sad at home

[Guest guest]

Hi, I was diagnosed in feb 2008 an worked at a veteran hospital I am a

respiratory therapist and when I started using oxygen is when I had to stop

working with patients. my job found a different position answering phones and

scheduling appointments and gave me a electric scooter to use while on the job.

hospital is very big. they were very kind to me.. I applied for retirement for

medical reasons and it was approved in oct 2008

I needed to work because I was bread winner of the family. Husband has been

disabled since 1989. Very hard for family right now adjusting to this fact that

I am different and unable to do the things I used to do

I was told it wasnt necessary to have open lung biopsy since they assumed it was

due to my RA. I am on 4lpm of oxygen on exertion and exercise was on 80mg

predisone but I have been weaned down. I am now off the predisone still on

oxygen

During the time i was working i had a lot of wieght gain and devolped a lot a

fluid and had to use a water pill and running to bathroom every 30min. as the

days went on I got very exhausted and soon was happy to retire.

Very difficult for me to be the patient and not the respiratory therapist. My

job now is taking care of myself and keeping my lungs clear. My husband and

children and extended family do not really like for me to attend family

functions or go places because they " dont like hospital stuff "

now that I am off predisone I am trying to lose the wieght I gained from that

darn pill.

dont think i will come off oxygen but maybe lower it to 2lpm

everyday is a different day on how I feel doing everyday activities

not sure what you can learn from my story but felt the need to tell it

My kids (23 and 21) say they are tired and depressed helping me and my husband

and its upsetting for them to think I may not be around to see them get married

or help with there kids.

they are gone most weekends 3-4 days and money doesnt go as far as it used to so

its hard to hire someone to help me around here

does anyone have any suggestion?

[Guest guest]

i am sorry to hear about your situation.

i dont have any suggestions i'm afraid

other than trying to make as many adjustment

as you can to make things easy. no stairs

for instance or downsizing to reduce outgoings.

i feel very angry on your behalf that your

immediate and extended family dont want you

to go on social events. whether thats really

true or just what you think they feel doesnt

matter. please juse ignore them and keep

yourself socialised. o2 spooks people initially

but they eventually get used to it. the hardest

bit is going somewhere new. i like people to

warn people but i simply dont look at people until

they have had time to stare at me or if its suitable

i just say, are you spooked, so was i but it helps

me feel better. this works really well, especially

total strangers in restaurants.

my family now dont notice it and are often confused

when they see people's reactions to it. i had

to remind my hubby yesterday that the driver next

to us would have been shocked to see me sitting

all dressed up to the nines with a nose hose.

i think in general people dont like it when

people change. especially when the person

changing did so much. i do kinda feel sorry for

your kids though. you said your husband has

been disabled since 1989. thats since they were

very small. i'm assuming their lives were affected

by this and now you are needing more support and

they are still very young. i am sure they will

come through. they are just suffering from carer

fatigue and are just needing some adjustment

time. i feel it took 18 months for me to assimilate

this new thing and its the same for families.

this group fulfills lots of the gaps that some of

families just cant fill. give them time. they will

take their lead from you and if you seem positive

with a plan they will be happy to do what you delegate.

they are most scared of having to be the decision

makers i'd guess and of having no 'me' time. reassure

them that you will ask for what you need and that you

will respect that they have their own lives and not

take advantage.

may uip 0606

glasgow, scotland 49

>

> Hi, I was diagnosed in feb 2008 an worked at a veteran hospital I am a

respiratory therapist and when I started using oxygen is when I had to stop

working with patients. my job found a different position answering phones and

scheduling appointments and gave me a electric scooter to use while on the job.

hospital is very big. they were very kind to me.. I applied for retirement for

medical reasons and it was approved in oct 2008

> I needed to work because I was bread winner of the family. Husband has been

disabled since 1989. Very hard for family right now adjusting to this fact that

I am different and unable to do the things I used to do

> I was told it wasnt necessary to have open lung biopsy since they assumed it

was due to my RA. I am on 4lpm of oxygen on exertion and exercise was on 80mg

predisone but I have been weaned down. I am now off the predisone still on

oxygen

> During the time i was working i had a lot of wieght gain and devolped a lot a

fluid and had to use a water pill and running to bathroom every 30min. as the

days went on I got very exhausted and soon was happy to retire.

