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Wife just diagnosed
ssgmike
Posted: Sunday, December 6, 2015 8:18 PM
Joined: 12/6/2015
Posts: 11


My wife who is 61 was just diagnosed with early onset Alzheimer's by her neurologist and confirmed this past week following a brain Pet-Ct.

hard for me to write any more at this time, days are very long at times since she wants me with her 24x7 which I know is no good.

 Thou she is going to see her psychiatrist this Wednesday 

 

 Hope this is posted in the right forum area




jfkoc
Posted: Sunday, December 6, 2015 10:05 PM
Joined: 12/4/2011
Posts: 21244


Hi Mike and welcome...you are welcome to read and post on all of the forums but you will reach other caregivers on spouse/partner and caregivers.

Looking forward to getting to know you!


eaglemom
Posted: Monday, December 7, 2015 8:35 AM
Joined: 3/7/2012
Posts: 2774


Welcome to the message boards. Please look around at the entire website, when your time permits. You will find valuable information, helpful tips and others whom are in your same shoes.

As for the diagnosis, you are both still numb. Your mind is spinning and you don't know where to turn. This website / message board will become your go-to for support. Have you contacted your local ALZ chapter? Please do so. They may offer programs that you both will benefit from attending. I am one that loves knowledge, knowledge leads somewhat of an understanding of this situation. Post as often as you can, questions, whatever you need, we are here to help you help your wife.

As to her being glued to your side, is this something new? If its new with the diagnosis its that she's scared. Who can blame her? If she did that behavior prior to diagnosis I wouldn't think it would change. You will have to 'adjust' your thinking with this disease. You will find there is no 'normal.' You will adapt to where she is at - because she is not capable to adapting to you.

Here are several items you need to get in order. Do you have wills? POA? Medical? That needs to be done ASAP. Both names on the bank accounts? What about the house, car, any other accounts such as investiments? Get those in order and you will be in good shape.

Take it a day at a time. Some days will be fine and others will not. I'm sorry you are here, but glad that you've found the website.

eagle

 


ssgmike
Posted: Monday, December 7, 2015 1:54 PM
Joined: 12/6/2015
Posts: 11


thank you very much
alz+
Posted: Monday, December 7, 2015 5:27 PM
Joined: 9/12/2013
Posts: 3608


SSGMIIKE -

I have same dx as your wife and cling to my husband, and when there were times when I did not like him at all I still felt lost without him.

Right now you are in shock in some ways. Maybe you both knew something was not right for some time. If you or your wife want to post about that time, when you knew something was wrong until she got diagnosed, that can be very helpful to other people when they come to these boards.

In my view each person takes a diagnosis of a serious illness in an individual manner. Some set about fact finding, some fall apart. Some spend months or years suffering because they believe this is the Worst Illness Any One Can Ever Have. Because I helped care for my Dad who had it I did not think it was the worst. My experience since having it is that it pushed me to get my life in order on all levels.

A terminal illness that may take 20 years to play out can be quite an inspiration to balance out life. No one needs to be the sole caregiver, or friend, through this illness.

My suggestion is read the boards, figure out what you are willing and able to give to your wife, and seek help for what you can not or would hate to do for her in years ahead. Open your mind to other people coming into your life. Most of all open your heart to her.

The book I started with was called "Learning To Speak Alzheimer's". One learns to not argue the small points of life with a person with brain disease. It filters out what matters.

It opened me up to learn how to love my husband  more, respect his needs, understand this affects everyone I love in a different way, to lower my expectations of people. What I need is kindness, people to be nice to me, people to give me some slack, and some safety.

You will find others will explain best Practices which are basic ways of improving health for all of us, dementia or not. The treatment for ALZ is in providing an environment that shelters the person, allows them to be themselves, feel safe and loved.

I do not believe any of us disappear, nor do we ever forget anyone else. We lose the ability to recall certain facts, names, faces - which is not the same as the myth that we do not "recognize" grandchildren or partners, that we become empty vessels. This is just not true but comes from people not learning how to communicate with someone with brain disease. Rapid conversation is not the only way to communicate well.

