worried,

pattynonews
pattynonews Member Posts: 176
edited March 2014 in Caregivers #1
I just can't understand how Jack crashes so fast, he is having a good day and then all of a sudden he gets lightheaded and his blood pressure drops, his sister is a nurse and she said he is having what they call Fasal Vogal Episodes ( fainting spells when his pressure drops, ) and I read up on it and it happen when a patient has a bowel movement ( which happen with Jack ) also if they get upset news, which Jack got both so Im trying to figure which it is from but I do know this is the second time it has happen when he had a bowel movemment so Im leaning that way, his pressure has been running low, it always has been low, but now it is like 96/62 is his running average, and he has been staying hydrated so Im at a lost

Also Im at a lost do I keep things from Jack so he does not get upset, but then when he finds out and he knows I knew he gets upset, He thinks because he has cancer we are keeping things from him because we think he can handel it, The news I told him is that I have to take his dad to get a CT Scan because his xray came back with something in his lungs, So now the family is all thinking cancer, I have to take his dad next week , So im at ends of what to do and Im worried why Jack goes up and own so fast,

Patty

Comments

  • SonSon
    SonSon Member Posts: 174
    Fainting Spells
    The fainting spells you are talking about are the result of over stimulation of the vagus nerve which can often happen when over straining during a bowel movement. It can also happen in some individuals when drinking very cold drinks or it can happen if some malfunction in their abdomen causes something (muscle, stomach, tumors) to push up against the diaphragm (that muscle that makes you breath).
    The fainting spells are not normal nor is the radical drop in blood pressure. INSIST that something is not right and that something needs to be done about it.
    Now, on the other part of your message....his dad.... so, up until now you are chopped liver but now that dad is not well suddenly YOU (not his daughter or other family member) is responsible to take care of HIM, too? I smell a skunk in the woodpile.
    Fatima
  • pattynonews
    pattynonews Member Posts: 176
    SonSon said:

    Fainting Spells
    The fainting spells you are talking about are the result of over stimulation of the vagus nerve which can often happen when over straining during a bowel movement. It can also happen in some individuals when drinking very cold drinks or it can happen if some malfunction in their abdomen causes something (muscle, stomach, tumors) to push up against the diaphragm (that muscle that makes you breath).
    The fainting spells are not normal nor is the radical drop in blood pressure. INSIST that something is not right and that something needs to be done about it.
    Now, on the other part of your message....his dad.... so, up until now you are chopped liver but now that dad is not well suddenly YOU (not his daughter or other family member) is responsible to take care of HIM, too? I smell a skunk in the woodpile.
    Fatima

    keep a diary
    I have discuss this with Jack's doctor on Monday they advised me to keep a diary of his symptoms this week and they would discuss on Monday at his chemo appointment, He only had one episode this week, He is feeling better this morning, and today we go to find out what is going on with his trachea,

    As for his father, well that is another thing now, See we moved in to his house because it did not worl out with his other caretaker, and he is 85 years we could not leave him in the big house alone, plus we needed more room for all of Jack medical equipment and he wanted to be close to his dad ( his mom passed away last christmas ) so it has been hard and now Jack sick and possible the dad, I don't mind being over here, it just gets a little much taking care of both of them and if something comes back negative on his CT Scan Im really going to have my hands full. He is pretty much self effient but he is 85, I have to cook his meals and do his laundry and just keep him company, now if he gets sick, oh boy, Yea Im not legally married to Jack, and they are coming around, his ex really bashed me, so it is taken time for them to see the whole picture I guess is a nice way of putting it, I use to let it get to me, but Im not here to please them or to be judge by them Im here for Jack, So things seem to be ok, I do worry sometimes if something happens to Jack where will I be, but I can waste what precious time I have with Jack on the what if's

    I did tell them that I want him put on that program of home health care provider, where his insurance company will pay me to provide his meals what ever he needs, since it was the family decision for me to quit my job and stay home with Jack and his dad, ( jack's insurances companys pays be 29 hours week to be his provider, ) and trust me I here for 24/7 but hey it is a little supplement, and with Jack's check, it gives us the resources for me to stay home and take care of him.

