Dealing with the toughest period of my life these past 7+ months

[les26]

I can't get anyone to admit that they were the ones to increase her dosage, the physician assistant at the rehab place says that she checked back on the records and when they sent her and the records back to the assisted living place next door they said 1,000 mg. of Depakote, but the assisted living place said that they got the paperwork saying 1,500 mg. so they are both blaming each other. I told them that I should've been notified if they were changing her dosage, they call me about all kinds of trivial things but they wouldn't call me to say they were upping a serious med? I think someone messed up and put the wrong number down or into the computer and doesn't want to admit it, but I clearly let them know that I am not pleased with this and that it better not happen again!!! They probably are afraid I'm going to sue them...

 

[les26]

I got a call from the guy who runs the assisted living place, he checked into it and admitted that they made a mistake when they entered the dosage into the system. He said he disciplined the workers involved and even reported it to the state, so I got an answer finally.

But about 40 minutes ago the rehab place called to tell me that they are sending my Mom back to the hospital because her blood pressure and oxygen levels are low. She has had low blood pressure for a long time now so that's nothing new, but they have to watch the oxygen levels. We feel so bad for her, back there again, how much more is she supposed to be able to take??

 

[les26]

ER doctor said her AFIB is acting up thanks to this Depakote overmedicating fiasco, heart rate when she got to ER was 160 then 180 but with meds it was down to 120, so they think they are going to have to make some adjustments to the 3 heart meds that she takes as one does this but can cause that etc. I hope they can figure it out, and if she is having issues she needs to be in the hospital, but this is so so tough, and we didn't even tell my dad about it...

 

[Furballsmom]

wow, I'm so sorry all this is going on!

 

[neely]

I got a call from the guy who runs the assisted living place, he checked into it and admitted that they made a mistake when they entered the dosage into the system. He said he disciplined the workers involved and even reported it to the state, so I got an answer finally.

I'm glad he was responsible and did the right thing by admitting it was their mistake.

I hope they can figure it out, and if she is having issues she needs to be in the hospital, but this is so so tough, and we didn't even tell my dad about it.

It's probably best you didn't tell your dad because it would have only made him more frustrated or upset. Maybe wait until you know your mom is out of the hospital. I hope things improve and you can get even a brief period of respite.

 

[les26]

Now this morning my Mom called which surprised me but made me happy, but I was on my way to work and couldn't talk long but that was good! Then I got a call from one of the doctors and they said they did a chest x-ray and noticed a spot on her lung which they think is Pneumonia, and they think that is the reason that she was short of breath and her heart rate and AFIB went nuts, and that explains her cough from Sunday although they said her lungs were clear and it seemed to have gone away, but that explains a lot. He also said she tested positive for Covid again but I told him she tested negative a few days ago and she just had Covid 2 months ago, he didn't think it sounded right that she would get it again this fast so that has them a bit confused. Then I called her from work and tried to talk to her but that only ended up with me getting very upset as she can't hear me worth a lick, her hearing aids sit in the charger in her assisted living place, I was literally screaming at her over the phone while at work so that really made me look like an idiot, but I want to call and talk to her but in the future I'll have a nurse stay on the line and just translate to her what I am saying, I can't take that anymore....

A few people said I should sue them for their error but I have enough problems right now. A woman who works with me said she used to work there, said I should call the "ombudsman" and let them know what happened, I guess they are like a go between for people who have people in there and the facility? But I don't know what that would do and might even stir up more issues, I don't know about that. I just want her to get better and get back with my dad and live her life out with him the best that she can.

But even though they admitted the error and apologized I still have a few "embers" burning inside me about the whole situation, they should've checked and rechecked what they entered into the system and maybe this latest episode wouldn't have happened...

 

[les26]

Mom's out of the hospital and back to rehab next door to where she lives, she is doing better but of course tired and still on a bit of oxygen I assume because of the Pneumonia, but hopefully she will get there. Pop walked over with me to see her which was a great walk for him, but that did us all good. Hopefully she gets more strength and gets over this really rough time, bouncing back and forth from place to place.

