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Summary of Drs visits
Rocketman 1811
Posted: Friday, August 16, 2019 12:23 PM
Joined: 5/19/2019
Posts: 39


I've been following this Message Board since my DW's initial Dementia diagnosis in April.  I posted a bit, but for the past few months, have just been reading the wise words here.

Yesterday we finished up with a marathon of Drs visits.  The initial diagnosis was "Dementia with behavioral disturbance, unspecified type".  MY goal was to get this specified to a narrower diagnosis so we could come up with a treatment plan.  We visited our Primary Care Dr, Neurologist, Psychiatrist, Psychologist.  They ran a variety of tests, did scans and lots of observations.  The end result was a diagnosis of "Dementia with behavioral disturbance, unspecified type".  None of them would even give me a "Stage" she's in.  I'm guessing a 5, but come on..  I shouldn't be the one coming up with this!!  They went to school a long time to specialize in this!!

NOTHING was determined to narrow the diagnosis.  My DW is so discouraged and burnt out on Drs visits, I'm not sure I will be able to get her to go to another Dr till something significant becomes apparent (broken bones or open oozing sores).  They put her on Memantine 10 mg twice a day, but that isn't much of a treatment.  They said it "May" slow the progression (or May not..  they really don't have any way of knowing).  She vomited all day long for about 5 days till she got used to the new meds (she's tolerating it OK now).

 It's apparent to me that this disease is grinding, soul crushing and hopeless! (I know, that shouldn't be surprising after reading all the posts here, and reading "The 36 Hour Day" twice).

I just don't know if I can do this for 10 years, but I know I can do it this afternoon, and tomorrow, and maybe next week.  Gotta take this new phase of our life on in small bites or become completely overwhelmed.


Beachfan
Posted: Friday, August 16, 2019 1:34 PM
Joined: 2/1/2018
Posts: 324


Rocketman 1811 wrote:

I just don't know if I can do this for 10 years, but I know I can do it this afternoon, and tomorrow, and maybe next week.  Gotta take this new phase of our life on in small bites or become completely overwhelmed.

This is the only way to roll.  One day at a time, one foot in front of the other.  Don't look for trouble; if it's coming (aggressiveness, wandering, incontinence, etc.), it will get to you in due time.  I've been at this 9 years; it's best to live in the moment.  You'll know when you can no longer do it and it will be no one's business but your own.  Good Luck; know you are not alone!


JJAz
Posted: Friday, August 16, 2019 1:43 PM
Joined: 10/21/2016
Posts: 2422


Rocketman 1811 wrote:

  The initial diagnosis was "Dementia with behavioral disturbance, unspecified type".  MY goal was to get this specified to a narrower diagnosis so we could come up with a treatment plan.  We visited our Primary Care Dr, Neurologist, Psychiatrist, Psychologist.  They ran a variety of tests, did scans and lots of observations.  The end result was a diagnosis of "Dementia with behavioral disturbance, unspecified type".  None of them would even give me a "Stage" she's in.  I'm guessing a 5, but come on..  I shouldn't be the one coming up with this!!  They went to school a long time to specialize in this!!.

It's good that you have had testing to rule out all types of treatable dementia.  What's left are types where the SYMPTOMS are treated.  It doesn't matter much.  You get prescribed Aricept, Namenda, etc., but it doesn't change the course of the disease.

Docs don't use the stages 1-7 that most of us refer to.  It's not intended for clinical use.  It's frustrating at the beginning, but it is what it is.

It's good that you have a strong team, because as time goes on, most of us need them.  But it's true that at the beginning, they seem somewhat worthless.

Blessings,

Jamie

 



LizzieC
Posted: Friday, August 16, 2019 2:18 PM
Joined: 3/28/2018
Posts: 221


Rocketman 1811 wrote:

I just don't know if I can do this for 10 years, but I know I can do it this afternoon, and tomorrow, and maybe next week.  Gotta take this new phase of our life on in small bites or become completely overwhelmed.