    Thats why my day starts at 530 cuz that is when Jack gets up but his dad gets up at 12 so Im cooking dinner sometimes at 800 at night, it makes it along day, Now if I could just find some me time, that is what is nice about coming here, it is my me time
  • Artin2010
    Artin2010 Member Posts: 17

    keep a diary
    I have discuss this with Jack's doctor on Monday they advised me to keep a diary of his symptoms this week and they would discuss on Monday at his chemo appointment, He only had one episode this week, He is feeling better this morning, and today we go to find out what is going on with his trachea,

    As for his father, well that is another thing now, See we moved in to his house because it did not worl out with his other caretaker, and he is 85 years we could not leave him in the big house alone, plus we needed more room for all of Jack medical equipment and he wanted to be close to his dad ( his mom passed away last christmas ) so it has been hard and now Jack sick and possible the dad, I don't mind being over here, it just gets a little much taking care of both of them and if something comes back negative on his CT Scan Im really going to have my hands full. He is pretty much self effient but he is 85, I have to cook his meals and do his laundry and just keep him company, now if he gets sick, oh boy, Yea Im not legally married to Jack, and they are coming around, his ex really bashed me, so it is taken time for them to see the whole picture I guess is a nice way of putting it, I use to let it get to me, but Im not here to please them or to be judge by them Im here for Jack, So things seem to be ok, I do worry sometimes if something happens to Jack where will I be, but I can waste what precious time I have with Jack on the what if's

    I did tell them that I want him put on that program of home health care provider, where his insurance company will pay me to provide his meals what ever he needs, since it was the family decision for me to quit my job and stay home with Jack and his dad, ( jack's insurances companys pays be 29 hours week to be his provider, ) and trust me I here for 24/7 but hey it is a little supplement, and with Jack's check, it gives us the resources for me to stay home and take care of him.

    Thats why my day starts at 530 cuz that is when Jack gets up but his dad gets up at 12 so Im cooking dinner sometimes at 800 at night, it makes it along day, Now if I could just find some me time, that is what is nice about coming here, it is my me time

    Insurance paying caregiver
    I admire your courage and tennacity! I only have one question, How did you all go about getting the insurance company to start paying for caregiving services. I want to find out if I can get my wife money for looking after my dad? My dad has home healthcare and his insurance is Medicare with BCBS supplimental coverage.
    Hang in there, sounds like you have your hand full now.
    Art
  • grandmafay
    grandmafay Member Posts: 1,633 Member
    Hang in There
    I just wanted to add my hang in there. I think I've said before that my 90 year old mother lives with us. She is in fairly good shape physically but has some dementia. She takes care of most of her physical needs but I do the cooking, cleaning, laundry, etc. Even if my husband doesn't feel like eating, I have to cook three meals a day. That's probably good because I probably eat better. Some days it gets interesting though. For awhile Mom was having problems with lightheadedness as was my husband. When we went places I wasn't sure who to watch the closest. Then last weekend we took our maiden voyage in the motoerhome with me driving. Both Mom and my husband got sick on the way. I swear, at times, they were fighting over the barf bowl. Since I had never driven anything that big before, I just kept my mind on the driving. We got there fine, met up with our sons and families, and had a good time.

