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Tired and blue...
Posted: Sunday, December 8, 2019 1:25 PM
Joined: 3/15/2018
Posts: 304

I’m low. And we haven’t begun to hit the hard days yet. As we’ve walked through the last couple of years I’ve felt blessed that my DH has maintained his cognitive skills as well as he has. The meds have carried him well but I’m now seeing the digression has overrun their effectiveness. He’s been doing so well that I started working on my doctorate at the beginning of the year. Then I started getting seriously sick from a lung disease (possible pulmonary fibrosis) caused by my rheumatoid meds. Between my own sickness, my husband’s slow progression, and my fear that I might die within a few years, the stress undid me and I had to quit school. After a lung biopsy I was given the good news that my life wasn’t yet in danger, a huge relief. The last thing I wanted was for my kids to have to take over the primary care of their father, both girls working as high level professionals. All this to say, I’m feeling like I’m in limbo. And exhausted emotionally. And I have yet to face what the majority of you are currently facing. I know what’s ahead and today it looks like a mountain I have no capability of climbing. I know today is just today. And that the Lord’s grace will strengthen me. But it just helps to have you all put there to talk to. You get it. And for that I’m thankful. It is good knowing I’m not alone in the journey. Thank you all for this forum!
Joe C.
Posted: Sunday, December 8, 2019 2:16 PM
Joined: 10/13/2019
Posts: 177

SSHarky, I hope that you may find the strength to deal wish your own health issues as well yours husbands and wish you find some happiness in your journey.
Posted: Sunday, December 8, 2019 2:35 PM
Joined: 3/15/2018
Posts: 304

Thank you Joe C. I appreciate your kind words!
Posted: Sunday, December 8, 2019 2:48 PM
Joined: 5/7/2018
Posts: 362

I also have rheumatoid arthritis and was caring for my DH until he passed this September. It is hard since RA causes fatigue. And stress causes RA to get worse. I really feared I would go before my DH did, but things turned out differently. It is very important that you care for yourself as well. If possible, try to find other people to help out for a few hours. If that isn't possible, see if there is an adult daycare that you can take him to even for one day a week.It is important to get rest when your body needs it. I wish you the best.
Posted: Sunday, December 8, 2019 3:02 PM
Joined: 4/2/2018
Posts: 2268

It really sucks that you had to quit school. This disease doesn't ever get enough of us. I'm sorry.

Ivcatlvr, I hope you can take your own advice about taking care of yourself.

Posted: Sunday, December 8, 2019 3:09 PM
Joined: 3/28/2018
Posts: 305

Hi S,

I have been thinking about you a lot over the past few weeks and wondering how it has been going with you and your DH.  I am so sorry that you had to quit school.  I know how much that was helping you feel like you were still part of the outside world.  I totally understand everything that you said...I am tired all day; living the next several years in limbo seems daunting; substitute a different health concerns for me; and still trying to figure out plan B for my daughter. So glad that the lung biopsy was good news, but I would imagine just dealing with the RA daily is stressful all in itself, not to mention being a caregiver.  You are in my prayers for that peace that passes all understanding!

Posted: Sunday, December 8, 2019 3:41 PM
Joined: 3/15/2018
Posts: 304

So true Ed and Ivcatlvr! I know a lot of this is fatigue and top of emotional crashing. Self care has never been one of my stronger skill sets. I just took a nap. Amazing what a little sleep can do! Appreciate you guys!
Posted: Sunday, December 8, 2019 5:47 PM
Joined: 3/10/2019
Posts: 132


 I know this is an AD forum, but I also have rheumatoid arthritis and am curious about which medication caused the lung issues?  I take methotrexate.

Solo caregiving was so stressful and caused so much sleep deprivation that I could only do it for about six months after DH reached the moderate stage.  My RA flared up, I had suicidal thoughts, no sleep, blood pressure spikes and panic attacks.  While all that was going on I was also working full time plus doing all the cooking, laundry, shopping, trips to doctors appointments, managing his angry outbursts, obsessively researching Lewy Body and other dementias... It was all too much.   

I think I've recovered somewhat since he moved to memory care.  I can sleep and keep up with my work now.  But the financial worries are looming on the horizon.  He has enough money left for about eight more months of MC.  

So yes, I hear you about feeling low.  Each phase of this process seems to bring its own unique miseries and joyful moments are few and far between.  Good luck to you.

Posted: Sunday, December 8, 2019 6:56 PM
Joined: 3/15/2018
Posts: 304

Lizzie, all prayers are greatly appreciated! Thank you so much! 

CatBallou, yes it is methotrexate. I’m dealing now with Interstitial Lung Disease. It was a serious wake up call for me. It that’s the only thing you’re on, I can’t imagine how uncomfortable you must be. The pulmonologist had me drop it completely. Working with my rheumatologist I am currently on Enbrel self injections, Celebrex for fibromyalgia pain, plaquinil twice a day along with several  OTC supplements he wants me on. I can tell the difference being off the methotrexate, but all in all I’m ok. I now have a cardiologist appointment coming up. I was doing so well on the regimen I forgot how this is a systematic disease that effects eyes, lungs, and heart too. So no more! I’m going proactive! 

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