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How does it feel?
always&4ever
Posted: Thursday, December 20, 2012 8:59 PM
Joined: 6/28/2012
Posts: 151


 

There is so much talk here about what caregivers are going through. I've been on the forums for those who have Alzheimers or other dementias, but I'm not finding what I am looking for.

 

 

For several weeks my DH has done pretty well. He seems to be adjusting to what is happening to him, but yesterday things changed. He was very agitated in the morning and when I got back from a short trip to the store I found him sitting in his lounge chair with the look on his face that lets me know he's having what we will call an episode.

 

 

I leave him alone during those times so as not to upset him, but later in the evening we talked. He said he had one of the worst episodes he's had. He felt it coming on that morning and it just got worse. He had lightheadedness and a headache along with the heavy foggy head. He said for two days before yesterday he had been in a light fog.

 

 

He tries to explain to me how he's feeling. He says it's like he can't focus on things, but yet he knows what is going on around him and hears me talking or whatever. He has described it as being in a void, foggy head, funky head, etc. What I see is him staring off into space, his eyes are glazed over, and he looks like he's struggling with something.

 

 

Can any of you who are on this forum who have EOAD, Alzheimers, or another dementia tell me what it feels like? What is it like for you when you feel it coming on or are in the middle of it? I think he keeps it general because he doesn't want to scare me and then again, maybe he can't describe it, which is what he says. I just really want to know as much as I can so maybe I can do better at helping him.

 

 

Thank you for your comments. I really appreciate them.


Nama
Posted: Saturday, February 16, 2013 6:05 PM
Joined: 1/25/2013
Posts: 49


My husband has AD and Parkinsons.  He has told me he feels foggy and says it feels like his head is in a barrel.  That lasted quite awhile but hasn't said it lately because I think he's gotten worse and can't verbalize those feelings anymore.
Lisa428
Posted: Saturday, February 23, 2013 4:24 PM
Joined: 12/5/2011
Posts: 795


Dear Always&forever,

 

I will try to explain what it feels like to suffer with AD/other dementia's.

 

In the beginning, I lost my ability to multi-task, then loud noises began to bother me, most of the my head was in a fog.  It was like stepping into the twilight zone.

 

I felt confused, scared, angry and depressed because I couldn't figure out what was going on.  I got lost driving to the library which was not far from my house.

 

Nothing felt right.  I couldn't remember things like whether I had taken my medications or eaten a meal.

 

My sense of smell started fading so most foods didn't taste very good.

 

I was kind of a mess!!  I was full of anxiety!!!  I was fighting my disease and it was making it worse!

 

Also, I was tired a lot.  Started taking naps.

 

I have been on meds several years now which have helped.  I eventually went to see a therapist to help me understand and cope with my illness and my New life.

 

Dementia's can kick your butt especially in the beginning.  It's such an adjustment.

 

I am very blessed with a wonderful family and some really good friends.  I am currently participating

 

in a clinical trial with a new Alz drug.  So far, so good.

 

I hope this has helped you.

 

  It's like when you are first waking up in the morning.  You are not fully awake, groggy.  That's what is it like for us most of the time

 

Peace and Hope,

Lisa

 

 


always&4ever
Posted: Saturday, February 23, 2013 5:01 PM
Joined: 6/28/2012
Posts: 151


Thank you Nama...I'm sorry your husband has gotten so much worse where he can't verbalize.  I am seeing new things happening and changing all the time, but my DH can still talk he just struggles with his words or forgets what he's saying at times.

 

Lisa428...Every thing you described is what I am learning is happening with my DH.  He is getting better about sharing with me.  I think he was afraid of how I would respond.  Now things are changing to the point he really has to tell me.  Just two days ago he forwarned me that he felt it coming on.  The funky head that is.  He experienced dizziness this time too, I noticed he was off balance when he was walking down the hallway.

 

Your description, "It's like when you are first waking up in the morning.  You are not fully awake, groggy.  That's what is it like for us most of the time." is exactly how he has described it to me on several occassions.

 

A month ago he drove to town and got disoriented.  He also had three days of the funky, foggy, groggy head.  On the third day we had gone hiking and I noticed him being off balance.  Now I noticed things were going on in those three days, but he was not talking so I left him alone.  The day after the hike he asked me if I had noticed anything while we were hiking.  I told him what I saw him doing and that I knew something was wrong, but didn't want to upset him.  I think that was a turning point.  He now knows I am seeing and I am not pushing him about it, which makes him more comfortable in talking to me.