> Very difficult for me to be the patient and not the respiratory therapist. My

job now is taking care of myself and keeping my lungs clear. My husband and

children and extended family do not really like for me to attend family

functions or go places because they " dont like hospital stuff "

> now that I am off predisone I am trying to lose the wieght I gained from that

darn pill.

> dont think i will come off oxygen but maybe lower it to 2lpm

> everyday is a different day on how I feel doing everyday activities

> not sure what you can learn from my story but felt the need to tell it

>

> My kids (23 and 21) say they are tired and depressed helping me and my husband

and its upsetting for them to think I may not be around to see them get married

or help with there kids.

> they are gone most weekends 3-4 days and money doesnt go as far as it used to

so its hard to hire someone to help me around here

> does anyone have any suggestion?

>

[Guest guest]

Thank you for your kind words

I know its hard for them and I try not to take advantage

hope things will get better and I will work to stay positive

Bernadette Sneed

Subject: Re: sad at homeTo: Breathe-Support Date: Sunday, July 12, 2009, 9:33 AM

i am sorry to hear about your situation.i dont have any suggestions i'm afraidother than trying to make as many adjustmentas you can to make things easy. no stairsfor instance or downsizing to reduce outgoings.i feel very angry on your behalf that yourimmediate and extended family dont want youto go on social events. whether thats reallytrue or just what you think they feel doesntmatter. please juse ignore them and keep yourself socialised. o2 spooks people initially but they eventually get used to it. the hardestbit is going somewhere new. i like people towarn people but i simply dont look at people untilthey have had time to stare at me or if its suitablei just say, are you spooked, so was i but it helpsme feel better. this works really well, especiallytotal strangers in restaurants. my family now dont notice it and are often confused when they see people's

reactions to it. i had to remind my hubby yesterday that the driver next to us would have been shocked to see me sitting all dressed up to the nines with a nose hose.i think in general people dont like it when people change. especially when the person changing did so much. i do kinda feel sorry foryour kids though. you said your husband hasbeen disabled since 1989. thats since they werevery small. i'm assuming their lives were affected by this and now you are needing more support and they are still very young. i am sure they willcome through. they are just suffering from carerfatigue and are just needing some adjustmenttime. i feel it took 18 months for me to assimilatethis new thing and its the same for families.this group fulfills lots of the gaps that some offamilies just cant fill. give them time. they willtake their lead from you and if you seem positivewith a plan

they will be happy to do what you delegate.they are most scared of having to be the decisionmakers i'd guess and of having no 'me' time. reassurethem that you will ask for what you need and that youwill respect that they have their own lives and nottake advantage.may uip 0606glasgow, scotland 49>> Hi, I was diagnosed in feb 2008 an worked at a veteran hospital I am a respiratory therapist and when I started using oxygen is when I had to stop working with patients. my job found a different position answering phones and scheduling appointments and gave me a electric scooter to use while on the job. hospital is very big. they were very kind to

me.. I applied for retirement for medical reasons and it was approved in oct 2008> I needed to work because I was bread winner of the family. Husband has been disabled since 1989. Very hard for family right now adjusting to this fact that I am different and unable to do the things I used to do> I was told it wasnt necessary to have open lung biopsy since they assumed it was due to my RA. I am on 4lpm of oxygen on exertion and exercise was on 80mg predisone but I have been weaned down. I am now off the predisone still on oxygen> During the time i was working i had a lot of wieght gain and devolped a lot a fluid and had to use a water pill and running to bathroom every 30min. as the days went on I got very exhausted and soon was happy to retire. > Very difficult for me to be the patient and not the respiratory therapist. My job now is taking care of myself and keeping my lungs clear. My husband and children and extended family

do not really like for me to attend family functions or go places because they "dont like hospital stuff"> now that I am off predisone I am trying to lose the wieght I gained from that darn pill.> dont think i will come off oxygen but maybe lower it to 2lpm > everyday is a different day on how I feel doing everyday activities> not sure what you can learn from my story but felt the need to tell it> > My kids (23 and 21) say they are tired and depressed helping me and my husband and its upsetting for them to think I may not be around to see them get married or help with there kids.> they are gone most weekends 3-4 days and money doesnt go as far as it used to so its hard to hire someone to help me around here> does anyone have any suggestion?>

[Guest guest]

Bernadette,

I'm so sorry that you are feeling so down. This must be an awful adjustment and the irony of a respiratory therapist with pulmonary fibrosis must be a shock to your system.

