Skip to main content
PBS logo
 
 

Discussion Forums - Caregivers' Forum Caregivers' Forum

Topic: Alzheimer's or Dementia?

Club rule - Please, if you cannot be courteous and respectful, do not post in this forum.
Page:   Unlock Forum posting with Annual Membership.
Generic Profile avatar
Subject: Alzheimer's or Dementia?
Date Posted: 4/3/2007 6:09 PM ET
Member Since: 7/19/2006
Posts: 2
Back To Top

Not that it makes a lot of difference.  My 86 year old husband had radiation treatment for cancer in 2005 and in '06 underwent a colectomy to remove a 10" section of colon due to a persistent polyp.  Subsequent to the surgery, which left him very weak, his doctor put him on Coumadin (his tests showed a heart murmer, possibly the precursor to a stroke, to which his family is prone).  Within four weeks, during which time they were trying to regulate his dosage,  he began to be  mentally confused and his short term memory was gone.  When he got lost driving to his best friend's house one day, a trip he had been making for 20 years, I finally looked up Coumadin on the Internet and found that mental confusion and loss of short term memory were possible side effects of the drug.  We saw his doctor, who had never heard of that side effect, and Dick went off the Coumadin immediately and started taking Aricept.

There has been no improvely in the past nine months.  He has good days and bad days.  He is okay when he is with family and friends and talking about old times (when he can hear the conversation).  But on a daily basis he will repeat the same question five or six times in one hour.

 
Does anyone out there have any experience  with this?  Dick can shower and shave himself and dress himself (so far).  But I have to give him his pills twice daily and at that he will ask me ten minutes later if he is supposed to take pills.  He is generally in a good mood but can be very belligerent at times and argumentative.  He is frequently rude when we are out in public and I cannot allow him to walk away by himself because he will get lost and not know what is happening.

 I have COPD, myself, and so my physical strength is pretty low.  Cooking is a special problem because I am on oxygen.

 Any suggestions?  And experience?  Any comments?  A hug?

 

Thanks for "listening" to me

 

Nana Diane 

 

armstrongpaw1 avatar
Date Posted: 4/3/2007 11:49 PM ET
Member Since: 3/7/2007
Posts: 7
Back To Top

My mother had many of the same symptoms.  At one time she was also on Coumadin, had to go off it because it caused uncontolled bleeding everywhere under the skin.  It was a very dangerous situation.  She, however, was having TIA's (trans ischemic attacks).  I was told by her doctor these were "mini-strokes" which would damage a small portion of the brain by disrupting the blood supply.  Eventually they have a cumulative effect.  Her short term memory was terrible, repeating things many times in a day, or even an hour.  I had to take over the checkbook because she would mail payments to the wrong company and when they were returned, she would send them back to the same wrong company.  Also could not balance her account or even keep good records: ex:-she would write down part of a record, check # without the payee or without the amount, or payee without other info.  She also started delusions, saying she had people in her apartment who wouldn't leave, or a nun in a white habit who kept coming to her door and would not stay away.  These episodes were very real to her and would sometimes frighten her terribly.  I also noticed, as the condition progressed, she lost the ability to understand the written word or to remember (understand?) instructions about something new she wanted to use.

My best suggestion is to discuss his symptoms and the progression of them with his doctor.  Maybe he can run some tests and determine the cause of his mental deterioration.  TIA's will not show up in any test, or at least 5-6 years ago, they didn't.  Could be medicine has improved in this area.

It's depressing to think about, but eventually Mom could not live alone and because I had to work full-time and we could not afford all day help, and she was then in a wheelchair after breaking her hip, it was best for her care and safety to transfer her to a nursing home.  I was lucky and found one only 10 minutes from my home so I could visit every day.  Even in the best of nursing homes, you are more assured your loved one is getting good care if the home knows you will be there frequently and at different times of the day.

