My Mom passed away on October 26, 2016.  She went downhill after a trip to the hospital in early 2015 and it was so bad I stopped posting I was so sad and depressed.  I want to recap the last 2 years.  My Mom was in a wheelchair for years now but after the hospital she was so weak she needed 2-3 people at nursing home to lift her into a hoyer lift to transfer her to her wheelchair. The dementia progressed and not only took more of her mind but her body.  She was always irritated and confused from this point on and visiting her was very hard on me. She got to the point where she could not sit up in bed or even raise more than her head a bit and could not lift her arms either.  She was only able to eat pureed foods and had to be fed by staff.  She went into hospice in May of 2015 and was with them for over a year.  You can be in hospice with a “change of condition”, which can be as little as losing weight monthly.  You do not need to be at death’s door to qualify. Hospice was paid by medicaid and a lifesaver for me.  They had a Chaplain, a music girl, cna, nurse, social worker, and all tried to visit with my Mom and give her extra care.  The last 6-8 months of my Mom’s life I believe Alzheimer’s set in and she did not know who I was or my kids.  She would just mutter something about 26th street where she grew up and sometimes called me Mom.  When I received the call about another “change of condition” I knew this was it because she was already in such bad shape.  I went there on Sunday and my Mom could no longer talk and mostly slept.  She developed a fever and the hospice staff worked with nursing home staff to keep her comfortable.  She was given tylenol every 4 hours, within 2 hours her fever was over 102 each time.  She was also given morphine to help her rest.  She hung on from Sunday-early Wednesday and then finally passed.  I sat with her and talked to her about going shopping and decorating the tree for Christmas, once or twice she opened her eyes so I think she liked what I was saying.  This is a horrible disease that not only took my Mom’s mind but her physical body.  I am glad she is finally in peace.

I received a call from Nursing home yesterday saying my Mom needs to see an oncologist that her Doctor thinks she has Thrombocytopenia.  I looked it up in Google and found on Mayo Clinic it usually means patient has Leukemia, immune system disorder or medication side effect and is due to a low platelet count.  They want me to go with my Mom to a hospital pretty far away for tests.  What tests I do not know. This is really all the info I have and I do not like it.  My Mom is sick enough and I am not looking forward to stressing her out with this visit or listening if they say she needs chemo.  I am trying to get more information on what they plan to test, why we must go to a hospital far away, etc.  

I picked up a book Brain on Fire at airport about a girl in her 20’s who all of sudden is acting very odd, like she has dementia, schizophrenia, psychosis, bipolar disorder…it turns out she had ovarian cancer that was cured previously and it led to a spike in her white blood cells and it took quite some time for Doctors to figure this out.  She was also having seizures.  Reading her actions reminded me of my Mom and while not the same scenario this author did the make the point of saying if her parents had not kept pressing doctors she could have ended up in mental illness facility or nursing home.  It made me think this could happen to others, and that is pretty scary as many don’t have a lot of money or great health care.  The author was at very good hospitals in New York and they could not figure this out for longest time.  It is scary to think some could be institutionalized that could actually be cured.  It made me sad too, I don’t think a lot of testing was done on my Mom but I really don’t know…I would suggest everyone keep very good notes of all lab work done with results in case a case like this could ever come up – especially with a younger person being diagnosed with dementia.

We went to see my Mom at 10am and had a small party in the conference room of nursing home.  My Aunt came as she is the Guardian of another resident.  We bought bruch type foods and chatted for awhile.  My kids are so used to going to nursing home now they don’t think twice about it which is nice.  My Mom and my 2 year old are funny when they communicate, it is almost like they are on the same level.  My 2 year old asked my Mom if her coffee was hot, my Mom responded yes, a bit – i wish the lady would have stirred it better but I won’t push it with her…as though my daughter understood.  My Mom thinks she is so cute and she loves the kids but these days mixes up the names.  She calls my oldest John Jr. which is my Husband’s name but not his he is Steven.  She usually does not remember the others by name but is nice to them.

 

My husband and I were talking about Thanksgiving and realized this will be the first year we cannot take my Mom out of the nursing home.  She is dead weight, and with dementia thrown into legs that no longer work it is simply unsafe to try to transport her. We are not equipped with a handicapped bathroom and most restaurants are not either.  Besides, if she did have to use the washroom I cannot change her by myself as she will fall down suddenly so that would not work in a public place (if my Husband had to come help). We also don’t have a lift on our van.

It is a sad realization.  We will spend our holidays at the nursing home and visit with her for a couple hours.  

Nov 9 the Apostolic Church of God in Woodlawn neighborhood will offer a caregivers help event.  The goal is to aid caregivers in becoming better advocates for their loved ones.  The focus is Alzheimers but that is the most well known dementia and I am sure the info will apply to other forms of dementia too.

Reading an article on alzheimers and it says African Americans are disproportionately affected by Alzheimer’s, possibly because they have high rates of blood pressure and high cholesterol, which are risk factors.  Well, I am Caucasion, and have high blood pressure so I would assume I am also a risk factor – that and the fact my Mom has frontal temporal dementia, my Grandfather had Alzheimers and my Grandmother had ALS.  

Wow — I am hoping for a quick death when older, like the 80+ year old who ran the NY Marathon then died soon after.  What a way to go, you have a feeling of accomplishment and no long term suffering.

My Mom has been on countless drugs that supposedly will “help”.  Risperdal is one I know she has been on and I just read an article in newspaper that says Johnson & Johnson has to pay $2 Billion in false marketing of this product – they targeted elderly, disabled and young children.  They generated worldwide sales of $24.2 billion from 2003-2010.  The US Gov has been probing Risperdal sales practices since 2004, including allegations the company marketed the drug for unapproved uses.  The FDA approved the drug for “the management of the manifestations of psychotic disorders”.  Since that market is limited, J&J sought to sell Risperdal for Bipolar Disorder, Dementia, modd and anxiety disorders.  Then in 2006 they added marketing to children.  J&J will plead guilty to a misdemeanor criminal charge over misbranding Risperdal for uses not approved by FDA, including treating elerly patients with dementia.  Omnicare is the leading pharmacy provider for nusing homes, and they received kickbacks for promoting the drug to nursing homes.

What makes me mad about this goes back to Day 1 of my dealing with my Mom’s disease.  They want to throw you on a ton of drugs and they all have side effects and really no proof of working and you try to stand up for your loved one and cannot fight the system, they just give them what they want to and then you hear of stories like this — the FDA did not even APPROVE the drug for dementia use!!!!!  Greedy people decided it would be good to generate more sales and market to nursing homes and my Mom was (and may still be on this, i am going to call and find out) for what reason?  To make some rich.  I am disgusted.

this is the first summer i cannot take my mom out of the nursing home.  i cannot take her to my house to sit around outside with us in the backyard.  this stinks.  i did not realize how hard it would be until the realization set in that she simply cannot come to my house anymore.  the nursing home needs a lift to change her, she cannot stand at all and it is too difficult to do this even with 2 people sometimes.  i cannot risk having her fall and not be able to lift her back up.  last summer and all the summers prior she was with us every weekend almost.  i miss those times now, even when they were hard and she was always asking me for more and more I miss my mom.  

My Mom was acting out a lot at nursing home, very emotional and at times combative, and so we decided to raise the dosage of Seroquel back to 100mg from 50mg.  I was against the drug but at the same time I know I cannot have my Mom causing issues every day.  She was also more confused and disoriented I cannot say for sure but maybe it was effect of coming off the drug.  We will see how this increase goes, the staff knows I don’t want her “zombified” and will call later in the week to give me an update.  

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