Is dementia getting worse?

sunshine5

DH a senior hasnot been diagnosed with Dementia but I think he has it and is getting worse. Before he couldn’t remember long time ago events, lately he can’t recall what I said few minutes ago. I have to repeat myself. Went to audiologist last week, got him a hearing aid, doesn’t want to wear it, does not acknowledge he has a hearing problem, does acknowledge is having memory problems.

Trying not to put him on any meds, dr prescribed Aricept, holding off on it. Prefer to deal with alternative therapy.

Neurologist appointment next month.I seem to be doing more and more for him.

How do u cope when u see the bigger problem around the corner?

JJAz

"Prefer to deal with alternative therapy."

What kind of alternative therapy is he getting?

Arrowhead

Having lived with this for almost 5 years, I just try to take it one step at a time and I try to not think about what the future will hold. Luckily, the symptoms of this disease do not manifest themselves all at once. It does leave us time to adjust.

Crushed

With alzheirmers ALL therapy is alternative therapy Nothing works, at least not for very long.  because the symptoms come and go it is a gold mine for quacks

sunshine5

DH not getting any medication or alternative treatment at present. 

I understand massage, meditation, music and aromatherapy may help 

Crushed

sunshine5 wrote:

DH not getting any medication or alternative treatment at present. 

I understand massage, meditation, music and aromatherapy may help 

I agree they may help YOU deal with the stress of being a caretaker

Chocolate chip cookies keep my wife happy, But no one calls that therapy for her disease

Aricept has symptomatic benefits for some patients at a particular early phase of the disease  you cant "save" it for later

Michael Ellenbogen

You need a lot of education and it should have been done yesterday and no time to wastes. It is sad has the person could be doing better if you just listened to the doctor and not playing doctor.

Jo C.

Hello Sunshine and a very warm welcome to you.   This is a challenging time, and when we are new to all of this, we fly by the seat of our pants so to speak until we become educated and truly understand the dynamics and all that can entail.  It is extremely important to have adequate information and education, so read, read, read valid writings and then read some more.  Knowledge is indeed power AND it is also important for the well-being and comfort of your dear husband.   Our Loved Ones (LOs) must depend upon us.  By the time symptoms are seen, the brain is already damaged to one degree or another and the ability to use logic, judgment and adequate reasoning and the ability to process is already compromised.  Our LOs do best with an environment that is structured and has routine.  Change is our LOs enemy; structure and routine are friends.

An excellent, very highly thought of writing can be found by using Google; there is no fee for this, it is, "Understanding the Dementia Experience," by Jennifer Ghent-Fuller; a specialist in dementia.  It is available at no cost in pdf and can be downloaded for printing; it explains so much and can also be of interest to family members for information and education.

Also trying to discuss their memory loss with our LOs or engage them about their symptoms is usually an exercise in futility once a certain state has been reached which it seems your husband may already be at.  This is not a positive or a kindness and most often causes frustration and irritability if not downright agitation at times.  He has lost the filters to process and understand this at the level you are able to do.

Every person with dementia is different; each will have their own set of symptoms and path through this disease; BUT there are also similarities and facts. 

It is difficult for us caregivers; in the beginning we are operating on our old belief systems and do not know what we do not know - that is important.  Often we also operate with a bit of denial to one degree or another.  One would be best served by having a primary care MD for the medical issues and also by having a dementia specialist to manage all things related to dementia.  Our primary care MDs are awesome at so much, but they are not on the cutting edge of dementia and that can make a significant difference.

It is important that the specialist determines the actual type of dementia present; there are multiple different types of dementia of which Alzheimer's Disease is only one. This is important because an accurate diagnosis is crucial.  Treatment for one type of dementia can well differ from another and inappropriate meds for an incorrect diagnosis can make things far worse. A good Neurologist who sees dementia patients as a routine part of his/her practice is excellent at making an accurate diagnosis for dementia type.

As for Aricept, this is not a medication that can be set aside for use sometime down the road in the far future.   Aricept, in Alzheimer's Disease, for some persons, some of the time, and most often earlier in the disease, can actually improve cognition, function and other dynamics and for some, somewhat slow down the dementia process. If the person is diagnosed with FrontoTemporal Dementia, this med is in a group of drugs that is most often considered contraindicated medication for FTD.

Using "alternative therapies," while able to occasionally deal with some negative behaviors,  is NOT treatment and can sometimes cause unintended negative consequences; so caveat emptor on that one.  You are doing the best you can at this point on the first rung of the learning ladder; once we have more information and understanding, our approaches and way of thinking most often changes.  Hopefully the future appointment with the Neurologist will be helpful. 

As for coping; when we first hear this diagnosis it is a stunning shock; the earth shifts under our feet and what we thought of our futures suddenly takes an abrupt change.  Many of us even feel a bit of denial, but mostly that is based on lack of knowledge and need to maintain homeostasis.   Initially I found that I was reeling and from lack of knowledge was a bit off  on what I felt was needed at the time.  Coping comes with, as already mentioned, having adequate knowledge and putting a good care team together with the primary MD, the dementia specialist, family and friends as well as getting all legal and financial issues addressed with professionals and set into place.  This is support on various fronts.  It comes with seeing an elder law attorney to get all legal necessities addressed and is important to do this while our LO can still sign their name - for my LO who may have balked at "Power of Attorney and other terms, I simply called this, "estate planning" and clued the Elder Law Attorney in on that need.   For legal issues, an Elder Law Attorney specialist will in all probability be the source of best knowledge for your plans and needs for now and in the future.

