Question for caregivers

[Guest guest]

This is a questions for the caregivers or loved ones of those with psc. When

your loved one is

sick or hospitalized or when it comes time for transplant, how do you take care

of yourself?

Since my husband's last hospitalization Oct 4, I have had very little " me " time.

I spent every

moment at the hospital with him except to run home and shower and check on our

cats. Even

the first few days after he came home he was still very swollen and in some pain

so he rarely

got off the couch which means I was still waiting on him hand & foot. I finally

almost

snapped last night. He went to work all day yesterday and came home and worked

on a

computer so obviously he was feeling better but still wanted me to do this and

that for him.

Now typically my husband is VERY independent and not a complainer or whiner. He

kept

apologizing in to me in the hospital because he needed help getting unhooked to

go to the

bathroom, bathe, etc. I just find it very difficult to fit some very much need

time for myself in

all of this. And when I do, I feel guilty.

[Guest guest]

My husband has psc and I feel your pain. There are a couple of things I do and one of them is when he is in the hospital (it has always been HE and he sleeps most of the time at first.) He likes me to be there all of the time, however we have discussed it and decided that it is a good time for me to get some time for myself because he is getting the care he needs. I get extra sleep and do whatever I need and part of what I need is being there with him and serving him. It's a good time because he is getting good care and I don't have to worry that he is alone. I spend more time there when he wakes up, but I work very hard to keep a good perspective at that time. When he is in the hospital is also when our children step up more, they are all grown and on their own, so they pick up some of the slack.

My husband is very sensitive to my needs and since I work full time out of our home, I do have that time away. I spend my lunch time either resting or socializing and keep in touch with him on the phone.

The one thing I know for sure is that it is so important to take care of yourself. There are times that I forget that and I've asked my family to remind me if I get carried away.

Our church also provides support and help. Another thing I do is "force" my husband to get out with me, even if it's for a short ride or a visit to our children and grandchildren. He never wants to go but I strongly encourage him and when he comes along he's always glad that he did. Most times it really tires him out, but that can be dealt with.

I've found this experience both the easiest and the hardest thing I have ever done in my life. The easiest because of my love and devotion to him (we've been married for 36 years). I will do anything I can for him. At the same time, it is the most difficult thing I've ever done and I know I don't need to explain that.

I know I don't have all the answers, however, I hope that you can find something in my experience that can help ease your pain.

LOVE & LIGHT

Barbara (Wife of , PSC'07, HE, Chronic Pancr, Osteo, Diabetes, Listed)

[Guest guest]

My husband has psc and I feel your pain. There are a couple of things I do and one of them is when he is in the hospital (it has always been HE and he sleeps most of the time at first.) He likes me to be there all of the time, however we have discussed it and decided that it is a good time for me to get some time for myself because he is getting the care he needs. I get extra sleep and do whatever I need and part of what I need is being there with him and serving him. It's a good time because he is getting good care and I don't have to worry that he is alone. I spend more time there when he wakes up, but I work very hard to keep a good perspective at that time. When he is in the hospital is also when our children step up more, they are all grown and on their own, so they pick up some of the slack.

My husband is very sensitive to my needs and since I work full time out of our home, I do have that time away. I spend my lunch time either resting or socializing and keep in touch with him on the phone.

The one thing I know for sure is that it is so important to take care of yourself. There are times that I forget that and I've asked my family to remind me if I get carried away.

Our church also provides support and help. Another thing I do is "force" my husband to get out with me, even if it's for a short ride or a visit to our children and grandchildren. He never wants to go but I strongly encourage him and when he comes along he's always glad that he did. Most times it really tires him out, but that can be dealt with.

I've found this experience both the easiest and the hardest thing I have ever done in my life. The easiest because of my love and devotion to him (we've been married for 36 years). I will do anything I can for him. At the same time, it is the most difficult thing I've ever done and I know I don't need to explain that.

I know I don't have all the answers, however, I hope that you can find something in my experience that can help ease your pain.

