Help a Spouse

General
21

Thanks Leesa - would love to hear from your husband. I can assure you there are many spouses out there who probably would feel guilty about talking when their loved ones are the ones who are suffering from the PsA. I know I did for a long time. It has been an absolute life saver to find this forum - this safe place to talk about what I am going through and hear form both sides in order to really understand. Knowledge is power...and I get more powerful daily reading and learning about this.

Looking forward to hearing from your hubby.

JD

JD said:



Leesa415 said:

My husband has seen me at my best and at my worst. I've asked him to respond to this for you too, he lives with a wife who is bedridden at times, suffers a great deal of pain, and all the above problems every one else has mentioned. But believe me on ANY good day, I make sure I make it good for him/us and I go out even if it's not the greatest time for me, once I do I'm glad I did and it keeps our relationship strong too. It wasn't too bad when we first met, random flares quite a bit apart from one another, now it's more flares than not, and more pain, less sleep, and I am now facing two surgeries. (An ankle fusion and a total knee replacement) I will beat that too! lol maybe not physcially at first but mentally I will, it does help so much being here and seeing others have the same problems, I am so happy to have found this place, no one has ever understood me more than the people I read about here. It's been such a blessing! I try so hard not to blame or put my anger at my husband ever, and after 10 yrs of being together I don't think I ever have, I do cry a lot and go through times where I don't feel good enough and sometimes have felt he is 'stuck' with me-but then I tell my self that is ridiculous! but I have said once, "you don't deserve this" thank god he has come back with, "I don't deserve you!" I am here through thick and thin, better or worse, and I will always be here for you in any way that I can be, If I was in pain you would be there for me so why would I do anything differently than you?" It made me laugh and feel stupid lol. If your wife ever needs a friend who has what she has please let her know she can contact me......I'm leaving my email addy for you to give to her, I hope one day I can help someone through things I have already worked through. Lisa_ann42@hotmail.com you are all in my prayers!

22

Grumpycat and marietta.... good points! melatonin is miraculous... I've used it myself and it's awesome.

The other thing is that it may not just be depression, isolation, etc. If she's taking pain meds or prednisone these may cause the agitation. I know I can't take percocets... they make ma nasty (and I'm not!).

I feel for you... and hope someone here said something that can help your family heal.

Good Days.......

23

a lot of good advise! My two cents to go along with all you are doing? Remember what it was like when you started dating and try to bring back some of the "courting" rituals you had...... it may help her feel

like a woman again. I think this is something we all need to do once in awhile :)

24

This may have been suggested already as I haven't read every post on this thread - but have you though about couple/relationship counselling? I see a few people have suggested your Wife may be depressed and may well benefit from counselling herself, but she may be more inclined to do this if you suggest you both go and see someone, afterall the implications of PsA affects you both and so you are in this together.

Just a thought

Good luck :-)

25

Sorry, I see this was suggested already - i should have read more carefully.

26

I have to chime in and endorse what Marietta says. I clearly remember the feeling of being “broken” (and am still reminded often enough).

When you feel like that, it’s so hard to ask for help, because you feel you are admitting failure and that you can’t cope. Even offers of help remind you of what you can’t do and can make you really angry.

Given its been 4 years, and some of those behaviours are likely now entrenched, I would suggest like many others that counseling is a great idea.

But if you can just quietly do the physical stuff - and don’t underestimate what’s physical - most of us have trouble with a whole list of things, you will see them in posts on this site - there are less reminders in your wife’s day of what she can’t do.

It may also be worth re-examining your personal standards to see if there’s anything there you might relax to help.

For example, I’ve always been the food shopper and cook in our family. My husband has always had this thing that you can’t buy anything fresh (meat, fish, veg) from big supermarkets, and need to go to specialty stores. Also that you can’t buy fish one day and cook it the next. And that he needs to have one meal of Atlantic salmon a week. But not on weekends, because they are time for indulgent -ie fatty- food. (I know, fussy??!!!)

We both work long hours, leave home around 7 and return around 6.30. Before PsA, I’d just drive the extra half hour (our commute is an hour to start with) to the fresh fish shop that was still open to get the salmon. Now, after a day at work, I can’t even sit in the car while he drives there.

