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My mom has a fib and on 3 meds that can work as blood pressure meds. Recently it went as low as 88/48. Her home health isn't concerned. She has rapid short term memory loss . CT shows no abnormalities and they say they see nothing indicating it's that. This past week she started going back to bed sometimes she sleeps, others it's up and down, my mom never does go back bed. She will say she is hot then 5 min later cold. She's constantly changing thermostat. Same with coffee, it's hot then it's cold back forth and she can't walk and weak. Now on top of an almost compulsion of hot/cold she she puffs and no reason to be. No one will help me find out what's happening. I read Lewy body dementia won't show in tests. Could this be what's happening? How do I go to nursing school then come home to her? Plus my dad is also there he's giving up cause he can't take what's happening to my mom. I'm gonna lose them both and I say within few months of the other. I don't know what to do and I go to school and watch these awful disease and toll thinking of my parents. I do great till they are in bed and I crumble. How do I survive this what toll will it have on me? Nobody understands or dealt with this and act like they can relate. I need someone who can I'm scared of all this.

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You have a lot on your plate and I’m sorry that you are so stressed. I’m not a doctor but I can share our journey with my dad’s Afib. He has what is called permanent Afib. He has failed chemical intervention and cardioversion. He is currently taking Eliquis to prevent blood clots, digoxin, sotalol, imdur and nitroglycerin patches that in combination help to control his heart rate and rhythm and chest pain. He also has lorazepam to control the anxiety that often comes with Afib. By design, we aim to keep his heart rate and BP relatively low. From time to time we’ve had problems with his BP getting too low and have had to adjust the medications slightly. 95% of the time, however, when his BP is low it is because he is not drinking enough fluids and is hypovolemic. I can usually tell when it is low as he is excessively tired, cold and confused. It’s amazing the difference it makes.

You definitely have a full schedule, but is it possible to go with your mom to her dr’s appt? Maybe schedule one for when you’re on spring break? It may make a huge difference for your mom and also give you peace of mind. For my dad, we opted for no further intervention for his Afib (dr recommended the watchman procedure) so we looked into palliative care. Ultimately we decided on hospice care and it’s been wonderful. Now I have medical staff that I can call any time, any day and he never has to leave the house. It’s been a God send.

Hoping something in our experience is helpful to you. Wishing you better days.
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Shatxs2003 Mar 2020
My dad told me years ago and reminds me still that he does not or will not allow her or himself to go to all or n.h he has stood form on it still and says the day that ever happens is day I might as well go ahead and plan funerals. I put mom she won't make it either she can't be withour him and I can't bare to do it and live with the guilt. I got to go see my boyfriend for the weekend while another member stayed there so I coykd while I still can. Dad and her said mom is worse than when I left she is up down all day and night now. I don't know anything on afib so I don't know if like you said anxiety causing this along with afib. Makes sense she didn't do all the puffing or repetitivenedd until I took her to er and she got scared they keep her. Now im gone and anxiety is possible . I dread going and seeing her like she is but I have to . my heart is breaking and i know my dad's worried the toll this will take on me. My biggest concern is I won't get to finish school if I loose them before I grad in December. I can't miss but couple days and I coykd never bury one then go on to finish. I am getting so much offers for help and words of encouragement from my family friends and hometown . they have asked me to update on Facebook weekly my school week and my parents. I do it cause it's way to get it out process it all. Ive always been the county hometown girl everyone loves and this journey im on shows that love.
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You can always send a note to her doctor before the next appointment, saying what you are seeing and asking them to check it. Same for your father. The doctor can’t talk to you unless it’s authorised, and at the appointment it may be difficult for you to speak freely, but you can always write as clearly as you can. Plymouth seems to have quite a lot of medical support, and it sounds as though you have almost nothing. Best wishes to you all.
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I had her Dr evaluate her for Alzheimer's . I told her it was to review her meds she failed . we did CT no abnormalities. 2weeks ago she had bronchitis. Since they day she is clear but coughing. Blood pressure low they tell me it's normal. Now it's puffing like can't breathe and if I go to do bp and vitals she does it. She turns thermo hot to cold coffee hot to cold. All day long. Tells me Tonya I'm tired I'm going lay down she has never done that but has slept all day except meals sotting on couch. I have all her and dad's on Fri when I'm not in school. My dad's givung up cause he can't take it. She drives him crazy asking or doung things over and over.
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anonymous1010889 Mar 2020
My dad has that “puffing” when he is in Afib and anxious. If I’m correct, it’s called pursed lip breathing.

Have you considered having your mom placed in AL or NH? I’m not saying that being cruel but at one time was forced to make such a decision. It was a while back but my mom was deteriorating quickly and we could no longer manage her ourselves. It wasn’t helping her and I could see that it was killing my father. It was a difficult decision but one that had to be made. She went into a local NH where she had the 24/7 care and medical attention she needed and my father visited her every day. It may also give you the peace of mind to know they are both safe so you can continue school and not worry quite as much.
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Lots of different types of dementia will NOT show up in CT scans or MRIs!! My mother, for instance, has what I suppose is vascular dementia (since her hard tests are all normal also) and has been declining since 2016 when she was diagnosed after scoring low on the MOCA exam. She also has Afib and is frequently huffing & puffing/out of breath, even when she's not exerting herself.

I really do recommend you get through to your father, SOMEHOW, the necessity of placing BOTH of them TOGETHER in Assisted Living. I did that for my parents back in 2014 after dad broke his hip; neither of them were able to live independently any longer, and the stress of it all for me was horrendous. So, I feel your pain. Dad wound up passing away in 2015 & my mother till lives in Assisted Living to this day, in Memory Care now since last June. It's just too much to care for them alone at home and I don't blame you for being scared & upset. TELL that to your father & ask him to please be reasonable here, and not to expect you to deal with such a tremendous load yourself!!

Sending you a big hug and a prayer that your dad will stop being so unreasonable and that he'll allow you to look into Assisted Living for them. Good luck!
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