sunny21609
08-08-2009, 07:07 PM
my husband in in late 40s and received a kidney, my kidney, in 2004 after 8 months on dialysis. The disease has caused great depression, beyond anything I can type right now. we have insurance but as you can imagine, hoops and loops we must jump through is overwhelming. We also make too much for state aid on my piddly income. Go figure. The expense of his daily medications has put him into a terrible downward spiral and a week ago he told me he has given up and stopped taking his meds, all of his meds. He'd said this before we were always able to get the meds one way or another. He is in counseling and revealed this to his counselor as well. He is now at the point where he is telling me he doesnt feel 'good' and wants to tell our kids he is dying. (they're 18, 13 and 12). He is adamant about this, although threw me a mind boggler last night, blaming me that had I acted differently when he first told me his plans he would have acted differntly (???). Its always my fault, I blame that on the toxins in the body during ESRF and after transplant on the prednisone. I'm scared and confused. He is refusing help saying he will not beg for his life. What should I be expecdting. He told me he doesnt want the kids findiing him dead, just me. What do I expect, what will happen?
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writeleft
08-08-2009, 07:59 PM
Hello Sunny, and welcome to the HealthBoards.
I am so sorry to hear about your husbands decision to stop his medications. Of course, this is a very dangerous situation for him, and unbearable for you and your children.
My first suggestion is to contact his nephrologist, and discuss this with him/her. Even starting the medications back up could be dangerous if unsupervised.
May I ask a few questions?
Do you hold a medical power of attorney for him?
How long has it been since he stopped taking meds?
Is he capable, in your opinion, to make responsible choices about his medical care?
Is he suicidal?
I will be watching for you, and I am very concerned for you and your familly...Hugs and love... WL
I am so sorry to hear about your husbands decision to stop his medications. Of course, this is a very dangerous situation for him, and unbearable for you and your children.
My first suggestion is to contact his nephrologist, and discuss this with him/her. Even starting the medications back up could be dangerous if unsupervised.
May I ask a few questions?
Do you hold a medical power of attorney for him?
How long has it been since he stopped taking meds?
Is he capable, in your opinion, to make responsible choices about his medical care?
Is he suicidal?
I will be watching for you, and I am very concerned for you and your familly...Hugs and love... WL
writeleft
08-08-2009, 08:44 PM
Sunny,
I had to run out and get the kids, but I wanted to offer you a few more words of support...There are many knowledgeable and well meaning people on this board, that I am sure will offer you much more than I can, but each of us have our own desire to help, any way we can.
I also am fighting the effects of stage 4 kidney disease, and will soon be starting dialysis. I know how important the medications are, particularly following transplant (which is also in my future). I am also 48, and have teenage children. Depression is very easy to fall into, and difficult to overcome, with life threatening illness. I am no stranger to the added burden depression has on a very sick person.
His choice to put the blame on you is unfortunate, but likely more of a coping skill, than an attempt to make you feel terrible. It might be helpful to look at his actions as being part of the illness, rather than just him. I am so sorry for what this is doing to you, and your kids.
The best to you, and your family
I had to run out and get the kids, but I wanted to offer you a few more words of support...There are many knowledgeable and well meaning people on this board, that I am sure will offer you much more than I can, but each of us have our own desire to help, any way we can.
I also am fighting the effects of stage 4 kidney disease, and will soon be starting dialysis. I know how important the medications are, particularly following transplant (which is also in my future). I am also 48, and have teenage children. Depression is very easy to fall into, and difficult to overcome, with life threatening illness. I am no stranger to the added burden depression has on a very sick person.
His choice to put the blame on you is unfortunate, but likely more of a coping skill, than an attempt to make you feel terrible. It might be helpful to look at his actions as being part of the illness, rather than just him. I am so sorry for what this is doing to you, and your kids.
The best to you, and your family
Franksshow
08-08-2009, 09:15 PM
Dear Sunny,
I am so sorry-the road you are on will be one of the hardest you will ever travel-My Husband has refused help and is waiting for a VA appointment-And I for the past 6 weeks have had to watch him Die-Tonight I vented on the board-I have durable power of attorney and he has a DNR. I could over ride him if he was to become unconsious,but that would serve only Me-And there are times I would love to be selfish-The diffrence between our husbands is age-My hubby just turned 75. It sounds like your husband may be depressed. My husband takes things out on me to and can be very creul at times-I truly believe it is all the toxins in his body cause in the next moment he tells me how much he loves me-It still hurts all the same. I would hope for your family's sake he will look at the entire picture and seek some kind of help-and then if he truly wants it to end-You all can prepare for the journey he will be taking.
