Asking for Insight from the "other side"

I am sure there are caregivers out there that have questions as to the best way to handle treatment of spouses, family members who are dealing of day to day health issues, pain for example. I am someone who is haveing to deal with learning to loose my independence as a 52 year old woman with an incurable disease that is slowly taking over mine and my family's lives. My husband and I have been together for almost 36 years. We still struggle with how to actually help each through this. It is a day to day learning process.

I am coming here to this group to try to get answers on how to talk to my husband and sometimes understand what he is going through. I know he loves me so much. I was diagnosed with this disease 11 years ago, will not get better, it is hard for him to talk about. He just goes silent. I feel guilty if I am showing too much pain or having a bad day where he actually has to take care of me literlly. You would think after all these years it would not be so hard, or maybe it is because we have been together all these years.

Thought I could get some insight from this forum.
Thanks,
Joyful50

Joyful50

[Sallysmart]

Hi Joyful, it is hard for the other spouce. My hubby and I kinda quit our jobs to go into home care (I was getting fired and we knew it so we let them take their course just to see what would happen, Brutal) so we would both not have to go out and work for anyone else for 8 hours a day because we knew it was gonna be hard to do for me down the road. I had experience in care and he didnt.
He bugged me and we finally bought a house that could support the job and now we are doing it, we have two wonderful handicapped guys living with us and we are our own bosses.
Hubbys reason for wanting to do it was so that if he had to care for me we would have the house that could support me and he could try to do it along with the job.
I am surprised cos he is the greatest caregiver I have ever worked with, he doesnt just do it for the money or the job, he loves our guys like they were his own and even picked jobs that he owns like feeding, shaving etc. and I thought I was gonna have to manage most of the work with him as a back up or helper only.
He does understand my pain but sometimes he forgets that it is there and I feel bad when I have pains that shoots so bad they make me holler infront of him, (and others).
My disease is neuropathy and it is not getting any better, actually more intense with the shooting stabbing zaps and even the normal minute to minute  growly constant pains have gone from a 2 out of ten to maybe a 3 most times. It is worse at night  and when I am out shopping for a long time or standing long. He does understand that and so he goes with me everywhere to do shopping or appointments and has chosen the jobs that take more standing or lifting. I also have pain cramp lock ups so driving is a problem so he drives all the time now and we used to share that.
I know what you are feeling because even if he does understand, you know he is confused and cant really comprehend whats really going on. Hubby has asked me how can you look so good and be in so much pain? It is a silent thing and unless people can see an actual deformaty in your shape and walk it is hard to see whats is going on. I have a deformed walk and gate now past three years and what really made him understand was when I was told by my old work place that I had to take a day long physio testing (cos they wanted proof that I was telling the truth and wasnt faking my walk and dissablities) and the results came out as me being 45 yrs old and having the abilities of an eighty yr old woman, my strengths were that bad, and my gate was widened and my feet do not move like they should anymore, cant lift toes and range of movements are shortened, achillies tendons are useless, no flex reaction anymore in either.

Anyway, you are best to tell him, even ask for a physio testing if it can be covered by your medical or work place or what ever else you could cover it with (is a 1500.00 dollar procedure). Or ask about getting it reccommended by your doctor to have it done at the hospital by a physio doctor. Also pain speciallists will test and ask questions and help prescribe and give you some results you can show if he is really having a hard time with it. I hate to say it but silent pain is hard to understand, I know because I used to be a workplace first aider and when people came to me with pain, I found it hard to understand, Always gave my people the benifit of the doubt but those in no pain cant see it being possible without a broken leg visable. Especially when you learn to live with it and try to deal with every day events and get by.
Long huh, sorry about that but I hope it helps you some. Take care.

[Joyful50]

Thanks so much for your info. You know it is true what you said about people not knowing how much pain you are really in when they can not see that you have a terrible disease. That is the same with this Mitochondrial disorder. I can look like I am fine but on the inside I may be in pain, for example.

I did go thru that physio testing. I had to to get my disability for work. They were going to let me go, but gave me  a chance to apply for disability first. It only took me 3 months to get approved, since this disorder has no cure. My husband understands when I am in pain. He also knows when I am in pain that I can not do much. He takes care of most household chores, goes to the grocery store. I just limited my driving this past July, so he drives everywhere now. I hated that.

I have the best caregiver I could ask for though.