He’s adjusted his expectations - after all, fresh Atlantic salmon keeps really well in the fridge. Now we buy it on Sunday from the fish shop two blocks away, and eat it Monday night.

Lastly, it’s not unfair to let your wife know how you feel, and ask her to adjust her expectations as well. You might start, rather than by telling her to change, by letting her know how happy it makes you to be able to help her, even in small ways, and that sometimes you find it both heartbreaking and frustrating when she doesnt let you.

That’s how my husband got through to me - I realised that while I was sitting there thinking about all the things my disease has taken from him (I earnt a lot more, so we stood to lose the house too), I wasn’t giving him the things I CAN give while my body is broken - trust that he still loves me, and opportunity for him to help me, and keep our relationship growing.

It’s a long road, and I’m not sure what meds your wife is on, but finding one that works can make all the difference too. If either of you has been resisting certain meds (eg biologics) out of worry or fear, it really is time to reasses that in the context of the enormous losses a family breakup might cause.

I’m pretty sure everyone has given you lots to think about, I wish you the best of luck, and having had my dad react pretty much like your wife (un diagnosed, no meds that could have been causing it), I sort of understand it is very hard (though from a different perspective to you). Eggshells was the word my sisters and I used too.

I wish you all the best, and hope you find a way through.

27

Sorry, just saw the bit about infusions - so I guess reasessing meds is unnecessary.

I also wanted to say, that even though it probably doesn’t feel like it, your wife probably still sees you as the only real person in her life that even comes close to understanding. (sorry other forum goers - know you are real, and the support here is amazing - but you can’t do my grocery shopping :slight_smile:

Being that rock is such an important thing for her, and you need to remind yourself occasionally of what a wonderful person you are to be that support.

28

OK - just getting this forum thing figured out and know now that I can reply to each person or everyone at once. My apologies for being so thick headed and not seeing this sooner.

@Redhedgurl63 - Thanks for the kinds words and ideas. I spoke with my wife about the Canadian thyroid and she is happy with what she has now. Sounds like you have the hating pad thing figured out...my wife used to use them and, I used to warm some of the bean filled ones up in the microwave nightly for her, but she has stopped both for the time being. I really dont know why other than to guess she felt like she was being taken care of and didnt like the feelings it was causing. She told me it was just more annoying than anything else...I guess I should take that at face value.

Hope you have a fabulous Monday! Thanks again.

Redhedgurl63 said:

I agree, you are a great hubby for writing and caring!

I'm blessed with an understanding husband who has had to deal with panic attacks, weeping fits and anger bursts. It comes with the territory, I'm afraid. I second that perhaps counseling or even mild anti depressive therapy might help. I know I get really down somedays, and while I don't take prozac or anything, I do take tramadol, which boosts mood and energy while fighting pain. I've tried to go without, but darned if this stuff just hurts too bad to be natural. It sux.

yes, the heating pad. That wonderful friend! I keep mine curled up by my side of the bed and use it all the time.

Also, I noticed you mentioned synthroid. I have severe thyroid disease, had it since birth whole family has it. I found that synthroid didn't do diddly for me, and switched to Canadian Armour Thyroid, I mail order it. It has T3 and T4, and works like no other thyroid med ever has. You'd have to pry it out of my cold, dead hand it's so effective!!!

It sounds like you help her a lot, so it's not fair that she should be angry, I understand your confusion. I think doing group doctor visits and some counseling would be a great idea, and wish all of you the best.

29

Hi Jen,

No apology necessary - its tough going through all of the feedback and remembering what folks have suggested. All good ideas and we have/will certainly try them all at one point or another. I think that is what I find so inspiring about this forum and the human spirit. We just keep trying...some days it works, others not so much!

I REALLY hope she feels that I am the rock. I feel like I have been just the opposite lately and she has been cranky as she cant deal with me/my pain(mental) and hers. I just need to man up and get my swagger back!;)

Something has changed lately for the better. Not sure what it is yet but I will write about it once I have it figured out.

Take care

D

Jen said:

Sorry, just saw the bit about infusions - so I guess reasessing meds is unnecessary.

