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4 years in and wearing thin
frs51
Posted: Thursday, September 15, 2016 10:29 PM
Joined: 12/14/2014
Posts: 14


This is my first post. I have visited off and on but I feel uneasy about sharing personal information about DH.  However I desperately need support. Things are changing so fast. My husband will be 64 this month. He had knee replacement surgery in June, his choice. His recovery has been rough. He has recently become incontinent and refuses to use the toilet. When he wakes up wet in the mornings he gets angry. The anger is the hardest part for me. It was bad enough before surgery but now that he needs so much more help it is worse. The ugly things he says are so hurtful. Sometimes I leave the room to avoid losing my temper, and sometimes I blow up.  I have told him how much it hurts me and he says he is sorry.  Those who deal with this, how do you keep caring and loving and forgiving? I know it's the disease but it is still getting the best of me. I have learned a lot from reading here and thank you all for being willing to share. 

Becky


Dahlke
Posted: Thursday, September 15, 2016 11:22 PM
Joined: 7/6/2014
Posts: 1350


Dear Becky,

What you are experiencing is a very natural and normal caregiver reaction.  All I can say that the best thing that you can do is to read, read and read some more about this disease; become informed and knowledgeable. Find a local caregiver group to attend so that you will not feel alone or isolated.  Or share regularly on this forum.   It has very little to do with YOU in regards with  the mean and ugly things that he is saying.  Their brains are not working or functioning in a normal manner.  He may not even remember what he is SORRY for.

I cannot tell you HOW ANGRY I WAS WITH MY SPOUSE OF 40+ YEARS once I finally realized and acknowledged what was going on.  I was so pissed (excuse the language please)- I worked with Srs. in a Hospital setting, and had been trying for years to get him to be more mentally active.  He simply refused to believe that I knew ANYTHING about ANYTHING.

It took me a couple of years, and with the progression of the disease I was able to come to grips with what was happening.  First and foremost I decided that I would treat him like a PERSON WITH A  MIND DEBILITATING DISEASE and not as the husband who I had been living with (49 years now) --a different---- and sometime very difficult---- person  who was currently living in the same house.   After all, HE WAS AND IS  NOT THE SAME MAN.  That somewhat small (or huge) deception told to me--by me-- made all the difference in my world  of being able to cope. (I also told myself, "treat him like you would like to taken care of if this happened to you!) ;some days I failed  but most days I made it work. 

  I hope you will find something that will help you to balance out what is happening to you.  This is an extraodinarily HARD journey and job that we are faced with.

Good Luck

Cynthia (Dahlke) 


Cheyenne57
Posted: Thursday, September 15, 2016 11:24 PM
Joined: 8/28/2016
Posts: 22


Well Becky, I am 14 years in.  First saw noticeable changes in my DH in 2002. Diagnosed MCI and poorly controlled Bipolar in 2007. DH now diagnosed with Alzheimer's as of 9 months ago. So I GET IT! I am beyond exhausted.

I wish I could give you a good answer how to continue to care, love and forgive. Some days I can't do any of that. I go through periods of denial, depression and despair. Then I am able to come up for a quick breathe of air so that I can continue on....to care, love and forgive. It is  a continual cycle for me. I cope, then I can't cope....

I thought I had gone through the grief process of "losing" my relationship and husband only to have the grief over take me again. I am Angry but not really at my DH.  I am Angry at the disease and what it has taken from my DH and me.

 While I do get very frustrated with my DH it usually just quickly shifts to extreme sadness. Sadness for what my DH has to endure, sadness for the loss of my relationship, sadness for the loss of my own "life".  I worry.  I worry how I will possibly cope with what is to come as I watch my DH decline. I worry about my own health and welfare. I worry there will not be very much left of "me" left after Alzheimer's takes my DH.

FYI this is only my 2nd reply and I have not yet started a post. So I am new here too..

 

 

 


Bjblyghtnin
Posted: Friday, September 16, 2016 12:51 AM
Joined: 7/9/2013
Posts: 3205


Welcome to both of you and do join in, it helps to write out and talk to our cyber friends.  My Bill has past, he had the anger, bad, and all the problems you are facing.  He had MCI, then dx with Vas'D, and couple years later AD.  Call your dh's Dr. and ask for something for his anger, it can quickly get out of hand.  It not only helps with the anger but seems to calm them, less agitation.  Yes, I too would lose my cool wth him.  He told me one time in a clear moment he didn't mean to get bad at me, but he just couldn't stop himself.  Also , he would say he could hear me, but could not understand what I was saying.  They are dealing with so much, it is truly sad.

Bonnie 


Mike&Brenda
Posted: Friday, September 16, 2016 4:52 AM
Joined: 5/9/2016
Posts: 355


Becky,

We are now 9+ years in, and it's been a beating.  My wife and I have been married 22 years and never had an argument until this ugly disease hit.  Now every morning is the same thing: wet bed, wet clothes on DW, and she's a grouch, telling me to get out and she doesn't want her clothes changed.

It used to really get to me, and sometimes still does, but after a while I just told myself that this is a job, not a life.  I've been through years of grief, sadness, crying, and all the emotions that go with losing a loved one.  Now I have a really hard job, one that drags me out of sleep early each morning (4-ish, if I'm lucky), requires that I immediately get up and deal with the dog, wet bed, and take care of DW.  Several hours of laundry every day, responsible for all meals, the house, shopping, etc.  She is with me all the time, 24/7.  At least, she was with me 24/7 until earlier this year when I got someone to come in for a few hours a week so I could preserve what was left of my sanity. 

