pepperbird Posted April 30, 2019 Share Posted April 30, 2019 A question for anyone who has a spouse/ long term partner with a chronic illness. I know me being sick is hard on my husband, but he never really complains about it that much. Does anyone have any tips for making this a bit easier on him? This illness isn't going to go away, so I'm trying to look at the long term. I'd like to minimize the impact this has on our relationship. Link to post Share on other sites
todreaminblue Posted May 1, 2019 Share Posted May 1, 2019 (edited) let him love you and on your good days.......do something special for him to show your appreciation of his heart and all his efforts....its the little things in life that can mean so much...so do little things for him that mean something to both of you...set aside a weekly night where its just you and him reconnect with him without technology somewhere beautiful.....that is special again for both of you.......... write him a love note and put it into his wallet for him to find when he isnt with you.....tell him what you appreciate and love about him...not all at once but regularly on a daily basis....something he has done that you so appreciate... he loves you ...accept his love in the giving he does for you ..for the sacrifices he makes to care for you.....and give back what and when you can......random acts of kindness doesnt have to be only for strangers you can do random unexpected kindnesses with the one you love so much i think the oldest vows are the sweetest in regards to marriage that part where you look into your special ones eyes and say in sickness and in health ....its an affirmation...that is so true.....marriage is about being all in..... in sickness and in health through good and bad times...laughter and tears...side by side.....i wish you peace and happiness and the love you deserve and already have.....deb Edited May 1, 2019 by todreaminblue 2 Link to post Share on other sites
mark clemson Posted May 1, 2019 Share Posted May 1, 2019 Sorry to hear about that PB. If you require caregiving that he performs, consider hiring/allowing someone else to pinch hit some of the time. (If that would be expensive suggest talking to him first just to be sure he agrees.) Agree with TDiB about showing appreciation - can go a long way IMO. Let him take some time for himself occasionally if he doesn't do that already. (Note - this isn't something I'm speaking from experience on.) 3 Link to post Share on other sites
preraph Posted May 1, 2019 Share Posted May 1, 2019 So is this illness keeping you from doing your fair share around the house or working? Trying to get an idea of how much you can't do. I had to take care of a relative's whole life for several months, which drained my bank account and made me exhausted as I also worked two jobs. I was not at ALL happy to find she was malingering the last couple of months when she could have been home taking care of her own pets and making money. She wasn't cooperating with rehab or respiration therapy or anything really. She had an excuse when she first went in and for about four months of really bad illness that was life-threatening, but after an operation, she was in a position to rehab. Instead, she was just acting like she was at the Four Seasons getting waited on and was feeling comfy, I guess. So don't take more than you have to. Do as much as you can. Do like Mark's idea to occasionally hire some relief. Give your guy a day off so he can have a somewhat normal life and let him do whatever he wants to on that day off, but be sure he gets out of the house regularly. 1 Link to post Share on other sites
snowcones Posted May 3, 2019 Share Posted May 3, 2019 Along with what people suggest here, I suggest you ask him. He will be the best source of information. Link to post Share on other sites
Author pepperbird Posted May 3, 2019 Author Share Posted May 3, 2019 Thanks for all the responses. I have scleroderma ( systemic sclerosis) . It's a somewhat where autoimmune disease where your body attacks itself and then tries to repair the damage by laying in collagen. It attacks your joints, kidneys, heart, lungs, skin , teeth and capillaries. It's in my lungs, esophagus, eyes, hands and it's also making my teeth fall out so I've been having to have them removed. The treatment ( for now) in heavy doses of immunosupressants, blood pressure meds ( for the raynauld's in my hands) and a bunch of other meds, and cannabis oil spray for the pain. A stem cell transplant is in the future, but I'm hoping that by then, they will have advanced the procedure. a bit better. I also have Sjoren's syndrome, which is also an autoimmune disease that attacks your tear, salivary and other glands. It's not so bad yet, but it sure does make you tired! Combined with the lymphoma ( third biopsy was positive) and one ends up feeling like crud. My husband has been really good about this. Yesterday, I had to go to the dentist and have six teeth extracted. I am so damned sick of all this, and I hate going out in public right now, because I think I look awful. He picked me up an Orange Julius ( I can't eat solid food right now) and tucked me into bed so I could get some sleep. To me, that was a nicer gift that anything he could have bought. Link to post Share on other sites
