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He knows.
Sim
Posted: Saturday, April 14, 2018 8:00 PM
Joined: 7/16/2017
Posts: 36


DH came to me today. He looked bad. He was shaking and a little disoriented. He was asking whats wrong with me? Am I going through a withdrawal or something? It was so sad. I don't know why I reacted as I did. But I finally just bust out crying. I told him no. That he's just having an 'episode' (he'd had a few like that already) and if he lies down for a nap it helps.

But I cried and said, its the Dementia. Its doing that. It makes you feel like that sometimes.

He crossed the room and came to me and bent down, putting his hands on either side of my face. He then put his forehead against mine. He didn't look at me but said with great emotion in his voice, "It's ok, it's ok. Don't cry. I've got a little time left. Gods got something else for me to do before its too late."

My breath just froze and I was trying to decide how to respond. I pulled my face away and looked at him and asked, "you know?" and he said, "yes." I asked, how and he said he looked on the internet. He said, I found out it runs its course between 8-9 yrs (I never at any time told him that Early onset has a diff time-line). You read that, I asked and he said yes. How do you feel about that? He said, it's ok. Just don't cry because I love you and God has something else for me to do before I go.

I don't know how to act around him any more. To find this out today. I have to add that all week he has been pressing how important it is that he has a birthday party/retirement party in June (he thinks he retired and thats why he isn't working).

What do you think? Is he trying to tell me something? Am I reading too much or more than I should into it? 

Have anyone else come to you and let you know that they know they will die from this?

I'm sad.


jfkoc
Posted: Saturday, April 14, 2018 8:52 PM
Joined: 12/4/2011
Posts: 15759


It is heartbreaking.

Hold each other tight and cram in as much living as you can!


Sim
Posted: Saturday, April 14, 2018 9:30 PM
Joined: 7/16/2017
Posts: 36


jfkoc wrote:

It is heartbreaking.

Hold each other tight and cram in as much living as you can!

thank you jfkoc. btw, i read ur bio. i think u r amazing and ur husband is blessed to have you.
Sim

Mike&BrendaTX
Posted: Sunday, April 15, 2018 1:04 AM
Joined: 7/10/2017
Posts: 365


Sim,

I would have the party as soon as you can arrange it.  This disease can change things in terms of the patient's recognition very quickly.  I took my wife on a 21st anniversary trip several months early, because I was concerned that she wouldn't understand if I waited a few more months. In retrospect, that was probably correct. 

My wife also knew what was going on in earlier stages.  At one point, she sat on the couch and said, "I have the same thing my mother had, but she couldn't even get out of bed." (True).  At one point she asked me to go to the grocery store to get something, then couldn't remember what it was.  I jokingly said that I'm going to have trouble if I don't know what I'm there for.  She put both hands on her head and said, "My head is so messed up.  I feel sorry for you."  Ironic she would feel sorry for me, but she has never said "poor me" or "why me?" in the past 11 years of this disease.  She's always been that way.  I call her my perfect wife.

Cherish the times you have like the other day.  It won't always be like that. 

Mike


Kenny Ray
Posted: Sunday, April 15, 2018 1:49 AM
Joined: 11/5/2017
Posts: 126


  

Sim wrote:

DH came to me today. He looked bad. He was shaking and a little disoriented. He was asking whats wrong with me? Am I going through a withdrawal or something? It was so sad. I don't know why I reacted as I did. But I finally just bust out crying. I told him no. That he's just having an 'episode' (he'd had a few like that already) and if he lies down for a nap it helps.

But I cried and said, its the Dementia. Its doing that. It makes you feel like that sometimes.

He crossed the room and came to me and bent down, putting his hands on either side of my face. He then put his forehead against mine. He didn't look at me but said with great emotion in his voice, "It's ok, it's ok. Don't cry. I've got a little time left. Gods got something else for me to do before its too late."

