Re: Living with and caring for someone with PA

[Guest guest]

Has your wife talked to anyone with PA or even arthritis? WHen I was

first diagnosed I thought my world was going to come to an end and

then my mom introduced me to this wonderful lady who was in a

wheelchair with arthritis. She had been married for 50+ years and had

children and lived with the crippling diease day after day with a

smile on her face. After talking to her I knew my life was not going

to end at the age of 27. I find it helps to be able to talk to

someone who understands what I am going through. Have you recommended

this site for your wife to share her feelings or just to read other

letters so she can relate. You sound like a very supportive husband

who is doing everything you can. There will be days when you have had

enough and you wish she never had this disease. There is nothing

wrong with it but keep it to yourself. My hubby has been very

supportive but there has been days when I can tell he has had enough

and that is when I send him out to the movies or do whatever he

wants. Do you have any family that can help when you are traveling

for business or can lend you a hand?

Please feel free to give her my email (gofsnok2@...) and

I would be happy to correspond with her. I was diagnosed with PA 12

years ago and I have a 5 1/2 year old son and a 3 1/2 year old

daughter. I know what she is going through and I would be happy to

lend an ear to you or your wife.

Alison

[Guest guest]

Hi .....

Man ,you gave us a glimpse of what it can be like for our loved ones

allright. I can commiserate with you to some extent because I care

for a good friend whose illnesses are worse than mine and may not

have long to live. I get so very tired sometimes and I would just

like someone to talk to: you know-say I am scared my friend had a bad

day. He does tend to take his frustrastions out on me because I am

his closest loved one. Sometimes I listen and if I am too tired I

just tell him: I don't feel well either so I can't listen right now.

Usually he calms down and we can both talk about our frustrations in

a normal way.

I don't think you should have to listen to so much anger from your

wife. Some of it is inevitable because we tend to vent with the

people closest to us. I believe your wife should also see your side

of the situation. I know I feel really bad if my illnesses impose

things on other people. And my friend understands the toll on me

that being close to him causes.

Of course, we can't give your wife help she didn't ask for but I am

wondering if some therapy where she could work through her anger and

helplessness over her diseases would help-or if she even agreed to

join a group like ours and try to complain less to you it might help.

Finally, I am assuming when she wished the pain on you it was in

anger or frustration. If not-it is not cool at all. I wouldn't wish

my pain on anybody, least of all someone I loved. I have joked that

it would be nice if the Docs could feel it for a short time because

they would then believe us how bad it can be and might be more

understanding. It was really a plea for understanding more than a

bad wish for anyone.

Hope some of this helps. You sound like a good husband.

Regards,

Marti

[Guest guest]

In a message dated 1/8/2004 5:41:24 PM Eastern Standard Time,

johngaspari2000@... writes:

> Help, I'm tired, confused, and don't know where to turn

Hi , we are happy to hear you vent:-) All I can say is that she is so lucky

to have you. I think we all go through a very angry phase when we first get

this godawful disease, then some people get very depressed, and some stay both

angry and depressed.

I think you will find that most of us also treat the depression that comes from

knowing our lives are now very different. In addition to anti-depressants, I

spent some time in therapy trying to come to terms with this illness and

grieving for the very energetic person I used to be. I realize it might be very

difficult, but you might want to recommend that she talk to a professional who

can help her face the fact that she has this, and its not going away.

Also please welcome her to join our group...it's a big help to have people who

do understand what you are going through.

Again, she is so lucky to have you.

[Guest guest]

I can sympathise completely with you as my husband and I were having

a chat about this only yesterday. I ranted at him as usual and he

came back with, *well have you ever thought about how this affects

me?*. I can honestly say I hadn't.

I don't know of anywhere for carers and partners but I'm sure you're

welcome here. Anything I can help with I'd be pleased to.

Take Care

[Guest guest]

Alison

Thanks for the encouragment, it helps to know I'm not acting like a

jerk. I've been lurking on this site for almost a year and I have

begged my wife to join a group like this she always says yeah I

should do that, but never does. She does talk to and commisurate

with others with PA when she gets her remicaid treatments, and when

she goes to her warm water exercise class, I finally got her to

start seeing a therapist, and it helps when she goes. I'll give it

the college try again as I really think she would benefit from

people like you.

Thanks

[Guest guest]

Thanks Marti, it does help. I'm trying to convince my wife to join

this group or one like it, and of course when she " wishes " her pain

on me it is so I'd be able to understand when I push her too hard

for not being able to get out of bed.

Thanks for listening to me vent it helps more than I thought it

would.

