Caregiving resources for every stage of the disease.

Site Maintenance Completed.   Click here for details.

RSS Feed Print
Need your thoughts.
Horse Lover
Posted: Friday, December 8, 2017 5:30 PM
Joined: 11/4/2017
Posts: 122


I don't know where to begin.  The last few days have been a blur.  My docot told me that one of my anitdepressents isn't working anymore.  NO JOKE!!!  He gave me Trintellix and said it helps with both depression dn memory.  Well, after the first dose, I was SICK.  AGAIN.  I'm sick from the concussion.  I'm sick from the rivastigmine.  I'm sick ecause of the antidepressants.  I can't handle one more change.  Too much has happened just since August. 

  My doctor said that he would look over the results of my spinal tap.  He said that it provides strong evidence that I am in early stages.  He is my psychiatrist, but he is also a neurologist.  He just isn't my alz neurologist.  He said that I could even have alz even if that study didn't offer confirmation of my idagonois.  I was so hoping that he would say something that would make me feel better.  I was ssent to him todayt my my internist.  I was falling apart in his office.  My internest ran some blood tests and called the psychiatrist and insisted that I go see him.  Before I left, while my blood was being drawn, the internest started asking how much longer I have before I can retire.  I told him I'm only 57.  My employer allows retirement at 59 1/2, but I can't retire that young because I need social security.  I'm still wondering why he was asking. I'm worried that he doesn't think I'll be able to keep working that long. I'm so depressed that I can't think.  I told both doctors that I don't feel safe.  I even asked the internest to put me in the hospital.  Instead, he said I should stay home form work this weekend.  Three 12 hour night shifts at home by myself.  My husband had to go in.  I'm at home alone.  I don't feel that I can deal with all of this by myself, but here I am.  By My SELLF.  My head in going in too many bad directions.  I just want out of this constant turmoil.  Most of the time, I can hide how I feel as long as I'm around someone.  But, for the last week I have been breaking down daily.  I'm trying to accept this diagnosis, but I just don't know how.  I'm SO angry. 


Iris L.
Posted: Friday, December 8, 2017 6:31 PM
Joined: 12/15/2011
Posts: 15449


Horse Lover, I read your initial post and you have two conditions that might be impacting your memory loss and other changes that you have noticed.  The two conditions being depression and concussion.  Both of these can change over time.  The diagnosis of dementia involves decline over time.  I don't think you have had extensive neurocognitive testing.  It is best to get all the diagnostic data in before coming to a conclusion.  Even then, there may be some changes after a few months have passed.  In other words, don't think that your future is set at this time.  Not all the information is in.  Be aware that Social Security Disability Insurance is available for those under 65 who must take a medical retirement.  


For now, do what your doctor suggested, and give yourself a break, even for this weekend.  If you will be alone, use this time to center yourself.  Use whatever calming and self-soothing techniques that you have at your disposal.  Don't put any pressure on yourself.  I find that getting out in nature helps.  Sometimes, I take a very brief walk around my condo complex and take deep breaths.  Since you will be alone, you can cry and yell at the top of your lungs!  Let it all out!  In the end, center yourself and nurture yourself.  Discouragement is par for the course.  We always have to  be on the lookout for it, and work on defeating it.  I wish you an uplifting weekend.  Keep reading and posting.  I read from the Archives.  There is much wisdom and encouragement there.


Iris L.


Horse Lover
Posted: Friday, December 8, 2017 7:12 PM
Joined: 11/4/2017
Posts: 122


Thanks Iris.  It's funny that you mentioned getting out with namure.  Just as I pushed post, a neighbor cme up my drive.  I didn't know him but he knew my horses were out.  Him and his wife started helping me try to catch the 4 of them.  Then, the people who moved in next door (out in the country next door) drove up.  I didn't know them either.  Their whole family got out of the car and helped me.  It was really uplifting to know that I have such caring new neighbors.  I didn't feel quite so alone for a little while. 