My breath just froze and I was trying to decide how to respond. I pulled my face away and looked at him and asked, "you know?" and he said, "yes." I asked, how and he said he looked on the internet. He said, I found out it runs its course between 8-9 yrs (I never at any time told him that Early onset has a diff time-line). You read that, I asked and he said yes. How do you feel about that? He said, it's ok. Just don't cry because I love you and God has something else for me to do before I go.

I don't know how to act around him any more. To find this out today. I have to add that all week he has been pressing how important it is that he has a birthday party/retirement party in June (he thinks he retired and thats why he isn't working).

What do you think? Is he trying to tell me something? Am I reading too much or more than I should into it? 

Have anyone else come to you and let you know that they know they will die from this?

I'm sad.

Sim,

My DW has been fully aware from the time she was diagnosed over 4 years ago. I still remember the day we were in the neurologist office and he told us the results of the tests. DW was in chemotherapy for her cancer when we got the diagnosis and a couple of months before we were getting married. In a single moment you face the realization that the life you dreamed about together is gone. I’ve been caring for DW longer than we’ve been married, and we’ve made a different life together than we thought it would be. Our lives together are still full of love and laughter and we are making memories knowing that our time is limited. 

I know what you are going through. I’m going through it too and it breaks my heart. My DW knows she’s going to die from EOAD at a young age. Her children are in their early 20s. She may never meet her future grandchildren and her parents may survive their daughter. DW is well into stage 6 now and asks me how much time she has left. I tell her that only God knows, but I do tell her what the statistics are and that EOAD could progress faster, which it appears is happening. She knows what to expect as it progresses. My stepfather is in stage 7 on hospice now and his symptoms surfaced a couple of years before DWs.  

We are believers and she is not afraid, but occasionally gets sad. We can talk about our faith, and her wishes, her feelings, her care, and what we may need to do for her care. I’m thankful that even though short term memory is really bad, and her communicating words is hard, she is still “here” and we are facing the reality of this together. DW still enjoys our life together, she smiles, laughs, enjoys socializing, loves day club. It’s me that gets sad more than DW. But we don’t let sadness overtake our lives. We still live our lives and cherish each moment we have together. Writing our love story until the end. 

Often God works through people. There may be something that God intends for your husband to accomplish, influence, change, or bless in someone’s life still. 

I think your DH is telling you that he loves you and cares about you dearly. Maybe the fact that he knows and told you he knows gives you the opportunity to talk more about his thoughts and feelings as well as yours. 

Have a party in June! Technically he is retired, right?

Blessings,

Ken

 


Crushed
Posted: Sunday, April 15, 2018 4:12 AM
Joined: 2/2/2014
Posts: 3857


DW is a physician.  In 2012 her new neurologist wrote Alzheimer's on the diagnosis.  I had never had any doubt but she had retained  some hope that her MCI might be something else.  She was 59.  She told me Alzheimer's was a pathological autopsy diagnosis and she wasn't dead yet. When we got home I asked her what she wanted to do. I would so anything she wanted. take me to see animals she said I want to see them alive.  So I did.  Kruger park in South Africa for a month for 5 years.  Scuba diving in Hawaii and Bonaire, Bears in Alaska, Yellowstone  and Canada.  Monkeys and birds  in Costa Rica. Winters in Florida.  Visited friends from Berlin to California .    We had five incredible years. but everything finally  goes downhill  2017 was rough and 2018 is rougher.   Yesterday she broke into unexplained and unstoppable tears.   I told her I loved her and she said "I know" ,  It was her first complete sentence of the day.

It's 5 am and I cant stop crying

 


elainechem
Posted: Sunday, April 15, 2018 7:02 AM
Joined: 7/30/2013
Posts: 5697


My hubby has anosognosia. He has never been aware of what is happening to him. In a way, I think it's better for him, but it has made it much harder on me. The early days were especially rough because he kept fighting me when I was making the hard choices all alone. 

