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PrimeTimer
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« Reply #50 on: December 28, 2020, 10:44:16 PM »

So, I get a call today. Hubby is going to be transferred to a nursing facility for an additional 20 days physical rehab/nursing care. Just yesterday he told me he was doing better. His case manager says otherwise. Meanwhile his family continues treating me like garbage. I am done with them and may not be speaking to hubby for a while either. Happy New Year.
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Husband has ESRD with Type I Diabetes -Insulin Dependent.
I was his carepartner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
MooseMom
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« Reply #51 on: December 29, 2020, 08:10:52 AM »

How do you feel about hubby being away for an extra 20 days?  Does it make you anxious having him gone, or do you feel that it is a chance to catch your breath?

How does your hubby feel about the way his family is treating you (well, both of you)?  Does he insist on maintaining familial ties, or would he be OK with never speaking to them again?

It must have been a shock to hear hubby say one thing and his case manager say something completely contrary.

I am so sorry this is happening during the holiday season AND during this covid year.

Are you OK there on your own?

 :cuddle;
« Last Edit: December 29, 2020, 09:36:08 AM by MooseMom » Logged

"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
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« Reply #52 on: December 29, 2020, 08:20:42 AM »

Pea Tea, I am just so sorry that the situation has deteriorated.  :cuddle; You have to look after yourself as your priority. Very saddened that other "adults" cannot acknowledge the severity of the situation - your husband (who knows how you suffer and his own state of health) and his family. You are entitled to whatever direction you choose. Please, take care.
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kristina
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« Reply #53 on: December 29, 2020, 09:24:09 AM »

So, I get a call today. Hubby is going to be transferred to a nursing facility for an additional 20 days physical rehab/nursing care. Just yesterday he told me he was doing better. His case manager says otherwise. Meanwhile his family continues treating me like garbage. I am done with them and may not be speaking to hubby for a while either. Happy New Year.

Hello PT,
I do hope that the truth is somewhere between : that your husband says he is doing better and that his case-manager says otherwise ... and hopefully "things" turn out alright eventually for both of you (fingers crossed !!!) ... and please don't forget to take good care and look after yourself during these stressful times and I wish you both all the best from Kristina. :grouphug;
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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
PrimeTimer
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« Reply #54 on: December 29, 2020, 02:02:07 PM »

How do you feel about hubby being away for an extra 20 days?  Does it make you anxious having him gone, or do you feel that it is a chance to catch your breath?

How does your hubby feel about the way his family is treating you (well, both of you)?  Does he insist on maintaining familial ties, or would he be OK with never speaking to them again?

It must have been a shock to hear hubby say one thing and his case manager say something completely contrary.

I am so sorry this is happening during the holiday season AND during this covid year.

Are you OK there on your own?

 :cuddle;

I feel cheated MM. But not by hubby or his family. After some thinking I realized that the real reason why I feel so cheated is because I'm sick. Same goes for why I am so angry right now too. When I first learned that I was sick I thought it would be a matter of taking some medicine and I'd get better. But what I have is life long and any break from it will, if at all, come in the form of remission. Damn! At 56 I thought I should be in my prime but then a bus hit me. Damn bus. 

As for hubby, before I got sick I would help him keep up on his feet and "all things Diabetes/Dialysis". But, he's a big boy and he took a gamble and now, as a married couple, we are both paying the price. And that's just it; we are a couple. Partners. Each other's half, two peas in a pod. What affects him affects me and vice-versa. So, it is both our problem and we've got to deal with it. We've just got to. Dang it. I am angry at him but I know that feeling this way much longer won't do either of us any good. And I want him well so he can come home. I know he feels bad, the nurse told me so. And so did one of the rehab specialists at the nursing home he is going to. So, next has to come recovery.

As for hubby's family well, I'm not married to them. Why he hasn't severed ties I don't know but we have talked about that before. I told him I cannot and will not tell someone to cutoff ties to their family but I did tell him that if it were me, that's what I'd do. And then when I spoke to him on the phone yesterday, I told him that was the last straw, that I told his father to not ever call me again and that he had better make that crystal clear to him (if his father should bring it up) because I mean it. I don't go where I'm not wanted and that includes family members behaving satanic.