Also recommend you read a book by a caregiver husband who posted here under the name LoneStray. He details his life caring for his wife, bringing her back to life by the way he behaved towards her. I forgot how to find the free PDF, think it was called Alzhiemer's My Way and might be on Amazon. I learned a lot from him.

Please post here any time you want.  It does not have to be a horrible, there will be moments of bliss, laughter, exhaustion - just like regular life. Your energy may play a huge role in how comfortable she learns to become with her cognitive losses.

 Be her Knight Protector, enlist help in caring for her as soon as possible.

 Much love and courage to you both.


Iris L.
Posted: Monday, December 7, 2015 6:26 PM
Joined: 12/15/2011
Posts: 18509


Lonestray's book is available online at:

https://www.btcloud.bt.com/?shareObject=0b4d7b97-f8b5-976d-fe50-4b722d9ed3f5


You may have to download the pdf.  I was unable to read it in pdf form online, but I could download it to my computer and read.  It is 175 pages long.

Iris L.


Mimi S.
Posted: Monday, December 7, 2015 6:54 PM
Joined: 11/29/2011
Posts: 7027


Welcome Mike and wife.

In my opinion, a psychiatrist is a waste of money. 

Instead, order, Living Your Best with Early Stage Alzheimer's by Lisa Snyder. Discuss it with each other. Sometimes a social worker can help you understand the feelings you have.

If your wife is able to join us we'd love to listen to her.

Begin Best Practices.

Make an appointment wit an Elder Law Attorney to get your wishes about future care and estate plans in order.

Call 1-800-272-3900 and ask about support groups in your area.


EarlyOnSetAlz
Posted: Thursday, December 10, 2015 3:07 PM
Joined: 11/30/2015
Posts: 11


Hi SSGMike and of course Mrs. SSGMike

I know exactly what you are going through. My wife got diagnosed at the age of 45 years. That is over 3 years ago. In your future there will be some downs, but also many ups. Concentrate on the ups and try to forget the downs as fast as possible.

Of course, I remember the moment when we got the diagnosis and the two weeks following this life-changing event. My wife and I needed roughly these two weeks to understand what lays ahead of us. And believe me, we still haven't figured out 100% of it.
But the question is: Do we want to know everything ahead of us? I don't think so. We have a pretty good idea what to expect since we went through the entire process with her mom, many years ago.

Today, my wife is not doing many things she used to, but seeing a good doctor and get the correct medication will make a huge difference for both of you and everybody else around you.

Here is my personal advice: Both of you take time to deal with this huge shock. When the time is ready for you, sit down together and take care of important papers. It sounds brutal, but a living will etc. makes life so much easier in the long run. These papers will most likely not be needed for a long time, but when it is time, it makes both your lives easier.

Don't forget to enjoy life. Just because of a diagnosis doesn't mean that everything ends or changes right away. Just like the day before the diagnosis, life goes on.

Give your wife a kiss and tell her that you are 100% behind her. Life does not come to an end.

Enjoy every day you have each other, even though sometimes it will be hard to enjoy.

Cheers,
Michael


Crushed
Posted: Friday, December 11, 2015 4:09 AM
Joined: 2/2/2014
Posts: 7445


Mimi S. wrote:

Welcome Mike and wife.

In my opinion, a psychiatrist is a waste of money. 


Dear Mimi

In my opinion this is an extremely inappropriate comment.

Psychiatrists treat people suffering from depression.  you have no idea what her condition is.  

 

You'll need Skype CreditFree via Skype

Michael Ellenbogen
Posted: Friday, December 11, 2015 7:06 AM
Joined: 11/30/2011
Posts: 4460


I agree with you. While I hate psychiatrist a good one brings lots of value for someone newly diagnosed. I really hate when I see moderators say stupid comments like that. It may be okay if they are someone in the forum but only intelligent comments should come from AA.

 


Iris L.
Posted: Friday, December 11, 2015 3:53 PM
Joined: 12/15/2011
Posts: 18509


I agree with Mimi, if the person is seeing the psychiatrist for help in dealing with a diagnosis of dementia.  Many families waste much time and money consulting a psychiatrist for marriage counseling or other such counseling.  Psychotherapy works by having the patient develop insight into their issues. A person with dementia will not develop insight into the issues that a psychiatrist brings up.