As for the timeline, no one knows, of course. But I believe that more current research indicates that early onset AD progresses at the same rate as older onset - 8 to 10 years from the time of diagnosis, or from the onset of symptoms. I'm still not clear on that because various sites say different things. I know that God still has a plan for my hubby and a mission for him to fulfill while still on this earth. God is good!


jmsjr
Posted: Sunday, April 15, 2018 8:43 AM
Joined: 8/29/2017
Posts: 37


My wife has known for about eighteen months now (diagnosed at 67) and is aware of how it ends because her mother had EO and died in her sixties.  Her mother was at our wedding but really wasn't aware of anything.  She died a few years later.

Every once in a while DW says I'm so glad they have pills now because my mother didn't have them then and they help me a lot.

She knows that she is slipping away slowly but surely but has been a real trooper about it for the most part.  

As for me, I just try to keep a routine going to minimize stress for her.

One other thing I learned from a friend whose wife has had AD longer than mine is to try and make her laugh.  So I try.


Ed1937
Posted: Sunday, April 15, 2018 9:20 AM
Joined: 4/2/2018
Posts: 537


Sim, it sounds like you have a loving marriage. It's a very tough time to go through, and I'm sorry you are going through it.
Last Dance
Posted: Sunday, April 15, 2018 10:31 AM
Joined: 5/2/2013
Posts: 226


Linda never knew that she had dementia. When I first tried to get her a diagnoses she of course said there is nothing wrong with me you just want to put me in a nursing home. I told her no I don’t I just want to get you help. After the 2nd visit to the neurologist she never complained any more. She never knew that she was forgetting things. There were a few times toward the end she would come to me and say what’s wrong with me and why can’t I get better. All I could do was to hug her and tell that I would take care of her and with God’s help we would get through it. I think it was a blessing that she never knew what she had, and that some day she would die from it. I kept her safe and took care of her for nine years, she was the love of my life, and every day I still miss her.

 


Sayra
Posted: Sunday, April 15, 2018 10:45 AM
Joined: 8/10/2016
Posts: 1033


(((((((To each and everyone of you)))))))).   Yes when they don't know it's harder on us.  Maybe that's a blessing for them or maybe it's not.  I am not sure.
Kenny Ray
Posted: Sunday, April 15, 2018 7:53 PM
Joined: 11/5/2017
Posts: 126


  

Crushed wrote:

DW is a physician.  In 2012 her new neurologist wrote Alzheimer's on the diagnosis.  I had never had any doubt but she had retained  some hope that her MCI might be something else.  She was 59.  She told me Alzheimer's was a pathological autopsy diagnosis and she wasn't dead yet. When we got home I asked her what she wanted to do. I would so anything she wanted. take me to see animals she said I want to see them alive.  So I did.  Kruger park in South Africa for a month for 5 years.  Scuba diving in Hawaii and Bonaire, Bears in Alaska, Yellowstone  and Canada.  Monkeys and birds  in Costa Rica. Winters in Florida.  Visited friends from Berlin to California .    We had five incredible years. but everything finally  goes downhill  2017 was rough and 2018 is rougher.   Yesterday she broke into unexplained and unstoppable tears.   I told her I loved her and she said "I know" ,  It was her first complete sentence of the day. 

It's 5 am and I cant stop crying 

 

Crushed, 

Its devastating to see your wife and best friend suffering and being unable to take away her pain and sorrow. She knows you love her and she knows you are there with her as you have always been. The memories of those wonderful 5 years and the memories of the life you created together will always be with you. 

Ken


Sim
Posted: Monday, April 16, 2018 2:47 PM
Joined: 7/16/2017
Posts: 36


thank you for all of the responses and support.

i think we are going to have a party for him. its what he wants. its not much to ask for. ty for the ideas.

sim


Carolyn613
Posted: Monday, April 16, 2018 2:58 PM
Joined: 7/15/2016
Posts: 915


" it runs its course between 8-9 yrs"


How I do wish. My DH was 64 when he was diagnosed in stage 3 to 4. 20 months later he was dead, solidly stage 6. It's as if he were on a water slide at an amusement park.