LOVE & LIGHT

Barbara (Wife of , PSC'07, HE, Chronic Pancr, Osteo, Diabetes, Listed)

[Guest guest]

My husband has psc and I feel your pain. There are a couple of things I do and one of them is when he is in the hospital (it has always been HE and he sleeps most of the time at first.) He likes me to be there all of the time, however we have discussed it and decided that it is a good time for me to get some time for myself because he is getting the care he needs. I get extra sleep and do whatever I need and part of what I need is being there with him and serving him. It's a good time because he is getting good care and I don't have to worry that he is alone. I spend more time there when he wakes up, but I work very hard to keep a good perspective at that time. When he is in the hospital is also when our children step up more, they are all grown and on their own, so they pick up some of the slack.

My husband is very sensitive to my needs and since I work full time out of our home, I do have that time away. I spend my lunch time either resting or socializing and keep in touch with him on the phone.

The one thing I know for sure is that it is so important to take care of yourself. There are times that I forget that and I've asked my family to remind me if I get carried away.

Our church also provides support and help. Another thing I do is "force" my husband to get out with me, even if it's for a short ride or a visit to our children and grandchildren. He never wants to go but I strongly encourage him and when he comes along he's always glad that he did. Most times it really tires him out, but that can be dealt with.

I've found this experience both the easiest and the hardest thing I have ever done in my life. The easiest because of my love and devotion to him (we've been married for 36 years). I will do anything I can for him. At the same time, it is the most difficult thing I've ever done and I know I don't need to explain that.

I know I don't have all the answers, however, I hope that you can find something in my experience that can help ease your pain.

LOVE & LIGHT

Barbara (Wife of , PSC'07, HE, Chronic Pancr, Osteo, Diabetes, Listed)

[Guest guest]

Bobbi,

Hi! I thought I'd chime in with my two cents worth! I am the one with PSC and

I am grateful every single day for my family of caregivers. Please don't ever

feel guilty about taking time for yourself! I feel guilt at all the things my

family now has to do for me and because of me that I used to be able to handle

myself and guilty that I'm the cause of a large amount of their worry and

stress. That said, even though there are times when I want them near me or with

me (especially when I'm having a bad day), I also truly want them to go on to

thrive in their own lives, make their own social engagements and have days and

times when it's all about them and they don't even need to consider me. My case

may be a bit different in that I've had to urge my family to take time for

themselves and reassure them that I'll be all right for a few hours, but I can't

imagine that your husband, who I'm sure is eternally grateful and full of love

for you and all you've

done, wouldn't feel the same way even if it's hard for him to express it.

It's okay to get mad and feel depleted. You're stuck fighting a disease that's

ravaged your loved one's body and life and has also taken a toll on yours. In

my family, I think it's safe to say we all have PSC. I may be the patient, but

their lives are altered by it every single day and they also are in the battle

with me. Please take time for yourself. Remember the old airplane oxygen mask

mantra...take care of yourself first so that you can assist those you love.

I hope this helps!

Sandi in VA

>

> Subject: Question for caregivers

> To:

> Date: Tuesday, October 14, 2008, 12:03 PM

> This is a questions for the caregivers or loved ones of

> those with psc. When your loved one is

> sick or hospitalized or when it comes time for transplant,

> how do you take care of yourself?

> Since my husband's last hospitalization Oct 4, I have

> had very little " me " time. I spent every

> moment at the hospital with him except to run home and

> shower and check on our cats. Even

> the first few days after he came home he was still very

> swollen and in some pain so he rarely

> got off the couch which means I was still waiting on him

> hand & foot. I finally almost

> snapped last night. He went to work all day yesterday and

> came home and worked on a

> computer so obviously he was feeling better but still

> wanted me to do this and that for him.

> Now typically my husband is VERY independent and not a

> complainer or whiner. He kept

> apologizing in to me in the hospital because he needed help

> getting unhooked to go to the

> bathroom, bathe, etc. I just find it very difficult to fit

> some very much need time for myself in

> all of this. And when I do, I feel guilty.

[Guest guest]

Thanks you Sandy.

[Guest guest]

Thanks you Sandy.

[Guest guest]

Thanks you Sandy.