I spent two years with a PhD psychologist.  She refused to discuss my anxieties about possibly having Alzheimer's disease.  That was the crux of my anxiety.  Yet, we spent two years, basically going around in circles, because all the things she brought up had nothing to do with my life.  In fact, she made my life worse, because she cause people to withdraw from me.  She also told me "People with dementia are not eligible for services!"  Wow, that really made me feel good.--Not!  I felt lower than a snake's belly.  After that, I told her I did not want to see her again.  I am glad I had the psychologic strength to stand up to her.  I can't emphasize how much damage these clueless psychologists and psychiatrists can do.

Nevertheless, it depends upon the type of psychiatrist.  A geriatric psychiatrist may help with medications for behavioral issues.

I did have occasion to consult with a geriatric psychologist when I first began seeing my neurologist, but that was for three visits.  She then told me I did not have to come back, because the distance was too far, about 30 or 40 miles.

What I suggest is that the patient and family visit these message boards and seek support from peers, visit a local support group, and speak with a Care Consultant.  They are experts in dementia and caregiving, which outside professionals are not.


Iris L.


kittyk
Posted: Friday, December 11, 2015 4:00 PM
Joined: 5/16/2014
Posts: 2


Mike:  you have the right discussion board!  my best advice to you is to take care of yourself while you take care of your wife.  And know that there are many with the same situation and worries.  You are among friends.
llee08032
Posted: Saturday, December 12, 2015 9:34 AM
Joined: 5/20/2014
Posts: 4408


Dear Crushed,

There is another side of this coin requiring understanding PWD and their experiences with psychiatrists. Many have come to this board who have had their memory concerns minimized or disputed by psychiatrist. I was sent to a psychiatrist to rule out depression and anxiety before having a neuro psych eval. It was a negative experience for me. His area of expertise was treating opiate addiction and prescribing Subutex to reduce cravings for opiates! He disagreed that I had memory concerns or neurological impairment. I have to wonder what happens to PWD who believe and put their faith in Dr's like this who don't have a clue or any experience in treating PWD? 

I do not dislike psychiatrists and have worked with some really good one's over the years. The good ones are always the ones who have the capacity to genuinely care for their patients. They work hard at learning everything they can to enable themselves to provide the highest standards of care to their patients. Had I been able too I would have went to one that I know. Psychiatrists are trained mainly to treat psychiatric disorders, not neurological impairment. If a psychiatrist is needed one should ask before the appointment if the Dr has experience in treating PWD. 



alz+
Posted: Saturday, December 12, 2015 10:31 AM
Joined: 9/12/2013
Posts: 3608


Iris L. wrote:

Lonestray's book is available online at:

https://www.btcloud.bt.com/?shareObject=0b4d7b97-f8b5-976d-fe50-4b722d9ed3f5


You may have to download the pdf.  I was unable to read it in pdf form online, but I could download it to my computer and read.  It is 175 pages long.

Iris L.

 ******************

 Thank you AGAIN for finding things for me! I just got the paperback "Keeper" (?) and look forward to reading it as soon as my double vision calms down.

 Lonestray's book is the true story of a husband saying, "Wait a minute. I'm not letting some professionals tell my wife she can just sit and waste away. I'm taking her home and giving her her life back." and he describes how he did exactly that.

 I think it is one of the most important books I've read combating the notion that by definition of the diagnosis of ALZ it is my destiny to become a breathing zero. Now if I am put in the care of people who believe because I can not converse with them as I once did that I am therefore a blob of soulless plasma wasting money and time other people could use better, then perhaps I will also withdraw into silence.



Mimi S.
Posted: Saturday, December 12, 2015 5:13 PM
Joined: 11/29/2011
Posts: 7027


Hi Crushed.

Guess we'll have to agree to disagree. For the person who has been adequately diagnosed with dementia, of course there is a strong probablility of depression. The psychiatrist, in my opinion, is not the person to deal with this. If this person is still able to have a thoughtful conversation, a social worker, familiar with Alzheimer's or whatever the dementia diagnosis is adequate. 


ssgmike
Posted: Saturday, December 12, 2015 10:24 PM
Joined: 12/6/2015
Posts: 11


Mimi S. wrote:

Welcome Mike and wife.