[Guest guest]

Thanks my wife is see a therapist, and it does help when she

gets there. I'm still trying to get her to join this group. I've

been lurking here for awhile and I can tell you are a great group

of people and obviously are here to try and help each other. Thanks

again

[Guest guest]

Thank you have all been great. I feel a lot better after being

here for a day you are all so nice to share your experiences.

Thanks I hope your husband isn't feeling it too bad....

[Guest guest]

Dear --

Please keep talking here if it helps you. I am so sorry that you have so much

to deal with. Our spouses really do have a heavy load. Mine has pitched in so

much and I make every effort to appreciate him and curb the grumpiness that

comes with this disease, but occasionally I fail. Can you get help to come in

when you are gone? Call on family and friends whenever you can. Definitely

talk you her doc and staff about it too. They may have some good suggestions.

She is on a bunch of meds and that may be exacerbating things, especially if her

current personality is vastly diffrent than before she was diagnosed. I wish

you comfort and hope you find something to help. Cheri :-))

[Guest guest]

Hi , I had another thought. One thing that really helped me was going to

physical therapy. My rheumy prescribed it as a way for me to regain some of my

flexibility and strength, and the goal was " self management " , ie things I could

do on my own once I knew how. Somehow, since it was an appointment and I had to

go there like the doctors, I was more motivated than if I had just tried to be

more active at home.

Hope that helps

[Guest guest]

Thanks Cheri, we do call on friends for help when I travel but it's

hard for them to help when she needs it the most, in the morning.

They have work and families too. We moved to the Mid-West from the

East coast so we have no family in the area. As for her doctors she

is very protective and rarely if ever even will let me accompany her

to her visits. Talking here definetly has helped me though and we're

having a good weekend, not too much pain and a stable mood.

Thanks --

-

[Guest guest]

Thanks - I'm trying to figure out how I can pass on all the

great advice you are all giving without hurting my wifes feelings by

telling her I joined a support group that I can't get her to join.

Any advice? I really wish I could figure out a way to get her to

join this group. What made you decide to join?

It all helps :>)

[Guest guest]

Hi ,

I can certainly relate to your situation. Your wife feel fustrated

and she gets mad with you. I she's like me, she possibly gets mad

then sad at herself afterwards. I've told a friend with Rheumatoid

Arthritis that when I suffer, everyone else suffers in someway

whether it's little or a lot. When I suffer, my husband is victim to

my bad mood, depression or inability to help share house chores like

cooking and doing the dishes. I sometimes wonder if He thinks of what

it would be like to have a healthier wife. I'm sure he's not going to

throw me out and get one works!! But I do feel for him. He comes back

from work on some of my painful days and cooks, does the dishes and

puts our littlies to bed. I could hug, thank him and cry at the same

time at his thoughtfulness, but I don't. I don't know why. I love him

more than anything in the world. I should probably thank him more

and complain less. He should probably tell me when to 'pull my head

in'.

Some tips I have: You will know by know what the signs are that your

wife is having difficulty or pain. So if you see she is in pain or

sad Don't ask the obvious like, " What's wrong with you this morning? "

(Yes, my husband as thoughtful as he is, seems to forget that PA is

worst in the morning), she'll be a no go zone. When I feel most

supported is when he offers to make me a cup of tea and to sit down

and then asks me if I'm sore this morning. Sounds like walking on egg

shells but hey? anything to make a smooth morning.

We will hopefully all recognise our limitations (physical and mental)

and time our more 'energetic' discussions for when the pain is less

ie at night. During flares keep your social demands down. Don't

expect her to want to go out when she knows she's going to pay for it

in pain later that day or the next day. It's also exhausting. And I

certainly don't feel like cooking for dinner parties. But you don't

sound like you would ask that of her. Just know that even going out

to do groceries with the kids and shopping for furniture etc can be

just as physically demanding. My husband gets extremely upset when he

tells me of all the social invitations we get and I give him a

lukewarm reception to it, even non-verbally. But it's not just

painful, I feel very unsociable and feel sure people might think I am

unsociable if I turn up and put in a less than enthusiastic smiley

appearance. Who wants to be a wallflower. It's depressing. I know

it's hard for you. It's hard for everyone involved. I let my husband

go alone if he wants to. Afterall, why should he miss out on some fun?

Having children in the house is a very important factor in our

control of expression of our negative emotions. It has to be

minimised or out of earshot where possible for their sake. Beleive me

they probably have their fair share of exposure to seeing how adults

cope with difficult situations. They don't need too much. They need a

stable emotional environment, they crave harmony in the home and in

the relationship of their parents. They are such sensitive wee

things.

My husband talks to the husband of my friend with RA. They comiserate

with each other. It helps.

Good luck. Acknowledgement of problems is half the way to resolution.

It opens the door.

