I’m not sure about that one as she really has nothing, but her youngest is the one with aspergers, and he may need something as he is being taught to live on his own.

 

I was sorry to see the confusion come out of her as we talked, but it happened. I had asked her before if that part was better, and she said sometimes it is and other time it isn’t. So it wasn’t today as we spoke.

 

Oh Intend, I am so sorry.  I can't imagine how  hard this is on you and Dan.  You have too much to deal with, I hope Mary decides to become involved.  Love you and thinking of you, Mary 🐱🐾🐾🛠🔩🌹🌹

[[es...]]

Intend, sent you a pm. I also hope that Mary will be there for all of you. Sending my love, Espy

[[In...]]

Mary,

 

Mary will never get involved. She is consumed with herself and what she considers problems. They are not problems  as far as I can see, but to her they are. She is in Sacramento and has this new house that is totally high tech. Solar panels and charging ports for new Tesla.

 

But it may not work out with Brad. It is hard to say. They will come back and forth from there to here.

 

Mary does not get along with Cathy and makes no excuses for it. Cathy has used up a lot of people in her life. She wears them down until they do not want to be involved with her. But this is a true tragedy.

 

I will just follow through as I can. I have to help Dan also just as he helps me where he can. We are now in unknown territory much as we are with life in general.

[[Ma...]]

Mary,

 

Mary will never get involved. She is consumed with herself and what she considers problems. They are not problems  as far as I can see, but to her they are. She is in Sacramento and has this new house that is totally high tech. Solar panels and charging ports for new Tesla.

 

But it may not work out with Brad. It is hard to say. They will come back and forth from there to here.

 

Mary does not get along with Cathy and makes no excuses for it. Cathy has used up a lot of people in her life. She wears them down until they do not want to be involved with her. But this is a true tragedy.

 

I will just follow through as I can. I have to help Dan also just as he helps me where he can. We are now in unknown territory much as we are with life in general.

 

You and Dan were put on this earth to be together ( with Pepper of course) :smitten: 🌹🛠

[[In...]]

Definitely with little Pepper who’s taking her nap right now.

 

Dan and I will head off to the store in awhile.

 

Do not worry; we will be ok.  :smitten:  🌹 🌶 🔨

 

Just to add, I know my limitations. That is essential to survive any situation.

[[In...]]

Intend, sent you a pm. I also hope that Mary will be there for all of you. Sending my love, Espy

 

I got it E. Thank you.

[[Ma...]]

Signing off you guys, love you all.  Hope you have a good nights sleep  :sleepy:

[[fr...]]

  So sorry Intend, my heart aches for all you and family face.  You are very brave.  :smitten:

[[Ma...]]

Good morning LHSG, hoping for a decent day for us 

 

Maybe it's time for The Perseverance Train, for a trip with all the others, The Village and the Looking Forward group, to see the country side, spend some time together, and share food and drink 🍹.

All pets and critters welcome.  Rise and shine. The train is pulling out of the station, everyone be ready 🚂🚂🚂🚂🚂🚂🚂🚂🚂🚂🚂🚂🚂🚂🚂choooochoooo, chuga chuga.  🌲🌲🌲🌲🌲🚂🚂🚂🚂🚂🌳🌳🌳🌳🌳🚂🚂🚂🚂🚂🚂🚂🚂🌴🌴🌴🌴🌴🌴🌴🌻🌻🌻🌻🌻🌻🍀🍀🍀🍀🍀🍀🌺🌺🌺🌺🌺🍀

 

On my way, 👩🏻‍✈️Mary

[[Tr...]]

Good morning LHSG, hoping for a decent day for us 

 

Maybe it's time for The Perseverance Train, for a trip with all the others, The Village and the Looking Forward group, to see the country side, spend some time together, and share food and drink 🍹.

All pets and critters welcome.  Rise and shine. The train is pulling out of the station, everyone be ready 🚂🚂🚂🚂🚂🚂🚂🚂🚂🚂🚂🚂🚂🚂🚂choooochoooo, chuga chuga.  🌲🌲🌲🌲🌲🚂🚂🚂🚂🚂🌳🌳🌳🌳🌳🚂🚂🚂🚂🚂🚂🚂🚂🌴🌴🌴🌴🌴🌴🌴🌻🌻🌻🌻🌻🌻🍀🍀🍀🍀🍀🍀🌺🌺🌺🌺🌺🍀

 

On my way, 👩🏻‍✈️Mary

Morning sweet Mary,

Can the train stop at the grocery store, I need to pick up a few things after I do some housework. The kids are coming over later for dinner and ice cream cake. It's Rich's b day on Tuesday so we're celebrating today, makes it easier bc no one has to work today.

