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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.  

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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

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.

In the summer of 2006 my Mom was diagnosed with Pick’s disease after at least a year of uncertainty, misdiagnoses, etc.  She was previously diagnosed with bipolar disorder and before that many thought she was just having a bad midlife crisis.  In 2006 she was pretty active and able to walk miles easily.  She loved being outdoors and would sunbathe for hours upon hours and walk her dogs for hours.  She started making bad decisions and putting herself in danger and also started becoming very needy and hard to manage.  Her husband essentially abandoned her and she lived with me.  I was pregnant with my 2nd child at the time and due in Oct.  I had put my Mom in a adult day care from 9-5 and she hated it. She was only 59 and the residents were probably 70+ years.  After I would pick her up she expected dinner instantly and if it wasn’t ready she would hover over me and just repeat a phrase like “is dinner ready” one thousand times.  She was very anxious all the time, and instant gratification became her infatuation.  If she did not get what she wanted immediately she just followed us and repeated what she wanted until it happened.  After my daughter was born and my Mom would wake me up in middle of night and be up at 4-5am I realized I could not keep her at my house.  She also kept wanting to hold the baby but was so jumpy I feared she would hurt her accidentally.  I was very naive at the time and relied on 2 older family members for advice and a couple friends at the time.  My Mom had almost zero savings and a lot of debt. This meant she could not go to private pay care as it averaged $5,000-$7,0000 per month.  My husband checked out a few private places and told me how nice they were but for us to front this bill every month would be difficult if not impossible.  The only assisted living I knew of at the time was private pay.  That meant my Mom would have to go to a nursing home that would take “medicaid pending” patients.   One family member of mine had worked in nursing homes and found one about 40 minutes from my house with a younger population and said it seemed they kept the residents “engaged” which was a good thing, she said some homes did not.  I had been calling around homes but most did not want to deal with medicaid pending and this one would.  I decided to place her in this home at 59 — a decision I had a very hard time with.  I felt I was taking away her freedom but knew if I left her to her own devices she would most likely die of a avoidable tragic accident.  I felt if she was in a home she would have other residents to engage with and a staff to wait on her.  I could not wait on her 24/7 like she needed/expected at this point in my life.  I took her there in Nov 2006.  I almost could not leave her but I did.  I went back to visit weekly and at first she liked it, seemed to thing it was a country club or something.  Slowly she grew discontented and more agitated however.  The home would give her Ativan, a tranquilizer that soothes anxiety.  

Flash forward from 2006 – today — she has been in group care since then.  She was in several different nursing homes over the years and in April 2010 I found out about “Supportive Living” by chance when I called Alzheimer’s Association for help with placement. This is basically assisted living that medicaid covers.  I could not believe I never heard of this before and nobody I spoke to did either.  It seemed like a secret and I wanted desperately to get my Mom out of the nursing homes and into a nicer facility.  Another fork in our journey was my Mom was under 65 and 99.9% of supportive living facilities require 65 age minimum.  That left Eden Supportive Living, which dealt with psychical disabilities with 65 and younger age range.  They had 2 locations, one in Chicago by Wrigley Field and another in Aurora, a suburb 45 minutes west of Chicago.  We interviewed at both, she was denied at the Chicago location but accepted at the Aurora location.  Another roadblock we had faced at the time was some idiot staff doctor writing bipolar/schizophrenia on her chart and it is very hard to remove this.  I had to convince Eden she did not have this, had “Picks” which is an organic dementia-not a psychosis and have the nursing home get a doctor to switch her chart to be accepted.  

At Eden my Mom was given her own apartment, which was a nice size with a kitchen/bathroom/front room and large bedroom with multiple closets.  The building was a old Holiday Inn that had been remodeled I was told.  It was so nice and we furnished the place for my Mom.  I was nervous if she would be ok there because there was not 24 hour care, just aides that brought her medicine in a locked box, workers who would clean her place once a week and some activities throughout the day.  She seemed to do “OK” I would say overall.  She did manage to walk freely and go to get a coffee down the street, etc. and even surprised me by learning how to take the bus and open a bank account. By no means was she cured – when I would see her she would just repeat certain phrases over and over.  I would drive 45 minutes to see her and immediately we had to leave and go somewhere – anywhere.  I would take her shopping, out to eat, to zoos, parks, etc. that were nearby.  She became slower walking and towards the end of her time there she seemed very tired.  She fell in July 2011 and they had her taken to a hospital where they found water around her heart and lungs which needed to be drained.  In the time she was at the hospital, a little over a week she became very weak with her walking and had to go to rehab.  At rehab they were afraid she would fall so made her stay in wheelchairs unless staff was nearby.  Her safety awareness was too poor and if she fell the home would be in trouble so it was a lose/lose situation for both parties.

Eden came and saw her and were shocked by how much she had gone downhill and said she could not return.  My Mom didn’t even recognize the worker she had spoken with daily.  I previously blogged on hospital delirium and I believe this affected her much worse than a normal patient with her dementia.  She was so out of it and quickly lost her leg strength.  I watched helplessly as this took place.  

I had to find a new home and of course it was not easy being medicaid only.  My Aunt had a brother at Bridgeview Health Care and said she loved this facility so I applied there for my Mom and she was accepted.  They also tried to keep her seated unless she was in rehab and her ankles became very swollen from not walking.  I was heartbroken to see this decline.  I would try to get her to walk but she was having a very tough time.  I was so angry she was back at a home and on top of this put on dementia floor and I lashed out at the staff. I am pretty sure most don’t like me there but I felt it was their fault for always trying to keep her seated.  They said if she fell and broke a hip we would be worse off and they were right.  She has been there since August 2012.  She became incontinent soon after arriving also.  I thought for sure something else was afflicting her and pushed her doctor to schedule a appointment with a neurologist.  When we met with one, he was unfriendly and told me he could not help – if she had fallen back at Eden months before he would have had to seen her then.  He said with the dementia he could not test her.  He was rude but right.  

So at this point my Mom cannot walk more than a few feet, some weeks are better than others.  She is incontinent also.  We pick her up weekly and she usually spends Sunday’s at my house.  She has days where she is more coherent and days when she is not.

She just turned 65 on April 29 and it was bittersweet because now she could finally qualify for more of the supportive living, medicaid accepting facilities but was too sick to qualify.  

I recently heard from a reader that Picks disease is an outdated term and now FTD dementia is the new term.  I had not looked into the disease much since then as far as researching it – we were living it and trying to deal as best we could with my Mom so I had fallen behind in keeping up to date.  I looked it up recently and saw there are many more sites on the frontotemporal dementia and I was so happy more information is out there to help people, especially community sites where you can chat online.  I also saw looking at these that my Mom fit into so many descriptions people posted on their loved ones with FTD.  

That is a short version of 6 years with this disease.  I hope this site can help others dealing with this horrible disease.

-Melissa

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