Coping with failing health

[jjquantz]

I've been following a few recent threads about health issues and didn't want to hijack them. DW is 56 and has had a lupus diagnosis for about 15 years. Up until about 12 months ago, she really didn't have any severe issues - an occasional flare and some constant (minor) joint pain. However, things have really begun to deteriorate in the past year. First, she has suffered severe loss of sight in one eye - almost certainly due to a side effect of a drug that she was taking to manage her other symptoms. She also has diminished night vision and a decrease in color acuity. She has stopped taking the guilty drug so the thought is that the eyesight won't continue to deteriorate. But, perhaps because she is no longer on the drug (or perhaps not, you never can tell with lupus) she is also now experiencing chronic severe pain that prevents her from sleeping and is starting to interfere with her ability to take care of daily tasks like dressing and cooking.

Things have sort of come to an emotional head now that we have returned from our trip to Italy. She is in tears any time someone asks about our visit to the Sistine Chapel - she wasn't able to make heads or tails out of the frescoes due to her poor eyesight. She has stopped driving because she has lost confidence in her ability. She's not sleeping well so that also doesn't help with her emotional stability.

Anyway, sorry to carry on. DW has said, "It would be different if I were 75." We are both struggling with how to deal with this unexpected transition but she has much the worst of it.

If anyone has any suggestions for dealing with these types of changes, I would be receptive to hearing them. Thanks, everyone for listening.

 

[Teacher Terry]

I am so sorry to hear about this. My Dad had a massive stroke that left him with brain damage and he became very depressed afterwards. It was terrible because like your wife he was not that old (59).

 

[Bestwifeever]

Sorry to read this. Hope her docs can at least adjust any pain medication she might have been prescribed.

 

[Ian S]

What a horrible situation! I wonder if there are lupus support groups that might offer some emotional and practical help ideas?

 

[MichaelB]

How unfortunate for you both. Ian S' suggestion to look for support groups is helpful. They can share valuable experience and often have good references. You also might reach out to your local health services dept, if you have one. They might have suggestions, references, and possibly even services available.

 

[haha]

I am very sorry that you and your wife are facing this difficult challenge. I hope things turn upward soon.

Ha

 

[GrayHare]

As much as you can, be your wife's eyes and ears so she can know what's happening in the world and with her family. Read to her, the newspaper or a book, if she enjoys that. Report to her on how relatives - and yourself - are doing. Arrange breaks from caregiving for yourself, and find someone else who will look after her while you are taking those breaks. Be ready to forgive when she is short with you - chronic pain wears down patience.

 

[euro]

Very sorry you both have to cope with this health issue. I assume you are working with your neurologist on a new disease management strategy? Was he/she involved in tapering off the first med?
Maybe there are alternatives - there used to be a big drought for new lupus medications, but I have read that there has been significant progress lately with an approval (benlysta, I think the drug is called) in 2016 and possibly others in later stage clinical development. I'm sure your doc will know more about what might be available/appropriate. Fingers crossed!
All the best to both of you!

 

[LARS]

That sounds like a really raw deal for you and your wife. I am truly sorry.

I sincerely do not want to sound flippant, but I think the only way to deal with such events is to quickly move to the acceptance state. It is what it is and you can't change it. (Other than being diligent on the medical front, which of course you should be.) And, just as important, it wasn't anyone's fault: so drop all guilt to the extent there is any.

Once you accept what is going on, you no longer waste energy with the why of it. Then all energy can be focused on maximizing opportunities for enjoyment.

I say this from the experience of dealing with my parents slow descent with dementia.

 

[Nemo2]

In addition to everything else, she is probably very distressed about the 'burden' she likely feels she is imposing on you.....it's just the way people react, but she needs to be reassured that you are a team and that you'll face things together.

Having, as so many other posters here have, lost a spouse to cancer I can truly empathize with your situation and hope that she goes into remission so that you can maximize your future years together.

All the best.

