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Probable Alzheimer's
Alan G-L
Posted: Monday, July 16, 2018 8:31 AM
Joined: 7/16/2018
Posts: 7


Hi, I'm Alan,

I'm new here because my husband of 10 years has been diagnosed with "Probable Alzheimer's Disease."  I'm scared as hell.  My husband, David, is 70 years old and been showing signs for about two years now.  He has gone through a few tests to receive this diagnosis and is in the process of a DNA test to see it he has familial Alzheimer's since his mother had it, he thinks his aunt (mother's sister) had it and now his 90-year-old sister has it.  We are having this test done because he has two grown daughters and two Grandsons.  We feel it is important to know, especially for them.  At this point my issues deal more with my own history of having a mother that was mentally not balanced.  Both my husband and I are Bipolar.  I believe my mother was, but not medicated and therefore I went through hell with her as a child.  A few years ago, a dear 97-year-old woman friend passed away who developed some sort of dementia in the past couple of years of her life.  I did not deal well with it.  Now I have another woman friend of 85 years of age doing through much the same.  I’m her POA and am trying to help but am finding this to be difficult at times, too.  Frankly, as bad as this may sound, I am far more concerned about my husband than her and feel that it needs to be my number one priority to be there fully for him.  I’ve started therapy to handle some of my issues surrounding mental instability and how it pushes my buttons.  I see myself having most problems with the behavioral changes that I see happening.  I get frustrated real fast and impatient.  I think I’m expecting the same old person David was and not what he is becoming.  I guess my biggest fear is losing him in his memory; meaning that I fear him forgetting who I am some day in the future.  I also am afraid of not being able to handle this.  Three years ago, I had stage 4 cancer and David was my hero.  He was the best caregiver I could have asked for.  I want to be that for him.  I just don’t know how handle myself.  I need help to help him.  I’ll end for now.  I’d appreciate any input I can get.

Alan

 

 


Jo C.
Posted: Tuesday, July 17, 2018 11:02 AM
Joined: 12/9/2011
Posts: 10195


Hello Alan, I am so sorry for what is happening, but also want to welcome you to this very supportive Message Board.

It is important to know that not all journeys with Alzheimer's are the same.   Many people are attracted to this Board because they are having significant problem issues, but not all people with dementia have similar issues as you may see described here.  Each case is very different from the next and having a very good support team is key to success.  Having a dementia specialist in addition to one's primary care MD is essential.  Friends and family if available can also add to the support group dynamics.

Right now, it must be very difficult not to project worst case scenario regarding the future; that is something that seems to come with such a diagnosis.  There is also a component of grief with a diagnosis such as this.

However; there are years of  sharing to be had, so it is important not to pitch one's tent and camp out in the gloom; you are still you and he is still who he is; that has not changed.

Since you mention having other challenges, it is also very important for you to take good care of yourself and your own conditions as they exist.  This will hold you in good stead.  It is important to not let go of that.

Your husband sounds like a wonderfully supportive person as seen by his dedication while you experienced Stage 4 cancer.   You are now giving back by supporting him.  There seems to be much mutual love and respect in your relationship.

I also want to give you the number of the Alzheimer's Assn. Helpline at (800) 272-3900.  If you call, please 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 dynamics.  They are very supportive, have much helpful information and can also assist us in our problem solving.

NOTE:   We can Post on any of the Forums we wish; but if you want to get much more input from other Members, it is best to Post on either or both the, "Caregiver's Forum," and/or the "Spouse/Partner Forum"  Those are the places with the largest number of Members and the most input.  Experiential wisdom and support is worth a lot.  

It is also important to let you know that we have had multiple LGBT Members who have Posted on the other Forums and they have always been welcomed with open arms; so no concerns there.

You are very wise to begin to look for information and support early one; this will be very helpful.  I wish you the very best as you move forward and send warm thoughts your way,

J.


Alan G-L
Posted: Monday, July 23, 2018 3:20 AM
Joined: 7/16/2018
Posts: 7


Thank you J,

I appreciate your input and the phone number as I am sure it will come in handy.  I recognize that I'm operating out of fear.  And sometimes that fear evokes anger in me over the fact that this is happening to the man of my dreams.  I don't want to see him turn into a nightmare in the years to come.  Today he tripped and fell on his face.  He broke his nose.  When I saw him laying flat on his face outside, it scared the hell out of me.  And we had just been talking earlier in the day about hating when the other is hurting, either physically or emotionally.  Both of us want to fix the other so that life is good for the other.  Luckily, he did not have a concussion.  I took him to the ER and they did a CT scan, cleaned him up, put antibiotic ointment on him and sent him home.  He's in a bit of pain but will be fine once his nose heals.

I have started therapy a couple of weeks ago and go every other week.  I see what my shortcomings are and wish to get a handle on them so that I can be the best caregiver ever.  He deserves the best because he is such a wonderful man.  It took years to find him and now I want to hold onto him.  I dread the thought of losing him to this disease.