It helps to have someone to talk to openly about our LO and about our fears and anxiety.  Sometimes this is a family member, a friend, clergy, or a counselor.  When we gain knowledge and get all of our ducks in a row, this begins the coping process as we gain a  bit of control.  You will also need some time to yourself, even if only an hour or few at a time to enable a bit of respite. I used to drive to the ocean and just sit there listening to the sounds and feeling the breeze and finding a bit of ease.

NOTE:  The Alzheimer's Assn. has a 24 Hour Helpline that can be reached at (800) 272-3900.  If you call, ask to be transferred to a Care Consultant.  There are no fees for this service.   Consultants are highly educated Social Workers who specialize in dementia and family dynamcs. They are wonderful support for the caregiver, have much information and referrals and can often assist us with our problem solving.

As you become more educated to dementia and all that entials, your way of thinking and knowledge will evolve and the feeling of control will be far more felt.  Some of our LOs have a fast journey through dementia; others have a long journey with symptoms evolving slowly.  All of this getting addressed takes a bit of time, it does not happen overnight; so treat yourself well and know you are taking the steps to address all of this one step by one step; it soon all comes together.

Do continue to come here and talk; we all are on the same path or have been; we understand and we do get it.  There is so much experiential wisdom here; you have found a good place to land.

Let us know how you are and how things are going, we will be thinking of you and we truly do care.

J.

Ed1937

Sunshine, has the neurologist run a battery of tests? A diagnosis requires several tests. Anyone can guess that he might have dementia, but there are many other conditions that can mimic dementia, and when treated, the symptoms could go away.

David J

Hello sunshine, glad you found us. There are people here who have gone through what you are experiencing and can help you with knowledge and advice. It can be overwhelming trying to learn about dementia while your LO is starting down the path. 

We were lucky to already be plugged into the medical community so finding a neurologist was easy with recommendations from other physicians. We already had a psychiatrist on board and he had several patients traveling down this road. It sounds like finding someone to follow your DH should be Care Objective #1. There are other important things to do, like seeing an Elder Law Attorney to get your estate plan documents in order, and financial planning for what is coming. Do a search on this site for Certified Elder Law Attorney. Depending on your age and financial situation you may need to prepare for Medicaid. 

Any topic or problem you have, just ask here. There are many nice people willing and able to help and advise. Feel free to ignore advice too!  There are many diverse backgrounds and personalities here so don’t take anything too personally. Some people are very direct, almost rude. Ignore tone and accept the knowledge. 

Good luck with your DH and come back often. 

sunshine5

Thanks so much for all your replies and information. The reason I didn’t start DH on Aricept is that the side effect is seizure. DH had been having seizures past few years and is controlled by Keppra.

Thanks again

jfkoc

Hi Sunshine,

The only thing you know is that your husband's hearing is poor enough that he would benefit from wearing hearing aids. He has vetoed this so you are going to have to make adjustments to your communication.

You have no diagnosis of AD or any of the other dementias many of which are treatable. It is hard to imagine a Dr prescribing a drug before a diagnosis following proper protocol has been made.

If this is  in fact the case then I would do two things. I would google "diagnosis of Alzheimers" in order to become completely familiar with the process and I would find a new Dr. 

The alternative treatments you mentioned sound lovely and would certainly do no harm but they will not, I repeat not, stave off  the progression of what you see if in fact  your husband has AD, FTD, VD or LBD.

Michael is spot on when he says there is a lot to learn and we will be right here learning with you by sharing information and support.

ADDED: I posted this yesterday...hope it helps;

https://www.alzint.org/about/symptoms-of-dementia/diagnosis/

Rescue mom

Sunshine, to the question about the alternative treatments/therapy you mentioned. They may make him feel good while they are happening, but they will not do anything to prevent or stave off dementia. Music is often calming, and listeners often enjoy it, but it does not prevent dementia. 

There’s no harm in doing any of those things now, if he enjoys them,but they will not treat dementia, if that’s indeed his issue. 

If a knowledgeable specialist thinks he does have dementia, many people found that Aricept slowed down or delayed the symptoms. Many others had no effects at all, and some had bad side effects. But nothing has been found that prevents or cures.

Jo C.

Hello again, Sunshine.   The additional information re your husband's history of seizures is helpful in understanding.   You are on the right path; you have a pending appointment with a Neurologist, and that is what is appropriate and necessary.  After a thorough workup, Neuro can advise you regarding the type of dementia present, and can also make recommendations on medication.  That will give you a start.

Let us know how you are doing; it is certainly a lot of adjustment and it takes a bit of time to catch one's breath and begin the steps to put everything into place medically, legally and socially in the home and in everyday life.

Sending warmest of thoughts your way,

J.

aod326

Hi Sunshine. I'm not answering your questions/concerns, sorry. I am so interested to see that your DH has been experiencing seizures for a few years and now appears to have dementia. My DH presented with seizures 6 years ago, out of the blue. For the first couple of years he had 3 or 4 partial seizures every six weeks, increasing over time to at least one per day.  He was treated for epilepsy and over time developed dementia. Despite extensive neurological testing, no diagnosis was able to be made, only lots of "not that"s (not AD, VD, NPH, CJD etc.).

Does this progression sound like your DH's?

I know you probably have bigger things on your plate than answering this question, so please don't feel obligated to.

Good luck.

Aazam

Thank you for sharing this information. I’m new to this site and find your post/response very helpful.