 

[bclover]

not sure if your wife has heard of this, but a friend of mine hangs out at lifewithlupus.org
it's very much like this site, an on line support forum. tons of information

Wishing both of you much love and health

 

[jjquantz]

Thanks all. I appreciate the responses. I hadn't thought about this in terms of the grieving process, but that does ring true. I guess we have lived in the denial phase for a long time about her disease. She would joke, "I have the annoying kind of lupus, not the kind that kills you." So moving on to acceptance may take a while, but I am sure that we will get there. I'll look into support groups, but I'm afraid we both may have some hurdles to overcome before we can go there, being introverts and all. We are working on the pain management front - that's the doctor we were seeing today and we'll be back in their office on Monday. As far as overall disease management goes, I think that we may need to do some self-directed research. I am not convinced that her current rheumatologist is up on the latest research.

Anyway, it feels good to release a little of this frustration - thanks again for listening.

 

[street]

I wish both of you the very best. All we can do is take one day at a time and enjoy life.

 

[MissMolly]

Per Lupus.org:

The general recommendation is to find a physician who is affiliated with a medical school -- a university hospital, for example. They are generally regarded as very good places to go for the diagnosis and treatment of lupus. These health care institutions may have faculty on staff who are involved in lupus research and are generally the most up-to-date on the latest advances in its diagnosis and treatment. Certainly the health care institutions with established reputations fit this description.

 

[bbbamI]

I can relate as I have dealt with a serious illness with my husband.

It's a roller coaster of emotions. Try to be patient. When you feel you are at your wits end, reach out to someone that will lend you a shoulder.

Hopefully she can get her pain under control. Once that happens, she will sleep better and perhaps her outlook will be a little brighter.

As our forum member street said...take it one day at a time.

 

[mystang52]

FWIW: I have a chronic disease (chronic lymphocytic leukemia). I am relatively fortunate in that it hasn't affected me that much, other than tendency to getting sick easily due to my reduced immunity. It's been 10 years now, but I still attend a monthly support group. It did wonders for me, especially in the first years before I reached that acceptance stage.
Also, just in case you have not done so yet, you should be certain your DW sees a lupus specialist. Treatment for my disease has changed DRASTICALLY FOR THE BETTER in just the last few years. The same might be true for lupus. If so, a lupus specialist is more likely to be in the know on the latest treatments. Don't presume a "general" lupus doctor has that knowledge.
I wish you and your wife all the best.

 

[ERD50]

Sorry to hear this, I didn't really have anything to add other than support group suggestion, and that was already mentioned. Then I saw your reply:

... I'll look into support groups, but I'm afraid we both may have some hurdles to overcome before we can go there, being introverts and all. ...

I'd suggest you call and explain that. I'm sure you are not the first introverts they have dealt with. They may be much more tailored to your needs than you may think.

Hope it goes as well as it can for you.

-ERD50

 

[daylatedollarshort]

Sorry to hear about your wife's health issues. I don't know anything specific about lupus but did have a disorder with some overlapping symptoms years ago and also was not improving at one point in tome. I'd kind of exhausted all the ideas for treatment from my mainstream, surgery and drug focused medical doctors.

Has your wife tried any alternative health medical practitioners or treatments, like Traditional Chinese Medicine or Western medical doctors with a holistic practice focusing on areas like nutrition and bodywork? This is what ended up helping me. I found the practitioners who helped me through recommendations of patients with similar issues in on an online support group.

 

[MRG]

Sorry to hear this, I didn't really have anything to add other than support group suggestion, and that was already mentioned. Then I saw your reply:



I'd suggest you call and explain that. I'm sure you are not the first introverts they have dealt with. They may be much more tailored to your needs than you may think.

Hope it goes as well as it can for you.

-ERD50

+1
There appears to be several online groups. It's hard for many folks to get out for any reason. Doing it online removes many barriers. Best wishes on life becoming manageable for you both.

 

[Sunset]

I am so sorry to hear about this. My Dad had a massive stroke that left him with brain damage and he became very depressed afterwards. It was terrible because like your wife he was not that old.

