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I can't do this anymore.

My husband has a ton of health problems: Charcot-Marie-Tooth, which leaves him in a wheelchair too weak to stand unaided; Psychomotor seizures; he is legally blind due to wet macular degeneration in his left eye, and the cornea in his right eye is being rejected by his body -- he has Fuch's disease, has had cataracts and both corneas replaced -- twice each -- along with retinal tears. He was diagnosed two weeks ago with early heart failure (fluid around his heart and a high heart rate -- he was shocked back into proper heart rhythm) and was in the hospital for five days. 

 

It's all gotten to him. He has been battling fatigue for years and today came out into the living room shaking and saying "This is it. This is it." He is now refusing to take his evening medications -- I'm trying to have him take at least the anti-seizure medication -- and only by some fast-talking has he agreed to see the cardiologist tomorrow. (I told him "Let's just hear what the doctor says. You don't have to take what he prescribes if you don't want to.")

 

He says he knows the only thing that they will do for him is put him on more drugs and he already takes 16 drugs and supplements on a daily basis. We know some of the drugs he's taking are the cause of his fatigue, but so far we haven't found a solution to that. He's afraid if they add any more drugs, his fatigue will be even more unmanageable than it is now.

 

And there is nothing I can do. We do have a caregiver who comes in M-F from 9 to 6, and he is a godsend. But when he isn't here, I'm the caregiver, counsellor, cheerleader, coach, and wife. And I am doing this while trying to find a job. I am 59, don't qualify for unemployment, and have been out of work since mid-April. The good news is I am getting interviews, the bad news is I can't focus on them when I'm dealing with him.

 

We're both introverts, so other than my husband, my only other person to talk to is my counselor and she's unavailable until the 17th. I have no other friends, partly by choice. 

 

I don't know what my husband wants, except out of his pain and fatigue, and I'm afraid of what he may do. I do know he can't get into his full medications -- they're in my office and he can't get into it, I only put out two full days' pills at a time. He's told me "not to do anything stupid" and I've told him as long as he's around, there is no chance of that.

 

He doesn't want to be put into a facility, and truthfully, I don't think he really needs one yet. When he's "normal", he entertains himself by watching movies and youtube videos. It's just that the last couple of weeks I think have broken his spirit. I'm trying to hang onto hope, but knowing he's broken and there is not one thing I can do to help makes me feel worthless. 

 

I don't know what to do. In the past he's told me "I don't know how you put up with this" and I've replied, "I don't have a choice." I'm stuck, I'm scared, I'm tired -- I'm looking after a super-stubborn man-child who won't do anything unless he wants to or it's his idea. And I can't talk to him right now, because he's in his unreasonable frame of mind.

 

Thank you for letting me vent.

caircair
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@cair124 I'm not sure that this will help but from my viewpoint you are doing a great job with your husband and I'm sure that he appreciates it. Life gets so much harder when health problems crop up and everything you once knew changes. Keep your spirits up by finding things that you like to do when you have time for yourself, while also realizing that you are doing the best that you can in your situation. I hope that your husband continues to improve and that you both have better days ahead. It's always OK to vent! Hang in there.

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UPDATE:

 

Later that afternoon he asked to be put into bed and since the room is dark he was able to get a good, long nap. When he woke up he was back to himself and in a much more reasonable mood. We had a good talk, me having a nice little breakdown and him realizing that giving up wasn't the answer. And for what it's worth when he said he was stopping his medications, he wasn't including the anti-seizure medications in that announcement. His anti-seizure meds he will take regardless, stopping them isn't an option (in his mind).

 

He has since seen the cardiologist and had an EKG and bloodwork done. Per the nurse, it appears he has atrial flutter and a slightly higher heart rate than normal (135-145 bpm), but it isn't consistently higher. We're adjusting his medications and are to keep an eye on his pulse and blood pressure over the weekend, then report to the nurse next week. She has also scheduled a chest x-ray so we can see if the fluid buildup around the heart is back as well.

 

Now that I know what's happening I'm doing a little better, especially knowing there are things doctors can do to keep him around for a while yet.

 

Meanwhile, I'm still looking for work but have had five interviews -- two of them 2nd interviews -- this week and have a phone interview set up for next Tuesday. I am hoping I'll be back to work by the end of July, being out of work is difficult since our culture says you are what you do. Because I don't do anything at the moment, I'm having a bit of an identity crisis.

caircair
Bronze Conversationalist

@cair124 I'm not sure that this will help but from my viewpoint you are doing a great job with your husband and I'm sure that he appreciates it. Life gets so much harder when health problems crop up and everything you once knew changes. Keep your spirits up by finding things that you like to do when you have time for yourself, while also realizing that you are doing the best that you can in your situation. I hope that your husband continues to improve and that you both have better days ahead. It's always OK to vent! Hang in there.

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Your reply couldn't have come at a better time. At 11:30 this morning, he asked me to call 911 because of extreme weakness and fatigue, plus horrible tremors in his arms. We spent the day at the nearest emergency room, where they did blood tests, an EKG, and a chest x-ray. The bloodwork was fine, the EKG shows the atrial flutter is back and his heart rate was way up again (highest was 145). The chest x-ray shows a bit of congestion in his lungs. They gave him Lasix (a diuretic) and Diltiazem by IV for the heart rate - at first, it wasn't working fast enough so they upped the amount, which then worked too well and sent his BP to 80 over 60 range or so. They stopped it and within a couple of hours, his heart rate was back up in the 135-145 range. Just as I left they were giving him Digoxin to see if that would bring the heart rate down. The good news is the tremors stopped pretty quickly once we got there, and the weakness seemed to ease up. The fatigue is still crippling, however.

 

He's deduced a big part of the problem with fatigue is that his sleep is not nearly as good as it was. He has complex sleep apnea (there are two types, and he has both), and his respiration rate at night is 14 - A few months ago it was 10 and he slept very well then. The higher the respiration rate, the less beneficial the sleep he gets. We're also pretty sure a part of his sleep problem is that he is getting weaker due to his Charcot-Marie-Tooth, which causes skeletal muscular weakness. Unfortunately, that includes the muscles used for breathing. He's going to check with his sleep doctor and his neurologist to see what suggestions they may have.

 

He's been admitted to the hospital tonight and will be there for at least a couple of days while they try to figure out the atrial flutter and heart rate problems. While I'm sorry it happened, in a way I'm glad it did because his cardiologist is on vacation and the earliest appointment they could give him was in mid-August, so at least now he's in good hands and the problem can be addressed sooner. It'll probably come down to medication changes.

 

It's been another "interesting" day. Luckily, I have two job interviews next week, so fingers crossed that I can find *something* before the end of September.

caircair
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