She was very upset over going into a home, however, they took care to include her in activities and see to it that one of the other residents came by frequently and acted as a guide or "big sister".  For the time that she could participate, she made a few new friends and enjoyed many of the activities.  Unfortunately, her mini strokes were becoming more frequent and getting larger and her condition deteriorated rapidly in a six month period until just before she turned 90 she suffered a massive stroke and the end came quickly after that.  Actually, gruesome as the thought may be, I think I want to go by way of a massive stroke.  The doctors said, if she suffered any pain, it was very fleeting and then she was aware of nothing.

I'm sorry I can't give you a miracle cure or better news, but be sure to check with his doctor.  It could be a matter of a mixture of medicines he is on, or a blood test may reveal his body is no longer producing some chemical it needs which can be added to his diet.

I wish you much luck in getting the answers you want to hear and remember to take care of yourself also. 

MikeNRobsMom avatar
Friend of PBS-Silver medal
Date Posted: 4/11/2007 7:54 PM ET
Member Since: 4/6/2007
Posts: 7,917
Back To Top

It could be a combination of things that have caused your husband's change in mental status.  Since he is 86, his mind just might be 'failing' as many parts of the body do as we get older.  It may have been a coincidence that the change came about with the use of Coumadin.  I have been an RN for 13 years and have never heard any of my patients compalin of this. (That is not to say it has not happened though.)  Since things have not improved after stopping the coumadin, chances are, that is not the cause of it.  Did the doctor choose to put you husband on any other blood thinner once stopping the coumadin?  If not, he could be having TIA's as Patricia has mentioned.  This can cause these sort of symptoms as well.  

I have seen good results with Aricept with some patients but others seems to become more confused with its use.  It sounds likes there has not been any improvement with its use so I question as to whether it is dementia.  Maybe it is and this is  just not the drug of choice or once again, the problems could be caused by TIA's or other things that could be occuring in the brain.  You could always ask the physician to do a CT scan or MRI of the brain to see if there is any sort of atrophy (shrinking of the brain) or if there are signs of TIA/Stroke.

My heart goes out to you as it is never easy to care for an ailing family member~especially when you have medical problems as well.  Do you have any family that is able to help you out?  Have you looked into getting someone to come to the house for a couple of hours a day or so to help with meal preparation or other things that need to be taken care of?  You need to take care of yourself as well!

When your husband had radiation, what area of the boyd were they treating?  The colon?  Did your husband under chemo therapy as well?

I wish I had more answers for you.  Feel free to PM me if you would like.

Generic Profile avatar
Date Posted: 4/12/2007 1:26 AM ET
Member Since: 7/19/2006
Posts: 2
Back To Top
There has been an additional factor put into my husband's condition(s). On Tuesday last week he fell and broke his right hip. They screwed it together Wed p.m. and no he is in a nursing facility undergoing rehab. Of course he doesn't know how long he has been there or that he has had rehab therapy -- just cusses me out something fierce because I won't spend more than an hour or two at a time with him. Hospitals and COPD don't go together well. I did hear from a close friend whose husband is in a similar condition that his doctor put him on a medication used for Parkinson's Disease and it has improved his memory and cognitive function considerably. I will mention that to Dick's doctor tomorrow. Thanks to all of you for your words of encouragement. Diane
MikeNRobsMom avatar
Friend of PBS-Silver medal
Date Posted: 4/12/2007 1:30 PM ET
Member Since: 4/6/2007
Posts: 7,917
Back To Top

Diane,

I am sorry to hear that your husband has fallen and broke his hip.  I am sure you have mixed feeling about him being in a nursing facility.  Don't take to heart the harsh words your husband may say.  It is the confusion talking.  Frequently anesthesia can cause the confusion to become worse if they were already having problems with memory.

Now that your husband is receiving 24 hour care, it is time to take care of yourself!