I also wanted to say, that even though it probably doesn't feel like it, your wife probably still sees you as the only real person in her life that even comes close to understanding. (sorry other forum goers - know you are real, and the support here is amazing - but you can't do my grocery shopping :)

Being that rock is such an important thing for her, and you need to remind yourself occasionally of what a wonderful person you are to be that support.
30

No apologies needed here Aimee - I appreciated the ideas. I did mention it to her. Her response was that I need to go work on some thing more than she does ( of course this was said with a very angry raised voice and look of death in her eyes). I said "OK" I will go for awhile and work on me if you will consider coming and working on "us" later. She reluctantly agreed. I haven't mentioned it since but I do share with her my experience at the therapist and I do think that inside she is listening and understands I'm not trying to push her or make her angry...that I am really trying to help. Only time will tell.

Hope your Monday Rocks.

JD

Aimee said:

Sorry, I see this was suggested already - i should have read more carefully.

31

Robert,

You said it brother. Thanks for sharing. I try and let my wife know that every day.

"I will say that the most important thing to me is my wife and my wifes most important thing is me. However, that has nothing to do with being healthy or having PSA."

Robert said:

Hello! I have PSA and have been on Enbrel for 12+ years, also, pain meds and started mtx injection. Also, I have been married for 13 years.

It's hard to live with psa and equally hard to take care of someone who has it. For the first 10 years I pretended like I was "normal". I ran a landscape company, partied all the time, I smoke, I just never stopped...now I'm paying for it and it isn't easy to deal with!

About 2 years ago I started getting tired (I'm now 40 by the way). I sometimes have to take a nap and then I'm up all night. It's a vicious circle. Somtimes, when I lay down I feel so uncomfortable I want to pull my skin off. It helps me to sleep with a pillow between my legs, or to sleep on the couch. I still flop around a lot but, atleast I don't interupt my wife. Point being...I let my wife know my thought process so she knows I'm not trying to get away from her just getting comfortable.

I may not be the most intuitive, I am a guy-guy, but, I know it is't easy for my wife either. She is 8 years younger than me and has had to deal with my psa as well. Sometimes she will hide her pain/illness thinking I am in pain all the time hers isn't important enough to mention. Like you, she has to revolve her life around what I can or cannot do.

I do try to humble myself when it comes to my wife and I direct most of my anger to anyone else that gets in my way. This may not be benificial to them but, happy wife....I am sorry your wife has to deal with this and hope she finds a way to cope with her pain and fatigue. I wish I could tell you the secret but, there isn't one.

I will say that the most important thing to me is my wife and my wifes most important thing is me. However, that has nothing to do with being healthy or having PSA.

32

FWIW its worth JD, we have a small microwave and fridge in our bed-room. We started it when the kids were home as it provided snacks and privacy, now its just convenient Now my wife or I throw the heat sock in it when walking by (or a pizza) as much as I enjoy the heat thing an electric heating pad is not the same. Using the downstairs microwave was a hassle either I didn't feel up to it or felt guilty if my wife did.

33

If my spouse told me to go to therapy to work on my issues related to disease I too would stare at him with death in my eyes LOL I've got enough to deal with! However, I'm very good at reaching out and finding my own supports. I have NEVER had luck with a therapist understanding chronic illness, and I've tried, many times, to find someone. It made me feel worse every time, just reinforcing that no one, not even therapists, get it.

JD said:

No apologies needed here Aimee - I appreciated the ideas. I did mention it to her. Her response was that I need to go work on some thing more than she does ( of course this was said with a very angry raised voice and look of death in her eyes). I said "OK" I will go for awhile and work on me if you will consider coming and working on "us" later. She reluctantly agreed. I haven't mentioned it since but I do share with her my experience at the therapist and I do think that inside she is listening and understands I'm not trying to push her or make her angry...that I am really trying to help. Only time will tell.

Hope your Monday Rocks.


34

My husband and I tried speaking to a therapist a few times (2 different ones), and they all focused on how I could do better with my illness. It pissed BOTH of us off. Ugh.

JD said:

Hi Marietta,

thanks for the feedback. to be clear - I certainly didnt tell her she needed to go. Actually suggested we go as our communication has been lacking of late. it is certainly helping me.

thanks

Damon

Marietta said:

If my spouse told me to go to therapy to work on my issues related to disease I too would stare at him with death in my eyes LOL I've got enough to deal with! However, I'm very good at reaching out and finding my own supports. I have NEVER had luck with a therapist understanding chronic illness, and I've tried, many times, to find someone. It made me feel worse every time, just reinforcing that no one, not even therapists, get it.