[Sallysmart]

Yes, I have also got a great caregiver and when I cant do what we are doing anymore he will help me a whole lot more. we are hoping to retire early so that we can just do our own thing eventually, but for now his idea of going into caring for others was his greatest idea ever and he knows it. Neither of us has to go out to work anymore and we have a real life here at home. He does the grocery shopping mostly too, but we go out together to do stuff we dont often do when we can get the boys out to another caregiver for a day or a few nights.
You are lucky your company gave you the opportunity to apply, mine screwed me out of it but we knew that was going to happen so we got our ducks inline and now we make more then we did before leaving there cos we got two high end cases to work with and because of my exerience and his ability to take direction and work together we have the two greatest guys here and the work is actually a lot less then it was supposed to be.  I find the work with them ten times easier then it was to go out and work an eight hour day somewhere else and the plus is you can do your other stuff when you want and feel ok to do it. It is kinda like living at home raising your own two boys without having to have a job to go out to.
A lot of people ask how we can do it 24-7? I ask them how did you raise yer two or three  kids while having to go out 5 days a week to manage? Because we can do almost any case level we get our choice so we were able to pic two guys we could love as our own and that makes my life easy. I think I will last at this a long time where I was fast losing the ability to wake up every day when I had to go out and and work under someone elses demands.
I am glad you have yourself in a good place in life for this, it would be so hard having to deal with it any other way.
Just remember, if he dont get it some days or if you are grouchy because of your pains, try to understand him too.  I find myself getting grouchy and forgetting he is doing his best and he should have an off day too sometimes. One thing I told hubby once was, Just squeeze yer foot or leg one day for a whole day and when it feels like you cant take it anymore let go. Then imagine I cant let go, it is there all the time and for an extra bit of experience on this stab your foot with a pencils a few times too and then you know how I feel every day, and night. He does get it but he admits it is hard to imagine all that can happen and even why it can happen. He does see my abilities getting less and less as time goes by and he sees when I am having a really bad day too and I am glad he is here and he works with me.
Take care anyway and keep looking for info on yer disease because it is what helps us so much.

[Tuckamore]

Hello Joyful,

Please excuse my tardy response to your post. I was celebrating my wedding anniversary with my dear husband. We have been together for 35 years. What a ...let me borrow your name...what a joy it is to share our life.

Like you I am disabled. I have been on SSDI for almost two years but was actually diabled for almost 22 from a MVA. I was just too stubborn to quit until I couldn't go another step. So I understand your situation. My husband does much of the housework. I am ten years younger then he is and he retired early to help with the care of my dad as I could no longer do it alone.

Over the years (and continuing) there have been some real ups and downs...wondering if I would live through so many complications that keep rising. He takes on so very much and never complains. I can understand his challenges to a degree because I was there for my dad. But I honestly think it is a bit different between a husband and wife. We are soul-mates...in the true sense of the word. I imagine the same is true in your relationship.

According to my husband his biggest fear is that he will lose me. The second one is our financial well being. I can do with very little but he still wants to give me the moon. He doesn't understand that I have it with him.

I never miss a day to tell him how much I love him. Even when I am so angry that I could shake him! :)  I never miss an opportunity to say "thank you."  I often wonder if he feels trapped by my disabilities and limitations. We talk about it and he says he just misses the dances. :)  And indeed I do too.  

He knows me better than I know myself. When I am having a bad pain day and snap at him, he'll remind me that I am angry at my pain and not him. He also takes the time to explain to our friends and family that my pain controls our activities and some times my moods. He is a blessing and I never forget to tell him so.

Like you I look fine. And if you remember that old song, "It's not how you feel...it's how you look...and you LOOK MARVELOUS!"..that holds so true. My pain can be through the roof but if I 'look" okay than I certainly can't be in much pain. What a fallacy.  

Your husband may be much more "okay" with your limitations and disabilities than you are. It has to be difficult for them. But I beleive if the roles were reversed I would be as much support for my husband as he is for me. And don't forget that we can give hem so much support in other ways besides mopping the floor. I always do my best to help. He appreciates that and we find "sharing" a task to be very rewarding. I'll bet your husband is the same.

You and  I are not newlyweds...we have something much deeper than that. If I were twenties I may not have this support. But two ole soul-mates understand the journey through life and love comes with the goods and bads. I could dance but could I cook? And ask any fifty something male if he'd rather eat than dance and you'll probably hear eat! :)

Just keep the lines of communication open. Laugh whenever you can. We beleive that humor is a must for a good relationship.  

Please keep in touch and let us know how you are doing.

My Best,
~Tuck