Hurt and Lost

MWP1963

My wife has had Dementia for quite a few years now and last night we got into an argument over TV programs (silly I know), she claimed that she can never find anything on when she only switches to 1 or 2 channels out of thousands. Well during our argument she lit in to me about how I treat her like a child, and yes I do because thats the way she thinks and acts, well at one point she told me that "I dont love her anymore", I asked her if that was true then would I do everything for her and she said "YES", now this morning she expects me to be all hunky dory and everything be just fine. That hurt when she said I didnt love her any more. This morning we tried to talk about it and again she said the same thing. What am I supposed to do? I do everything for her, give her whatever she want and everything. She tells me to do things for myself and yet when I do she throws it up in my face and says that she NEVER gets anything she wants or gets to do anything she wants to do. I am tired of the mess but I love her to death!!

toolbeltexpert

Mwp I have heard alot of what you heard. Your wife may not remember last night like you do. My dw used to say I was buying all this stuff for me and she never spends any money. I remember when she asked me if we are married,did I have a paper that showed it, I remember when she told me that this was her house and she didn't  know who I was and I needed to leave. 

I was hurt and shocked as you might expect, but she doesn't remember and I really wanted it to be hunky dory, it was up to me to make it, because she couldn't. 

I hope you aren't hurt by my words I certainly do not mean them to be, but it's the caregivers who have to change,and it's hard really hard. It's best to not argue but agree. Others will offer their experiences. 

I am sorry your going thru this!

Stewart

MWP1963

Thank you for your response Stewart, I agree that it is up to the caregiver/spouse to change, its just so hard to deal with those words, this morning she did remember saying that and apologized but very hard to just let that go, we been married for 36 years next month and this is the worst  we have been through. I am just so tired and worn out trying to accommodate her and do for myself to where I have no energy or interest in doing anything. Scared to go outside and do anything in the yard because of fear of her falling in the house and very hard to get someone to sit with her because of trusting a stranger with her care plus in my eyes its a waste of govt money to have someone do what I can do.

Ed1937

MWP1963 wrote:

What am I supposed to do? 

Pick your battles wisely. Most things don't matter in the long run. Her brain is not the same as it was, and you have to remember that. And instead of telling us that you love her, tell her. Often.

MWP1963

Believe me, I do tell her several times a day that I love her. Yes I know her brain is not what it use to be and I have been dealing with that just fine it was the part she said last night that is just hurting to no end

Paris20

MWP1963, I wish I had a magic wand to wipe away what your wife said. Caregiving someone with dementia is the most thankless, frustrating, and painful experience of my life. Words have meaning to us so when we hear what we take as cruelty, we are wounded to the core. Yes, we know our LO has no idea what was said. There is no reason or rational thinking behind those hurtful words. The hardest thing to grasp is that we cannot do anything to stop it. The burden is all on us to take those words and toss them out, learning to ignore what is so hard to ignore. In a few moments, our LO will have forgotten. For us it is an overwhelmingly challenging task.

Scooterr

Mwp I totally understand, but the one thing we have to remember it's the dementia talking. I know for us or for me it's a hard thing to swallow. When my wife told me she hated me for the first time in 40 plus years it was devastating. I don't even remember the circumstance that lead up to it. Like you my wife can and will act very childish. I think in some ways dementia is growing old in reverse mentally (if you know what I mean). My wife acts like she is 8 yrs. old now. The words they say can be very, very hurtful,  but somehow we have to see pass that, and except that it's only the disease talking. It sounds like you love your wife very much, and are doing the best you can. It's hard  when you first hear those words, but I have a feeling she appreciates and loves you very much.  Hang in there.

storycrafter

So hard to hear those words even though we know they're not rational. Each time is another grieving process.

A counselor said to me, "Think of your 2 yr old grandson. How would you respond to him if he behaved/spoke like your spouse? ... Respond to your spouse like you would to your grandson."

Like such things are, easier said than done. But I work toward that perspective of not taking things personally. It's a continual practive in letting go, in detaching with love. Often I must go and privately let feelings out in a good cry, or call a good friend, or come here for a compassionate ear and safe place to let it out.

I meant to add, when she says things like, "You don't love me any more," your wife may be needing simple reassurance. She may fear you won't care for her. Reassurance that you are there for her may be be what she needs to hear.

We do the best we can. You are there for your wife and are doing all you can. We are all human and feel like humans do. Kudos for being there and hanging in.

Hoot619

She is still the person I married and grew to love  very much. She is still there somewhere, yes it hurts when she took it out on me. But I have to remember that she WAS doing the best she can.  Her thoughts  and what she does isn't like her anymore. She doesn't know I am trying to help her.

  Now she doesn't recognize me or her daughter. She hasn't eaten , drank anything in a week.  Yes I am lost, dear daughter has left for downstate I miss her. She is someone else who misses her Mom terrible and hopes she passes quickly.

This darn disease has no cure for it, it just keeps taking and we have to accept it. It is awful hard to do. Hoot

MWP1963

Thank you everyone for your words of wisdom, I just needed to "vent" so to speak and I know I dont post very much if ever but I do try to read as much as I can. Sometimes it just gets to you and you need somewhere to get  it out, dont have any close friends around me and as for my "family" well thats another story lol

Dio

It's much harder to do than we can ever imagine, but I have to keep reminding myself: IGNORE. IGNORE. IGNORE. Just agree, nod, and/or apologize; at the end of the day, it truly doesn't matter who is right or wrong because in the fractured mind, theirs is the only reality they live in. Just play along, and view it as make-believe; you'll find it hard to do at first, but in time you'll find that it's easier than trying to "win" the argument.