I totally get that...it is overwhelming to think about the next several years.

Beachfan and Jamie have words of wisdom and experience!


Iris L.
Posted: Friday, August 16, 2019 3:53 PM
Joined: 12/15/2011
Posts: 16092


Rocketman 1811 wrote:

   They put her on Memantine 10 mg twice a day, but that isn't much of a treatment.  They said it "May" slow the progression (or May not..  they really don't have any way of knowing).  She vomited all day long for about 5 days till she got used to the new meds (she's tolerating it OK now).

 

When I began memantine, I began 5 mg once a day for one week, then advanced 5 mg every week until I reached 20 mg a day.  I had to reduce and begin titrating up again due to insomnia as a side effect.  But eventually I was able to tolerate the 20 mg dosage without side effect.  

Iris L.



Marabella
Posted: Friday, August 16, 2019 5:58 PM
Joined: 2/2/2019
Posts: 137


As Iris L indicates, the starting dose for Memantine is 5 mg per day for at least one week, and titrated up gradually depending on tolerance. My DH started on 2.5 mg two times per day for 2 weeks, titrated up to 5 mg two times per day for 30 days. The full recommended daily dose is 10 mg two times per day if tolerated. The vomiting experience must have been terrible for you and your DW. In my opinion, the doctors did not do their homework prior to prescribing the  Memantine. 

Memantine is usually prescribed for advanced dementia and not for mild to moderate. Aricept is usually prescribed for mild to moderate dementia.

IRIS L: is Memantine relieving any of your symptoms.

As Jamie indicates, doctors do not use “stages” that our forum refers to. You would be a better judge of what stage DW is in by comparing what your DW can do to the clinical charts. If DW needs help with all ADL’s (activities of daily living such as dressing, bathing, toileting), she would be in stage 6. 

 


Rocketman 1811
Posted: Friday, August 16, 2019 7:43 PM
Joined: 5/19/2019
Posts: 39


She started Memantine at 5 mg/once a day and slowly increased to 10 mg twice a day.

There is no expectation that this will "Improve her condition".  It just MAY slow the progression. 

No hope to make her life better, just prolong it.  Will spend the next few years managing symptoms and controlling the environment we lie in.


Aurelio
Posted: Friday, August 16, 2019 8:07 PM
Joined: 8/14/2019
Posts: 1


My wife has VD she drastically declined Feb 4 2019 

I am her caregiver 24/7 have no help from anybody 

She has 2 daughters from her prior marriage but they are living their sweet life 

I am having a very tough time she doesn’t recognize me a lot of times or sometimes she tells me that she was only married once also she doesn’t want to be where we live she says that she wants to go home 

Any advice how I could handle this situation 

 


Ed1937
Posted: Saturday, August 17, 2019 5:18 AM
Joined: 4/2/2018
Posts: 1432


Aurelio, welcome to the boards. Sorry you have a need to be here. You will find a lot of help and understanding here. You will not likely get a lot of replies to your post when you put it in a thread that has replies already. For best results, please start a new topic.
Rescue mom
Posted: Saturday, August 17, 2019 12:27 PM
Joined: 10/12/2018
Posts: 912


Rocket man, I remember so vividly when DH got his Dx of AD. I thought now these docs and experts can help me deal with this.....I was so, so wrong, and now I see how/why. I read that 36-hour day book, and while it helps understand the disease, it was no help to me, at least, in dealing with the *effects* of the disease.

DH didn’t think he had any problems, he just didn’t do anything, or did crazy stuff that I had to deal with. I guess docs really can’t deal with that.

The docs did tell me to find a support group, and it’s true, the support groups, both IRL and here, are 10000x more helpful than any doc has been. 

DH was also Rx  metamine but like others here, was introduced to it much more gradually, over several weeks.