And I also got a copy of the meds order so when she does go back to where she lives I can check it against what they entered into the computer, after that fiasco with the wrong Depakote dosage I do not trust them so I will go over it with them to make sure it is correct.

 

[les26]

Well now today I got a call from the PA and they said she was doing good this morning but after therapy she kind of got "glossed over" so they called the PA in, she said she asked my mom if she was okay and she said "I'm fine, honey", she asked her to squeeze her hand and she did but after that she didn't respond, so they asked me if I wanted them to do some tests there which they said could take a long time or send her to the hospital again, and as much as I HATE to send her AGAIN I told them to do it, she said she wants to make sure that nothing else is going on. Deb & I visited just yesterday and she was in good spirits, talking better, but just wiped out but look at what she has been through! And she still coughs a bit from the Pneumonia, plus they are trying to find a happy level for her meds so that her heart rate doesn't go too high but her blood pressure doesn't go too low, so those things can certainly tire you and trying to do therapy may still be asking a lot, hopefully she just needs more time and/or some adjustments but hearing this news felt like someone hit me in the head and stomach with a two by four, how much more can she take as well as Deb & I and my dad?

 

[neely]

how much more can she take as well as Deb & I and my dad?

When I didn't feel my dad was getting the best attention and medical care I looked into having him see a geriatric specialist. It made a world of difference. And when my mom started having health problems I had her see the same specialist. They not only evaluate and treat older adults but they work with the other family members to ensure the best treatment plan. What Is a Geriatric Doctor?

 

[les26]

Just talked to the nurse in the ER and he said they did a chest x-ray and it still showed Pneumonia so that explains a lot! I hope they clear it up BEFORE they send her back to rehab this time, seems like they rushed her out last time and she still wasn't over it, and we did notice her still coughing yesterday so hopefully that is why she was so exhausted and looked "glazed over", my gosh...CT scan was normal, said they are keeping her for her "safety" but it needs to be for a lot more than that, get her better and THEN send her back, don't rush it this time!!

 

[Furballsmom]

 

[les26]

Doctor today called and said she is doing better than last night but still not right, but he suspects it might be from some of the medicines and maybe still Covid related. I told her she had a seizure in October 2017, that was the only one she ever had as far as I know of, but did have migraine headaches and also most liekly rebound headaches but hasn't had any seizures and the headaches are almost non existent, so they are going to discuss if maybe the could reduce the Depakote dosage or try something else, but this has to come to an end soon so she can get back with my dad!!

 

[Furballsmom]

 

[neely]

I told her she had a seizure in October 2017, that was the only one she ever had as far as I know of, but did have migraine headaches and also most liekly rebound headaches but hasn't had any seizures and the headaches are almost non existent, so they are going to discuss if maybe the could reduce the Depakote dosage or try something else, but this has to come to an end soon so she can get back with my dad!!

This is just a suggestion so take it for what it's worth but you may want to ask them to get a neurology consult since seizures, migraines, and rebound headaches fall under the expertise of a neurologist. I speak from experience with one of my daughters. Best of luck and more special thoughts being sent your way for your mom and you.

 

[les26]

This is just a suggestion so take it for what it's worth but you may want to ask them to get a neurology consult since seizures, migraines, and rebound headaches fall under the expertise of a neurologist. I speak from experience with one of my daughters. Best of luck and more special thoughts being sent your way for your mom and you.

Yes they have an EEG scheduled to determine if there is any seizure activity going on and if not they are talking about either switching her to a less toxic drug than Depakote for the migraines or if she needs to stay on Depakote they are thinking of lowering the dosage, so we are waiting to hear about that. Doc called and said she was better today, actually could have a better consversation with her "without screaming at her" lol, so we visited after church and she was somewhat better, but sleeping but she said that she really slept good, so we are seeing what they say. But they still think it might be Covid releated, she had it over two months ago but tested positive last week which stumps them, but she does have a cough but they said the Pneumonia wasn't any worse on the x-ray, but she has been through a LOT in these last 2 months, but she does seem like she is slowly beginning to come out of it, just needs rest and time and to get the meds squared away and also get over the Covid which they say can linger for months especially at age 83.