In my opinion, a psychiatrist is a waste of money. 

Instead, order, Living Your Best with Early Stage Alzheimer's by Lisa Snyder. Discuss it with each other. Sometimes a social worker can help you understand the feelings you have.

If your wife is able to join us we'd love to listen to her.

Begin Best Practices.

Make an appointment wit an Elder Law Attorney to get your wishes about future care and estate plans in order.

Call 1-800-272-3900 and ask about support groups in your area.

I started this adventure by seeing a psychiatrist who spoke with both my wife and myself and wrote the script to go to a neurologist for testing for Alzheimer's and possible frontotemporal dementia. After an MRI, EEG and Pet-CT her condition is early onset Alzheimer's with heavy emphasis on frontal lobe syndrome. I'm in the process to see an attorney after the holiday. In between looking at the COPSA program at Rutgers. 

My wife is an LCSW

thanks
 

ssgmike
Posted: Saturday, December 12, 2015 10:32 PM
Joined: 12/6/2015
Posts: 11


thank you all again for your kind and supporting words.

My life right now is basically 24x7 with my wife. I do manage to get out when the weather is warm enough here in Monroe NJ to get some pickelball in and poker Tuesday night which initially was 4 hours now it's 2 hours not wanting to leave my wife alone too long. 
We are very close to each other and what ever it takes I will take care of her




 


TheSteven
Posted: Tuesday, December 15, 2015 6:21 PM
Joined: 10/11/2014
Posts: 167


Welcome segmike and wife,

I was diagnosed with Younger Onset Alzheimers at 56. I attribute the root cause of my ALZ to be the mercury dental fillings in my mouth. I improved after they were removed. Does your wife have any of those dark looking fillings in her mouth? I have a blog about that at http://thestevenalztreatment.blogspot.com if your wife has those mercury dental fillings. Read the links and watch the videos in the July 4, 2015 blog entry.


Michael Ellenbogen
Posted: Thursday, December 17, 2015 7:28 AM
Joined: 11/30/2011
Posts: 4460


 TheSteven - How many filings did you have? What test were you given that lead to the diagnose of AD.

 


TheSteven
Posted: Sunday, December 20, 2015 9:43 PM
Joined: 10/11/2014
Posts: 167


I had 8 fillings, two of them turned into crowns and 1 into a root canal.  My ALZ diagnosis was based upon 2 PET scans,  2 MRIs and 3 exhaustive neuropsych evaluations over a period of three years.   The last set of scans and neuropsych eval was done at Mass General.
Michael Ellenbogen
Posted: Monday, December 21, 2015 6:37 AM
Joined: 11/30/2011
Posts: 4460


 Very interesting I am about the same with you. I have 2 caps and 2 root canals. I wonder how many others have the root canals. I wonder if that is part of the combination. I had most of mine of over 20 years. I did check into your they with some top Dr in the field and they had no proof one way or the other on this topic. The mostly said they did not think it was related. You do so many things which in my opinion create concern of which is helping  or maybe a combination of things. I take 3 different items myself. They may be adding to the delay but not sure. I guess time will tell. A good friend who also thought he had AD turned out he did not after 7 years. He was also a medical person in the field. It turns out they now thing he cough some viruses that contributed to the masking of symptoms. I would think your case and mine should be studied. I just don’t know who cares to do that. If you have actually seen a reversal based on real test I would think it warrants others knowing. Thos results can not be based on how you feel as we are not always the based to judge as I have learned.  


TheSteven
Posted: Monday, December 21, 2015 8:22 AM
Joined: 10/11/2014
Posts: 167


Hi Michael,

Among the many links on my blog is this one that documents 60,000 cases of amalgam removal and among them are many Alzheimer's cases as was documented by Tom Warren's book. http://www.mouthbodydoctor.com/wp-content/uploads/2012/08/Results-Removal-Amalgam-Research.pdf

 

You may want to spend some more time reading and watching the video links on my July 4, 2015 blog entry since I have never met or heard of anyone thus far that has had Alzheimer's type symptoms or ALZ diagnosis who did not have amalgam fillings. Everyone in my support group had them. Also, a virus could also be a contributing factor as was in my case a parasite which was also in my blog.


