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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.  

I finally was able to get, by court order, some of my Mom’s possession’s from her previous marriage. When she became really sick in 2006 the husband (not my Dad) had locked us out and wanted nothing to do with her and remarried and moved a new women in to their house.  It was hard and now 7 years later I finally reclaimed a few personal effects.  I was very anxious to go there, I did NOT want to see him as I think he is very evil and a bad person but at the same time it is the point it was her belongings not his and a little piece of her from happier times I could have as a memory.  We went there without incident and although he didn’t give me everything I guess something is better than nothing.

I am sure anyone who has a loved one suffering from dementia has experienced this…you see someone who looks alike your loved one, doing something they used to enjoy, and become nostalgic.

I was at a White Sox game in Chicago yesterday and rows ahead of me I saw a lady with hair like my Mom used to have in a baseball cap having a good time. I thought, my Mom would have loved to be here in the old days before she became sick.

Does anyone have a story to share about their experience with something like this?

I just read this article and it is saying (i picked out pieces from FierceBiotechResearch.com)

Scientists have mapped brain pathway that produces abnormal proteins to pinpoint how oligomers–the toxic species that spread easily around the brain to cause the death of neurons–are formed.

Right now there aren’t any modifying therapies for dementia, only limited treatment for symptoms.  They are working to solve what happens with molecules before they progress.

If they can find out how to stop the progression this could lead to treatment for dementia!!!  I love reading articles like this, it shows some signs of hope.

Here is a link to the article:  

http://www.fiercebiotechresearch.com/story/cambridge-scientists-find-molecular-catalyst-behind-alzheimers/2013-05-21?utm_medium=nl&utm_source=internal

Sadly, I am going to start visiting my Mom without my kids…not knowing if she will be coherent or not is too confusing for them to see, especially my 6 year old.  I spoke to the nurses and told them this and also asked if we can halve the amount of seroquel to see if that was playing a part in this new drop off.  The staff does not think the seroquel is doing this and all I can think of is I had to sign a consent to have her placed on it so it must be pretty powerful.  We will see how this plays out but as of now my Mom cannot walk, barely stand, is incontinent, and now is incoherent to top it off.  Depressing.

 

I went yesterday (wednesday) evening around 5:30 to pick up my Mom to take her to my cousin’s wake.  I called earlier told the morning nurse to have her ready…I guess the message was not passed to the afternoon shift.  The nurse was very surprised to see me, and my Mom was at the dinner table finishing her meal.  She barely recognized me and I had my 6 year old daughter with me, with my Husband and 2 boys in the car waiting.  I wheeled her over by nurse, asked when she had last been changed, nobody knew so they sent someone to help me in bathroom.  My Mom was so out of it, it was just heartbreaking.  They had been bugging me to sign a consent for a psychotropic drug, which I did not want to do, but I know my Mom can be a handful so I did about a month ago.  She was so drugged she was leaning over toilet ready to fall on her face.  The CNA who must be slow was like come on Connie, you have to help..sorry but you cannot help when you are ready to fall asleep from drugging lady.  It was apparent this was a bad idea to try to take my Mom out, the whole bathroom scene alone took a long time, they needed extra help since my Mom could barely move and wasn’t coherent, and I started to get upset but did not want to cry so pushed the feeling back.  My daughter started to get upset and then I felt worse.  My Mom seemed unaware of surroundings and time, I took her downstairs and told my husband to go to McDonalds to get her a sundae but by the time he came back she was slumped in her chair sleeping.  I took her back upstairs and asked the nurse what she had been given.  Seroquel at 4pm.  There is a care conference Tuesday and I am going to revoke my consent for this drug.  I am sad, frustrated, sickened by the system of institutional care.  

I post on Alzheimers research as it is a dementia and there are common links in some cases.  This article I read said not as many African American’s had been surveyed as European’s but they found when they looked at DNA from 6,000 there is a gene ABCA7, which had a strong link to Alzheimers and subjects who had changes to that location were 1.8 times more likely to have Alzheimer’s disease than people without the changes.  The effect was about 60 percent stronger in African American’s than in subjects of European descent, according to the team.

We decided this Easter to just visit my Mom at nursing home since she is unable to even stand and very hard to transport.  I rented the conference room from 9-11 and invited my Aunt who is a Guardian of another resident and also another resident who I am friendly with.  There were about 10 of us.  Apparently they give my Mom downers in the morning so she was pretty out of it at first.  I hate seeing her that way so right away I was a bit depressed but I had to keep my happy face on since my Kids were there and it was Easter. We brought them Easter baskets (the 3 residents in the party only) and we had a buffett of brunch items.  My Mom perked up about an hour after we arrived and started to engage a bit.  We stayed for 2 hours.  It is the first year I have not taken her anywhere so that is another milestone in this disease.  It is a sad one and I wonder what will be next.

I have been visiting my Mom as her nursing home every week rather than taking her to my house since she is so hard to move and my Husband had hernia surgery and cannot help me right now.  Going to the home in one way is easy because I am not lifting her into cars, around my house, etc. but in another way it is hard.  Why?  Because it is depressing.

 I bring my kids and we bring snacks and games and hope the one private room they have is open.  If it is not we have to wait for the dining room to be free from lunch and church, and then sit there with my Mom while they do Bingo and it is very hard to hear as they have to yell it out.  Sitting with the general population shows me how unhappy many are, which I can understand.  I would be miserable to live somewhere I could not leave and cannot do as I please.  One lady in particular has a nasty attitude, constantly complaining to the staff and being very unpleasant.  I know she hates when I am there with my kids because we are “too loud” during bingo and she makes comments.  She also thinks she is the Boss of the place and constantly tattles.  My Mom wanted a book off the Bingo cart and was immediately busted by her…No no you did not play.  

There is another man there who I have come to enjoy.  He lives there, seems with it and mobile so I don’t know why he is there but he likes to keep busy.  I bought him some pens and paper once and he comes by and talks to us now and then.  I can tell he would like to join our games, but I am afraid my Mom won’t like it as she sometimes tells residents to get away and gets jealous so I am afraid to rock the boat.  I wish I had more time to talk to him and see how I can help him….can I bring him snacks, is he diabetic etc.  

Being there for 2 hours and seeing so many in wheelchairs and with various issues is depressing.  I try not to let it bother me but sometimes it does.

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