Both neurologists pointed out that the only way to be sure if a person has alzheimers is through an autopsy.  Why is it you're so sure that all of these other tests are going to prove anything different than what they say.  Both of them have told me that, with my family history coupled with my symptoms, I most likely have it.  I DON'T want to have it.  I'm trying to figure out how to sort it all out.  I feel like I lose a little bit almost every day.  Why do I feel that way if I'm ok?  I wish I felt ok.  I'm so frustrated with the maybe yes, maybe no, constant contradicting information and mostly, the wait for the PET scan.  I was told today that I may not be able to be in the study because of the concussion.  Without the study, no PET scan. 


jfkoc
Posted: Friday, December 8, 2017 7:31 PM
Joined: 12/4/2011
Posts: 15613


I am so saddened by your post and wish that I could be next to you and give you a huge hug and sit with you so you would not be alone. I know others here would be with you if they could.

We will be here and the alz # is 800-272-3900.

The anti-depressant you took seems to be relatively new. One of the side effects is nausea so it is recommended to start with a very small dose. Perhaps your dose was not right for you...these things are so individual.

I agree with Iris that it is helpful to let our feelings out...keeping them in they have a tendency to grow.

Please check in so we know how you are doing!


Iris L.
Posted: Friday, December 8, 2017 8:16 PM
Joined: 12/15/2011
Posts: 15449


Horse Lover, I'm glad your neighbors were able to catch your horses and be of good help to you.


Regarding what I posted above, it's not that I think that something will be different.  It's just that with my professional background, I have the idea to wait for all the data to be in before coming to a conclusion.  This was the way I was taught.  In your case, as the concussion heals and as the depression lifts, you may notice some improvements and some changes.  I don't know.  But it's possible.  But you might be exactly the same.  Only time will tell.


Iris L.


Horse Lover
Posted: Saturday, December 9, 2017 5:01 AM
Joined: 11/4/2017
Posts: 122


JFKOC, Thank you for the hugs.  I can feel them and I greatly appreciate them.  Also, thank you for reminding me about the 800 number.  I keep forgetting that it is available.  I couldn't get the new medication yet.  The pharmacy didn't have it in stock. It will be available after 2 this afternoon.  However, I did take something for anxiety (more than I was supposed to but enough for me to relax and go to sleep).  I rested fairly well.  That helped a lot.  I'm still crying, but not as much.  It is so nice to know that you were here with me.  I feel that my husband is puling away and irritated/concerned that I am missing so much work.  I wish I could tell him how I feel.  The more upset that he seems, the more I worry and find it difficult to talk with him.  I think I'm going to go try to get some more sllep uptil he gets home from work at 7.  Thanks for your thoughts.  It makes me feel better.  Hugs!
jfkoc
Posted: Saturday, December 9, 2017 10:16 AM
Joined: 12/4/2011
Posts: 15613


We made it through one night. Good, only two more to go.

Think about writing down how you feel for your husband. You can decide later if you want to live the letter to him or not. As a caregiver, my husband had LBD, I was frightened a lot and looking back I wish there had been more communication between us regarding our journey.  

If sharing what you need to share with your husband does not provide what you need find another source or more that one...please always count here as one share site.

Crying? I think it is essential.

Too much med? OK but not often, please.

Diagnosis of AD. It is only through the process of elimination that AD is selected. My husband went from MCI to Parkinson's to LBD. There is just such an overlap and one must not attribute 
all ails to dementia. PWD have concussions, UTI's and other things that can add to any dementia condition.

Here is a good protocol for diagnosis;

https://alz.org/alzheimers_disease_diagnosis.asp

So today...what's the plan...a walk? I will if you will.


jfkoc
Posted: Saturday, December 9, 2017 7:45 PM
Joined: 12/4/2011
Posts: 15613


Checking in to see how you are. We will be with  you inn spirit tonight so you will not be alone.
Horse Lover
Posted: Saturday, December 9, 2017 9:11 PM
Joined: 11/4/2017
Posts: 122