 

Lorita
Posted: Monday, April 16, 2018 6:58 PM
Joined: 12/18/2011
Posts: 9585


Hi,

 Same with us.  Charles and I were together when we got the first diagnosis - never talked about it and again when we got the diagnosis of Vascular Dementia - again,  never talked about it.  I didn't see the need to bring it up - I felt it would only make him feel bad and I didn't want that.  He never mentioned it and neither did I.   I remember Mike and I were talking about it and he said it was harder on me than Charles because he didn't know or realize that anything was wrong.  That was just the way it was and I wouldn't change it one bit if I could. 


Nonnie43
Posted: Thursday, April 19, 2018 7:00 PM
Joined: 6/15/2014
Posts: 6


DH is receiving in-Home hospice care now and I still don’t know if he is aware that he isn’t going to get better. Today they told me that the outer time limit is two weeks. He hasn’t eaten in a week and before that only a bite, sometimes. He is skin and bones and so very weak. What a horrible way for his life to end.
littleme
Posted: Friday, April 20, 2018 12:53 AM
Joined: 5/4/2013
Posts: 1178


Nonnie

That is so sad. Sending soft hugs and lots of supportive thoughts.

Blessings, Barbara


Porch Rocker
Posted: Friday, April 20, 2018 8:46 AM
Joined: 10/16/2017
Posts: 47


My husband's doctor talked openly using the word dementia.  And when it seemed appropriate I would also speak of his dementia as the reason some things were happening.  I'm not sure he really understood.  Once he went into MC I found little scraps of paper where he had written the word dementia.  They were stashed all over the house -- in his wallet, golf bag, coat pockets, work bench and everywhere.  It made me sad that he was trying to understand and remember that's what he had.
Best30Years
Posted: Friday, April 20, 2018 6:56 PM
Joined: 3/6/2018
Posts: 4


Nonnie43 

I’m so sorry to hear about your DH. Sending you love and prayers in your time of need. 


Nonnie43
Posted: Saturday, April 21, 2018 10:47 AM
Joined: 6/15/2014
Posts: 6


This morning he asked me “Am I dying?”  Because he is completely deaf now it’s difficult to have the conversations I would like to have. I didn’t want to write him a note saying ‘yes’. I shrugged and said ‘I don’t know’. Not enough info I know. I will compose a short note for him to read the  next time this comes up.  I tell him I love him many times a day but I wish I could ‘tell’ him in words how I feel and talk about what is happening. I have found his loss of hearing to be one of the most difficult aspects of this whole thing.

Thank you all for your support. 


Sim
Posted: Thursday, May 10, 2018 9:44 PM
Joined: 7/16/2017
Posts: 36


Nonnie43 wrote:
DH is receiving in-Home hospice care now and I still don’t know if he is aware that he isn’t going to get better. Today they told me that the outer time limit is two weeks. He hasn’t eaten in a week and before that only a bite, sometimes. He is skin and bones and so very weak. What a horrible way for his life to end.

what does this part mean?

Today they told me that the outer time limit is two weeks. 

Sim


dayn2nite2
Posted: Thursday, May 10, 2018 10:37 PM
Joined: 6/20/2016
Posts: 1631


Sim wrote:
Nonnie43 wrote:
DH is receiving in-Home hospice care now and I still don’t know if he is aware that he isn’t going to get better. Today they told me that the outer time limit is two weeks. He hasn’t eaten in a week and before that only a bite, sometimes. He is skin and bones and so very weak. What a horrible way for his life to end.

what does this part mean?

Today they told me that the outer time limit is two weeks. 

Sim

It means they were estimating he might live another 2 weeks at most.

Sim
Posted: Tuesday, May 15, 2018 2:05 PM
Joined: 7/16/2017
Posts: 36


oh. oh my- i'm sorry.
SugarSmacks
Posted: Tuesday, May 15, 2018 9:10 PM
Joined: 5/16/2016
Posts: 41


These posts are hard and sad to read.  My DH keeps saying things will get better when I get well.  We had the talk months ago about him not getting well.  He said so I am glad you have my back.  Yes I will always have his back.  It helps me to know with reading in this message board that there are other caregivers out there that have problems just like me.  Thank you everyone.  Hugs to you all.
 
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