 

There have been several things happen this last month.  He quit his part time job.  Next week is his last week.  He said he just can't do it any more.  I told him I supported him in whatever he feels he needs to do.  He also sat me down and went over our Quicken accounts to show me what to do.  We will have our POA's for medical and financial finished this week, along with our wills.  All our affairs are in order.  Mostly we are enjoying each other.

 

Thank you both for sharing with me.  I am trying so hard to be understanding and supportive without being smothering.  I just want to know what he's feeling as much as possible so I handle new situations properly.  I have found the more I know, the better I deal with things and the better he does.


Lisa428
Posted: Sunday, February 24, 2013 1:14 PM
Joined: 12/5/2011
Posts: 795


Dear Always&4ever,

 

I am glad that I was able to help you a bit.

 

I too have balance problems and have fallen several times.  Please, make sure his neurologist knows about the dizziness, headaches and balance issues.  It is very important.

 

I have, also, suffered several head injuries. Has you husband had these problems?

 

Is he on medications for his dementia?  I am on an Exelon patch, Namenda, Cerefolin NAC and an antidepressant which seems to help.

 

Good Luck.  Please take care of yourself.  It's as important as taking care of him.  You need enough rest too.

 

Peace and Hope,

Lisa


gregg1
Posted: Sunday, February 24, 2013 2:44 PM
Joined: 1/14/2013
Posts: 81


I'm interested in this head ache problem, I've had them for sometime. Not debilatating but constant. I'm only taking arosept but I don't believe it is a side effect

of that, I think I had them before the arosept. It's kind of hard to remember just when

it started though. I am seeing a different neurologist Tues. to see if I can quaify for

a new research study maybe he'll have an answer.

 


Myriam
Posted: Sunday, February 24, 2013 2:58 PM
Joined: 12/6/2011
Posts: 3326


Hi, Gregg1!  You should see your doctor about your headaches.  You may be having migraine headaches, but your doctor should be able to help you when you describe exactly what you are going though and whether there is anything that precipitates the headache (like forgetting to drink your daily cup of coffee, then getting the dreaded caffeine headache).
always&4ever
Posted: Sunday, February 24, 2013 3:49 PM
Joined: 6/28/2012
Posts: 151


Lisa 428...We have told everything to our primary who sent us to the top neurologist in the area.  Unfortunately this neurologist blew us off.  We don't even have a diagnosis yet.  Our primary did her residency under the neurologist and is very upset he blew us off.  She has taken everything serious and ordered all the appropriate tests.  The only things not done yet are the neuropsychological testing that take 6 hours and a spinal tap.  Everything else has been done and came back normal.

 

He is not on any medications of any kind yet.  In fact, he is quite healthy and takes nothing for anything.  We are runners, and just now got home from an 8 mile hike in the mountains.  We are very active and he is very high functioning, which I guess may be part of the problem.  However, the neurologist that blew us off upset DH so much he doesn't want to go see another until things get a lot worse. That way they will see he has something wrong.

 

Our primary doesn't want us to wait and wants us to go to Mayo or Vanderbilt.  We will be discussing this at our next appointment.  He says no, but a lot can change in that 2 weeks.

 

I am taking care of myself the best I can.  We are both basically retired now and are spending a lot of time together doing all the things we love and taking the opportunity to experience some new things.  Right now it's all about just enjoying each other and having fun.  I know the day will come this won't be possible.  We have planned a big trip this summer to go to a National Park he has always wanted to go to.

 

Gregg1, Myriam is right.  You really should see a doctor about the headaches.  Our doctor has been advised of DH's headaches and has found nothing.  We believe it goes with whatever is causing the foggy head as the headaches often times accompany the foggy head, as does the dizziness.  So, it could be the same for you, but it's best to be checked to be sure.


Mimi S.
Posted: Sunday, February 24, 2013 6:22 PM
Joined: 11/29/2011
Posts: 7035


I am so sorry the big neurologist blew you off. 

 

Hopefully she can find someplace that can give you the neuro-psych. You're lucky to be able to have the spinal tap.

 

Like your husband, I was aware of my symptoms early on and eventually was diagnosed. Now over 6 years ago. 

 

Do have your husband join us here.

Best Practices are so important.

And both of you read as much as you can about the disease.