You must of course concentrate on taking care of yourself and your husband. You're right to say that you must keep your lungs clear and beyond that you must simplify to conserve energy. Enlist the help of your children to rearrange things to make it easier for you. For instance change your kitchen cupboards around so that things you use frequently are within easy reach. Get a shower chair if you don't already have one. If your house has more than one floor, eliminate trips up and down the stairs as much as possible. Others will come up with more ideas.

I have a son who is 24. He lives on his own so he's not around me all the time. If he was I don't honestly know how he'd be with all that I have to cope with. But after 3 years he's gotten very accustomed to the oxygen and my slower pace. He never hesitates to introduce me to his friends and things like that but he's had 3 years to accomodate all this. Try to be patient and give your kids a bit of time. They may be more concerned than they can let on and don't know how to cope. One thing I will say is that you should not avoid socializing. This disease is isolating enough without adding to it. The more your family and friends see you and your oxygen the faster they will become accustomed to it.

In the meantime just know that everyone here understands completely. We've all been down this road and know how you feel!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Sunday, July 12, 2009 9:14:03 AMSubject: sad at home

Hi, I was diagnosed in feb 2008 an worked at a veteran hospital I am a respiratory therapist and when I started using oxygen is when I had to stop working with patients. my job found a different position answering phones and scheduling appointments and gave me a electric scooter to use while on the job. hospital is very big. they were very kind to me.. I applied for retirement for medical reasons and it was approved in oct 2008I needed to work because I was bread winner of the family. Husband has been disabled since 1989. Very hard for family right now adjusting to this fact that I am different and unable to do the things I used to doI was told it wasnt necessary to have open lung biopsy since they assumed it was due to my RA. I am on 4lpm of oxygen on exertion and exercise was on 80mg predisone but I have been weaned down. I am now off the predisone still on oxygenDuring the time i was working i had a lot of wieght gain and devolped a lot

a fluid and had to use a water pill and running to bathroom every 30min. as the days went on I got very exhausted and soon was happy to retire. Very difficult for me to be the patient and not the respiratory therapist. My job now is taking care of myself and keeping my lungs clear. My husband and children and extended family do not really like for me to attend family functions or go places because they "dont like hospital stuff"now that I am off predisone I am trying to lose the wieght I gained from that darn pill.dont think i will come off oxygen but maybe lower it to 2lpm everyday is a different day on how I feel doing everyday activitiesnot sure what you can learn from my story but felt the need to tell itMy kids (23 and 21) say they are tired and depressed helping me and my husband and its upsetting for them to think I may not be around to see them get married or help with there kids.they are gone most weekends 3-4

days and money doesnt go as far as it used to so its hard to hire someone to help me around heredoes anyone have any suggestion?

[Guest guest]

i did not mean to suggest that you would

take advantage, sorry, i meant to say that

they would be worried about your neediness

which must be scary to them considering how

you have always been the main doer.

sorry. i know i can be very needy of my

daughter and its this mostly that keeps her

running away from me. lol.

may

> >

> > Hi, I was diagnosed in feb 2008 an worked at a veteran hospital I am a

respiratory therapist and when I started using oxygen is when I had to stop

working with patients. my job found a different position answering phones and

scheduling appointments and gave me a electric scooter to use while on the job.

hospital is very big. they were very kind to me.. I applied for retirement for

medical reasons and it was approved in oct 2008

> > I needed to work because I was bread winner of the family. Husband has been

disabled since 1989. Very hard for family right now adjusting to this fact that

I am different and unable to do the things I used to do

> > I was told it wasnt necessary to have open lung biopsy since they assumed it

was due to my RA. I am on 4lpm of oxygen on exertion and exercise was on 80mg

predisone but I have been weaned down. I am now off the predisone still on

oxygen

> > During the time i was working i had a lot of wieght gain and devolped a lot

a fluid and had to use a water pill and running to bathroom every 30min. as the

days went on I got very exhausted and soon was happy to retire.

> > Very difficult for me to be the patient and not the respiratory therapist.

My job now is taking care of myself and keeping my lungs clear. My husband and

children and extended family do not really like for me to attend family

functions or go places because they " dont like hospital stuff "

> > now that I am off predisone I am trying to lose the wieght I gained from

that darn pill.