JFKOC.  Thank you so much.  It makes me feel better that someone out there understands how I feel.  I want my husband to be able to understand.  However, the more I research and learn about it myself, the worse I feel.  I've seen my sister, mom and several family members go down this road.  I feel bad that I didn't spend more time with them, especially by sis.  She is 13 years older than I am and she took care of me a lot when I was little.  She was my hero.  I wish I could have done more for her and with her.  I was just scared.  Now, I'm even more scared.  I know where this road ends.  I know how ugly this gets.  I don't want my poor husband to go down this road with me.  I love him so much and I know how much this is going to hurt him.  I can tell he is scared.  I am too.  The wait for the PET scan seems unbearable.  One of my doctors said that I am getting worse. I can see that for myself.  My sister went down hill fast.  I'm worried that I am following her path.  She lost her job before she turned 62.  She was in a nursing home before she was 65.  Now, she's 71 and we are just waiting for her to die.  How awful.  I don't want my husband to have to deal with that.  I thought I had our older years planned out.  There is no way to be prepared for any of this.  I knew that there was a possibility because of my family history.  However, I didn't want to believe it could happen to me.  I was ready to take care of my husband if he got it.  I don't know how to prepare for the shoe to be on the other foot.  All I can say is that I'm terrified of what may be our future.
llee08032
Posted: Sunday, December 10, 2017 8:04 AM
Joined: 5/20/2014
Posts: 4377


HL,

This is so much for you to take in and you sound overwhelmed. Try not to think ahead too much and hope and pray that progression is slow. Also do some research on persons who are living well with dementia and living meaningful, purposeful lives. Encourage your husband to get help and support. He can call the 800 # also. This is a major life change and you need to try everything you can to self soothe and calm yourself. Stress is our worst enemy and it can decrease our cognitive capacity and exacerbate symptoms. You must look for ways to reduce and decrease stress in your life. Being angry under these circumstances is totally normal. Let off some steam. Don't put any pressure on yourself and cut yourself some slack (big time). ((((((((HL)))))))))) hugs 


Horse Lover
Posted: Sunday, December 10, 2017 9:55 AM
Joined: 11/4/2017
Posts: 122


llee, Thank you so much for the suggestions.  I hadn't even though about researching people who are living well with this disease.  I also didn't think about having my husband call the 800 number.  I have always been the one who does the research/fact finding and try to teach him.  It hurts too much to be the one to tell him what I have learned.  Researching others doing well with the disease may give me a different outlook.  Until now, I have only had the view of watching family members go downhill really fast.  We are all worriers and we all try to protect our family from everything that we can.  Maybe if I can change that, I'll go down slower.  Thank you so much for your suggestions.  Hopefully it will help me with a different outlook on this disease.  I'm at least going to try it.  What I'm doing is just turning me into an emotional mess.  Thanks again!

 

 


jfkoc
Posted: Sunday, December 10, 2017 11:23 AM
Joined: 12/4/2011
Posts: 15613


Night two over. I did not walk yesterday, did you? I did catch a ride to the meat market, watch a bit of TV and go through more of my husbands books. I swear they multiply in the night.

My husband was first diagnosed with MCI. It then went to Parkinson's and finally landed on LBD. Our retirement journey was not as we expected but it was pretty gentle. Decline was slow and I can say that it was only the last months of who really knows ho9w many years that were rough and only the last weeks very hard. I did allow the use of Haldol ( not recommended for LBD) to calm him.

You do not know how the future will play out. None of us does but certainly the diagnosis that you have and the family history and memories must weigh heavily and be frightening. I have absolutely no idea how to make that load lighter but I do concur that  you begin to investigate others who find ways to live "well".

These boards will be a lot of help but there are more avenues available. I will look up some additional sites for you.

Support for your husband? I went to 4 meetings in two states. They did nothing for me. I suggest he plug into alz.org. It is an excellent site as is http://www.alzheimersreadingroom.com/.


llee08032
Posted: Monday, December 11, 2017 7:25 AM
Joined: 5/20/2014
Posts: 4377


- Dementia Alliance International

www.dementiaallianceinternational.org

Dementia Alliance International is a registered non-profit organisation whose membership is exclusively for people with a medically confirmed diagnosis of any type of ...

  1. Young Onset Dementia Support Group - Home | Facebook

    www.facebook.com/YoungOnsetDementiaSupportGroup

    Young Onset Dementia Support Group. 2.5K likes. This page is for people who are experiencing the impact of Dementia before age 65. Share stories &...

  2. Alzheimer's - Early Stage Support Group - Facebook

    www.facebook.com/events/149542135610750

    Early Stage Support Group for people with dementia who want to inform themselves with current information and share their experiences with others.


jfkoc
Posted: Monday, December 11, 2017 7:31 PM
Joined: 12/4/2011
Posts: 15613


Horse lover...

here are two more you might want to look into and of course our own Canada blogs and post the link to her new ones on this thread

https://www.dementiaallianceinternational.org/

https://truthfulkindness.com/

This is night 3...I think. How are you doing?