    Please try to make some time for yourself. Ask some of those family members to relieve you for a couple of hours a week. I try to get a massage once every two weeks. I have even found that going grocery shopping by myself is a break. I know we hear from everybody that we need to take care of ourselves, and get tired of hearing it. Yet it's true. If we get down, who is going to take over? If you are concerned about finances, talk with Jack. I know that's not easy because it is an admission that we don't really know where this disease is going. My husband have had some of those difficult talks, and we will have to have more of them. Interestingly, he seems to welcome them because he is worried about me, too. We have lived in this hoouse for over 30 years. At one time ww heated with wood. Our heating and cooling was spotty at best. Last week we had central heating and air put in. It was important to him. Next week a contractor is going to start remodeling one of our bathrooms. He wants to make things as comfortable as he can for me. He feels good about that. Anyway, I hope some of this helps. I don't have any real answers just like you don't. We just keep moving forward and hoping we're doing things right. We have two wonderful sons and when people have asked me how we raised such good kids, I also say we didn't do everything right, but we did the best we could at the time. And they never doubted that we loved them. I think the same is true here. Fay
    PS: Boy, did I get wordy! Sorry
  • pattynonews
    pattynonews Member Posts: 176
    Artin2010 said:

    Insurance paying caregiver
    I admire your courage and tennacity! I only have one question, How did you all go about getting the insurance company to start paying for caregiving services. I want to find out if I can get my wife money for looking after my dad? My dad has home healthcare and his insurance is Medicare with BCBS supplimental coverage.
    Hang in there, sounds like you have your hand full now.
    Art

    insurance paying caregivers,
    It is called being there care provider, he has medicaid and Im pretty sure all the insurance company have it, Just call your dad's incurance company and tell them your dad needs home health care, he need help bathing, preparing meals and laundry and light housekeeping, and they will come out an assess your dad and depending on the evaulation that is the number of hours I believe 29 in the max, and then they pay you mim wage, Then once your approved they will ask who would you like her provider to be, and they will also ask you what home care agency you want to use, then the home health agency will actually hire you, So that is why I can be his dad provider too, and we are not legally married, and the home health care says it is always better someone close to the family be there provider, I just don;t think they let spuses be providrs, ( which I think is crazy they know the patient better than anyone, ) At least it supplements Jack check and it allow me to stay home and be with Jack and take care of him, If you need any other information just let me know

    Patty
  • newbride
    newbride Member Posts: 142

    insurance paying caregivers,
    It is called being there care provider, he has medicaid and Im pretty sure all the insurance company have it, Just call your dad's incurance company and tell them your dad needs home health care, he need help bathing, preparing meals and laundry and light housekeeping, and they will come out an assess your dad and depending on the evaulation that is the number of hours I believe 29 in the max, and then they pay you mim wage, Then once your approved they will ask who would you like her provider to be, and they will also ask you what home care agency you want to use, then the home health agency will actually hire you, So that is why I can be his dad provider too, and we are not legally married, and the home health care says it is always better someone close to the family be there provider, I just don;t think they let spuses be providrs, ( which I think is crazy they know the patient better than anyone, ) At least it supplements Jack check and it allow me to stay home and be with Jack and take care of him, If you need any other information just let me know

    Patty

    Always a loop hole in the system
    I think you not being legally married to Jack is the key. I myself have never heard of a relative being paid for being a care giver. My best friend's mother had cancer several years ago and the insurance would only provide a home health care aid through a service. My friend was even a nurse but if she did not work for an agency she could not be considered the home aide (with a fee).

    I doubt if you were married or a blood relative that you would get the same response from the insurance company but then again since it's Medicaid it's probably different than private insurance
  • newbride
    newbride Member Posts: 142

    insurance paying caregivers,
    It is called being there care provider, he has medicaid and Im pretty sure all the insurance company have it, Just call your dad's incurance company and tell them your dad needs home health care, he need help bathing, preparing meals and laundry and light housekeeping, and they will come out an assess your dad and depending on the evaulation that is the number of hours I believe 29 in the max, and then they pay you mim wage, Then once your approved they will ask who would you like her provider to be, and they will also ask you what home care agency you want to use, then the home health agency will actually hire you, So that is why I can be his dad provider too, and we are not legally married, and the home health care says it is always better someone close to the family be there provider, I just don;t think they let spuses be providrs, ( which I think is crazy they know the patient better than anyone, ) At least it supplements Jack check and it allow me to stay home and be with Jack and take care of him, If you need any other information just let me know

    Patty

    Always a loop hole in the system
    I think you not being legally married to Jack is the key. I myself have never heard of a relative being paid for being a care giver. My best friend's mother had cancer several years ago and the insurance would only provide a home health care aid through a service. My friend was even a nurse but if she did not work for an agency she could not be considered the home aide (with a fee).