.

PA is an intemittent disease, or so my Rheumy tells me. When she's

not in a flare, you can both make up for all the bad times!

[Guest guest]

Thanks, You're right on everything you said. My wife does tell me

how she doesn't deserve me and wishes she was healthy and we could

have more children, etc. It makes me feel better yes, and we have

had a great weekend the past two days.

I'm not sure what your husband is like, but as for me when my wife

tells me she's not up to going out and I should take our son and go

have fun or go out with my friends and burn off some steam. Yes I do

it and it is a great relief to get out and laugh or even just being

around people that are happy; however it's typically when I miss her

the most.

The fact of the matter is I love her and would do anything for her,

that's why I married her. There are just days where I think she

feels more sorry for herself than she feels pain.

Thanks

[Guest guest]

,

Your wife is lucky to have you, first of all. It is not easy dealing with anyone

with a health problem, of any kind. Atleast you appear to understand what she is

going through. My husband is in complete, and total denial. He can't understand

why I can't or won't do the thing I once did. With my personality, it is

sometimes difficult to explain. My first reaction is to say " screw it. " Then I

try to do the things he wants, and I fail. In the past, I would not be able to

handle failure. Now days, I say " screw it. " If I can't do it, I can't do it. My

prayer is that one day he will realize that I am no longer Wonder Woman - I

need help. I just don't know how to get him there. How did you figure it out? I

am 51 and have 3 children - 30 (grown and on his own), 14 and 12 - who still

need Mom for a lot of things. I am very involved in my kid's school and our

church, but I know that I am slowing down very quickly. The fatigue is a killer.

I wake up in the morning and one hour later could lay

down and sleep all day. Consequently, nothing gets done in the house. Bad wife,

bad mother. Suggestions! Sorry to ramble.

Terri B.

[Guest guest]

> Thanks - I'm trying to figure out how I can pass on all the

> great advice you are all giving without hurting my wifes feelings

by

> telling her I joined a support group that I can't get her to join.

> Any advice? I really wish I could figure out a way to get her to

> join this group. What made you decide to join?

> It all helps :>)

,

I joind this group because I felt sorry for myself and and didn't

think anyone understood what I was going through. It was my Doctor's

idea to look for an online support group as he said I would find it

easier to vent my true feelings about my life and how the PA really

affects me to those who also have the disease and because I don't

know any of you and I'm not face to face with you I am more likely

to be open and honest therefore getting a lot off my chest instead

of brooding on it and at the same time, getting support and some

tips for coping.

I have onlt been a member of this site for a short time and already

i feel better. I'm having surgery in a few weeks and the support I

have had from members of this site has really helped me come to

terms with that.

Hope it helps.

x

[Guest guest]

Hi ,

You sound like a terrific person and your wife is blessed to have someone as

thoughtful and understanding as you in her life. I think you are right to cut

her a great deal of slack when she behaves " badly " since pain and frustration

are really difficult loads to carry. Having said that, living with PA does not

entitle someone to behave abusively to the people who love and care for us. It

is NOT acceptable for us to strike out at the very people who give so much to us

to try to make our lives better and more comfortable. PA does not entitle us to

treat the people in our lives disrespectfully. You might need to sit down with

your wife at some point to tell that even though you know she is in pain, it is

not appropriate, especially where there are children, to use pain as an excuse

to be nasty and verbally abusive to others. I am not sure that you are doing

your wife a favor in the long run by letting her be mean to you - she may need

treatment for depression, pain or some other issues and striking out at you

doesn't provide the cure.

I fervently hope that you and your wife continue to find the joy and love that

binds you together and that she gets help for the problems she carries.

Best,

Kathy F.

Thanks, You're right on everything you said. My wife does tell me

how she doesn't deserve me and wishes she was healthy and we could

have more children, etc. It makes me feel better yes, and we have

had a great weekend the past two days.

[Guest guest]

, It must be hard, but you are right for pushing her to get out

of bed. I have discovered that with all the pain of getting out of

bed, the sooner I do, the sooner things loosen up and the pain abates

some. Stiffness is accompanied by pain. Anything to ease the

stiffness will ease some of the pain. There is pain that is not from

stiffness and it is easy to think we are better off in bed.

If you don't have one, try getting a recliner chair for her to use.

It will get her out of the bedroom but still allow her to recline

when she needs to. Over the weekend the cold was threatening to keep

me in my bedroom for warmth, hence in the bed. But a call came that

got me up, out in the cold air, and on to buying a car that took some

pressure off my shoulders and I was so elated with that relief, I

faced the cold for a drive to the store, first in many weeks.