> > dont think i will come off oxygen but maybe lower it to 2lpm

> > everyday is a different day on how I feel doing everyday activities

> > not sure what you can learn from my story but felt the need to tell it

> >

> > My kids (23 and 21) say they are tired and depressed helping me and my

husband and its upsetting for them to think I may not be around to see them get

married or help with there kids.

> > they are gone most weekends 3-4 days and money doesnt go as far as it used

to so its hard to hire someone to help me around here

> > does anyone have any suggestion?

> >

>

[Guest guest]

Bernadette.... first of all, I feel so sad as I read your post and I can know your sadness at living with such apparently insensitive family members.

I'm sure they don't "intend" to come across as uncaring but nonetheless they do...Your grown children telling you they are, 'tired and depressed helping, and upset thinking about their future needs' sounds so selfish of them.

How severe is your husband's disability?

I'm wondering if you are like most of us women...caregivers/caretakers of our family. It's what we're "supposed" to do, we think. When it comes time for the family to be caring in return they have no idea how to go about it...we've never asked anything of them and our kids are raised thinking they are "me first" in every situation.

Yes, I have a suggestion. Sit that family of yours down and have a direct, honest and open discussion. Be frank with what you need, how you feel and what you want from each of them. (Of course be sure you think of what you want from each one before you bring it up...)

I think the thought of having to "hire" help because helping is distasteful to your family is one of the things you could/should mention. It should not have to even be considered, hiring outside help under these circumstances of kids 'being tired'. Especially as you say money is tight.

You say, "they are gone most weekends"...do your kids live with you?

Do they have jobs to support themselves or are you caring for everyone?

Bernadette, we learn here to be our own best advocate. If it's at the drs. office, hospital, tests...on and on, or especially AT HOME.

I'm not suggesting you do any of this in anger but honestly talk to your family.

My heart just hurts thinking of you not feeling welcome at family functions, etc.

You are certainly in my prayers.

Hugs to you,

MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

sad at home

Hi, I was diagnosed in feb 2008 an worked at a veteran hospital I am a respiratory therapist and when I started using oxygen is when I had to stop working with patients. my job found a different position answering phones and scheduling appointments and gave me a electric scooter to use while on the job. hospital is very big. they were very kind to me.. I applied for retirement for medical reasons and it was approved in oct 2008I needed to work because I was bread winner of the family. Husband has been disabled since 1989. Very hard for family right now adjusting to this fact that I am different and unable to do the things I used to doI was told it wasnt necessary to have open lung biopsy since they assumed it was due to my RA. I am on 4lpm of oxygen on exertion and exercise was on 80mg predisone but I have been weaned down. I am now off the predisone still on oxygenDuring the time i was working i had a lot of wieght gain and devolped a lot a fluid and had to use a water pill and running to bathroom every 30min. as the days went on I got very exhausted and soon was happy to retire. Very difficult for me to be the patient and not the respiratory therapist. My job now is taking care of myself and keeping my lungs clear. My husband and children and extended family do not really like for me to attend family functions or go places because they "dont like hospital stuff"now that I am off predisone I am trying to lose the wieght I gained from that darn pill.dont think i will come off oxygen but maybe lower it to 2lpm everyday is a different day on how I feel doing everyday activitiesnot sure what you can learn from my story but felt the need to tell itMy kids (23 and 21) say they are tired and depressed helping me and my husband and its upsetting for them to think I may not be around to see them get married or help with there kids.they are gone most weekends 3-4 days and money doesnt go as far as it used to so its hard to hire someone to help me around heredoes anyone have any suggestion?

[Guest guest]

If my kids are 23 and 21 still living at home and are "tired of helping me with a fatal disease" it's time for them

to move on out. Jack79/IPF - UIP/dx06/05 Maine

To: Breathe-Support Sent: Sunday, July 12, 2009 9:14:03 AMSubject: sad at home

Hi, I was diagnosed in feb 2008 an worked at a veteran hospital I am a respiratory therapist and when I started using oxygen is when I had to stop working with patients. my job found a different position answering phones and scheduling appointments and gave me a electric scooter to use while on the job. hospital is very big. they were very kind to me.. I applied for retirement for medical reasons and it was approved in oct 2008I needed to work because I was bread winner of the family. Husband has been disabled since 1989. Very hard for family right now adjusting to this fact that I am different and unable to do the things I used to doI was told it wasnt necessary to have open lung biopsy since they assumed it was due to my RA. I am on 4lpm of oxygen on exertion and exercise was on 80mg predisone but I have been weaned down. I am now off the predisone still on oxygenDuring the time i was working i had a lot of wieght gain and devolped a lot