Things are hard right now being alone and all but amazingly I did alright today. I expect I could give it a go tomorrow too. 2020?? Damn bus, lousy year... 

*I will probably at least wait til tomorrow to call hubby...let him sit and think about this a while and what it did to me. I get to be mad for one more day.
« Last Edit: December 29, 2020, 02:13:52 PM by PrimeTimer » Logged

Husband has ESRD with Type I Diabetes -Insulin Dependent.
I was his carepartner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
MooseMom
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« Reply #55 on: December 29, 2020, 02:34:31 PM »

Yeah, Pea Tea, I can understand those feelings.  I felt angry, too, when I saw how damaged my kidneys were and that this would never be over.  I remember the first time I had to fill a medicine box with all of the pills that had been newly prescribed for me.  I was so angry I threw the whole thing against the wall, and pills went flying everywhere.

You deserve the time and opportunity to enjoy a day of just being angry.  Better that than to allow those feelings to just fester and eat away at your soul. 

Damn buses.
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
UkrainianTracksuit
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« Reply #56 on: December 29, 2020, 03:35:37 PM »

Aww man, Pea Tea. That feeling of being cheated and the anger sadly go hand in hand. I am so sorry that you have to experience it. For real. It sucks.

I felt so cheated that I never got to have a normal childhood, always poked and prodded by needles. Couldn't be "normal" like the other kids. Didn't experience the same things they did at the same times or in the same ways. I felt so cheated out of life. I still do in certain regards. In fact, if I start focusing on it right now, I can smash a glass against a wall. All of this is, sadly, super normal.

Follow MooseMom's advice to acknowledge these feelings and give them time. They will most definitely eat at your soul if you don't give them the attention they need.

What you are going through is a major life change and it has to be processed. You can't sweep it under the carpet and push on. Yes, sure, you have to push on, but you need to scream, rant, be angry to be okay sometimes. Please make sure you have a listening ear though. It really does help. In my experience, it causes even more frustration when someone doesn't acknowledge what you are sharing too. Take care, dear.

The good news is that out of this small circle you are in, you are still the winner of Normal Island!
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MooseMom
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« Reply #57 on: December 29, 2020, 05:17:24 PM »

Wait a minute...what are you doing about transportation since you no longer have a car?  You mentioned that you and hubby were going to try to get a new one once he got home, but now that he will be in rehab for a couple of weeks, are you stranded?  Will you be OK?
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
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« Reply #58 on: December 31, 2020, 11:04:14 AM »

Ok, now I am in tears. Hubby was transferred to a nursing home, all seemed to go okay with that. They were suppose to take him to dialysis this morning. I called and got no answer so hopefully that means that they did. Meanwhile, his father and sister called me....THEY want OUR social security numbers so THEY can sign hubby up for SS and me for Disability and to also see if we qualify for welfare! Is this not crossing the line?? Is this not NONE of THEIR business?? Is this outrageous or what?! I told them to back off and that it was not their place to be doing this stuff. I am so upset, I wonder if I should tell them I will call the police or authorities on them. This is just unbelievable. And now my phone is ringing non-stop...it is them again.
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Husband has ESRD with Type I Diabetes -Insulin Dependent.
I was his carepartner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
MooseMom
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« Reply #59 on: December 31, 2020, 11:19:19 AM »

OK, all sorts of red flags are flying here.

They want y'alls SS numbers?  Not only is this none of their business, but it also opens the door for them using this info fraudulently.  Why are they suddenly so interested?  Your history with them makes me very suspicious.

On the other hand, and forgive me if you've already answered this, but do either/both of you qualify for any financial assistance?  I seem to remember that you'd one time talked about this, but your circumstances have changed, right?

I'm really hesitant to ask this, knowing the strife between you and them, but do you think it is at all possible that they are finally trying to be of some help to you? 

I'm sorry this is happening.  I hate to see you upset as you already have so much on your plate.