Jo C.
Posted: Monday, December 21, 2015 10:54 AM
Joined: 12/9/2011
Posts: 13593


Hello ssgmike and Mrs.ssgmike, and  a very warm welcome to you.   It is heartening to hear how proactive you have already been, and also in getting your wife to the appropriate specialist(s) which will be key in managing things as very best can be as you enter this journey.  

I am an RN whose mother had FTD, and whose step-dad was diagnosed with Alzheimer's Disease.

The first weeks are indeed a shock, and it does take time to absorb everything.  I am also glad that your advocacy includes seeking the advice of an attorney.  I would like to recommend seeing a Certified Elder Law Attorney rather than a generalist and strongly recommend seeing an an Elder Law Attorney that is CELA certified if there is one near you.  You will need that elder law level of expertise as there are so many bits and pieces that are crucial to having a good outcome as time moves forward, and it takes a specialist to be able to situate you as best can be with no loopholes.

Having an excellent Neurologist who sees dementia patients as a routine part of his/her practice is a good way to situate oneself.  An accurate diagnosis for type of dementia is crucial as treatment for one type may be contraidicated in another and make things even worse, so it is great that this has already been accomplished.  Neuro is also very good at managing medications appropriately without over-medicating.  This all counts a whole lot as time moves forward.

You can find multiple forms of assistance from the Alzheimer's Assn. Helpline at (800) 272-3900.  If you call, ask to speak to a Care Consultant.  Consultants are highly educated Social Workers who specialize in dementia and they can be marvelous support.  They also can assist in problem solving and in providing contact information for helpful entities in your own community from many professional categories as well as finding local support groups.  there is no fee for this service.

If you call, it would be best to call weekdays, daytime hours as then most calls are routed to your local chapter which will have the latest updated and timely information regarding services in your area.  Just ask which office you are speaking to when calling. 

I would also like to invite you to post wherever you wish to communicate; I also suggest you may wish to visit and check out the Spousal and Partner Forum; a number of Members there are also dealing with Young Onset dynamics.

It is wonderful to make your acquaintance and am so glad you found us.  This Message Board is a place of much support and we are here for one another and that now includes you too!

With warmest wishes to you and your dear wife,

J.


Bob C
Posted: Tuesday, December 22, 2015 4:42 PM
Joined: 12/9/2015
Posts: 10


Thank you for this post. I am new to the site and this thread caught my eye. Like the gentleman that started this thread my wife is also 61 and was just diagnosed. My head is spinning right now, but reading things like this are an ENORMOUS help.

 

Bob


ChristineK
Posted: Wednesday, December 23, 2015 11:50 AM
Joined: 12/10/2015
Posts: 3


Hi everybody. I have a question for both Mike and Bob? How long did it take before you received a diagnosis?

My husband had 2 strokes last year at age 60. He has been on Coumadin for a blood disorder for 30 plus years. Now, one year after the second stroke, we see a big decline in his health. Mostly left side weakness, insomnia, increased difficulty speaking and writing. He is back in OT, PT and ST until our health insurance declines it again. 

I am the sole caregiver and with the help of medication, I can now make it through a day without falling apart. Is it wrong of me to want to know a diagnosis?


alz+
Posted: Wednesday, December 23, 2015 2:20 PM
Joined: 9/12/2013
Posts: 3608


Christine - You are wondering if your husband has vascular dementia?

 if you would feel more secure having an opinion on his cognitive state from a professional that makes sense to me.

Being the sole caregiver is pretty tough for anyone. I hope you find some support coming through for you and your husband in that department.

love and courage


Crushed
Posted: Thursday, December 24, 2015 5:17 AM
Joined: 2/2/2014
Posts: 7445


Mimi S. wrote:

Hi Crushed.

Guess we'll have to agree to disagree. For the person who has been adequately diagnosed with dementia, of course there is a strong probablility of depression. The psychiatrist, in my opinion, is not the person to deal with this. If this person is still able to have a thoughtful conversation, a social worker, familiar with Alzheimer's or whatever the dementia diagnosis is adequate. 


