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 My mom and I never knew 
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Joined: Tue Jul 27, 2010 9:21 am
Posts: 1
Post My mom and I never knew
I didnt have a clue about Lewy Body dementia. But now realize that is exactly what she had. She was disabled since childhood with severe scoliosis. When she was 50 yrs old she was diagnosed with Emphysema, and then a few years later had to have oxygen 24/7.
Almost every winter she would get pneumonia and would go into the hospital which would end up with her being on a ventillator, I didnt know then that that was not the only option, and I know it caused so much suffering and eventually led to her demise.
I wanted to know your thoughts about some things that she was doing that really break my heart, she passed in April of this year, at 68 yrs old. I had moved in with her in 2005 to help with things. She and my stepdad divorced, he wanted out of the relationship, and she could not make it financially on her own, so I moved in. My stepdad's leaving broke her heart. She fell into depression, and would not seek help. So it became worse and worse. This last march she fell and broke her hip, and the surgery that only took 15 min went great, but then they ventilated her, without our consent and the complications began, this time though they moved her from the er to another hospital because her medicaid wouldnt pay for her being in the er. It was a horrible experience. She started refusing treatment, wouldnt do the breathing treatments, wouldnt eat, wouldnt take her meds, except for the valium and darvocet, which now they refused to give her because it slowed her breathing down. The Co2 in her blood was reaching lethal levels, which was another thing common with my mom because of her deformed lungs.
The hospital told us there was nothing more they could do for her, and tried to put her into hospice. We refused and brought her home. She asked while she was in her hospital bed in the living room, who was following me, and there was no one there. Can you tell me what she may have been seeing?
She died two weeks later because of the co2 rising so high.
My question is before she fell, she would call my sister, who lived in another town, just sobbing saying I was calling her names, and not buying her food and tolietries, that I made her stay in her bedroom. I was not aware she was doing this, and it couldnt of been farther from the truth.
I wasnt aware of this til now, my sister just told me. It literally rips my heart right out, to think that she thought these things, that I was being mean to her. I loved her so very much, and I always tried my best to make her happy.
Can you shed some light on this please? For my sanity.
Thank you

Tue Jul 27, 2010 9:37 am

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3441
Location: Vermont
Post Re: My mom and I never knew
Hi Roxanne - you are obviously feeling a lot of pain about your mom and I am so sorry for it. Something that is really important for you to understand is that whatever disease/illness your mom had, it was the disease speaking, not the mom you used to know. Whether it was the lack of O2 her brain was getting, or if she had LBD or whatever, that doesn't really matter now. What matters is that she had some terrible health issues that were not allowing her to think or speak like she did when she was healthier. You know you did all you could for her, and you just have to focus on that.
Just like with my dad, who is angry and acting out all the time now when I am with him, this is NOT the person he was. That person has been gone for a year now. I have to remind myself constantly when I am with him and he is shaking his fists at me and looking like he's about to explode, that he was the best dad and grandfather in the world. I'm not doing anything wrong to "make" him angry, it's the disease.
It sounds like your mom suffered her whole life with various serious health issues. She is no longer in pain or suffering, and for that you can be grateful. None of us wants to see our loved ones suffering.
You did the best anyone possibly could do. It was the disease talking - tell yourself that over and over until you believe it. You have nothing to feel guilty about. Be proud that you did what you did for her, and stop beating yourself up over the things her disease made her say that weren't true.
Take care of yourself, and visit here often! Lynn

Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.

Tue Jul 27, 2010 10:13 am
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