a fluid and had to use a water pill and running to bathroom every 30min. as the days went on I got very exhausted and soon was happy to retire. Very difficult for me to be the patient and not the respiratory therapist. My job now is taking care of myself and keeping my lungs clear. My husband and children and extended family do not really like for me to attend family functions or go places because they "dont like hospital stuff"now that I am off predisone I am trying to lose the wieght I gained from that darn pill.dont think i will come off oxygen but maybe lower it to 2lpm everyday is a different day on how I feel doing everyday activitiesnot sure what you can learn from my story but felt the need to tell itMy kids (23 and 21) say they are tired and depressed helping me and my husband and its upsetting for them to think I may not be around to see them get married or help with there kids.they are gone most weekends 3-4

days and money doesnt go as far as it used to so its hard to hire someone to help me around heredoes anyone have any suggestion?

[Guest guest]

Hi- I am confused. Are your kids still living with you? Are they working? It was a terrible thing for them to say such a thing. You are the one who is sick and dying and they are only concerned about themselves. I sure hope this attitude changes. One thing for sure I would continue to go to family functions. They will get used to seeing you with oxygen and once familiar will be accepting. As to your kids not wanting to help you....they are adults and there is not much you can do but if they are living with you and you can afford it kick them out. I go out to restraunts and to the poll and such and have not had a single person stare at me or be unkind to me and in fact often people ask if I am all right or if they can help me in any way because I will be panting. If at a social event there are young children and they seem to stare or be afraid just talk to them. Once I was waiting for a booth at Denny's and a young girl about 6 ws next to me and she kept staring at me so I talked to her. I asked her if she knew what my portable was and things like that and I explained that I need special air and finally got her to touch my Helios and she was very inquisitive and end the end smiled. But, you should know these things being a RT yourself! Ihope your kids come thru for you and they might actually turn out to be decent human beings but as much as their words hurt you you have to try and put them aside and move on. Do you have friends? If so will they help? I have a friend who's daughter comes and washes my floors and charges me only $10 hr and if I don't h ave it one week she smiles and says it's ok.....but she is a doll. What may I ask is your husbands disability? Can he cook? Is he able to take are of himself? Is he able to help clean? Shop? Perhaps if he really understood he could pitch in. So sorry you had to hear your kids say such terrible things. I just don't understand kids today. When my mother had her stroke my husband and I pitched in to help her as much as we could and that was just what was had to be done. Now, kids think differently. I have a friend who "pays' her grandson to take her trash out every week and bring it in. Things like that should just be done for FREE. I'm afraid I am at a loss as to the values people have now. But, things will get better. Buck up and try to find happiness in the things you do. Joyce Rudy birds AZ

sad at home

Hi, I was diagnosed in feb 2008 an worked at a veteran hospital I am a respiratory therapist and when I started using oxygen is when I had to stop working with patients. my job found a different position answering phones and scheduling appointments and gave me a electric scooter to use while on the job. hospital is very big. they were very kind to me.. I applied for retirement for medical reasons and it was approved in oct 2008I needed to work because I was bread winner of the family. Husband has been disabled since 1989. Very hard for family right now adjusting to this fact that I am different and unable to do the things I used to doI was told it wasnt necessary to have open lung biopsy since they assumed it was due to my RA. I am on 4lpm of oxygen on exertion and exercise was on 80mg predisone but I have been weaned down. I am now off the predisone still on oxygenDuring the time i was working i had a lot of wieght gain and devolped a lot a fluid and had to use a water pill and running to bathroom every 30min. as the days went on I got very exhausted and soon was happy to retire. Very difficult for me to be the patient and not the respiratory therapist. My job now is taking care of myself and keeping my lungs clear. My husband and children and extended family do not really like for me to attend family functions or go places because they "dont like hospital stuff"now that I am off predisone I am trying to lose the wieght I gained from that darn pill.dont think i will come off oxygen but maybe lower it to 2lpm everyday is a different day on how I feel doing everyday activitiesnot sure what you can learn from my story but felt the need to tell itMy kids (23 and 21) say they are tired and depressed helping me and my husband and its upsetting for them to think I may not be around to see them get married or help with there kids.they are gone most weekends 3-4 days and money doesnt go as far as it used to so its hard to hire someone to help me around heredoes anyone have any suggestion?