I have an all-consuming job that I work at 100 hours a week and also during the night, when I have to be always vigilant.  And looking at it as my job really helps me to disconnect from the personal insults and arguments she has every day.  Now she argues, but I don't (no profit in it for me, she can't be reasoned with as that part of her brain is destroyed.)  The love of my life is gone, replaced by the shell of my wife who can only tell me she loves me sometimes.  It's in those times I can step away from my job for a few moments and hold her. 

My wife needs me for everything, and my job is important, because left on her own, she would die.


Crushed
Posted: Friday, September 16, 2016 5:02 AM
Joined: 2/2/2014
Posts: 6262


Welcome to both of you.  I am 6 years since DW failed the clock drawing test. She is now 64 and sitting across from me as I type.  We had a bad morning as she was totally discouraged about her inability to do anything on her own.It took an hour to get her together.

I  kissed her and held her and got her dressed and we went out and saw animals. 

 We were married 41 years ago, and she is no longer the person I married, but then probably I am no longer the person she married.  you ask Those who deal with this, how do you keep caring and loving and forgiving?

 

I don't know people do it.  That is why they are all heroes.    

 

 



Steelguy
Posted: Friday, September 16, 2016 5:40 AM
Joined: 6/28/2015
Posts: 82


Becky,

We are only 2 1/2 years into our journey but DW has progressed rapidly and is now in stage 7. When DW first became incontinent was the hardest. Both for her and me. She was embarrassed by the fact and often didn't want me to change her because of it. At times it could take me as long as an hour to convince her that we needed to get her changed. She still has days that she fights me, but I know that whatever ugly things she says, that she doesn't really mean them. Part of what keeps me going, is that I know if our roles were reversed, she would do the same for me. I may get frustrated at times, but I will never lose the feelings for her that I had before she got sick. 


Alzwell
Posted: Friday, September 16, 2016 9:08 AM
Joined: 3/1/2015
Posts: 2140


Hi Becky. Welcome. You will find many friends here and much needed help, validation, and stress management.  Since you had cared for your mother before your DH,  his four years must seem a lot longer.  My DH was diagnosed 4 1/2 years ago. Testing started five years ago this month. 

I am thankful your DH gave up driving. That's usually quite a drawn-out battle.  You can ask his Dr for meds to help with his agitation. Many here have had to do that. Many caregivers take something their dr prescribes to help with their own angst and sometimes for depression. 


Mimi S.
Posted: Friday, September 16, 2016 9:17 AM
Joined: 11/29/2011
Posts: 7028


Welcome Newbies,

Do check out the Alzheimer's Navigator, found below and Local Resources, link above.

For behAVIOR PROBLEMS, I DO ADVOCATE ASKING YOUR LIBRARIAN FOR ANY BOOK BY NAOMI FEIL WITH THE WORD VALIDATION IN THE TITLE.

YOU MAY NEED SOME MEDS AT FIRST TO GET THINGS UNDER CONTROL. USE OF HER METHOD SHOULD CUT DOWN OR ELIMINATE THE NEED FOR MEDS AND MAKE ALL INVOLVED HAPPIER.


Tom K
Posted: Friday, September 16, 2016 3:55 PM
Joined: 6/12/2016
Posts: 125


Welcome to the newcomers here. An awful disease with no clear answers for individual situations. However, I personally find it helpful to listen to how others deal with their unique situations.

My precious wife of 51 years has always been focused and independent in her thinking, but also an extremely kind and generous person. Today she was physically hitting me and telling me she hates me. Wants to go home. Wants her mother. And is now angry and crying because "the little boy (?)" needs help and we should give him money. Also lots of hurtful comments that for the most part I can let roll off....after all those years before the disease, I know what's in her heart and I know she loves me.

So for me it's not the mean things she now says, it's the argumentive behavior that has recently entered and that I am having difficulty with. Almost like it is the last bit of control that she has. Basic issues have become confrontational. Won't come to bed (will spend the night sleeping in a chair), won't go to the bathroom (has accidents), won't eat dinner, refuses her meds, etc. This is my angel behaving like this, and this new phase is not one that I know how to handle.

So now I'm seriously considering a MC facility where this new behavior can hopefully be handled by professionals....apparently dementia patients respond better to people they feel are in charge.......and I can visit and just spend quality time without the confrontations. We'll see how that goes.

So my point is, read all the stuff we write here and pick out and try what might work. All of our situations are different. But also try to stay strong and appreciate that the things our LO's say are from the confused mind and not from their heart.....and if you're like me, despite the understanding, you'll still do a lot of crying.

Tom

 


frs51
Posted: Sunday, September 18, 2016 11:03 AM
Joined: 12/14/2014
Posts: 14


I'm not sure if I am replying in the right place. Will try and see. Everything you all have said makes a lot of sense. I have to find a way to shut off the emotions that his ugliness stirs up, while not shutting off the emotion of loving him. I'm reminded, however, that love is not just an emotion, it is an action. The emotion doesn't have to be there. 

I do feel for every one of you going through this nightmare that turns our loved one into someone we barely recognize. I am sitting on the patio enjoying the weather. I have been told several times already this morning to get out of "his" house. It's hard. 

The doctor prescribed mirtazipine for agitation in May and it did help for a while. I have kept her office informed and we have an appointment next week, so will see what she recommends. 

Thank you all and I hope you have some bright spots in your day today! 

Becky


mike9569
Posted: Sunday, September 18, 2016 11:29 AM
Joined: 2/4/2014
Posts: 602


On bad days I had the impression I was fighting a forest fire.  I would try to construct fire lines to keep her anger and frustration from spreading.  I would rush up and stamp out little flare up's at the margins.  All of this while I saw the fire consuming the entire forest, burning her to the ground but yet I did everything I could to fight it to forestall it totally consuming her sooner than it had to.  You just don't give up.