Horse Lover
Posted: Monday, December 11, 2017 8:31 PM
Joined: 11/4/2017
Posts: 122


JFKOC, Thank you so much for the info.  I actually made it through all three nights, with your help.  It was comforting to know that you were there, if only in spirit.  My new antidepressant was finally available and I picked it up last night.  I took it before you posted and I set back and tried to relax so that I could sleep.  It worked.  The medicine helped.  Unfortunately, I slept 12 1/2  hours.  I hope that is the exception and not the rule.  I really was exhausted though.  My husband is home tonight and its nice to have him here.  Even though he is just watching tv and not talking much, he's HERE!.  He's close enough that I can reach out to him if I need to.  I love having him close.   It's comforting. 

However, he went out the door at just the right time this afternoon.  A few days ago, he said he found my keys in the fridge.  When he told me about it, I thought he was joking.  I've hung them in the same place since 2004.  When he said it, I looked at the hook and they were there.  End of conversation, or so I thought.  Today, I again couldn't find them.  I made a comment out loud about I wonder where my keys are.  As he was walking out the door, he said "I don't know.  Try looking in the fridge".  I instantly wanted to scream.  I almost followed him out the door, but then I started thinking that maybe he was serious.  He doesn't joke around much.  I did find them... in my coat pocket.  I later asked him if he was joking when he told me that he found my keys in the fridge.  He said no.  At that point, I froze.  Because this is something I have never done in the past, it scared me and I didn't say anything.  I just held my breath. 

He doesn't read much and he doesn't really socialize.  So, about all that leaves is videos.  Sometimes I can talk with him about this issue, but it's hard.  I start crying and I stop talking.  I don't know how to help him know what is caused by AD and what is just old age creeping up.  Heck, I'm not really sure myself.  I do know that I have never put my keys in the fridge in the past and that really bothers me.  Do you know of any videos that I could get that would help him understand what is happening?

p.s. I'm going to send you a request to connect through the inbox.  Sometimes, I feel really vulnerable on these boards. 

 


Horse Lover
Posted: Monday, December 11, 2017 8:42 PM
Joined: 11/4/2017
Posts: 122


By the way, jfkoc, I found someone on FB who has a weekly blog about his AD experiences.  I only listened to the most recent one, but he seems to be quite positive.  I'm going to save these for when I am down... for a pick me up.  Thanks for the suggestion of looking for someone who is living well with the disease
jfkoc
Posted: Tuesday, December 12, 2017 8:20 AM
Joined: 12/4/2011
Posts: 15613


I feared I was off by one day but the note to be with you was up by my bed so at least I was there for all the nights..

There are movies to watch. I will post the inquiry.

We are vulnerable here and feeling are hurt sometimes. part of the reason is the printed word, no voice tone, no facial expression.And then sometimes sometimes someone is overwhelmed and posts something they would not have on another day and sometimes we react like we would not on another day. There are days that we just do not have enough slack to give another.


Horse Lover
Posted: Tuesday, December 12, 2017 11:58 AM
Joined: 11/4/2017
Posts: 122


Awww, that was so sweet of you. I'll have to try to remember to use a note in the future. I took your suggestion and called the alz assn. They guided me to some videos. I just told hubby about them
Horse Lover
Posted: Tuesday, December 12, 2017 12:01 PM
Joined: 11/4/2017
Posts: 122


JJfkoc. I just worry about what people think about me. I know that I have problems saying things so the other person understands it the way I mean it
jfkoc
Posted: Tuesday, December 12, 2017 7:21 PM
Joined: 12/4/2011
Posts: 15613


Well, I got thoroughly raked over the coals last week. It did not matter what I said it was misunderstood. Thankfully the original poster has deleted them.

It was uncomfortable to be so misunderstood.

I guess it is alway a risk but if we are going to help each other we must take it, yes?


