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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.  

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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

The last couple of months have been very hard on me. My Mom fell, was admitted to hospital, they said pnemonia at first-then she was not getting better, went back in and they said she had fluid around heart and lungs. She is getting weaker physically by the day and they say she needs rehab. She goes to Lexington in La Grange, IL and there they do rehab but keep her confined to wheelchair as they are afraid she will fall. I keep trying to tell them she was walking fine a month ago and please let her walk but they won’t. Then after about a week I have to move her to a different nursing home as Lexington wants her out, they claim medicare will run out but I think she was too problematic for them as the social worker said “i don’t think she is a good fit for this facility”. The new facility is making her stay on Dementia floor and when I try to have her moved they will not. Well, by now my Mom can barely walk and cannot lift herself out of a chair and is incontinent. I cannot believe how bad she has gotten in maybe 2 months. I am so worried and at first my priority was moving her to a better home but now I want to find out if something medical is going on and the Dr. here is nice and trying to help so I will keep her here for time being until I find out if another medical issue is at play or if the Pick’s is causing this. I was so upset but now am just trying to maintain and advocate for my Mom. I am going to see her today, I hope she is a little better.

I have mentioned in previous posts my Mom has been misdiagnosed as bipolar, schizophrenic, just depressed, and the latest is she may have ALS, better known as Lou Gehrig disease.  My Mom’s mom and brother died from this and I know it too well.  It hits hard and fast and is absolutely terrible, reduces you to a baby in no time.

So I know my Mother does not have this.  Could she develop it, it is a possibility but I know her diagnosis from 2006 of Pick’s Disease is correct and the trouble with Picks Disease is it is not common, and is still rather unknown to the medical community.

If you believe your loved one has Pick’s but is being told they have something else, push for a brain scan.  Don’t let the “experts” diagnose as they are not always right in gray areas such as Picks.  You may need not only one other opinion, but 2 or 3.  I know, i have been there, done that.

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