Is there any further news about your hubby?   :cuddle; 
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
Simon Dog
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« Reply #60 on: December 31, 2020, 11:53:51 AM »

Social security numbers so THEY can sign hubby up for SS and me for Disability and to also see if we qualify for welfare! Is this not crossing the line?? Is this not NONE of THEIR business?? Is this outrageous or what?! I told them to back off and that it was not their place to be doing
Are you paying their bill in full on a private pay basis?  If not, this is just an attempt to secure payment for services.
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iolaire
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« Reply #61 on: December 31, 2020, 12:59:42 PM »

I'm sorry that you are getting family stress dumped on you in an already extremely stressful time. 

I'm pro signing up for assistance (when convenient) if it will make your life easier, but you should not be rushed into anything.
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Transplant July 2017 from out of state deceased donor, waited three weeks the creatine to fall into expected range, dialysis December 2013 - July 2017.

Well on dialysis I traveled a lot and posted about international trips in the Dialysis: Traveling Tips and Stories section.
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« Reply #62 on: December 31, 2020, 01:10:31 PM »

They claim they want to help us by signing us up for SS and Disability and Welfare. This is not their place to do that nor do they have the legal Power of Attorney to do that. We had asked them for financial help and while they did help out some, they do not want to going forward and said that we need to be on welfare. Now, I can certainly understand if they do not or cannot help us but they should just say so and leave it at that. There is no need for their lectures, their personal insults or to be telling us what to do with the "Almighty is Thou" tone they take with us. We've told them that. But yet they continue badgering us about SS/Disability/Welfare, etc. And we keep repeating that hubby will sign himself up for SS and if physically able to, he will continue working as much as allowed on SS. I do not qualify for disability...unless I want to get a lawyer and go to battle the next 4-5 years there is none for those with Pulmonary Sarcoidosis and Sarcoid Myositis. But that's irrevelant...it is NOT THEIR business as to whether or not me and hubby have signed up for anything at all or if we qualify and it is certainly NOT THEIR place to sign us up or to push us to do so. Just because someone helps you (in the past) does not give them permission to be all up in your business and harassing you about it. What makes it all worse is that we've already repeatedly told them this and they act like we didn't. They are very very pushy people, very intrusive in each other's lives and extremely rude with everybody, quite blatant so it's not just with us. But even after all these years of being married to hubby and seeing "these people in action", it still bothers me. I know I shouldn't let it, just blowing off steam again today. I know I need to ignore them and not get so worked up. My doctors would probably be ticked to know.
 
Something told me that with hubby being away they would try ambushing me over the phone and I was right. I  remember the first time I met them they had flown out to visit hubby and to meet me. While visiting, they literally went through every drawer, every closet, every box throwing out hubby's first deceased wife's things -without asking him for permission. Hubby was so upset by it that he just stood there looking at me and ready to break down. I had to tell them to stop and not touch anything because hubby and I had already discussed when/how he would get rid of her stuff and that we had planned to do it together. It was not their place to go through his house and decide what stays, what gets tossed. And that was my very day meeting them!

Anyway, we ask nothing from these people and yet every phone call is about "did you sign up for welfare, etc,etc yet and why not?" Now it's "here, we want to help, give us your social security numbers..." But let's say we did ask them for financial help...it still does not give them the right, legal or otherwise, to ask as us for our SS numbers and/or get in our personal business. If I help someone I help someone...I don't do it thinking that gives me the right to tell them what to do and ask them personal questions. It's not right. Going to have a hot cup of coffee now and perhaps some of those little lemon wafer cookies and chill out. I know the New Year won't be off to a good start but g-damn! I am going to make the most of any little positive thing and cherish it as I hope everyone on ihd will somehow be able to do the same.   

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Husband has ESRD with Type I Diabetes -Insulin Dependent.
I was his carepartner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
PrimeTimer
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« Reply #63 on: December 31, 2020, 01:11:53 PM »

I'm sorry that you are getting family stress dumped on you in an already extremely stressful time. 

I'm pro signing up for assistance (when convenient) if it will make your life easier, but you should not be rushed into anything.

Thank you, iolaire. I agree and glad you feel that way.
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Husband has ESRD with Type I Diabetes -Insulin Dependent.
I was his carepartner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
MooseMom
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« Reply #64 on: December 31, 2020, 01:38:24 PM »

Good grief, Pea Tea, I can't believe how incredibly intrusive these people are!  I mean, I knew there were bad feelings there, but I had no idea!  I can't believe that on the first day they met you, they'd go through your house like that.