Dio find your local Alz. Chapter and, if possible, become active.


always&4ever
Posted: Sunday, February 24, 2013 6:39 PM
Joined: 6/28/2012
Posts: 151


Thank you Mimi S.  No spinal tap yet.  No 3 or 6 hour neurospych testing yet.  We are doing good with the best practices.  It's been our lifestyle for a long time.  I am reading everything I can get my hands on.  He does read, but has a hard time focusing so he reads short articles, but not about dementia as it upsets him too much. 

 

He doesn't feel it is Alzheimer's, but is willing to accept it might be dementia or Mild Cognitive Impairment.  He has left it to me to keep track of everything for him so I have all his records ready to go to the next doctor.  He wants me at all his doctor appointments because he can't remember everything and doesn't always understand what they are talking about.  I handle all medical things for both of us.

 

He was an engineer and is an amazing man.  I have been so blessed to have him as my husband.  As for him coming to the forum, I don't think he will.  He is a very to himself kind of person.  He doesn't know I am corresponding here, but knows I am reading everything I can here.  As things go I am sure he will ask me to come here to ask questions if he has any.  He does the computer, but has had a couple of times where he was frustrated by it.  I am figuring he is starting to have some problems with it.

 

I don't say much as I don't want to upset him.  He is still able to do so much on a normal day.  It's when he has the not normal brain days.  And it seems it has progressed quickly this last year since he told me in May that he was having problems.  He has actually gone from having his foggy headedness for a couple of minutes or so at that time to it lasting for hours and now up to three days.

 

Sorry, I get going.  Back to responding to you Mimi S.  I have been in contact with our local Alzheimer's Association group.  They have sent me information.  I am becoming more and more educated all the time.  DH has been awesome at cooperating with getting POA's done for medical and financial and doing our wills.  Thanks for all your help Mimi S.  I truly appreciate it and have read many of your posts which have educated me so much.


Iris L.
Posted: Monday, February 25, 2013 12:04 AM
Joined: 12/15/2011
Posts: 16241


always&4ever wrote:

 And it seems it has progressed quickly this last year since he told me in May that he was having problems.  He has actually gone from having his foggy headedness for a couple of minutes or so at that time to it lasting for hours and now up to three days. 

 


Naturally, I don't know the cause of your husband's foggy headedness, but I will tell you that Exelon patch and Namenda have done a world of good for me as far as being able to function independently.  I was doing poorly before I began these meds.  They are not curative, because I still have imparied cogntive functions.  But I can think BETTER than before.

My neurologist still says I don't have dementia.  But he asked me to try the Exelon patch, and to see what it did for me.  Fortunately, I had a good response!  Sometimes we don't know what will happen until we try.

I was afraid to begin Exelon because it was like admitting that I did have Alzheimer's.  I put it off for three months.  What made me decide to start Exelon was a couple of incidents with leaving food unattended on the stove and burning up my pots and having the smoke alarm go off.  Also I let the water run in the tub for over an hour and flooded my bath and bedroom.  I was desperate for TREATMENT!  I knew I could not live alone if I could not be trusted with a stove and a bathtub!

I feel like I caught it in time.  I can use the stove and take a bath, even though I take precautions.  I believe I can live independently for a long time, thanks to these medications. 

I don't know what the future will bring.  I stay on my meds and follow Best Practices.  They all are working for me.

Always, I hope you find answers for your husband.  Don't let the doctors delay.

Iris L.


John50
Posted: Monday, February 25, 2013 12:13 AM
Joined: 3/14/2012
Posts: 140


I would say that there is not a good answer to "how does it feel?". Because these diseases are of the brain and there is so much still unknown about the brain is perhaps why there isn't a good answer. What I mean is, I can tell you things I feel, I can tell you things other people diagnosed have said they feel and while we all share some similarities the diseases are also very unique with each person due to exactly where and how fast damage occurs. I was first diagnosed with FTD in 2007 and then went to Mayo Clinic in 2009 where they started from scratch assuming nothing and told it was medically undeniable that I had dementia, the problem was which one because my scans did not look like anything they normally see. My father was in very late stage dementia at the time and passed of the disease in March of 2010 and doctors believed I had the same thing he suffered from. Because his brain was donated for research we learned in 2011 that he died of Alzheimer's so my diagnosis was changed to atypical Alzheimer's Disease. Since I am very atypical what I am experiencing at this point is not likely to be similar to what he is experiencing, I never get these feelings coming on that he describes, I have some days that are better than others. Things that can make a day much worse than others are things like stress, any type of illness including a simple cold and tons of stimulus around me. I wonder if this neurologist is a cognitive neurologist? They are neurologists that sub-specialize in the brain and diseases of the brain such as dementia. I would highly recommend going to a cognitive neurologist that concentrates their practice in the dementia field. Generally a PET scan can tell them more than most other tests because it shows any areas of the brain that aren't working with the use of a radioactive dye. It helps to either prove or disprove dementia but they also must rule out many other things that can mimic dementia symptoms. It may be any number of other things going on that are causing his symptoms so a good cognitive neurologist can figure all of that out.
always&4ever
Posted: Monday, February 25, 2013 8:00 AM
Joined: 6/28/2012
Posts: 151