Thanks!

 

[les26]

Well here's an update for those interested, Mom was doing better after having her Depakote reduced from 1,000 mg. to 750, more alert and talkative, everyone could see it so we were hopeful that she was on her way to getting stronger and walking again and getting back with my dad. 2 weeks ago today Deb and I vistited and thought we'd take dad over to see her and have a nice day, but when we went in her pillows were on the floor, she was constantly moving her legs and talking gibberish. I got the nurse and asked "what's wrong with my mother?" and they said she was fine that morning, sitting up in a chair and was reading, she ate breakfast, but now this was going on. They checked and said her heart rate was bouncing between 40 and 180, she was in AFIB again, had a fever, so they raced her off to the hospital for the 5th time in less than 3 months. We left there so confused and very upset, she was getting better now this, and to make matters worse the ER called soon after and said "your mother is very sick, she's Septic, what are her wishes, does she want to be resuscitated, I am sorry to have to ask you this..." I almost threw up and passed out, how could this be happening?? Then they called back and said if they can't get her heart rate down they may have to go through her neck and wrist with something, so this was just making us think that she was dying, we were so upset but helpless to do much of anything but pray. The next call was after midnight, woke us up and scared us both and we thought they were going to say she passed away, but the doctor told me that she is responding to the antibiotics and was talking more normal and said she has an infection somewhere but she is responding, so we felt better about that, but I didn't hear anything until later the next day and they told me that the problem was her gallbladder was inflamed and infected!! They said they had to wait a day because she was on blood thinners but they would do a low risk 20 minute procedure where they put a drain in the gallbladder to drain it, they didn't want to remove it yet so they did that, and it was unbelievable how much better she looked and was acting and talking, everyone was amazed including us. So now they are trying to rehab her again, get her stronger so she can walk with her walker so she can go back next door to the assisted living place with my dad. There are people who do live in another section of the rehab place, long term residents, and I asked if she doesn't get well enough to go back to assisted living can she and my dad live there and they said "normally we don't do that but I'm sure for you they would allow it, this is a special case" so we do have that to fall back on if needed, but we are hoping that they can once again get her stronger and walking again so they can live together the rest of the way.

Since February 12th she has had Covid, stomach flu, overmedicated for 3.5 weeks, Pneumonia, Parainfluenzia now this gallbladder issue. That is more than anyone should have to deal with, in and out of the hospital 5 times, the stress on all of us is just horrible, but hopefully now she is on the right path, and a lot of her issues seem to be clearing up and they feel it was from this gallbladder issue that they said must've been building up over time, but her heart rate and blood pressure is more normal now and hopefully now they can control things better with meds for her. They said the gallbladder issue was responsible for a lot of her problems, we shall see I guess.

My gosh......

 

[susanm9006]

So sorry, les26 . We went through similar with my mom for years. When they are older or fragile any illness can send them into a health tailspin. It is so exhausting for everyone involved.

 

[neely]

That is more than anyone should have to deal with, in and out of the hospital 5 times, the stress on all of us is just horrible, but hopefully now she is on the right path, and a lot of her issues seem to be clearing up and they feel it was from this gallbladder issue that they said must've been building up over time, but her heart rate and blood pressure is more normal now and hopefully now they can control things better with meds for her.

I completely agree with you that this is more than anyone should have to deal with and it takes a toll on those of us who have gone through caring for our elderly parents. But it's encouraging to hear your mom's health issues are improving and hopefully she can live together with your dad.

 

[rubysmama]

Sorry your Mom is going through all this, and by extension you and Deb. I'm sure you're at the point now, where your heart stops every time the phone rings. Sending hugs and good thoughts your way.

 

[les26]

I'm sure you're at the point now, where your heart stops every time the phone rings.

It was like that awhile ago, yes very much so! But the calls have calmed down since she is getting better, now they just call me to talk to me about things while I am at work on the road with sight impaired and blind clients and it drives me nuts!!