Generic Profile avatar
Friend of PBS-Double Diamond medal
Date Posted: 5/13/2007 8:23 AM ET
Member Since: 7/5/2006
Posts: 2,030
Back To Top
It could still be the medicine or combination of them.  My DIL's mother was in hospital & they took her off all medicine & called in all her family to be there when she died.  She is back home & doing great.  It was too much medicine & their reactions.  I hope everything improves.
Generic Profile avatar
Friend of PBS-Silver medal
Date Posted: 5/15/2007 7:58 PM ET
Member Since: 2/17/2006
Posts: 349
Back To Top

About two years ago in the AARP magazine I read where doctors are giving older people two much med. The drug companys make the meds for people 50 and younger. Our bodys change at about 50, so we don't need as much.

They had a Doctor that went around to nursing homes and would redo  the drugs does by giving less and it made a big difference.My Mom and I both only take a half of what ever the doctor gives us. We don't take anything without checking it out on the internet. If I find something I want to show the doctor I print it out.

I like to of died on Liptor. I was taking it and I became sick, they treated me for the flue, and all kinds of lung problems. I found on the internet after six months that lipitor could cause this. I called my doctor he said he had never heard of that. I stopped taking it. With in two weeks I was much better, but the damage it did to my lungs are still there. I am real careful at what meds I take.

 

 

VickyJo avatar
Limited Member medalFriend of PBS-Silver medalPBS Blog Contributor medal
Date Posted: 5/31/2007 9:29 AM ET
Member Since: 5/19/2007
Posts: 4,763
Back To Top


Last Edited on: 1/18/09 6:03 PM ET - Total times edited: 1
Generic Profile avatar
Date Posted: 7/5/2007 5:14 AM ET
Member Since: 3/9/2007
Posts: 18
Back To Top

I was very moved by your experience & wish I could offer help in a big way.

Because it is 5am & I'm trying to finish some things up, I will go right to my point.

I agree talk to your(his) dr 

You might mention to him ( just in care he is not completely current): there are several new meds either on the market/ or being tested as I write. 2 are currently being sold, & others are being researched.The only reason I mention research-because that can take years & years, is that there may be something in the pipeline & they might be looking for older subjects. Right now I have no direct info...only a business (sic) article I read last week. Shold dr & family decide to-your husband could have one of the newer drugs added.

IF, IF  YOU WANT TO FOLLOW THIS SKETCHY LEAD UP, See if Dr knows how to make research contact.

THE ALZHEIMER ORGANIZATION -HOME, & local chaptershave a great deal of info.

*****PLEASE MAKE SURE YOU GET SOME HELP FOR THE STRESSFUL POSITION YOU ARE IN.

eg.Maybe your town has a MEALS FOR WHEELS PROGRAM (Senior free food delivery). GOOD LUCK.

Eileen Wankoff,PhD

Psychologist & frequent bouts of brief caretaker role

Shaylinn avatar
Date Posted: 8/2/2007 1:41 AM ET
Member Since: 6/28/2007
Posts: 192
Back To Top

Diane,

I can't speak to the possible drug reaction but I do have to say that your husband's symptoms - including the fall -- sound very similar to my grandfather. And he was eventually diagnosed with an Alzheimer's like disease called Lewy Body Disease.

So I would definately check out the Alzheimer's info that Eileen mentioned and here are some links my family and I have found very helpful ... for Alzheimers  and Lewy Body 

If I can help in any other way feel free to PM me or respond here.

Sending internet hugs 
Trish

Generic Profile avatar
Date Posted: 8/19/2007 2:30 PM ET
Member Since: 11/20/2005
Posts: 11
Back To Top

Well just found your forum,

My husband has dementia now that I look back I believe he's had it for about 6 or more years he was diagnosed about 4 years ago .We tried Aricept but every complication that could happen due to that med happened to him .So after 3 months I chose to take him off of it. he is still able to do things for him self (dress ,eat) etc. now he may put gravy on his tomatoes and mayo on his meat but so what.We do have a slight problem as his thing is raking up rocks and being we live in a very rocky place i have rocks scattered all over my yard no he doesn't pick them up .So like making lemonade when you only get lemons in life I have chosen to make a rock wall from front of property to rear of property (350 ft)

I have found a wonderful book which is a big help to me in as I can read it and say o k it's not me he hates it's the disease talking.