Thank you Iris...I am pushing as much as I am able.  My primary talked about putting him on one of the dementia meds, but she and I agreed that until we get a definite diagnosis it might not be wise.  He is displaying some FTD symptoms and if that is the diagnosis the meds may not work or could cause serious problems.  I am blessed to have her as our doctor because she is so knowledgeable about dementia.

 

John50...you are so right about the differences between patients.  I just so want to understand.  Perhaps your experience might be different, but there may be something that is similar.  I am taking all these experiences being shared and hanging onto them so should I see what you are describing happening I have a little something to work with.  I am grasping onto everything I can.  I have read a lot of your posts and have learned so much from you.  Thank you John50.

 

Unfortunately, we went to the top dementia expert in our area.  He spent all of maybe 20 minutes with us at our first visit with him and a mere 3 minutes at our second appointment.  He was very dismissive and seemed as though he would rather be anywhere but in the exam room with us.  Perhaps being an expert he too is burned out.  I don't know.  We will go to another expert who will be one of the best in the state.  We will have to travel to go see them, but will be best.  After we get the final diagnosis, we will pretty much just go to our primary for all his needs and only go to neurologist if something unique comes along she can't handle.


makowskiteresa
Posted: Saturday, May 4, 2013 9:39 AM
Joined: 4/29/2013
Posts: 10


I have been diagnosed with early stage mixed Dementia - Alzheimers and Vascular - and have felt very lost since then. I am having trouble socializing and generally keeping my spirits up. Trying to connect with others going through this is helpful, as is trying to live "one day at a time". Please let me know if you have any other ideas. Thanks.
makowskiteresa
Posted: Saturday, May 4, 2013 9:44 AM
Joined: 4/29/2013
Posts: 10


I have had brief episodes like that of your husband, and they feel like I am very I detached both friends my environment and those around me. Others' simple acceptance of what I am going through has helped. My own acceptance of it is harder. I feel like I am fading away and this is very disconcerting. Others' interaction with me is sometimes helpful. I'd appreciate hearing how your husband and you cope with this.
makowskiteresa
Posted: Saturday, May 4, 2013 9:47 AM
Joined: 4/29/2013
Posts: 10


I think I know how this feeling of "fogginess" is. I feels as if I am fading away. I wonder where my sense of myself has gone. I desperately want it back in at least some form. Can you help me? Thanks.
makowskiteresa
Posted: Saturday, May 4, 2013 9:50 AM
Joined: 4/29/2013
Posts: 10


I am really struggling with feelings of depression since my diagnosis of Mixed Dementia (Vascular and Alzheimers). It would be so helpful to hear how others are coing with it. The feelings of "being in a fog" are familiar and I am afraid of how these episodes are effecting my relationships. Any ideas? Thanks.
makowskiteresa
Posted: Saturday, May 4, 2013 9:54 AM
Joined: 4/29/2013
Posts: 10


I can relate to these feelings of being "foggy" and they make me feel so lonely. I would like to hear from others going through this and how they are coping. I feel as if I am fading away and it frightens me. Thanks for any input you may have.
makowskiteresa
Posted: Saturday, May 4, 2013 9:56 AM
Joined: 4/29/2013
Posts: 10


It really feels lonely. Friends say I seem detached, yet I do want to engage with them. It feels as if I am fading away and losing whatever identity I have had. Very frightening. Am not sure how to cope with this and keep hope. Help!
makowskiteresa
Posted: Saturday, May 4, 2013 10:42 AM
Joined: 4/29/2013
Posts: 10


Mine feels like a sense of detachment both from others as well as my surroundings. It is lonely and would help if someone would talk to me even if I cannot response in my old way. I try to use meditation and exercise to keep my energy flowing so that I don't feel that old "fading away" feelings. It is not always easy and have at times fallen into a deep depression. Medication and psychotherapy have helped in this regard. I am planning to join a support group this week which I'm also hopeful will lift my spirits and give me some hope.
always&4ever
Posted: Saturday, May 4, 2013 10:59 AM
Joined: 6/28/2012
Posts: 151


makowskiteresa wrote:
I am really struggling with feelings of depression since my diagnosis of Mixed Dementia (Vascular and Alzheimers). It would be so helpful to hear how others are coing with it. The feelings of "being in a fog" are familiar and I am afraid of how these episodes are effecting my relationships. Any ideas? Thanks.

makowskiteresa...I am so sorry you are going through this.  I see where you have written several comments here, but I only quoted one.  Depression is definitely a part of this disease.  We have struggled with it too.  Both patient and caregiver experience the depression.