Iris L.
Posted: Tuesday, December 12, 2017 9:49 PM
Joined: 12/15/2011
Posts: 15449


In my early years on this board I went through a deep depression.  After the deep depression, I continued with bouts of depression and anxiety.  The majority of my early posts were about my being depressed and anxiety-stricken.  I had to steel myself against panic.  The members here and the Care Consultants kept throwing me virtual life rings that held my head above the waters.  I wouldn't have made it this far without the members and the Care Consultants!  Thank you for rescuing me from the pits of despair, members and Care Consultants!


Iris L.


jfkoc
Posted: Wednesday, December 13, 2017 1:07 PM
Joined: 12/4/2011
Posts: 15613


I feel the same way Iris. Everyone...well almost everyone...has held my hand at one time or another...that goes for all of the boards.
Horse Lover
Posted: Wednesday, December 13, 2017 7:22 PM
Joined: 11/4/2017
Posts: 122


Thank you all for your help and advice.
alz+
Posted: Thursday, December 14, 2017 7:53 AM
Joined: 9/12/2013
Posts: 3233


HorseLover - 

so many of us have been where you were when you wrote this post.

how beautiful it is to see JFKOC and Iris offer their support and internet hand holding. They have done that for so many people and are very skilled at rescuing others from the brink.

I am very curious about what you have come to believe your future will be based on having seen relatives with Alzheimer's progress and die.

I helped take care of my dad when he had it (I now believe I had the beginnings while I was helping him). He died earlier than expected because he broke his hip and the repair became infected. If I had not been willing and able to spend the last 10 nights with him - ? Maybe he would have passed peacefully but I think having my presence and attention made his dying very peaceful for both of us.

I was bonkers depressed after the diagnosis for the usual reasons andhelped by the psychiatrist who had told me my problems were bi-polar for 5 years before we found out it was Alzheimer's. He dropped me, funds were cut anyway, but he did get me on Zoloft which did make a huge difference.

 I finally came to believe this is not what the medical world thinks it is. Their version of plaques and tangles, empty vessels, memory loss as focal feature and autopsy as a way to prove dementia does not work for me. People can not be depleted of all essence and memories and then suddenly get it all back - which  happens a lot near end of life.

Living with the illness is all mucked up by the Common Beliefs. There was a blog called 

https://skunkpharmresearch.com/alzheimers-mom-and-cannabis/

the writers describes rescuing her Mom who is living down to the predictions of horrible disease, despair, useless and how she gives her a place to live where she is what I call "free range living". I said I pick this way of life.

What I did not know was that it may not be possible for me to create that level of living comfort without someone like the author to create and direct it. But still I have that as my goal.

There is too much I want to say to you. Right now let your horses help you. The story of how they escaped and the neighbors loved helping you get them back home and safe sounds like divine intervention.

Being out in nature is a top medicine, being with animals is medicinal. 

Keep sharing - everyone of us who goes into the pit and finds a way out and shares how we did it helps a million more people. Maybe not immediately but we are building a new true version of what it is like to have the illness minus trying to fulfill the horrific idea of what it is like inside the body held by those without the illness.

love and courage


Iris L.
Posted: Thursday, December 14, 2017 11:27 AM
Joined: 12/15/2011
Posts: 15449


Thank you for your great insight, Alz+.  Free range living--I like that!  In fact, I love it!  That's what we need.

One of our emeritus members came to mind this morning, TTom.  He always posted the Serenity Prayer.  God, grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.  I'm working on having the courage to overcome the fear of changing what I can change right now.  I have the goal of living a life of comfort, as you have.  Please keep posting.  What you say about nature and animals is spot on.


Iris L.


jfkoc
Posted: Thursday, December 14, 2017 12:45 PM
Joined: 12/4/2011
Posts: 15613


nice to know that I passed through something helpful...I  have been helped by so many here...looking back just a couple of years shows how much has been learned
Horse Lover
Posted: Thursday, December 14, 2017 11:43 PM
Joined: 11/4/2017
Posts: 122


alz+, I want to let you know what I am not ignoring your question as to what I expect my future will be.  I just need a little time to put it into words.  I've seen a LOT.  It's painful to watch... more painful to talk about.  There is so much to say and it's late.  I'm tired.  This is a question that I'll have to answer at a later time.  Thinking about it.  Talking about it.  It is all exhausting and very depressing.  I will try to get back with you, probably Sunday, when I am rested and have the energy to try to answer your question. 

 


 
× Close Menu