JD said:

No apologies needed here Aimee - I appreciated the ideas. I did mention it to her. Her response was that I need to go work on some thing more than she does ( of course this was said with a very angry raised voice and look of death in her eyes). I said "OK" I will go for awhile and work on me if you will consider coming and working on "us" later. She reluctantly agreed. I haven't mentioned it since but I do share with her my experience at the therapist and I do think that inside she is listening and understands I'm not trying to push her or make her angry...that I am really trying to help. Only time will tell.

Hope your Monday Rocks.


35

I have no new advice to add, but just want to say I commend you for caring enough to want to understand and help your wife and daughter.

May God Bless your family

36

Thank you Alma! Much appreciated. Blessings to you and yours.

JD

Alma said:

I have no new advice to add, but just want to say I commend you for caring enough to want to understand and help your wife and daughter.

May God Bless your family

37

JD - It’s great that you’ve hit the forums to try and understand the mental challenges of this disease.

I think for many people with this disease it feels like your own body betrays you. As a female, I think that many of us can’t help but envision how disabled we could be 2, 12 or 20 years down the road, and that’s really NOT SEXY.

As you already know, the disease makes us mentally and physically fatiqued. Helping with the kids and chores around the house should be a great relief for your wife. Helping her eat healthy and stay fit could relieve some symptoms too. To be frank, women have a lot to do to stay prepped for intimacy, so anything you can take off her plate could help in that department.

If she’s distant, it’s probably because she’s stuck having a battle inside her own head, worrying about the future (us girls have a tendency to do that). In my experience, we have to be allowed the time and freedom to go though a grieving period for the loss of our old healthy selves. If that period is put off, or life is too busy to allow for it, the depression just persists.

Even though it’s been 6 years, she obviously still hasn’t come to terms with her new lifestyle. I do believe that IT WILL GET BETTER if you can remain understanding and help her battle through.

Communication is key, but you know that.
If your conversations are too emotional, have you thought about writting her letters?
That way you can gather your thoughts, say the right words, and she can take in what your saying slowly and as many times as she wants.
This has improved my relationship as emotions can make things tense.

Hope you both are doing well.

38

Thanks GeriMar - much appreciated. Looks like I had turned off the reply reply on the other thread when I was messing around. Apologies

I love the idea of writing her. I will definitely do it. Sometimes its better to remove emotion from a conversation to really listen to it and let it sink in. The advise and thoughts here have really helped me understand that. When things are said in anger and frustration, the meaning and intent tend to be buried under it all. In addition, I tend to personalize things things when in reality its just my wife letting go of some of her hurt - her pain. Sometimes it is about me, mostly its not. It doesnt make it right, but it is what happens and I'm learning to just let it roll on by.

I will definitely help her fight...its the only way we can make it. I'm learning to be a better man, a better father and a better husband as a result of all of this. All of you have had a part in that and, for that ,I am truly grateful.

"You either do or do not, there is no try"

Thanks for sharing.

JD


GeriMar said:

JD - It's great that you've hit the forums to try and understand the mental challenges of this disease.

I think for many people with this disease it feels like your own body betrays you. As a female, I think that many of us can't help but envision how disabled we could be 2, 12 or 20 years down the road, and that's really NOT SEXY.

As you already know, the disease makes us mentally and physically fatiqued. Helping with the kids and chores around the house should be a great relief for your wife. Helping her eat healthy and stay fit could relieve some symptoms too. To be frank, women have a lot to do to stay prepped for intimacy, so anything you can take off her plate could help in that department.

If she's distant, it's probably because she's stuck having a battle inside her own head, worrying about the future (us girls have a tendency to do that). In my experience, we have to be allowed the time and freedom to go though a grieving period for the loss of our old healthy selves. If that period is put off, or life is too busy to allow for it, the depression just persists.

Even though it's been 6 years, she obviously still hasn't come to terms with her new lifestyle. I do believe that IT WILL GET BETTER if you can remain understanding and help her battle through.

Communication is key, but you know that.
If your conversations are too emotional, have you thought about writting her letters?
That way you can gather your thoughts, say the right words, and she can take in what your saying slowly and as many times as she wants.
This has improved my relationship as emotions can make things tense.

Hope you both are doing well.