 

In our case, we have each other to lean on.  Do you have a spouse or some kind of support system?  We also try to find humor in things.  This is not always easy and at times we just can't laugh, but we try to keep a good attitude as much as possible.  Lot's of prayer too.

 

My husband has become detached as well.  He has left his job and is uncomfortable in social situations.  Mostly due to fear of embarrassing himself because he can't think or speak right.  He is only in the early stages right now with some signs of moving into middle stages.  We do not even have a diagnosis yet, but it is so obvious to us what is happening.

 

As for effecting relationships, I have found that by being honest about what is going on and educating those few he's allowed me to tell has helped.  Yes, there are those who will run, and there are those who will not always react as we want, but there are also those who take what we've told them and taught them and stand right beside us.  I believe education is key in helping others to know how to deal with us.

 

You also asked how do we cope.  My husband keeps himself really busy.  He is either working in the garden or doing something in the yard, or he is working on a project he can handle, or playing his guitar, or planning and reading about a trip we are taking in July to Glacier National Park.  Now each day is different depending on what is happening with his head.  There are days he is not able to do planning, or play his guitar, or work on some projects.  Those are the days he works in the garden.

 

It's hard when he can't do certain things on a given day, but by adjusting and doing what he can it seems to help him to cope.  He is also into exercise so on a bad day he will walk or run or ride the stationary bike.  At least by doing this he is busy for part of the day.  If it is really bad then he makes a fire in the fire pit and breaks up limbs and burns them in the pit.  If he is burning in the pit, I know it's a bad day.  I can tell by what he is doing.

 

He has progressed from when I first wrote this post seeking answers so I could understand.  Episodes last for several days with fewer days in between, but he has adjusted to how he feels.  He told me it's happening more frequently, but not as bad.  As we discussed the "not as bad" part of his episodes, we came to the conclusion that he is getting used to it so it may be as bad, but he doesn't notice because of getting used to how it feels.

 

My grandmother has vascular dementia and we learned with her that stress made things worse.  If you can find ways to relax, which is what a lot of the activities my husband is doing, it could help you immensely.  Take a walk, listen to music, burn wood in a fire pit, play an instrument, write a journal, read a book, read a Bible and pray, meditate, find humor in the things around you, pet a dog...there are so many things that can lower the blood pressure and bring calm to your life.  I know this all sounds so simplified, but it is working for us.

 

We came to realize there is nothing we can do to change what is happening.  It is what it is.  We are focusing on acceptance and enjoying each other and those around us as much as possible.  We know the days will come that it won't be as simple as this, but fretting won't change it.  We are being pro-active and have already done financial and medical POA's, wills, and basically have our affairs in order.

 

I hope this has helped.  I will also add you to my prayer list.  You are on a good forum to get answers and find others who are where you are right now.  Have you introduced yourself to the forum members yet?  I would suggest you do that.  Again, I am praying for you, even right now as I write you and I will continue to do so.

 


Iris L.
Posted: Saturday, May 4, 2013 12:23 PM
Joined: 12/15/2011
Posts: 16241


Teresa, Always gave you excellent advice about how to cope,  In fact, I think I'm going to add some of her advice to my own regimen. 

That's how we do on these boards.  We learn from each other and take what helps, leave the rest. 

I feel into a deep depression in 2010.  It was very hard.  I just kept working on my spirit until I came out of the depression. 

Visiting the patient boards daily helped me a great deal.  The patient boards were very busy in those days.

It's very important to communicate with others like you.  The general public, even family members, just don't understand.  They can't help you much.  I'm dealing with this myself.

Please feel free to begin a new thread and introduce yourself.  Tell us about yourself.  Are you on any medications?  Do you live alone?  Have you stopped working?  Are you on SSDI?  Are you making plans for your future?  Please let us know.

Iris L.

 
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