 

Hope you have a great day my dear and PLEEEEEASE let's stop first for a ☕ I need a little extra pep in my step today with all I have to do. Yesterday was a pretty sad day with the news about the dog. I guess hearing it from the vet makes it all the more reason to if that makes sense, anyway we'll love the hell out of her for whatever time we have left with her. We've decided no more holding back on treats or table scraps.. Whatever baby wants baby is going to get🐶🐾🐾🐾🐾🐾🐾🐾

 

Love you,

Trish ❤️

[[Tr...]]

Intend, I have no words... But I have lots and lots of hugs for you and Dan. You don't deserve this my friend.. No matter what Cathy has done she's still your daughter and I'm sure the pain of all of this is hitting you hard no matter how strong you are and for that my heart breaks. 💔

 

Here are my hugs, take all you need..  :therethere: :therethere: :therethere:..............

[[Ma...]]

Good morning LHSG, hoping for a decent day for us 

 

Maybe it's time for The Perseverance Train, for a trip with all the others, The Village and the Looking Forward group, to see the country side, spend some time together, and share food and drink 🍹.

All pets and critters welcome.  Rise and shine. The train is pulling out of the station, everyone be ready 🚂🚂🚂🚂🚂🚂🚂🚂🚂🚂🚂🚂🚂🚂🚂choooochoooo, chuga chuga.  🌲🌲🌲🌲🌲🚂🚂🚂🚂🚂🌳🌳🌳🌳🌳🚂🚂🚂🚂🚂🚂🚂🚂🌴🌴🌴🌴🌴🌴🌴🌻🌻🌻🌻🌻🌻🍀🍀🍀🍀🍀🍀🌺🌺🌺🌺🌺🍀

 

On my way, 👩🏻‍✈️Mary

Morning sweet Mary,

Can the train stop at the grocery store, I need to pick up a few things after I do some housework. The kids are coming over later for dinner and ice cream cake. It's Rich's b day on Tuesday so we're celebrating today, makes it easier bc no one has to work today.

 

Hope you have a great day my dear and PLEEEEEASE let's stop first for a ☕ I need a little extra pep in my step today with all I have to do. Yesterday was a pretty sad day with the news about the dog. I guess hearing it from the vet makes it all the more reason to if that makes sense, anyway we'll love the hell out of her for whatever time we have left with her. We've decided no more holding back on treats or table scraps.. Whatever baby wants baby is going to get🐶🐾🐾🐾🐾🐾🐾🐾

 

Love you,

Trish ❤️

 

Yes, of course, I am sure others need a few things at the store too.  That's what Tim and I do too, whatever they want they get!!    And coffee , definitely.  💜❤️🛒☕️

[[In...]]

I’m up LHSG, and have been up for @3 hours.

 

I fell asleep last night from total exhaustion very quickly, but awoke about 2 hours later. And I drifted back and forth into and out of light sleep until I was fully awake by 4 am. Pepper was beside me all that time, and she jumped off the bed @5 am. Then I just got up myself, put away washed jars from titration, made my coffee, sat down right here, checked email on this iPad, and have stared at this screen  for now 3 hours.

 

I gotten up several times during this time to make Dans coffee, and then wake him up.

 

We don’t drink the same kind of coffee. Mine is mixed with decaf, and his is full strength. And I never wake him ordinarily, but he likes to go to church with the LDS bunch on Sunday. I don’t object to this because he has many friends there from our neighborhood, and Dan is a very social type person.

 

He is no couch potato and mows lawns for the infirm people in the neighborhood and snow blows the driveways and sidewalks in the winter. And yesterday, he spent the day weeding our yard and rooting out some particular wildflower that is  actually some kind of weed.

 

We did make it to the store, and came home to a late dinner. Watched end of the FBI on CBS and then watched 48 hours.

 

Basically, in all of my ramble here, I’m saying I did not sleep much at all last night. 

[[Ma...]]

I’m up LHSG, and have been up for @3 hours.

 

I fell asleep last night from total exhaustion very quickly, but awoke about 2 hours later. And I drifted back and forth into and out of light sleep until I was fully awake by 4 am. Pepper was beside me all that time, and she jumped off the bed @5 am. Then I just got up myself, put away washed jars from titration, made my coffee, sat down right here, checked email on this iPad, and have stared at this screen  for now 3 hours.