    I doubt if you were married or a blood relative that you would get the same response from the insurance company but then again since it's Medicaid it's probably different than private insurance
  • pattynonews
    pattynonews Member Posts: 176
    newbride said:

    Always a loop hole in the system
    I think you not being legally married to Jack is the key. I myself have never heard of a relative being paid for being a care giver. My best friend's mother had cancer several years ago and the insurance would only provide a home health care aid through a service. My friend was even a nurse but if she did not work for an agency she could not be considered the home aide (with a fee).

    I doubt if you were married or a blood relative that you would get the same response from the insurance company but then again since it's Medicaid it's probably different than private insurance

    loop holes in insurance
    Yea I don't believe they let blood relatives which is totally crazy, I guess they feel it you are a blood relative it is your duty who knows with insurance companies, I am a medical assistant and the agency hired me so if I want I can pick up another patient if I wanted to, that is why I can pick up Jack's dad, the insurance company is the one who brought it to me, I never thought about it, I was just taking care of Jack and they said it makes the patient feel more comfortable when they know the care giver, so it has worked for us, I had to quit work to stay home with Jack, and I can actually put it on my resume as work experience, when I do get to go back to work If Jack did not keep ending up in the hospital, it would be nice to pick up another patient, outside the house, it would only be a couple hours a day, but with Jack I never know from day to day, I kinda of miss working outside the home, But I am blessed to be able to stay home and be with Jack,

    And Im finding out with the insurance they will fight you on the smallest things like jack needs sterile water everyday for trachea cleaning they will autorize 3 bottles a month but no problem with the big stuff, gives him what ever he needs, we have som much equipment here for Jack but sterile water , forget it, I don;t fight with them anymore I just boil his water,

    patty
  • Artin2010
    Artin2010 Member Posts: 17

    Hang in There
    I just wanted to add my hang in there. I think I've said before that my 90 year old mother lives with us. She is in fairly good shape physically but has some dementia. She takes care of most of her physical needs but I do the cooking, cleaning, laundry, etc. Even if my husband doesn't feel like eating, I have to cook three meals a day. That's probably good because I probably eat better. Some days it gets interesting though. For awhile Mom was having problems with lightheadedness as was my husband. When we went places I wasn't sure who to watch the closest. Then last weekend we took our maiden voyage in the motoerhome with me driving. Both Mom and my husband got sick on the way. I swear, at times, they were fighting over the barf bowl. Since I had never driven anything that big before, I just kept my mind on the driving. We got there fine, met up with our sons and families, and had a good time.

    Please try to make some time for yourself. Ask some of those family members to relieve you for a couple of hours a week. I try to get a massage once every two weeks. I have even found that going grocery shopping by myself is a break. I know we hear from everybody that we need to take care of ourselves, and get tired of hearing it. Yet it's true. If we get down, who is going to take over? If you are concerned about finances, talk with Jack. I know that's not easy because it is an admission that we don't really know where this disease is going. My husband have had some of those difficult talks, and we will have to have more of them. Interestingly, he seems to welcome them because he is worried about me, too. We have lived in this hoouse for over 30 years. At one time ww heated with wood. Our heating and cooling was spotty at best. Last week we had central heating and air put in. It was important to him. Next week a contractor is going to start remodeling one of our bathrooms. He wants to make things as comfortable as he can for me. He feels good about that. Anyway, I hope some of this helps. I don't have any real answers just like you don't. We just keep moving forward and hoping we're doing things right. We have two wonderful sons and when people have asked me how we raised such good kids, I also say we didn't do everything right, but we did the best we could at the time. And they never doubted that we loved them. I think the same is true here. Fay
    PS: Boy, did I get wordy! Sorry