Sorry to hear about OP's wife at that young age. My father had the same issue as Terry's at age 56.
I wish I had great advice, but alas, in my father's case I was young, and got pretty frustrated and angry about the situation which didn't help, and is something I now regret.

 

[GoodWishes]

I am very sorry.

I have several health issues for years and I have seen many doctors. I found that doctors' knowledge and skill vary a lot.

For one of my problem, the first specialist didn't offer much help, the second specialist offered some options which I tried but said surgery was not an option, the third specialist did surgery. Not only that I recovered nicely in two weeks, this problem is now gone.

For another one of my problem, I now see a highly specialized doctor who is also a professor/researcher at a top medical university. This problem is under control which is already a big improvement.

The point being keep trying different doctors/medications, keep trying different options including alternative medicine, exercise (especially relaxing type of exercise like deep breathing), diet, etc.

Support group can be very helpful. Keep a positive attitude. Get plenty of help.

I wish you and your wife the best.

 

[spncity]

So sorry you are going through this.

Support groups - you may have to try more than one to find something that fits you. I don't think they even expect you to 'share' if you're not ready to do so. You likely need different support groups - one for your DW and one for you, the caregiver.

Google natural pain relief to see what might interest you.

I'm a big fan of soaking in a big tub of water to help physical pain and/or mental stress.

At different times for different things, DH and I have benefited from acupuncture.

Hang in there.

 

[athena53]

not sure if your wife has heard of this, but a friend of mine hangs out at lifewithlupus.org
it's very much like this site, an on line support forum. tons of information

Wishing both of you much love and health

I was also going to recommend on-line support. DH was on a forum for polycythemia for years; he even learned of the two experts in the US from that group and made a trip to Johns Hopkins to see one. He learned a lot. Right now I'm on one for people with Acute Myeloid Leukemia and their caregivers on FaceBook, which I joined after the polycythemia morphed into AML. I'm still on there because every case is different and people can learn from my/our experiences. You do have to prepare yourself for some worst-case stories. It's ideal for introverts, though!

What we've found over the years is that sometimes the best information comes from people who actually have the disease.

 

[Moemg]

So sorry to hear about your wife's struggles . Dealing with failing health is rough and even online support is better than no support and may help her find some options .

 

[littleb]

I was also going to recommend on-line support. DH was on a forum for polycythemia for years; he even learned of the two experts in the US from that group and made a trip to Johns Hopkins to see one. He learned a lot. Right now I'm on one for people with Acute Myeloid Leukemia and their caregivers on FaceBook, which I joined after the polycythemia morphed into AML. I'm still on there because every case is different and people can learn from my/our experiences. You do have to prepare yourself for some worst-case stories. It's ideal for introverts, though!

What we've found over the years is that sometimes the best information comes from people who actually have the disease.

OP

First, let me say how sorry I am about your wife having lupus. It seems she had many years in remission and now it is digressing into other areas of her body. Like many diseases lupus can be mild or severe. Also, you can have great times in remission and then the flare ups can be debilitating.

Education is helpful in understanding any medical condition. The recommendation of online lupus forums is a great idea to find people who understand completely what she is going through. Mentally and physically. She will even find out about new medicines or at home treatments that may help when the lupus is not in remission. She is an introvert which is perfect because you can become a member of a forum and participate when the time is right. Or she can stay a lurker but still learn so much about lupus. She will gain so much more by not feeling alone. Even with your support you cannot understand all the emotions that come when this disease starts attacking different parts of her body.

My mother was diagnosed with lupus at a later age in her 40's. She had a severe case and was never in remission. I understand the pain of watching someone you love go from strong and energetic to sick and wrecked in pain. I wish there had been more education 25+ years ago when my mother was diagnosed but it was not a well known disease back then. There was only support groups and like your wife my mother was an introvert.

My heart goes out to her and to you in trying to understand and support her during this time.