 

I gotten up several times during this time to make Dans coffee, and then wake him up.

 

We don’t drink the same kind of coffee. Mine is mixed with decaf, and his is full strength. And I never wake him ordinarily, but he likes to go to church with the LDS bunch on Sunday. I don’t object to this because he has many friends there from our neighborhood, and Dan is a very social type person.

 

He is no couch potato and mows lawns for the infirm people in the neighborhood and snow blows the driveways and sidewalks in the winter. And yesterday, he spent the day weeding our yard and rooting out some particular wildflower that is  actually some kind of weed.

 

We did make it to the store, and came home to a late dinner. Watched end of the FBI on CBS and then watched 48 hours.

 

Basically, in all of my ramble here, I’m saying I did not sleep much at all last night.

 

I drink half decaf and half reg Folgers  .  Dan sounds like the best guy.  Sorry your sleep was irregular.  Sleep is so important.  I feel like crap if I sleep badly.  I know you have a lot on your mind though.  Know I love you 🌹🌹🐱🐾🐾⚒🛠

[[In...]]

Its Maxwell House French Roast around here. And I mix mine with the Kroger brand medium roast decaf.

 

So I learned years ago that the darker the roast, the less caffeine it has. And the lighter the roast, the more caffeine it has. So I’m getting less caffeine with the French Roast and a bit more caffeine with the Kroger medium roast. I used to buy the Starbucks, Seattle’s Best, and Duncin Donuts decaf until I couldn’t find them anywhere in a grocery store. And I’m not one for specialty shops, so even though we have Starbucks everywhere, I do not go into coffee shops.

 

Yes, I have tons on my mind, and now thinking what to do about it. Cathy needed  legal referral, and I gave her some, but thought why did she not ask those disability lawyers for referrals? She said they told her to call 211 to get referrals as they do only disability cases. That’s not smart IMO. Lawyers know other lawyers, and not all are the same, but not hard to know lawyers in other areas of law.

 

I did plenty of 211 calls in my job at Salt Lake County, and could give anyone who called several resources depending on the need. Homeless? 10 or more homeless shelters. Need taxes done? Times and locations of free tax help. Need a place to take an out of control kid? Bring where I was working if a teenager at age 12 and up or to the Familiy Support center in 4 different locations throughout the valley if under 12. Once I had a teen or 20 something call and say he had been recreating on Xanax, and had just discovered he was needing it on regular basis.

 

Now there’s a surprise. We all get that one I think. He was troubled about this and kind of whispered to me. And my voice was low also but audible as that was before all my generic changes; way before. But I explained how to titrate off as I’d already figured my Xanax titration when I learned what it was. He was quite upset about this and just wanted to stop it completely. So he wanted to stop talking about it, and we stopped and agreed he’d call back if he wanted to. And my co-worker asked how I knew all this, and I just said that I’ve been researching and I’ve learned a lot and doing it myself.

 

And if one needed a lawyer, we used to have a pro bono firm that involved 4 independent law firms working in the same office to help those who qualified pro bono. Those are now gone I think, and the ACLU has taken their place. So yesterday I referred Cathy to the ACLU for her intent to sue the state for her jailing which was truly unjustified.

 

But where are my resources now? I’m not doing those 211 calls anymore so I don’t know. I can’t get her medical information as it’s protected by HIPPA and I’m not trying to get it anyway. Do I just go with her to all doctors appointments and hope they let me in? At one point, she had me on her list of emergency contact, but she took me off. That was verified by the westridege clinic for the university of Utah several months back when I wanted to get her help for her mental health. I had to make it clear that I was not trying to get information, but that I was giving them information. And one cannot always rely on the receptionist to give that info or take the info as they put you on hold to get an answer to whatever.

 

Dan and I discussed whether this involves hospice or not. Medicare will pay for hospice if the illness runs it’s expected course of six months or less and the patient has part A benefits as certified by a physician (part A is hospitalization whether it be 2 hours or 2 years) but will not lose this hospice benefit if the illness runs longer than the 6 months. This Bahcets has a course of 10 years from what I’ve read depending on the individual and the severity of it.

 

Are we prepared to have hospice for months to years and where does this happen?

 

I may have to resort to the bishop of this ward even though we are not LDS as this bishop is a nurse at Intermountain Healthcare and is one smart man.

[[Ma...]]

Its Maxwell House French Roast around here. And I mix mine with the Kroger brand medium roast decaf.

