She's been diagnosed with congestive heart failure again. Her Atrial/fibs are still there and her chronic high blood pressure is still not under control. That is what the first ER doc thought she had, congestive heart failure, but because she got better he changed his diagnosis to A/fibs and referred her to a heart specialist. She has an echo on the 27th. While the doctor last time was more hopeful, the ER doctor today told my sister that nothing can be done to fix it, and that she will continue to get worse with each attack. I'm glad she is going to a Specialist and I do hope their is some hope left for her.. She is in urgent care right now, and her feet are very swollen and she has fluid in her lungs again. This time her fluid isn't draining off as fast as the last time. I'm really quite worried and live hundreds of miles away from where she is, so if something should worsen I will have to find a way to see her.
One of the drugs she's on for her heart causes swelling in the hands and feet, this drug is supposed to control the A/fibs and her blood pressure, but it doesn't seem to be doing either? She is also on an additional heart drug but nothing is helping. I hope she gets in to see the specialist sooner.
I'm so sad and wish she would get better.
p.s she was a little more with it in the last two weeks but still was forgetful and confused. I don't know what to think anymore?
I am so sorry your Mom is back in the hospital. I do understand that helpless feeling of being hours away. It is difficult to deal with not knowing exactly what is going on.
I do hope your Mom gets some relief from her episode and improves. Hopefully the heart specialist can come up with an action plan that will be beneficial to her. Keep us informed and know I have you and your mom in my thoughts and prayers...
Thank you Deb, and yes, I do feel helpless but I'm hanging on to the hope that mom will get better. She is so unhappy and that isn't changing and inspite of our efforts to make her happy, there is nothing we can say or do to make her happy. Even after they fixed her up the last time and released her from the hospital, she had nothing positive to say, all negative, she is so unhappy and some of it does have to do with her health that she must still be aware of. If only we could help her?
I'm sorry that you are as upset as you are. And yes, being away from them does play havoc on our health and mind. While there is a specialist she could see you have to steel yourself that the diagnosis will be the same.
My mother has gall stones, deverticulitis, hiatal hernia, aortic stinosis, problems with her colon and hemorioids. Sister stood on her head through all this and the doctors told us awhile ago (3 years or more) that while each is minor to do anything would prove to be a negative. Whatever mind my mother had at the time would be loss to some degree through the anesthesia and it wasn't worth that. we would be in a gamble of whether she came through surgery fine but ended up a vegetable.
We chose to just have her the way she was, Sister had her for longer than it may have been and that was enough.
Unfortunately this is all the hard decisions and while you are fretting, I'm sure your sister has it worse to actually be there, here the diagnosis and have to be the one to make the on-the-spot decisions in her care.
As your mother ages each month, her heart is more taxed and the fluid will just keep returning -- there becomes a rhythm to the hospital visits, etc.
Please just know that each of us has an end of the towel and we're wrapping you in our embrance. Please share with us your thoughts, concerns and pain but we'll always tell you the truth so you will be able to mentally adjust for what's ahead. We wouldn't be good friends if we couldn't do that for one another.
Dorri, my Mom is the picture of health and she is miserable. No matter what we do to make her happy, she is miserable. That is definitely a function of her disease. It is a result of the chaos and confusion swirling in her head that she can not make sense of and has no explination for. If she has something as simple as a sinus allergy flare up it's worse because she has no understanding of what is making her feel bad. In her world if people would leave her alone, if somebody else would do something different, or if she was in a different place then it would all be ok.
Your Mom is aware that she doesn't feel right but not aware enough to understand why and that is scary for her. Not only does she not feel right medically but she doesn't feel right mentally. Throw on top of that her inability to express what she truly feels and you get that constant negative mood that you see. I know it well because my Mom is there as well.
Remember that the first area of the brain affected is the area that controls judgement and and behavior. Then the memory area is quickly behind it. So they may not remeber what happened or how they reacted but they do remember how it made them feel. The negative stays and is hard to break. Even if they break through for a while they go right back to that confused status quo in their brain.
If you think your Mom is depressed then there are medications that can help with that but it won't make all the negativity go away. I guess if I was unhappy, didn't know why, didn't know how to fix it, and thought it was the fault of something or somebody else.... then I would be negative as well
I do understand how difficult it is because I have been dealing with the same thing with my Mom for over two years. No I take that back... over four years because she was that way before her diagnosis. It wears on you. You want her to be happy and you try everything you can think of only to see her melt into her misery again. But just know it is not her choice to be that way, just a function of the disease that has a firm grip on her. Keep trying.... just don't take the result personally. It's not directed at you but at what the disease has done to her.....
Thanks Deb, and please know that I appreciate you taking the time to respond and the understanding. I know you are going through a hard time as well. My mom keeps saying "if only I could get away, things would be different" If only I could get out" If only I could do something different" Meanwhile, she was being taken out when she was here, we tried to entertain her in various ways, my sister is also trying to do all that she can to make sure mom's mind is being stimulated but it doesn't appear to be doing any good. My sister takes her to activities at the Seniors home, but mom choses to sleep through the whole thing.