When your loved one has dementia.I found it on amazon.com

                                 .

syntheticashe avatar
Date Posted: 9/7/2007 7:18 PM ET
Member Since: 8/3/2007
Posts: 401
Back To Top

HOLY CRAP!!!!!! :O My grandma's on coumadin! Has been for nearly a year!! maybe she's not just being lazy and whiney -- what if she really DOES forget how to make her own phone calls sometimes?!?!? YIKES!!!!! :(

trevorsmom avatar
Date Posted: 9/13/2007 10:58 AM ET
Member Since: 7/25/2007
Posts: 4
Back To Top

Dear Diane C,

I know what you are talking about my Dad is 89.  He was writing his own checks, cooking supper for me as I work but in April he had a blood clot in his lung and now his mind is so confused.  He is in a nursing home and it breaks my heart, I miss him so.  some days he is almost his old self, and other days he doesn't know what is going on and keeps asking why he is there.  My heart goes out to you.  All you can do is be there for him and ask questions of the doctors and work for his good.  I'll pray for you and your husband.

 

God Bless you,

Candy (trevorsmom)

Generic Profile avatar
Date Posted: 10/7/2007 3:37 PM ET
Member Since: 11/20/2005
Posts: 11
Back To Top

Things are going along her as usual,last week I had to go to the Dr and get some meds for myself as the stress was getting toooooo much for me I found I was crying a lot but now I have some little pills that just make me able to cope a little better.

If only his anger would go away.What makes it so hard is hubby never said a harsh word to anyone he was always the sweetest person .but like the Dr says this is no longer the person I knew as my husband it is a different person using his body.So forgive me if i just rattle on.

Thanks mary

thk avatar
Linda S. (thk) - ,
Standard Member medalFriend of PBS-Silver medal
Date Posted: 10/8/2007 12:13 AM ET
Member Since: 10/4/2006
Posts: 317
Back To Top

I've been very lucky in that my sister has hardly ever shown the anger that so many loved ones do.  She gets frustratedand no wonder!

I'm blessed, and when I read the message boards here, and at alz.org, I realize again how very blessed I am.  It could be SO much worse.



Last Edited on: 10/8/07 12:13 AM ET - Total times edited: 1
Generic Profile avatar
Date Posted: 10/20/2007 7:57 PM ET
Member Since: 10/20/2007
Posts: 3
Back To Top

Diane

So sad to read you saga.  I am a critical care nurse with over 30 years experience and from what I know and experienced, as we age, our brains shrink 19%.  Possibly this explains some of the confusion and inability  to assimilate information as we age.   Alzeheimers aside, 80 year olds seem to lose the filter on their speech, saying pretty much what pops into their head.  The last stint I did in Intensive Care, I noticed that regardless of how healthy anyone was, if some event ended a 65 or 75 or 85 year old in my unit, more than likely their immune systems were so frail at those ages, they usually didn't make it out of Intensive Care.

But it does seem as though your husband is in the throes of Alzheimers.  My mother is also experiencing this.  We notice mood changes in her unlike any we had seen in her life time.  She became more honest in what she said, and just blurted out what she felt  which was so unlike her. 

Find yourself an Alzheimers support group.  This will give you needed co-horts to share experiences and to get support.  As a nurse, I know how incredibly difficult caring for a love one 24 hours a day, 7 days a week can be.  We in health care get to go home at the end of our shift.  You as the family member don't have that luxury.  Also with the support group you can find oodles of information to educate yourself on what to expect and alternatives.  Good luck.

Sue

Generic Profile avatar
Date Posted: 1/4/2008 7:26 AM ET
Member Since: 1/4/2008
Posts: 2
Back To Top
Generic Profile avatar
Subject: Mom with alzheimer's
Date Posted: 1/4/2008 7:36 AM ET
Member Since: 1/4/2008
Posts: 2
Back To Top

Hi Diane,

I am so sad for anyone that has to go through seeing a loved one decline with dimentia.  My Dad had vascular dimentia and died from a massive stroke in August.  My Mom has advanced alzheimers and is in a nursing home. 