I'll close for now and say thank you once again.  I will post on the other boards so that I can get more input.  This is a wonderful service that ALZ.org provides.

Alan


Jo C.
Posted: Monday, July 23, 2018 9:57 AM
Joined: 12/9/2011
Posts: 10195


Oh gosh, Alan; I am so sorry to hear about the injury from a fall.    You must have been really stressed.   So glad that there were no serious injuries but still, it must be painful and awfully uncomfortable.

Please do not be hard on yourself; you are a loving, kind and dedicated advocate for your husband and that will take you far throughout this journey.

It is good to remember; there is no perfection in all of this, only the best one can do under the circumstances with the challenges at hand.  You are going to do fine in how you care for your husband.   We all make blunders or take awhile to get up to speed, but that is part of the process.

Step by step.  Try not to catastrophize into the future for things that may not happen.  Yes; plan for a "what if," but live each day to the best for what is at hand.   You will find that you will settle into this as time moves forward.

Not only do our Loved Ones have to adapt to changes, we caregivers also have our own adaptation periods.    Support groups can be helpful and friendships even form.  If the support group is an active one and has been in place for awhile, many in the group can share helpful information about various community based assistance organizations.  Knowledge is power; so getting all the knowledge one can makes a difference.

Sometimes one group may not feel like a good fit; if that happens, it is good to find another.

You are already a marvelous caring caregiver, it is about your loving spirit and willingness; your husband is fortunate to have you in his corner.

J.

 


KML
Posted: Tuesday, August 7, 2018 12:09 PM
Joined: 11/30/2011
Posts: 2105


I found myself being impatient with my dad, too, until I adapted to the disease.  I thought if I did everything perfectly, if I cooked the right foods, he would be okay.  Our loved ones do change along with the disease, but it isn't always a total change from who they always were.  It takes time to adjust.

The thing is you love him, he loves you, you will both do the best you can.  It will not be perfect, nothing ever is and life moves us along whether we want it to or not.  I found there were things I could not control, I could not keep things the same.  All I could do is make the day as good as possible, and when it wasn't good, the thought of tomorrow is another day and it will be okay, I will deal with tomorrow when it comes.

Allow yourself to breathe and adjust.  I always found it helpful to have a plan, plan b, c....

I tried to learn as much as I could about the disease, so I would know what to expect.  I learned so much from the people here on these boards.  They were a lifeline to me.  Jo C is one of the most giving and knowledgeable  members on these forums, as well as many others here.

I hope you will come here often, it really is a wealth of experience, knowledge and a great resource.  If there is an issue that comes, most likely someone else has experienced it too and found ways around it, founds way to work with it, very helpful information.

Take care of yourself and build on your resources for help, no one does this alone.

 



Alan G-L
Posted: Wednesday, August 22, 2018 8:28 AM
Joined: 7/16/2018
Posts: 7


Thank you so very much.  I guess I am rather hard on myself.  I want to be the best caregiver I can, especially since he was so excellent as my caregiver back when I had stage 4 cancer and almost died.  I love and adore him and watching these changes is very difficult.  He isn't the same man that I fell in-love with nearly 15 years ago.  And now I know that the changes will continue to happen.  I see that I have to keep changing to keep up with him.  I'm not the greatest with change.  I'm much better than I was when I was in my 20's but I still need to be better at this.  I've started therapy to deal with this.  My therapist tells me that I'm rushing the stages.  I've gone from denial to anger about this happening to him and to us.  I tell my therapist that I've really gone from denial to panic!   She says that's not one of the five stages but she gets it.  I often feel overwhelmed.  Part of this feeling is that I'm having to do more and more of the responsibilities around here.  I often worry if I can actually do it all...and it's only going to get worse.  Then I realize that I did it today, so I should be able to do it tomorrow,  And just maybe adding one more thing at a time won't be impossible.  I guess I'm resisting this.  I assure you, and myself, that I'm trying the hardest I can.  I just need to learn how to calm down.  Once again, thank you for your input.