schlumpy Posted May 9, 2019 Share Posted May 9, 2019 My wife has Multiple Sclerosis. Up until two years ago she could still move around the house then her knee went bad which limited her mobility. The pain became so severe that she fell one day and broke her ankle which was repaired by surgery. She rehabbed for six weeks. Six months later she fell once again and broke her femur which necessitated a partial hip implant. Another lengthy period of rehab followed. Now she is limited to going from the couch to the bathroom with my help. The knee is still a problem that may not resolved for another year. There is a lot of mental and emotional adjustment as my role as a husband is being displaced by my role as a caretaker. So far we are handling the situation and I do not feel sorry for myself or resent my wife. This is not her fault. It's just life and life is messy. 3 Link to post Share on other sites
alphamale Posted May 10, 2019 Share Posted May 10, 2019 pepper, before I reply I need to know which illness? Link to post Share on other sites
Author pepperbird Posted May 11, 2019 Author Share Posted May 11, 2019 This is not her fault. It's just life and life is messy. MS can be a really hard go, for both your wife and you too. From what I understand, it's also believed to have an autoimmune component. I hate feeling this way. I can handle the illness, but I hate feeling like my body's letting me down. I'm not ready to pack it in yet. I have too many things I meant to do. Link to post Share on other sites
Author pepperbird Posted May 11, 2019 Author Share Posted May 11, 2019 pepper, before I reply I need to know which illness? I have systemic scleroderma ( sometimes called systemic sclerosis) as well as Sjoren's syndrome (sp.?), lymphoma and something my doctor's can't identify yet. As crappy as I feel, I still consider myself lucky. This could be so much worse. Link to post Share on other sites
schlumpy Posted May 11, 2019 Share Posted May 11, 2019 "I'm not ready to pack it in yet. I have too many things I meant to do." My wife has similar feelings. She was diagnosed in 2000. I've watched her decline over the years. She retired from work early. Reluctantly she relinquished her car keys. Our summer day trips around the state came to a halt. Everything is multiple times harder for her to accomplish and there is nothing I can really do about it except to be there. It certainly wasn't how I had imagined our retirement years ending up. Link to post Share on other sites
alphamale Posted May 12, 2019 Share Posted May 12, 2019 I have systemic scleroderma ( sometimes called systemic sclerosis) as well as Sjoren's syndrome (sp.?), lymphoma and something my doctor's can't identify yet. As crappy as I feel, I still consider myself lucky. This could be so much worse. are there any support groups in your area or even online? you could ask around and see what people did for their spouses. actually, anyone who lives with a chronic illness may be able to tell you give you advice on helping a spouse Link to post Share on other sites
schlumpy Posted May 12, 2019 Share Posted May 12, 2019 Pepperbird: I'm not sure what type of advice I could offer your husband. Even though in general our situations may be similar there are too many small things influencing a personal relationship that can become more or less meaningful as time goes on. It took years for my wife to get over the fear that her illness would drive me away. She even asked me if I was ashamed to be seen with her in public. I had to constantly reassure her that I was in for good. I was a bit hurt that she would think that of me but it was a good thing that she expressed her fear so I could respond to it. My wife is limited in mobility but I'm assuming you are not. As her world has diminished, so has mine. If we go somewhere she has to use a wheelchair unless we can rent one of those electric scooter things like at the zoo. I'm not comfortable leaving the house for more than 3 hours at a time without her but I am lucky in that my interests are more on the intellectual side of life than the visceral side. I read extensively, play folk guitar, and bicycle for exercise when the weather permits. The one thing I insist on from my wife is that she treat me like a husband and not a caretaker. When I help her dress, I want to always see my wife with desire - not with clinical detachment and she can go a long ways in making sure that happens. I hope this helps and I am sincerely sorry for what is happening to you. 1 Link to post Share on other sites
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