Depression is a DISEASE  It is  medical condition.  IMHO you are trivializing a very serious illness


alz+
Posted: Thursday, December 24, 2015 5:51 AM
Joined: 9/12/2013
Posts: 3608


Having lived with major depression it is a serious disease.

The question about a psychiatrist being useful in that regard may be that people remember when psychiatrists used to talk with people, explore roots of despair etc. They may be unfamiliar with the change to the medication dispensers of today.

Maybe she was thinking more "analysis" at this time would be less important than a neurologist's insight. Very few people living with ALZ are being dismissive of others about anything. We might say or write something that takes on a different meaning depending on the tone and energy applied by those who hear/read what we write.

I had been treated for "bi-polar" for years by local psychiatrist and given meds etc. Once diagnosed I was cut off. But I still take a mini dose of anti depressant he switched me to because he did know people with dementia should never be on anti psychotics or many of the current anti depressants.

When I come across a post that seems to rub me the wrong way, I change the tone and energy in my reading of it ... often get a different take on it then. well actually I hardly ever have to on this board and just avoid the CGvr boards.


The_Sun_Still_Rises
Posted: Thursday, December 24, 2015 6:20 AM
Joined: 7/24/2015
Posts: 3020


Everyone is free to their opinions. This is not a contest, of who is right or wrong.  People post something to (hopefully) gather opinions, experiences, and varying perspectives...from which they now have more information to make decisions.  There is no one right decision...and indeed, right or wrong isn't even part of it.  There are just decisions, and the consequences of those decisions. 

Also, a caregivers perspective is likely to be very different from the perspective of someone with the disease.  When something is posted in the Young Onset or Alz section, it is done to specifically querry the thoughts and opinions of those with the disease...and, I personally, welcome that and think that is great. 

It is very easy for well meaning caregivers to trample over people with the disease's thoughts, feelings, perspectives, and opinions...let's please keep this a safe place for those with the disease to share their knowledge and information while they still can, after all, the disease is taking enough from us...that no one needs to take any more from us.

Thank you.

PS: Am I reading wrong, but I cannot find the original poster mentioning ANYTHING about depression.  If I am reading right, the poster is using a psychiatrist to dx and treat DEMENTIA.  Carry on.


Crushed
Posted: Thursday, December 24, 2015 11:28 AM
Joined: 2/2/2014
Posts: 7445


The_Sun_Still_Rises wrote:

PS: Am I reading wrong, but I cannot find the original poster mentioning ANYTHING about depression.  If I am reading right, the poster is using a psychiatrist to dx and treat DEMENTIA.  Carry on.


The original line was


 Thou she is going to see her psychiatrist this Wednesday

 not "a" psychiatrist but "her" psychiatrist. That implies at least an ongoing clinical relationship that precedes the Dementia diagnosis.  Co morbidity of  dementia and psychiatric disorders is routine. 

 

the dementia diagnosis was clearly by a neurologist

 

 

 
And certain "opinions" also require a basis in facts, or they are abusive. 

 

 

 


Iris L.
Posted: Thursday, December 24, 2015 4:27 PM
Joined: 12/15/2011
Posts: 18509


Many people are "treated" by psychiatrists for years, without an acknowledgement that the issue is actually dementia.  I was treated by a PhD psychologist for two years who refused to acknowledge my diagnosis of cognitive impairment from my neurologist and my neuropschologist.  I finally had to fire her.

I was also treated by a psychiatrist recently.  Several months of my life and several dollars down the drain.  After a while I stopped taking the antidepressant he prescribed, and told him I was better, so I could stop the appointments.

In my opinion, a regular psychiatrist has nothing to offer a patient with dementia.  Some patients, nevertheless, do take antidepressants and seem to find some help.  It is most important to locate a psychiatrist who has an understanding of dementia and the areas of overlap with depression.  Also, the psychiatrist should have an understanding of apathy, and that apathy is distinct from depression.  Most psychiatrists are not aware of this distinction.  I have never met any one who is aware, and I have consulted many.  

Iris L.