Trying to reason or defend yourself is futile; it won't sink in nor will it register/be remembered in our LO's ravaged mind. Poof, all's forgotten in their mind. Arguing will just drain you, and agitate her.

Then there's your hurt feelings to deal with... so cry, grief, do whatever to vent and get it out, but please know that the person has loved you, and still loves you. What changed is that she is incapable of showing it. When she accused you of not loving her anymore, it's her fear talking. I went through a very rough patch with my DH when he believed I was planning to divorce him...heavy sigh. It took a long time with lots of reassuring and extra loving to mend the fractured trust.

I am still learning to cope each day.

Hoot619

MWP, your part of a big family here and you get to be close friends with others even though you may never see them. Everybody here cares about what is going on weather good or bad in each of our lives. We are all in the same boat and if one loses a oar we all try to pitch in and help. It has helped me very much, takes away some of my fears and gives me courage to face others.  Hoot

saltom

MWP It can be really hard to leave your wife with someone so you can go do something for yourself. BUT if you don’t take care of yourself, you won’t be able to care for her. Caregiving for someone with dementia is one of the most mentally, emotionally and physically taxing jobs there is. You have to stay healthy. Are there resources in your community to help you find reliable caregivers, or an agency that provides respite care? Venting on this forum helps some because we all have either been there or see it coming our way and and many have good suggestions. We all care about you and don’t want to read that you have become ill from the stress. As a side note, after 63 years of marriage, I am being accused of being a b...h and having an affair. I agreed to being the b, but not the affair.

Joydean

MWP it really does hurt when we hear words like that. The first time my dh said something like that it was like a slap across the face. Such a shock and my heart felt like he had ripped it out. It didn’t matter how many times I reminded myself it’s this dang disease, it still hurts. The next day he was telling me how much he loved me! This whole disease is like being on a out of control roller coaster. 

We are here for you as so many others have said. You can do this. 

kp13

Wow, it is so helpful to hear what some of you are writing about. This is my first time here. My husband has not yet been diagnosed. I got him to go for an evaluation 3 years ago and they said he was fine --memory issues were just depression from losing our daughter almost a year earlier. I knew and told them that memory issues existed before then.....   Now, he puts movies on we watched the night before thinking we haven't seen them, repeatedly asks questions about things I answered an hour ago.....now, personality changes. He can act goofy like a child or completely irrational. About eight weeks ago, I tried to have a very reasonable conversation with him and he got very upset and came after me to hit me --and did a couple times. We have been married for almost 37 years. He has never hit or even tried to hit me. In an argument, he is more likely quiet than how he was this day.  --He now is refusing to take his pills -- I manage all of his pills and have to nag him to take them and then he argues. I have to carry them to him and he refuses them.  

It is often as if there are no longer rational discussions. Last night, when I carried his pills to him, he started refusing them. I ended up throwing them across the wall and yelling that this was ridiculous.  He said he was just joking. He does it every night...... 

He begged to retire. My guess was that his memory issues were causing problems at work (architect). I handle finances and coordinated him retiring. I still have to work for another three years. (He is 59 and I am 58.)  We had discussed him being able to do more at home --but he isn't. He watches movies all day. He won't go to the grocery store or do anything bout the house. He can't even hire people to do things because he forgets what they talked about before the current conversation. He won't go to the doctor alone. If he goes to pick up a prescription, he ends up freaking out of the crowd at CVS so I tell him that I will do it on my way home. He won't even change the cat litter....   This is all not like him.  ---I do feel resentment as I have a very demanding job and could use help with some things.....

I coordinated for us to go to Mayo in Jacksonville (FL) to be evaluated. One day, he seemed to accept it and agree to it ---but days later, he has no memory of that and said he won't go.  They are calling him and he won't answer.   ---He says that he will just go in the backyard some day and end it all --rather than deteriorate. 

Hearing what everyone is saying about not being able to reason with them or expect them to be rational is helpful. I have been doing that --basically, because it was avoiding confrontation and causing disruptions.  I have wondered about pushing the doctor....  It seems it is needed --but then I also fear what he will do with a diagnosis (back yard comment has been made several times). 

I am at such a loss as to what to do with him. We both know something is not right. I try to explain that there are medications that could help or slow it down to try and explain why we need to go to doctor. 

I wonder if I should let him know when he forgets something from an hour ago or if I should not. I do both at different times. Part of me feels that he needs to know something is wrong so he will go to doctor. Other part just wants to let him not feel bad...... 

Very hard to be losing my partner... I lost my beautiful daughter and now this. I am very lost --but need to get back to work and be competent.....

If anyone has any advice, I am very, very open to it.

Thanks for listening.

Crushed

For everyone dealing with a spouse with a broken brain
if told this before but I like to think it helps 
 
DW comes down to breakfast

DW  Did I have sex last night ?

Me YES

DW was it with YOU ?  

Me   YES  

DW  Good, I was so worried  

It just sums up that they live in their own world

toolbeltexpert

Kp welcome to the forum that nobody wants to join. You are describing a lot of the behaviors a pwd does. You might want to copy your post and start a new topic. You'll  get lots of responses that way. Click spouse caregiver and then the green add a topic. 

Getting a diagnosis is difficult, my dw resisted every attempt. She had a little bump come up on her neck and I made a big deal about it how it worried me. I made the appointment and didn't tell her to about 2 hrs before, when she tried to back out I told her there was a 3 hundred dollar cancelation fee. She went just not real happy.  You need to learn some tatics for your safty if your husband gets violent. That is very common. 

Like I said start a new topic and there are many who will have great advice.

Stewart