I am sorry this conversation has resulted in bringing up bad memories, but thank you for explaining the background.  Of course you are right in demanding they keep their giant schnozes out of your business, no matter what their true intentions may be.  And of course iolaire is right in saying that you shouldn't be rushed into making any kind of financial decisions.

I hope you've had your nice cuppa and cookie and that you are feeling a bit less stressed. 

Oh, btw, when I first read your post, it did occur to me that their timing was surely not coincidental, and I think your word "ambushed" is absolutely spot on.  I'd thought the very same thing.
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
Simon Dog
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« Reply #65 on: December 31, 2020, 02:06:14 PM »

Ok, now I am in tears. Hubby was transferred to a nursing home, all seemed to go okay with that. They were suppose to take him to dialysis this morning. I called and got no answer so hopefully that means that they did. Meanwhile, his father and sister called me....THEY want OUR social security numbers so THEY can sign hubby up for SS and me for Disability and to also see if we qualify for welfare! Is this not crossing the line?? Is this not NONE of THEIR business?? Is this outrageous or what?! I told them to back off and that it was not their place to be doing this stuff. I am so upset, I wonder if I should tell them I will call the police or authorities on them. This is just unbelievable. And now my phone is ringing non-stop...it is them again.
Sorry, I missed the fact that the intrudees were his father and sister, not the nursing home.

If it was an offspring in PA, that would be a different story since the courts will seize assets of children to pay parent's nursing home bills (yes, really!!!).
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kristina
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« Reply #66 on: January 01, 2021, 03:37:30 AM »

They claim they want to help us by signing us up for SS and Disability and Welfare. This is not their place to do that nor do they have the legal Power of Attorney to do that. We had asked them for financial help and while they did help out some, they do not want to going forward and said that we need to be on welfare. Now, I can certainly understand if they do not or cannot help us but they should just say so and leave it at that. There is no need for their lectures, their personal insults or to be telling us what to do with the "Almighty is Thou" tone they take with us. We've told them that. But yet they continue badgering us about SS/Disability/Welfare, etc. And we keep repeating that hubby will sign himself up for SS and if physically able to, he will continue working as much as allowed on SS. I do not qualify for disability...unless I want to get a lawyer and go to battle the next 4-5 years there is none for those with Pulmonary Sarcoidosis and Sarcoid Myositis. But that's irrevelant...it is NOT THEIR business as to whether or not me and hubby have signed up for anything at all or if we qualify and it is certainly NOT THEIR place to sign us up or to push us to do so. Just because someone helps you (in the past) does not give them permission to be all up in your business and harassing you about it. What makes it all worse is that we've already repeatedly told them this and they act like we didn't. They are very very pushy people, very intrusive in each other's lives and extremely rude with everybody, quite blatant so it's not just with us. But even after all these years of being married to hubby and seeing "these people in action", it still bothers me. I know I shouldn't let it, just blowing off steam again today. I know I need to ignore them and not get so worked up. My doctors would probably be ticked to know.
 
Something told me that with hubby being away they would try ambushing me over the phone and I was right. I  remember the first time I met them they had flown out to visit hubby and to meet me. While visiting, they literally went through every drawer, every closet, every box throwing out hubby's first deceased wife's things -without asking him for permission. Hubby was so upset by it that he just stood there looking at me and ready to break down. I had to tell them to stop and not touch anything because hubby and I had already discussed when/how he would get rid of her stuff and that we had planned to do it together. It was not their place to go through his house and decide what stays, what gets tossed. And that was my very day meeting them!

Anyway, we ask nothing from these people and yet every phone call is about "did you sign up for welfare, etc,etc yet and why not?" Now it's "here, we want to help, give us your social security numbers..." But let's say we did ask them for financial help...it still does not give them the right, legal or otherwise, to ask as us for our SS numbers and/or get in our personal business. If I help someone I help someone...I don't do it thinking that gives me the right to tell them what to do and ask them personal questions. It's not right. Going to have a hot cup of coffee now and perhaps some of those little lemon wafer cookies and chill out. I know the New Year won't be off to a good start but g-damn! I am going to make the most of any little positive thing and cherish it as I hope everyone on ihd will somehow be able to do the same.