While my being cooped in was logistically transportation first, I

can't shop for long, either and December is a no shopping time for

me. Plan events out of the house that take little or no energy but

that she would enjoy. Help her get dressed and ready. Make it very

easy for her. A quiet evening in a back corner of the local 's

is not a big deal, but it would provide a nonthreatening outing. A

movie or show if you have something in your area that would appeal to

her could do the same.

Get her up and when possible, out. But gently with all the TLC you

can offer. Beds are for sleeping. Invalid - person or adjective?

Being invalid is an invalid state - OK?

Wishing you luck with getting that dear little lady out, JudiRose

> Thanks Marti, it does help. I'm trying to convince my wife to join

> this group or one like it, and of course when she " wishes " her pain

> on me it is so I'd be able to understand when I push her too hard

> for not being able to get out of bed.

>

> Thanks for listening to me vent it helps more than I thought it

> would.

>

>

[Guest guest]

, Print out some messages that you think she would benefit from

(not this one, just yet) and leave them where she would be apt to

find them and read them. When we are miserable we don't think reading

anything could help, and certainly not as much as this groups letters

do. It is a way to put the help where she can read it without her

putting her name on a list.

And if that doesn't work, keep in touch. If you follow the threads

here, you can become a better caregiver by having a better

understanding of her illness. And that will help you both.

Hang in there. JudiRose

> Thanks - I'm trying to figure out how I can pass on all the

> great advice you are all giving without hurting my wifes feelings

by

> telling her I joined a support group that I can't get her to join.

> Any advice? I really wish I could figure out a way to get her to

> join this group. What made you decide to join?

> It all helps :>)

[Guest guest]

Terri

Is just hard for us to understand. I'd happily push my wife around

the mall in a wheelchair if that is what it took to be able to spend

time with her doing more than sitting around the house. I don't know

if it's the way I was raised, my personality or what but I'd have no

problem being a nursemaid to my wife if that is what she needed. I

deliver meds every morning before I leave for work, I call to make

sure she's up and ask if she's going to work. All I can say is meet

us half-way, it drives me crazy when my wife calls me at 4:30 to say

she didn't make it to work can I pick up our son at day care. I know

she knew at noon she wasn't going to make it, and wish she would

give me more than 30 minutes to rearrange my day. My wife is also in

the " screw-it " stage it's not easy I'm not sure if your scenario is

the same but hers is screw-it I'm not going to bother. Well I say

(and I know this is easy for me to say since I don't have PA, so

forgive me) Don't give up on yourself so easily, you won't know what

you can do unless you try, the beautifull summer mornings I make her

get out of bed and at least sit outside she does tell me I do feel

better. I can tell the days to just let her stay in bed, they tend

to come after days she tried to do too much!

[Guest guest]

It does , best of luck on the surgery. -

[Guest guest]

Kathy - we take each day one at a time right! Thanks

[Guest guest]

JudiRose - That is an outstanding idea! I have been reading some of

the threads and they do sound like things she could relate to.

Thanks I'll start searching for appropriate ones and give it a try.

[Guest guest]

Hi ,

Very much in agreement with Judi Rose here. Yes, it's

hard to get up and get moving, but the longer you're

down the harder it is to get up again! Pain may limit

our activities, but as you read here you'll find that

many of us participate in various therapies, yoga,

etc., activities that get us moving, keep us moving,

and help us find mental peace. Again, patiently,

gently entice her to emerge from her refuge and start

living again. It may be painful, but we only get one

opportunity to live on this earth, so it's up to us to

make the best of each day.

Blessings, Jane

[Guest guest]

Terri, You are not a bad mother, you are a mother with a bad disease.

I can't convince my Rheumy that I need anything but OTC because she

thinks I'm only experiencing OA. I know thatOA doesn't knock you out

like this. I understand where you are coming from - pain or no pain,

fatigue is part of our PA persona. I am lucky - my only child is

grown and on her own (with my three dear GBs), and I'm single at the

moment. I come home and rest, period. And if I decide what needs to

be done on Saturday is sleep, I sleep.

My boyfriend finally figured it out - first he had a bout with

cystitis (thats knocks the wind out your sails) and now is fighting

joint pain (OA?) and chronic Season Affect Depressive Disorder. When

he talks about sleeping there is no sexual inuendo there.

I won't wish anyone learn it this way, but sometimes it happens.

Perhaps you husband needs to read some of these messages from spouses

and care givers from this board. We want him healthy to help you!

I find the activities at church recharge my batteries, but that may

be the type of activities - I don't teach kids or chaperone the youth

group. I sing in several choirs and am in the Quilting group.

Appropriate activities, like these, to your skills and interest will

at least give you a change of pace. Might recharge the batteries.

Rest as you need to, JudiRose