Karen
I am so sorry-the road you are on will be one of the hardest you will ever travel-My Husband has refused help and is waiting for a VA appointment-And I for the past 6 weeks have had to watch him Die-Tonight I vented on the board-I have durable power of attorney and he has a DNR. I could over ride him if he was to become unconsious,but that would serve only Me-And there are times I would love to be selfish-The diffrence between our husbands is age-My hubby just turned 75. It sounds like your husband may be depressed. My husband takes things out on me to and can be very creul at times-I truly believe it is all the toxins in his body cause in the next moment he tells me how much he loves me-It still hurts all the same. I would hope for your family's sake he will look at the entire picture and seek some kind of help-and then if he truly wants it to end-You all can prepare for the journey he will be taking.
Karen
sunny21609
08-08-2009, 10:29 PM
Thank you for your support, everyone. I do not have medical POA. This is his choice. At first I didn't take it seriously, its been said before and his words and actions have been abusive, but yes, I blame the disease; the toxins and now the meds and the depression. I was also in counselling but he's not honest there and I truly believe he is just internally an unhappy person...and yes, I take the brundt of it all along w/our 18 yr old son...who looks exactly like me. Go figure.
I had contacted his doctor in the past. Hands are tied. I think its been a week w/o any of his meds but he has it so I can't monitor any of it then holds that against me as well. I'm not kidding, if he weren't ill....found out a month after our marriage 22 yrs ago, I would be long gone. Now I am stuck, 3 children, one entering college in 3 wks and so on and so forth. I am not looking for sympathy, not at all...but I buried my mom in Feb after a year of caring for her during her devastating illness. I needed some time, had a vacation from work, to heal, and he was jealous of the time I cared for my mom, made life miserable and is still jealous I grieve for her. Honestly, he has become meaner and meaner w/every passing day....but I can't bear seeing my kids suffering through watching another person they love die. He has cut off all communication w/his family, allowing a small visit with his own 83 yr old mother the other day but made me feel guilty for having his mother and sister here (they came from out of state to visit other family an hour from our house). I have to be careful what i say, he claims his family is very controlling and like I said, he basically cut off all communication but I told her as much as I could without breaking a promise to him that I would not... Right now I am more angry than sad. Angry he is putting me through this at the beginning of anther school year (last years began w/my mom going down hill), doing this to our children-the roller coaster ride, and crap, I gave him the kidney because I loved him...not because I expectd him to go through surgery and with my kidney go back to work, make a million dollars and support me. All that is thrown back in my face over and over again. I'm angry. He also was angry w/me for not asking help in dealing with my emotions OR researching what he is going to go through. He keeps telling me he should be dead in 4 weeks time. You can all only imagine how I am walking around, not sleeping at all and a mess myself. I can't do or say anything right. What do I expect next? Sorry so long....guess I did need to vent it all out.
I had contacted his doctor in the past. Hands are tied. I think its been a week w/o any of his meds but he has it so I can't monitor any of it then holds that against me as well. I'm not kidding, if he weren't ill....found out a month after our marriage 22 yrs ago, I would be long gone. Now I am stuck, 3 children, one entering college in 3 wks and so on and so forth. I am not looking for sympathy, not at all...but I buried my mom in Feb after a year of caring for her during her devastating illness. I needed some time, had a vacation from work, to heal, and he was jealous of the time I cared for my mom, made life miserable and is still jealous I grieve for her. Honestly, he has become meaner and meaner w/every passing day....but I can't bear seeing my kids suffering through watching another person they love die. He has cut off all communication w/his family, allowing a small visit with his own 83 yr old mother the other day but made me feel guilty for having his mother and sister here (they came from out of state to visit other family an hour from our house). I have to be careful what i say, he claims his family is very controlling and like I said, he basically cut off all communication but I told her as much as I could without breaking a promise to him that I would not... Right now I am more angry than sad. Angry he is putting me through this at the beginning of anther school year (last years began w/my mom going down hill), doing this to our children-the roller coaster ride, and crap, I gave him the kidney because I loved him...not because I expectd him to go through surgery and with my kidney go back to work, make a million dollars and support me. All that is thrown back in my face over and over again. I'm angry. He also was angry w/me for not asking help in dealing with my emotions OR researching what he is going to go through. He keeps telling me he should be dead in 4 weeks time. You can all only imagine how I am walking around, not sleeping at all and a mess myself. I can't do or say anything right. What do I expect next? Sorry so long....guess I did need to vent it all out.