Whether the dimentia is vascular or from Alzheimer's is almost irrelevant because they do such similar things and the outcome is most often the same.  Aricept will help for early to middle stage dimentia and Namenda for later stage sometimes helps.  It did help my Mom's dimentia somewhat and might have kept her out of a nursing home for a year.  Now she is terminal and down to 82 lbs.  She has had the disease for about 8 years and is 78 years old. 

I have read books that have been of great value.  Top of the list is " The Validation Breakthrough" by Naomi Feil.  It is about communicating with the dimented person and is invaluable.  A book that everyone with elderly parents should read is Elder Rage ( can't remember the author right off hand ).  It is a horror story that will make you so grateful you have the person to take care you have!

A sanity saver for me was being involved with this wonderful caretaker forum.  It is English and you  might ask why I chose that and not the US forum.  It is because the US forum is just huge and hard to get real one on one and quick response.  Try this forum, the folks there are fabulou and you will meet people in our situation from all over the world. http://www.alzheimers.org.uk/talkingpoint/site/index.php

I have been through alot taking care of both parents and been through the medicare, medicaid, nursing home and hospice rituals.  I will be happy to share any info I have.

Take care,

 

Generic Profile avatar
Date Posted: 2/5/2008 4:47 PM ET
Member Since: 10/27/2007
Posts: 643
Back To Top

Praying for you,  Diane.

Generic Profile avatar
Subject: Dementia
Date Posted: 6/28/2008 7:12 PM ET
Member Since: 5/5/2007
Posts: 4
Back To Top

There is an excellent book recommended by neurologists and those who have a loved one with dementia

36-Hour Day: A Family Guide to Caring for Persons with Alzheimer Disease, Related Dementing Illnesses, and Memory Loss in Later Life by Nancy L. Mace, Peter V. Rabins

Also, visit the Alzheimer's Association website. www.alz.org They have a lot of information on medications, types of dementia.  Alzheimer's is a dementia.  It is the most prevalent form of dementia.   The offer many tools and support for those affected by the disease, their family and friends.

My mom had mixed dementia.   (Alzheimers, and stroke induced dementia).   It is a horrible disease that robs us of our loved ones.

Maria

 

 

LargePrintBooks avatar
Standard Member medalFriend of PBS-Silver medal
Subject: Lewy Body Dementia Association
Date Posted: 1/6/2009 11:24 AM ET
Member Since: 5/9/2005
Posts: 7
Back To Top

Shaylinn,

My name is Ronnie Genser and I am a past board member of the Lewy Body Dementia Association (www.lbda.org). Currently I volunteer for the LBDA as their national support group facilitator. In this capacity I work with new support group facilitators and help establish new support groups. There are currently 45 support groups across the U.S. and Canada. For a list of LBD support groups, go to

http://www.lbda.org/category/4185/local-support-groups.htm

If anyone is interested in starting a support group in their area, please send an e-mail to genser@mindspring.com and I'll be happy to invite you to the next new support group facilitator teleconference training on January 28 at 8 pm ET.

For a wealth of information about Lewy Body Dementia, go to www.lbda.org  Note: www.lewybodydementia.org does not exist.

LargePrintBooks avatar
Standard Member medalFriend of PBS-Silver medal
Subject: Books on Lewy Body Dementia
Date Posted: 1/8/2009 12:00 PM ET
Member Since: 5/9/2005
Posts: 7
Back To Top

Shaylinn,

I meant to also include in my post above a link to books on Lewy Body Dementia and Dementia Caregiving:

http://www.lbda.org/category/4114/books-on-lbd-and-dementia-caregiving.htm

DiD avatar
DiD
Subject: alzheimers vs dementia and coumadin
Date Posted: 9/8/2009 12:39 PM ET
Member Since: 9/1/2009
Posts: 3
Back To Top

Hello.