Hello PT,
I feel very sorry for you and your struggle to defend yourself during such terrible mental surprise-attacks coming from your husband’s family, whilst you are alone at home and your husband is being treated in hospital. I can well imagine how very frightening that situation must be for you and feel very sorry for you.
Did his family ever reveal their reasoning behind this strange behaviour they show towards you? Do they have a history of harassing people at their most vulnerable moment? Where do these people come from?  Is there a history?
The only defence that comes into mind is to try and find an authority/Charity or solicitor specialising in assisting victims of severe intrusion and mental harassment. You might have to pay a bit of money to the solicitor to write a very “sharp letter” to this family, but might it not be a “good investment”, for peace of mind, so to speak?
I wish you both a much better 2021 with hopefully a bit of good luck and best wishes from Kristina. :grouphug;
« Last Edit: January 01, 2021, 03:38:59 AM by kristina » Logged

Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
PrimeTimer
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« Reply #67 on: January 08, 2021, 09:31:15 PM »

Note to self: Keep a bag packed for the hospital. Hubby went to the hospital with just the clothes on his back and nothing else. No spare clothes, no necessities, no bag. With the help of my brother (thank god) I was able to order some cheap t-shirts, boxers and sweatpants and had them shipped to the nursing home where hubby is rehabbing. They have provided him with other necessities. This seemed to make hubby's day, he sounded more awake over the phone. His PT is rough but going well and they take him to his dialysis like usual (Fresenius clinic, not a hospital). So he's happy to see his chair mates. I'm glad he gets to see his friends. Since arriving from the hospital he has to complete 14 days of quarantine at the nursing home before being allowed into the common areas or gym. For now the Physical Therapist comes to his room. Hubby has been tested twice so far for Covid and I expect that they will continue testing him. They say his surgical site (amputated big toe) looks good and the wound vac may be removed in the next day or two. He has an appointment with a doctor but doesn't know when and doesn't know if the doctor will be coming to the nursing home or if they will be driving him to the doctor's office. And that's the bad part...getting info or anything for that matter at the nursing home is like pulling teeth and slow going. That's sad. He's there only temporarily but what about those who have to actually live there? You hear or read stories about nursing homes and it makes me shudder. No one is abusing him but he did tell me they don't always come when he beeps for a nurse and when they do come and then have to leave but say they will be right back, they aren't. They don't come back. I imagine that is very frustrating if not a little degrading for a patient.

I've been calling hubby every day, sometimes twice or three times. Very lonely here at home without him. Thank goodness for our 2 cats! I know they don't really understand me but I like to think that they are listening. They're good listeners. As for myself, breathing has not been easy these past few days. Even with the oxygen. But I am dealing with seasonal allergies right now so this was to be expected. Sort of. Following my doctor's instructions prior to allergy season, I've increased the Prednisone to 40 to get some relief. Dang! Just when I had finally tapered down to 10, had to go back up to 40. But it's worth it. When you're on oxygen and a lot of medications you start to learn that sometimes the pros of benefits outweigh the cons of side effects. Sometimes. Right now, at least for me they do. When hubby gets home I will return to the Rheumatologist and Pulmonologist to start another form of treatment. Humira. It's going to be scary but at this point, I welcome any possibility of any drug that may help. I cannot see myself getting worse off. Perhaps I ought to "pack a bag" for myself. Hubby wouldn't have a clue what to send me.
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Husband has ESRD with Type I Diabetes -Insulin Dependent.
I was his carepartner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
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« Reply #68 on: January 09, 2021, 03:45:20 AM »

O PT, I can’t believe the stress you must be under.  :cuddle;
And I actually agree to pack a bag for yourself too, just to avoid poss extra pressure later on. And the 40 mg Prednison won’t be helping your feelings, but it’s good to hear hubby is doing well.


I’m sending all the positive, and healing vibes your way.


Lots of love, strength and healing, Cas





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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
       still on waitinglist, still ok I think
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