Alan


Alan G-L
Posted: Sunday, September 9, 2018 8:52 AM
Joined: 7/16/2018
Posts: 7


Well, step one has been completed.  The DNA test to find out whether David has familial Alzheimer's disease came back negative!  That was a big surprise to David and I.  The reason being is that his oldest sister, Marge, who is 20 years older than him has late stage Alzheimer's.  His mother also had it and he believes her sister may have had it too.  His dad died from a heart attack at age 60, so no information about that side of the family.  We are glad to hear this, but now... This coming Wednesday he is having another test, a spinal tap, to see if he has Sporadic Alzheimer's.  We don't know if this is covered by Medicare but I guess we will find out on Wednesday.  The DNA test was not covered.  But, of everything this is the least of our concerns, really.  Lately, I've had some physical problems of my own, which in a strange way has helped me to not focus so intensely on him.  It had increased my stress level however.  I admit, I don't do stress very well.  I feel very inadequate when it comes to this whole issue.  I wonder if that feeling is shared by many.  And if so, how do you handle it.  It's so hard when he cries because he gets confused.  I hold him and I think it helps him, but my heart tears a little further.  Yesterday he found out that I had talked to a good friend of ours, Karin, about this.  He started crying again.  I told him that I was confused as to why he was crying since she only wants to support him.  The best that I could get out of him is that he thought "maybe" the reason is that it makes this all more real to him.  I feel like I screwed up.  Yikes!  Gee, if I could just put all of my feelings on a shelf and leave them alone, maybe I'd be better at all of this.  Any input?
Alan G-L
Posted: Thursday, June 27, 2019 7:39 AM
Joined: 7/16/2018
Posts: 7


GOOD NEWS!

After over a year and a half of extensive testing, we learned that my husband DOES NOT have Alzheimer's or dementia.  It turns out that he has ADHD which is why he can't remember "all of the facts" of any subject.  Since he is so distracted he doesn't pay attention completely to what is being told to him.  Therefore, he can only remember bits and pieces of that information.  I have found that if I ask him to pay attention to what I am telling him and then ask him to repeat what I said he can then remember what I told him.  Often he repeats what I said incorrectly and then I keep repeating the details and asking him to tell me what I said.  We do this until he completely understands and THEN he can remember.  He is starting medicine for ADHD, so in time we will be able to tell how that is working.

Thank you God for this.  Now, I've just been diagnosed with macular degeneration in both eyes with some central vision loss in my right eye.  If it's not one thing, it's another.  But God will see us thru this (no pun intended).

Alan


Jo C.
Posted: Friday, June 28, 2019 12:26 PM
Joined: 12/9/2011
Posts: 10195


Hello Alan; thank you very much for letting us know the good news!  What  a relief that must have been.

May blessings continue to find you and your dear husband.

J.


Alan G-L
Posted: Friday, June 28, 2019 1:11 PM
Joined: 7/16/2018
Posts: 7


Hi Jo,

My pleasure.  I am definitely relieved.  And, of course, so is he.  It's been a nervous year and a half of testing.  But it was worth the wait and cost.  I just encourage that if you are wondering, do get the tests of DNA, Protein test and Neurological brain testing.  As I said, it is worth it.

God Bless everyone,

Alan


Jo C.
Posted: Saturday, June 29, 2019 7:55 AM
Joined: 12/9/2011
Posts: 10195


Thank you, Mr. Alan,

J.


zauberflote
Posted: Saturday, July 13, 2019 10:02 PM
Joined: 10/24/2018
Posts: 499


Alan, what a grueling time of it you are having. I'm overjoyed no dementia, sorry for for MD-- I hope you can get good treatment for that! And ADHD at 70-- I would love to be a fly on the wall in your home, to find out how my sons are going to be long after I'm gone. 

I will speculate that his ADHD is one of the things that made you fall in live with him in the first place. My sons' friends were the most fun kids in the class, year after year. There is a certain spark that the  Neuro-typical kids just didn't have. Our home life was never calm. Never quiet. And DEFINITELY never boring. I wish you true joy and a long and.... interesting life together. 


marcgcam33
Posted: Monday, July 22, 2019 10:35 PM
Joined: 7/22/2019
Posts: 1


Sorry to read about your misfortunes but see this as a good teaching moment. 

He was your HERO a while back now its your turn  to be his. You both seemed like have live a great life and when things get bad, that is what you will turn to. 

Good luck with it all and just ask for inner strength . 

 


Iris L.
Posted: Tuesday, July 23, 2019 10:40 PM
Joined: 12/15/2011
Posts: 16180


Alan G-L wrote:

GOOD NEWS!

After over a year and a half of extensive testing, we learned that my husband DOES NOT have Alzheimer's or dementia.  It turns out that he has ADHD which is why he can't remember "all of the facts" of any subject.  

 

When I first started working with my neurologist I thought I might have adult ADD.  But everything I read said symptoms begin in childhood.  I was not distractable as a child, nor hyperactive.  I did well in school scholastically and socially.  I did not have cognitive problems until my mid 30's.  Has he had an overnight sleep study in a hospital sleep lab to search for sleep apnea? I had two trials of Provigil, also a trial of dexedrine (amphetamines).  No response.  The cholinesterase-inhibitor is working for me, even though I do not have AD.  

 

I have an NOS diagnosis, not otherwise specified.  There is life after a diagnosis.  I hope he does not have dementia.  Time will tell.  Do not let fear rule your life.  Follow Best Practices, our lifestyle habits that help us.  They work.  Avoid stress.  Alan in Colorado, one of our emeritus members, who was himself a psychologist, warned us that stress and anxiety reduce our cognition by HALF! This was a wake-up call to me.  Find and use a stress relief technique.  Keep stress out of your lives! 

 

 

Iris L.