Franksshow
08-08-2009, 10:49 PM
I can only tell you my experience with this diases-If he did go of his meds it may be diffrent cause he had a transplant- to date the only truly noticble signs my husband has shown is complete exshation-Sleeps all the time-that went on for about a month-Sever constipation as well-Newest symptoms are the gray skin tone-cold very cold hands and feet-Stomach pains with diarea one moment then back to constipation-His blood pressure goes up his blood pressure comes way down. One moment he is happy go lucky the next he is a jerk. And now he looks as tho he has a glassy skin with white dust-uremic frost is what they call it. And I sit and wait-Awful waiting for death to come-Awful wantting it to hurry,Thinking I am going nuts so afraid to find him gone but so expecting it-All in all tho he is in very little pain for that I am very gratefull for-Hope this helps
Karen
Karen
sunny21609
08-09-2009, 01:22 AM
I can only tell you my experience with this diases-If he did go of his meds it may be diffrent cause he had a transplant- to date the only truly noticble signs my husband has shown is complete exshation-Sleeps all the time-that went on for about a month-Sever constipation as well-Newest symptoms are the gray skin tone-cold very cold hands and feet-Stomach pains with diarea one moment then back to constipation-His blood pressure goes up his blood pressure comes way down. One moment he is happy go lucky the next he is a jerk. And now he looks as tho he has a glassy skin with white dust-uremic frost is what they call it. And I sit and wait-Awful waiting for death to come-Awful wantting it to hurry,Thinking I am going nuts so afraid to find him gone but so expecting it-All in all tho he is in very little pain for that I am very gratefull for-Hope this helps
Karen
Karen, I'm soo sorry...It brings up alot of pain still fresh from sitting at my mom's bedside. How long has this been going on for?
Karen
Karen, I'm soo sorry...It brings up alot of pain still fresh from sitting at my mom's bedside. How long has this been going on for?
writeleft
08-09-2009, 01:49 AM
Sunny,
This thread is about you, and supporting you, as you endure this heartbreaking experience. To think this all began so many years ago, and where it has brought you, and your children! Major illness can skew our thoughts, our outlook, and require strength of character to live with. It can be daunting. It does not however, give us the right to cause emotional pain on our loved ones, to overlook the needs of the family, and the children in particular. In the case of many very ill people, it gives them a totally different vision of life''s most important things...it makes them more humble, more thankful, and very aware of the impact they have on their loved ones. This is not the path your husband has found, or chosen. That is a great loss, to himself and to your family. I offer you my support, if words could possibly help a little.
This thread is about you, and supporting you, as you endure this heartbreaking experience. To think this all began so many years ago, and where it has brought you, and your children! Major illness can skew our thoughts, our outlook, and require strength of character to live with. It can be daunting. It does not however, give us the right to cause emotional pain on our loved ones, to overlook the needs of the family, and the children in particular. In the case of many very ill people, it gives them a totally different vision of life''s most important things...it makes them more humble, more thankful, and very aware of the impact they have on their loved ones. This is not the path your husband has found, or chosen. That is a great loss, to himself and to your family. I offer you my support, if words could possibly help a little.
Coravh
08-09-2009, 07:55 AM
Hi Sunny.
There isn't much I can add except that I am thinking of you too. You are going through an awful time right now and I hope things improve. You husbands depression may very likely be caused or exasperated by the prednisone and other meds that he is on. Prograf can cause depression as well. The first several years that I was on it I was also on an antidepressant (Welbutrin) and that helped considerably. I'm afraid there is not much you can do unless he wants to help himself. I'm mad at him too for potentially throwing away the wonderful gift you gave him - may folks do not have spouses or other family who are willing to donate. You have given him the gift of life and he does not seem to appreciate it in the least.
Know that we all feel for you and that you are free to vent here any time. I hope things go better for you. Take care and I hope you and your family do well.
There isn't much I can add except that I am thinking of you too. You are going through an awful time right now and I hope things improve. You husbands depression may very likely be caused or exasperated by the prednisone and other meds that he is on. Prograf can cause depression as well. The first several years that I was on it I was also on an antidepressant (Welbutrin) and that helped considerably. I'm afraid there is not much you can do unless he wants to help himself. I'm mad at him too for potentially throwing away the wonderful gift you gave him - may folks do not have spouses or other family who are willing to donate. You have given him the gift of life and he does not seem to appreciate it in the least.
Know that we all feel for you and that you are free to vent here any time. I hope things go better for you. Take care and I hope you and your family do well.
Franksshow
08-09-2009, 11:23 AM
Karen, I'm soo sorry...It brings up alot of pain still fresh from sitting at my mom's bedside. How long has this been going on for?
It all started June 10th of this year-And everything has gone so quick-Prior to this he had one kidney removed due to cancer 3 years ago-At that time the specialist told us we were on borrowed time as the remaining kidney was at 30%-No special diets or anything was instructed-So my hubby lived quit well for the past 3 years then he went to ER VA-where they discovered he had Hyperkalemia(to much pottasium) and started new meds-June 25th ended up in the hospital-2 days I was unsure if he was going to make it-He got better for about a week-saw Doc on july 1st and his BP was elevated-More new meds-Back 2 weeks latter blood work showed 2.4 creat level. A few days later nurse over the phone told us he had chronic renal failure-We have been going down hill since then-His only goal is to be around to make the wensday appointment-each day brings a new symptom-Today it is a headache.
KAren
It all started June 10th of this year-And everything has gone so quick-Prior to this he had one kidney removed due to cancer 3 years ago-At that time the specialist told us we were on borrowed time as the remaining kidney was at 30%-No special diets or anything was instructed-So my hubby lived quit well for the past 3 years then he went to ER VA-where they discovered he had Hyperkalemia(to much pottasium) and started new meds-June 25th ended up in the hospital-2 days I was unsure if he was going to make it-He got better for about a week-saw Doc on july 1st and his BP was elevated-More new meds-Back 2 weeks latter blood work showed 2.4 creat level. A few days later nurse over the phone told us he had chronic renal failure-We have been going down hill since then-His only goal is to be around to make the wensday appointment-each day brings a new symptom-Today it is a headache.
KAren
sunny21609
08-09-2009, 01:03 PM
It all started June 10th of this year-And everything has gone so quick-Prior to this he had one kidney removed due to cancer 3 years ago-At that time the specialist told us we were on borrowed time as the remaining kidney was at 30%-No special diets or anything was instructed-So my hubby lived quit well for the past 3 years then he went to ER VA-where they discovered he had Hyperkalemia(to much pottasium) and started new meds-June 25th ended up in the hospital-2 days I was unsure if he was going to make it-He got better for about a week-saw Doc on july 1st and his BP was elevated-More new meds-Back 2 weeks latter blood work showed 2.4 creat level. A few days later nurse over the phone told us he had chronic renal failure-We have been going down hill since then-His only goal is to be around to make the wensday appointment-each day brings a new symptom-Today it is a headache.
KAren
Again Karen, I am so sorry. So there isn't anything that can be done? I only have a quick minute here but I'd like to stay (on the board) as it seems like it could be a great place for support...and I think I need it.
I'm on my way up to the ER. woke up this morning to a note telling me he had our 18 yr old drive him there to "get fixed". He'd also sent me an email telling me drs report no damage to his kidney or anything else. I asked him if he told anyone about his thoughts of suicide. He replied no. The email apologizes for putting me through this but I'm still so angry. This is a total play on my emotions, disease or not. I feel stuck, if I leave I'm a witch if I stay I'm stupid. Anyway, he has meds til tomorrow and a social worker will call tomorrow. Sorry to say, this is a repeat performance. Hope all is well today with everyone. My youngest is on stage today at 2pm and I have family coming to watch her perform on top of all of this....I shall wear the painted smile today. Peace and thank you.
KAren
Again Karen, I am so sorry. So there isn't anything that can be done? I only have a quick minute here but I'd like to stay (on the board) as it seems like it could be a great place for support...and I think I need it.
I'm on my way up to the ER. woke up this morning to a note telling me he had our 18 yr old drive him there to "get fixed". He'd also sent me an email telling me drs report no damage to his kidney or anything else. I asked him if he told anyone about his thoughts of suicide. He replied no. The email apologizes for putting me through this but I'm still so angry. This is a total play on my emotions, disease or not. I feel stuck, if I leave I'm a witch if I stay I'm stupid. Anyway, he has meds til tomorrow and a social worker will call tomorrow. Sorry to say, this is a repeat performance. Hope all is well today with everyone. My youngest is on stage today at 2pm and I have family coming to watch her perform on top of all of this....I shall wear the painted smile today. Peace and thank you.
Franksshow
08-09-2009, 01:30 PM
I can so relate to you I hope no matter what you stay on the post-My husband was very controling when we were first married and before all this to I thought about leaving. Then he got Ill-I do love him but he took away so much from me-Mind you I am 45 years old-3 children that are not welcome here without a fight between my hubby and I-Then I lost my job no money and him with cancer 3 years ago-Any chance I had of leaving ended then and there-he controled all the money and had a way of making me feel it was all my fault-Then he quite drinking and he bacame nicer-But his own kids call him an ***. Today I think we are at the point of no return he has frost on his neck-his body is trying to secrete the waste that has built up in his body-And he refuses to go to ther-So I do not believe it will be very long now-So I will be by his side and love him till the end.
KAren
KAren
writeleft
08-09-2009, 03:56 PM
Sunny,
Our hearts are with you, and we are here to listen, encourage, and share with you. I hope your daughter's performance will bring a smile to your face and take you away from your reality, even for a short time. Hugs...
Our hearts are with you, and we are here to listen, encourage, and share with you. I hope your daughter's performance will bring a smile to your face and take you away from your reality, even for a short time. Hugs...