    Looking out for self
    Fay, thanks for the wordiness, all good info. You are sooo right about the taking care of self part. My situation is I'm caught up caring for my dad who was diagnosed with Lung C 4 months ago, has undergone radiation and chemo, become totally wiped out and on top of that my wife is having trouble with one of her kidneys. My wife and I are both 50 years old and are insuranceless and don't qualify for medicaid here! Go figure. We are both now unemployed at present living with my dad who is retired and drawing pension and social security. We get 160.00 in food benefits from the state a month and it last about 2 1/2 weeks spending wisely. I am blessed to have been a veteran and get healthcare from the local VA JACC, if I didn't have that I'd be up the creek too! My wife however was an orphan child adopted by a nice family and was raised up by surrogate parents, until she went out on her own married a drunkard, was beat up several times divorced him, married a dope addict had two children, got out of that crazy life and a few years later met me. I helped her finish raising her two kids and my two from my wrecked marriage, and now here we are dealing with pop and the big healthcare crisis. OOPs talk about wordy.
    anyway long story short, I think it's really important to make the best of any situation and keep prayer in the equation,take care of self and be about helping in all ways possible! One day at a time, one hope that things improve and don't get worse.

    Well there I'm done for now and again thank you Fay and Patty. I guess all I'm trying to say is chin up when awake!
  • junklady
    junklady Member Posts: 88 Member

    loop holes in insurance
    Yea I don't believe they let blood relatives which is totally crazy, I guess they feel it you are a blood relative it is your duty who knows with insurance companies, I am a medical assistant and the agency hired me so if I want I can pick up another patient if I wanted to, that is why I can pick up Jack's dad, the insurance company is the one who brought it to me, I never thought about it, I was just taking care of Jack and they said it makes the patient feel more comfortable when they know the care giver, so it has worked for us, I had to quit work to stay home with Jack, and I can actually put it on my resume as work experience, when I do get to go back to work If Jack did not keep ending up in the hospital, it would be nice to pick up another patient, outside the house, it would only be a couple hours a day, but with Jack I never know from day to day, I kinda of miss working outside the home, But I am blessed to be able to stay home and be with Jack,

    And Im finding out with the insurance they will fight you on the smallest things like jack needs sterile water everyday for trachea cleaning they will autorize 3 bottles a month but no problem with the big stuff, gives him what ever he needs, we have som much equipment here for Jack but sterile water , forget it, I don;t fight with them anymore I just boil his water,

    patty

    Denied Social Security Disability
    Pattynonews-I like you are not married to my Dale. I'm going to check about home health care payment with his insurance. Dale was denied Social Security Disability on Friday after I did a 45 minute interview over the phone. He gets social security now but does not qualify for disability. He's terminally ill, I just don't get it. The system sucks. On another subject, you can use distilled water in place of sterile water. That's what is was told by the RT. What do you do with the saline down the trach? Does it help thin the mucous? I suction the trach several time a day, but sometimes it gets to thick, so I just change out in inner cannula. I've only been doing this for over week, but it feels like I've been doing it forever. He just had a trach put in on 9/11. I was lucky enough to retire in June. Little did I know what lied ahead for me. I stay home of course and catch up on things around the house. The time for "me" is spent painting the outside decks, cleaning our huge barn, putting things away for winter. Stuff Dale can't do. He gets so frustrated because he wants to be a part of everyday activity and can't. I talk to my adult kids everyday, they say "mom, hang in there". I will be strong, I have to be just like all you caregivers out there. We can do it.
  • Beckymarie
    Beckymarie Member Posts: 357
    junklady said:

    Denied Social Security Disability
    Pattynonews-I like you are not married to my Dale. I'm going to check about home health care payment with his insurance. Dale was denied Social Security Disability on Friday after I did a 45 minute interview over the phone. He gets social security now but does not qualify for disability. He's terminally ill, I just don't get it. The system sucks. On another subject, you can use distilled water in place of sterile water. That's what is was told by the RT. What do you do with the saline down the trach? Does it help thin the mucous? I suction the trach several time a day, but sometimes it gets to thick, so I just change out in inner cannula. I've only been doing this for over week, but it feels like I've been doing it forever. He just had a trach put in on 9/11. I was lucky enough to retire in June. Little did I know what lied ahead for me. I stay home of course and catch up on things around the house. The time for "me" is spent painting the outside decks, cleaning our huge barn, putting things away for winter. Stuff Dale can't do. He gets so frustrated because he wants to be a part of everyday activity and can't. I talk to my adult kids everyday, they say "mom, hang in there". I will be strong, I have to be just like all you caregivers out there. We can do it.

    SS Disability
    I also did a phone application with SS and was surprised when my husband was accepted. Long Term Disability (who really pressures you to apply for SS Disability ASAP) told me that it is very rare that a person is granted SS disability the first time. You then go through an appeals process. The system definitely does stink...how much more disabled can a person be then terminal cancer. Try going forward with the appeal. Good luck!
  • grandmafay
    grandmafay Member Posts: 1,633 Member
    Artin2010 said:

    Looking out for self
    Fay, thanks for the wordiness, all good info. You are sooo right about the taking care of self part. My situation is I'm caught up caring for my dad who was diagnosed with Lung C 4 months ago, has undergone radiation and chemo, become totally wiped out and on top of that my wife is having trouble with one of her kidneys. My wife and I are both 50 years old and are insuranceless and don't qualify for medicaid here! Go figure. We are both now unemployed at present living with my dad who is retired and drawing pension and social security. We get 160.00 in food benefits from the state a month and it last about 2 1/2 weeks spending wisely. I am blessed to have been a veteran and get healthcare from the local VA JACC, if I didn't have that I'd be up the creek too! My wife however was an orphan child adopted by a nice family and was raised up by surrogate parents, until she went out on her own married a drunkard, was beat up several times divorced him, married a dope addict had two children, got out of that crazy life and a few years later met me. I helped her finish raising her two kids and my two from my wrecked marriage, and now here we are dealing with pop and the big healthcare crisis. OOPs talk about wordy.
    anyway long story short, I think it's really important to make the best of any situation and keep prayer in the equation,take care of self and be about helping in all ways possible! One day at a time, one hope that things improve and don't get worse.

    Well there I'm done for now and again thank you Fay and Patty. I guess all I'm trying to say is chin up when awake!

    Your Stories
    When I hear stories like yours and others on these boards, I feel extra fortunate. I'm sorry you have had to endure so many things. I would like to add that I have heard of family members being paid to care for loved ones, not usually wives, here in California. It never hurts to ask. Also, on social security, it was my understanding that anyone terminally ill was considered disabled. Since my husband and I both worked in areas not covered by SS, govt. and teaching, we haven't dealt with them. I do know that insurance companies and govt. agencies almost always give no as their first answer. It's really sad that we have to fight for so many things. We are in a very unique situation in that my husband's cancer was ruled either worsened or caused by exposure to carcinogens on the job, so he is covered by Workers' Comp. We have a great attorney who won the case in the first place and continues to fight for us. I agree, it's usually the little things. They count on us not fighting for those because they know that we'll just let it go, and how many times have we done that? The thing that drives me crazy is the prescription approvals. My husband goes to a pain clinic. He has been taking the same pain pills for several months. The clinic has several doctors; each time a different one signs the prescription, it's reviewed again. Our insurance then picks it up and we pay the copay. When the pharmacist gets the approval, he refunds us the money. Thank goodness we have a long time working relationship with him, and it's a little independent pharmacy. Fay
  • pattynonews
    pattynonews Member Posts: 176
    junklady said:

    Denied Social Security Disability
    Pattynonews-I like you are not married to my Dale. I'm going to check about home health care payment with his insurance. Dale was denied Social Security Disability on Friday after I did a 45 minute interview over the phone. He gets social security now but does not qualify for disability. He's terminally ill, I just don't get it. The system sucks. On another subject, you can use distilled water in place of sterile water. That's what is was told by the RT. What do you do with the saline down the trach? Does it help thin the mucous? I suction the trach several time a day, but sometimes it gets to thick, so I just change out in inner cannula. I've only been doing this for over week, but it feels like I've been doing it forever. He just had a trach put in on 9/11. I was lucky enough to retire in June. Little did I know what lied ahead for me. I stay home of course and catch up on things around the house. The time for "me" is spent painting the outside decks, cleaning our huge barn, putting things away for winter. Stuff Dale can't do. He gets so frustrated because he wants to be a part of everyday activity and can't. I talk to my adult kids everyday, they say "mom, hang in there". I will be strong, I have to be just like all you caregivers out there. We can do it.

    Junklady, yea it is sad how
    Junklady, yea it is sad how the insurance works, But I don't need a piece of paper, and as long as Jack gets all his benefits it is all good, I lost my insurance when I quit my job, so I need to figure something out , because my blood pressure is so high, and I never had that problem before, As for Jack's trachea, he is having a lot of problems adjusting to it, and we went to the doctors and he said it was all good, and no infections, he has a lot mucos which he said is normal with a new trachea, it is all clear mucous, and he is having a hard time talking, he takes the inner canual out, because it is hard for him to breath, and we discuss it with the doctor he says all is normal , the saline I use a syringe and squirt 3 to 4 cc in the trachea it keeps it moist, Yea Jack gets upset with him self when he can't get up and mow the lawn and stuff like that, I tell him don;t worry about it, but I know it makes him feel bad, I tell him his job is to stay healthy,, But he says he feels useless sometimes, but I am afraid he gets out in that hot sun he will pass out, we live in Teas the temps were in the 100's and plu his chemo he cant be in the sun. But we all have to hang in thre, and be strong for our men
  • glasus
    glasus Member Posts: 34
    junklady said:

    Denied Social Security Disability
    Pattynonews-I like you are not married to my Dale. I'm going to check about home health care payment with his insurance. Dale was denied Social Security Disability on Friday after I did a 45 minute interview over the phone. He gets social security now but does not qualify for disability. He's terminally ill, I just don't get it. The system sucks. On another subject, you can use distilled water in place of sterile water. That's what is was told by the RT. What do you do with the saline down the trach? Does it help thin the mucous? I suction the trach several time a day, but sometimes it gets to thick, so I just change out in inner cannula. I've only been doing this for over week, but it feels like I've been doing it forever. He just had a trach put in on 9/11. I was lucky enough to retire in June. Little did I know what lied ahead for me. I stay home of course and catch up on things around the house. The time for "me" is spent painting the outside decks, cleaning our huge barn, putting things away for winter. Stuff Dale can't do. He gets so frustrated because he wants to be a part of everyday activity and can't. I talk to my adult kids everyday, they say "mom, hang in there". I will be strong, I have to be just like all you caregivers out there. We can do it.

    ssi
    Did you ever get SSDI for Dale? If you have not make sure you use the words (compassionte allowances initative) next time you talk to them.
  • junklady
    junklady Member Posts: 88 Member
    glasus said:

    ssi
    Did you ever get SSDI for Dale? If you have not make sure you use the words (compassionte allowances initative) next time you talk to them.

    SSDI denied
    SSDI denied for Dale was explained this way. He has been retired since 1987 and hence has not paid into social security and earned enough credits for disability. This is the way the system works, you are a square peg that does not fit in the round hole of SS. Sad, because you work all your life and you expect it to be there. I mentioned the compassionate allowance, same answer. There was a follow up call from SS, a nice govt. employee (imagine that). He explained it again and apologized, and even asked how Dale was doing. I thought that was nice. They didn't have to do that. So that is it. Thanks for asking.