I know everything you are saying is true, mom can't help any of it. Mom is sick physically and emotionally. I can only imagine the torment she must be going through, and I almost feel bad talking out my concerns about her. I find it hard to allow my mind to think about what she must feel, because it's like watching a loved one drown and yet I can't save her. Too, I guess I come here for understanding and to air out my frustrations and to give me relief to cope with the situation, so I guess in a way I'm trying to make myself feel better so that is a bit selfish of me.
What you wrote is in my head as well Dorri. It is not selfish to what to save your drowning mother. I wish, every day, that I could do the same. My heart aches for her even when my brain wants to strangle her. It is so hard to even conceive of what is going on in their head..... and no we don't even want to know. But knowing helps us catch ourselves and place the blame where it belongs. Rage against the illness. We all come here for vent our frustration. We have to vent or we will implode. This is way too much for one person to carry alone. So never hesitate to do so. Whatever it takes to cope!!! We all do it and understand how it feels when other's do it. I have done my share When I get wrapped up in a bad moment, this is where I come and I want to be here for others when they get into their bad moments. It is the only way to give back what I receive. Besides, if I let my brain focus on somebody else then it doesn't have time to brood on myself So I need to thank you for giving me that moment of relief as well
Thank you as well Deb, and it really does help to be here and have the support of kind understanding people such as yourself and others..
I just heard from my sister who said the hospital called in the middle of the night saying mom was out of control yelling and screaming that she is not crazy and that my sister had left her there. They put mom on the phone hopeing my sister could calm her down, but mom yelled all the louder. They were mentioning that they would have to sedate her.
Sis is on the way to the hospital now and will fill me in later.
I finally got a minute to post. I wanted to last night but my eyes were actually crossing from fatigue. First I want to tell you how much I understand your frustration. No one can understand unless your living in the world of Alz and dementia. Then no explanation is necessary.
One of the hardest things for me to accept is the fact that I can't fix this for Mom. I still try to make her world happy and help her feel her best......its never enough. She is sweet and doesn't rant but she is not happy. I feel like a dog chasing its tail around and around in a circle. I think merry-go-round is better....up and down as your going around and around.......
Until I found this site all of my frustrations were kept inside or dumped on my husband and children. That has changed. I have people who bring me back to earth when I feel like I'm spinning out of control with the maddness of this disease. People who listen, don't judge, help me control myself, who just plain understand. I love them.
Mom has A-fib also. With CHF and COPD she swells too. Then we increase the lasix until it begins to slow her kidneys down. Then we decrease and the whole process starts over. Its terrible isn't it?
I hope things are looking better soon. I'll be thinking of you and your Mom.
Thanks Chris, my mom was also put on lasix. She has been on two lately but it doesn't work for long, yesterday she was getting it through the IV and her swelling wasn't going down as fast as the first time she was in for this?
Is your mom on coumadin as well for the A-fib?
Yes, she has been on coumadin since the first episode of A-fib. She was in the hospital after a surgery (can't remember which one) and I was sitting there reading while she tried to rest. Suddenly she said "Get help honey. Something is happening to me". Glad we were there. She was taken to the cardiac floor and monitored for a few days. She also has a heart stent. But that was done years before and she was no longer on coumadin. Everything seemed to get worse for her after the A-fib.
I hope this isn't too personal a question, but did your mom develop or get worse with the dementia after she experienced the A-fib? That seems to be when it all started for my mom, well maybe not, my mom had chronically high BP for years, but the confusion, forgetfullness and not making sense didn't appear until she collapsed in Sept and was diagnosed with the heart problem? That is also when they added all the extra meds to treat the A/Fibs.
I've thought about when Mom started to "forget things" and its hard to pin down to one incident. Like I said before she had gone through quite a few surgeries before the A-fib happened. Two hip replacements, several major abdominal surgeries and a knee replacement. Then we discovered she had a TIA at some point. We're not sure when that happened. It showed on a CAT scan in the ER. That was a surprise.
She then started to take much more medicine at that time. Couple all of this with the fact that Alz and vascular dementia runs through her family on both sides. I'm sure the surgeries had an effect on her brain. The hip was replaced twice in 6 months. Not a good thing. She took pain meds for months and she still was in so much pain. That was a hard two years to recover. I'm sure all of these events stacked on one another is the reason for her dementia. Who knows for sure Dorri?
I know one thing. I'm going to think twice before I have any surgery for anything. If at all possible I'll try a spinal before I have anesthesia. It seems that a little less of Mom came home everytime she had surgery. The A-fib caused a weakness that I had not seem before. She began to fall alot also. Her legs seemed to just go out from under her. Strange.........I hadn't put that one together. Now she can only walk with a walker. Most of the time she is in a wheelchair. She is just weak. Only way I can explain her now. Now you've got me thinking.....not that there is anything I can do to help her but its a puzzle. Isn't it?