As a brain injury/spinal cord injury nurse for many yrs now I can speak a little on this subject. Dementia is seen in the elderly, it can be caused by both medical conditions and simple aging processes.  Both alzheimers and dementia are progressive. Alzheimers can effect younger people and they have found there is a possible genetic component in it. Not all elderly people become demented.  The behaviors and symptoms of both illnesses are similar. The medicines used to try to manage and/or slow down the progression of both illnesses are often similar. Certainly the Alzheimers associations websites and information and resources will be of great help to families of both illnesses.

 I of course am not familiar with all the case histories of the people on this site, but I feel it is important to point out that coumadin does not cause confusion in the 99.9% of the people on it. Of course if you are that 0.1% it becomes significant.  Please do not jump to the conclusion your family members should stop coumadin. Discuss this with your neurologist/cardiologist  and find out why your family member is on it. It is indeed given prophylactically , to help prevent blood clots. The clots are more dangerous than the medicine. There are indeed other medicines that can be used instead, but coumadin has been found to be the cheapest and most effective drug. In heart and clotting problems the drug is a lifesaver. It is managed by keeping a certain level of the drug in the system.This level can be kept high or lower depending on the health issue being managed.  It should be monitored carefully with periodic blood tests. The lady who had the family member with the bleeding issues, I would wonder if that person had been going for the blood tests.

It is also true that anesthesia is extremely hard on the elderly. I like to tell my patients and their families that health is like a tight rope.  When we are younger it is fairly easy to get back on the rope. As we age it becomes harder and harder. Until finally we fall off and cannot get back on. As our concurrent medical conditons increase the effects of them all compound. The elderly only have a certain amount of endurance left to them.

The brain MRI's of both conditions show shrinkage. The loss of those brain cells is not something the body can recover from.  We can only try to understand, to protect them from physical harm, to love them always.

Sincerely

Generic Profile avatar
Subject: Alzheimers
Date Posted: 9/24/2009 8:40 PM ET
Member Since: 8/1/2007
Posts: 19
Back To Top

My father had alzheimers for 7 years.  I am sure he had it much longer,when it was

 bad enough to diagnosed.  He died in March of this year.  We learned so much about alzheimers.  Themost important thing that I learned wasto love the person and hate the disease.  Remember when he says hutful things tht it is the disease talking and not your loved one.  This sould very much like Alzheiners.  My father took Aricept and Namenda. He prayed daily that the Lord would take him with something else before the Alzheimers got bad. To the day he died he still recognized everyone, but beginning to have trouble remembering the grandkids and great grand kids names.  So it was a blessing for him when he died. He was at Hospice at the time, and they were truly a blessing. We still miss him, but know that he is no long suffering.  Find a support group to join. There are many books that you can read, but I highly recommend "The Thirty-Six Hour Day.  This book will cover thingthat you haveexperienced and let you know what to expect and handleit.  You will bein my prayers.  This is truley a dread disease for the patient and the family.

 

Shannon Wolfe

Cageme avatar
Subject: I relate
Date Posted: 10/23/2009 12:58 PM ET
Member Since: 6/21/2008
Posts: 18
Back To Top

Yes..  my Mom going on 95 has lapses in memories.  She remembers things much differently than I do.  She forgets that she just ate, took a pill, asked my the same question.  The strange thing is ... if she feels someone has insulted her or defied her... that is indelibly etched in her memory.  Case in question: My nephew asked her to endorse a Savings Bond that was given to his father 10 years ago because it was made out in his fathers name and/or Mothers name.   His father passed away three years earlier and nephew still had the bond in his possession.  Since the nephew is the sole heir to my brother's estate.. he drove over to Mom's to have her accompany him to the bank to endorse and cash this 10 year old bond.  She is still FUMING about being taken advantage of and spews her anger whenever his name comes up.  The Bond was one of three that were given to each of her three adult children ,   I still have mine.  The third bond was cashed by our sister some years ago before she passed away. 

Just strange how memory serves her when she has an anger issue.  Day to day activities and routine are forgotten within 5 or 10 minutes.   Now how does THAT work?  Just askin!     Daughter in California

Page: