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A plan
Old 08-29-2017, 05:02 AM
 
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OK dh had a couple of good days. This past week he apparently had a summer cold that mostly manifested in him as even more body aches than he already has. I was busy with GS. He had consumed mostly water and no Powerade zero. He has to eat salty stuff all day or his sodium gets too low (on top of everything else he had to have repair to his intestines...his esophagus goes directly into the small intestine his stomach was destroyed in a surgical accident).

So he went ballistic Saturday and nothing I could do was right. I was just a horrible person all the way around. There is NO strategy that works. If I stay quiet, he screams. If I leave the room, he screams, if I stay, he says I am bugging him. Its IMPOSSIBLE.

SO finally I woke up and realized he needed electrolytes. He hasn't had this in a long time but it is scary, his face swells and he looks like someone else. I said ok I'm going to Walmart of course he argued with. That let me know I was right on. When he argues with what he needs...that's low sodium and I have a couple hours before the heart gets affected and the potassium is right behind.

I bought 20 bottles and told him to get guzzling. He said if you say so since you're so smart. (He turns into the most sarcastic person ever)

I kept them coming and stayed away.

Next morning he was himself again and remembered nothing. He was a little weak.

I get tricked into forgetting his needs, as he seems so normal sometimes, because he tries to be. Its so rattling..to just be living life and boom you have a maniac living in the house who is like a totally different personality. Until I figure out what to do, I'm dealing with my own anxiety. Then I'm a little gunshy for a few days.

I made a checklist to use when he is acting up so I don't get upset and forget the Powerade and salt.

The only way I know this is from hospital visits, one time his sodium was low and he thought the clock on the wall was a sailboat about to run into him. Amazing what nutrients do for our brains!


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Old 08-29-2017, 05:18 AM
 
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I don't mean to be playing doctor, but is his problem more Alzheimers? I was surprised when my mom was diagnosed, but then it was like "how could I have not recognized it"? Also, UTI's sometimes cause hallucinations. You are correct that it is so hard to balance the body's chemistry!
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You truly Love Your Husband
Old 08-29-2017, 06:56 AM
 
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You are doing a great job taking care of your husband and his health issues. I think the checklist is a very good idea to help you keep track. I can certainly understand that it lapses your memory from time to time as he seems normal when he feels well and for years he took care of his own needs.

Is your husband eligible for any home health care help from Medicare? It might really help out to know his sodium level on a weekly basis and just have a professional check in on him and how you are doing as well. Just a thought. We all need help and support in life form time to time.

I am sorry he becomes verbally abusive when he is not well. My mother dealt with the same thing when my father got sick. It was ongoing for years and heartbreaking as they had been happily married for 50 years and he had always treated her well. I honestly don't know how my Mom kept going but I am positive she loved my father.

I hope you have some time each day where you can recharge. Take care of you.
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Old 08-29-2017, 08:57 AM
 
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You are both right...but he doesn't qualify for home health as long as this is only episodic. He has to be sent home on it from a hospital stay, the discharging doctor has to write the orders, yep we've been there done that.

Unfortunately I still had to manage all this on my own when we had home health. I even changed feeding tubes as the nurse couldn't seem to get it right. She just looked at me like what do I do? I was like oh here let me.

As much trauma as his body and brain have had, its almost impossible to truly know. Mayo clinic docyors even told us that..too many layers. Treatment is pretty much symptom control.

It could be early onset Alzheimer's setting in, yes. However, once again, I am his best and only resource. They have no facilities close by for patients who also have behavioral (?) issues. Yes I know, that makes no sense. He has long periods of clarity, too. Its like a short circuit in a lamp. It might work for months, then you bump it and it sputters until the connections are solid again. Its the central nervous system.

Also..he's so high functioning when we go for monthly Dr visits, and he goes outside every day so he is tanned, doc doesn't understand how I'll he is. Makes me look like a worrisome neurotic. Plus he ALWAYS has episodes on weekends I swear.
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Old 08-29-2017, 09:06 AM
 
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He sleeps a lot. So I get time to myself or I'd run away from home occasionally.


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(((hugs)))
Old 08-29-2017, 06:37 PM
 
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You do have a load on your shoulders. I think the idea of writing down the plan to deal with his episodes is an excellent idea. Also making sure you have the extra Power Aide drinks on hand and the salty foods he needs to eat. If you have a smart phone, could you possibly video him when he has a bad spell to share with the doctor?

You are such a loving care giver. There are several of you on the board here that set an example of unconditional love. My husband has been my rock this year through my surgery, pain, depression, and inability to do much of the house keeping or drive.

A few weeks ago I was having episodes of low blood sugar. I realized he had no clue what to do for me if I became unable to help myself. We discussed what to give me and how to use my meter to get a reading.
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Old 08-30-2017, 01:57 PM
 
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I know he would do the same for me, or at least make a good attempt I have had a couple friends suggest a " home" but then what's he supposed to do for three months when he's not symptomatic? Like we could afford that!

I have some excellent role models. I remember a lady who cared for her dad for years, he was very abusive but limited to his wheelchair so she just put earplugs!

I get so busy, and like today he's functioning well so I get complacent.

I wish I could just order a pallet of the zero aide. My niece has a son with Down's and thats what he has to have, too instead of water. He HAS to have the blue berry, too.

I never thought of videoing, that would be a good idea. If I can think of it.
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Old 08-30-2017, 07:02 PM
 
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There are so many nutrients and minerals that have this type of effect on our bodies. I had no idea my potassium was low when I was having problems with dizziness, weakness and confusion sometimes to the point of forgetting where I was driving (many times) for a few seconds. It terrified me and I was afraid to tell my doctor. Routine lab work revealed very low potassium and yep, those are a few of the many symptoms. Several years ago what doctors thought was the onset of dementia in my mom turned out to be low B-12.

Prayers continue to abide for you and your husband, always!


Nancy
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Old 08-31-2017, 12:32 PM
 
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Prayers for you! I have been my husband"s caretaker for quite a while now as you know! People are well meaning when they suggest things, but there are often reasons why the things they suggest can't happen.
Please know you are not alone in your struggles.
Sending prayers and good thoughts to help you stay strong. It's a hard and lonely job, but necessary and so worthwhile.
Hugs!
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