 

So I learned years ago that the darker the roast, the less caffeine it has. And the lighter the roast, the more caffeine it has. So I’m getting less caffeine with the French Roast and a bit more caffeine with the Kroger medium roast. I used to buy the Starbucks, Seattle’s Best, and Duncin Donuts decaf until I couldn’t find them anywhere in a grocery store. And I’m not one for specialty shops, so even though we have Starbucks everywhere, I do not go into coffee shops.

 

Yes, I have tons on my mind, and now thinking what to do about it. Cathy needed  legal referral, and I gave her some, but thought why did she not ask those disability lawyers for referrals? She said they told her to call 211 to get referrals as they do only disability cases. That’s not smart IMO. Lawyers know other lawyers, and not all are the same, but not hard to know lawyers in other areas of law.

 

I did plenty of 211 calls in my job at Salt Lake County, and could give anyone who called several resources depending on the need. Homeless? 10 or more homeless shelters. Need taxes done? Times and locations of free tax help. Need a place to take an out of control kid? Bring where I was working if a teenager at age 12 and up or to the Familiy Support center in 4 different locations throughout the valley if under 12. Once I had a teen or 20 something call and say he had been recreating on Xanax, and had just discovered he was needing it on regular basis.

 

Now there’s a surprise. We all get that one I think. He was troubled about this and kind of whispered to me. And my voice was low also but audible as that was before all my generic changes; way before. But I explained how to titrate off as I’d already figured my Xanax titration when I learned what it was. He was quite upset about this and just wanted to stop it completely. So he wanted to stop talking about it, and we stopped and agreed he’d call back if he wanted to. And my co-worker asked how I knew all this, and I just said that I’ve been researching and I’ve learned a lot and doing it myself.

 

And if one needed a lawyer, we used to have a pro bono firm that involved 4 independent law firms working in the same office to help those who qualified pro bono. Those are now gone I think, and the ACLU has taken their place. So yesterday I referred Cathy to the ACLU for her intent to sue the state for her jailing which was truly unjustified.

 

But where are my resources now? I’m not doing those 211 calls anymore so I don’t know. I can’t get her medical information as it’s protected by HIPPA and I’m not trying to get it anyway. Do I just go with her to all doctors appointments and hope they let me in? At one point, she had me on her list of emergency contact, but she took me off. That was verified by the westridege clinic for the university of Utah several months back when I wanted to get her help for her mental health. I had to make it clear that I was not trying to get information, but that I was giving them information. And one cannot always rely on the receptionist to give that info or take the info as they put you on hold to get an answer to whatever.

 

Dan and I discussed whether this involves hospice or not. Medicare will pay for hospice if the illness runs it’s expected course of six months or less and the patient has part A benefits as certified by a physician (part A is hospitalization whether it be 2 hours or 2 years) but will not lose this hospice benefit if the illness runs longer than the 6 months. This Bahcets has a course of 10 years from what I’ve read depending on the individual and the severity of it.

 

Are we prepared to have hospice for months to years and where does this happen?

 

I may have to resort to the bishop of this ward even though we are not LDS as this bishop is a nurse at Intermountain Healthcare and is one smart man.

 

I think that is a fabulous idea Intend.  I am sure he would know or know who knows and at least get you going in the right direction.  Please please take care of yourself through this.  I know you will take care of Dan and Pepper, but I don't trust you will take care of you .  :smitten:

[[Ma...]]

Be back in a while 

[[4G...]]

I'm only just onto the actual LHSG today.

 

Intend,  I really don't know how you cope. You are very strong. I'm so, so sorry to hear about your Cathy. I have zero experience of this, but I'm sending my thoughts and sympathy. I feel so helpless and wish there was something I could do. Sadly that's a fairly familiar feeling on this forum.

Love and Hugs.  Gilly xxx 💟💟💟

[[Ma...]]

I'm only just onto the actual LHSG today.

 

Intend,  I really don't know how you cope. You are very strong. I'm so, so sorry to hear about your Cathy. I have zero experience of this, but I'm sending my thoughts and sympathy. I feel so helpless and wish there was something I could do. Sadly that's a fairly familiar feeling on this forum.

Love and Hugs.  Gilly xxx 💟💟💟

 

Hey English 

[[4G...]]

Hey, girlfriend! 😀

[[Ma...]]

Hey, girlfriend! 😀

💋💋 :laugh:

 

Hope you are feeling better ❤️🐱🐾🐾

[[4G...]]

I'm okay, Honey, how are you? 😀 xxx

[[Ma...]]

I'm okay, Honey, how are you? 😀 xxx

I had a pretty good day dear