Iris L.
Posted: Saturday, August 17, 2019 2:37 PM
Joined: 12/15/2011
Posts: 16092


Marabella wrote:

IRIS L: is Memantine relieving any of your symptoms.

Marabella, I was prescribed memantine after being on Exelon patch (4.6 mg then 9.5 mg) for a few months.  Within a few days of beginning Exelon patch, I noticed improvement in my memory and speech.  I had two episodes of bradycardia down to 50 beats per minute, but these did not persist.  After memantine, I noticed more improvement.  My neurologist told me that due to the long half-life, I could take both doses of memantine at the same time, which I did in the morning.  I have been taking both meds for ten years.  I do believe they are helping my memory, speech and general thinking ( being able to figure out things) and enabling me to continue to live independently.  

I do NOT have Alzheimer's Disease.  My diagnosis is cognitive impairment NOS ( not otherwise specified); in my case thought to be related to systemic lupus or anti-phospholipid syndrome (Hughes Disease) which causes micro-clots in small blood vessels.  My neurologist also told me I have leukoairiosis, which is related to spots in the white matter on MRI.  My spots have been increasing in my last two MRIs.  Also my ventricles are enlarging.  

 My blood pressure was elevated when I first began treatment.  My neurologist was very concerned, and warned me that my blood pressure could be a factor.

I am satisfied with my treatment.  I follow Best Practices. I have been able to travel.  But it is getting harder and harder for me to care for myself and my home.  Actually, when I travel, my life is better because other people take care of everything and I don't have to be stressed.   I read the boards to learn what I need to do for myself and to help when I can.

Iris L.



Iris L.
Posted: Saturday, August 17, 2019 2:46 PM
Joined: 12/15/2011
Posts: 16092


Rocketman 1811 wrote:

There is no expectation that this will "Improve her condition".  It just MAY slow the progression. 

No hope to make her life better, just prolong it.  Will spend the next few years managing symptoms and controlling the environment we lie in.

 

 

Rocketman, the use of the medications may improve the ability to perform ADLs.  This may enable the PWD to remain in the home for a longer period of time, without needing to move to a facility.  They may prolong the early stages.  They do not prolong life.  Controlling the envirinment is a major aspect of caring for a PWD.

I wonder why she was not offered Aricept or Exelon patch.  They are usually begun first.

 

Iris L.

Marabella
Posted: Saturday, August 17, 2019 3:26 PM
Joined: 2/2/2019
Posts: 137


Thank you Iris L for your helpful information. I read all your posts!
piozam13
Posted: Thursday, August 22, 2019 7:30 AM
Joined: 7/26/2019
Posts: 29


Rocketman, 

DH was diagnosed in April this year.  Neurologist psychiatrist said - MCI.  PCP after MRI and blood tests told us "dementia is creeping in".  Nothing more.  I'm not sure I can get DH to see doctors again.

A couple of months later I asked for referral - someone who can advise DH and he wakes  telling me he wants to die and said hurtful things to me.  PCP altered dosage of his meds.

He seems to be himself except for occasional agitation.  How long this will last is anyone's guess.  I feel doctors too are "resigned" to the fact that there's not much they can do.  How do you feel? 

 


Mainer1
Posted: Thursday, August 22, 2019 8:00 AM
Joined: 11/18/2018
Posts: 121


Rocketman,

After a couple of years with a neurologist who did not help at all, we finally found a very responsive neuropsychiatrist who is kind and supportive.  He asked that I send him weekly notes about my DW's condition as there were many changes in the first few months he was seeing her.  He reads the notes, and he responds.  When I had her in the hospital in June, the hospitalist requested a consult, and our neuropsychiatrist showed up in 25 minutes (it takes almost that long to walk the length of the hospital from his office.)  All that being said, he's doing what he can with meds, but the reality is that they will not do much beyond possibly stabilizing the psychoses for a time and slowing the progression of the disease.  As someone said earlier in this thread, environment is what it's all about.  Consistency is critical -- minimizing excessive stimuli can be very helpful.