imsoblue

[Amethyst59]

I am sorry you are going through such a vile time. As you know, my husband’s children’s solution was a care home, and that is what has happened. Because I chose, and not them, he is in a lovely place and has his own apartment. I guess what I am saying is, for us, it has been the saving of our marriage. You won’t be able to carry on alone for ever, and maybe the solution that now seems like a worst case scenario, won’t be what you imagine. Now I don’t have to act like ‘mother’ all the time, I can be ‘wife’ again.

 

[imsoblue]

Sigh. Things were going on quite smoothly these last few days. Didn't even need to rant. That is, until today. This is a holiday in America, Memorial Day, so no work. And I had to keep the grand girls ages 3 and 18 months as their daycare was closed but mother had to work and dad was off at a bachelor party. I think the OH "downturn" began because I put my phone near OHs sink so I could hear alarm to be awake to get the girls. (Mom goes in at 6:15am.) OH began to unravel because he discovered I'd changed my phone's password. We both had the same password, his birth year, because that's all he can remember...and that was years ago!! That should have been a sign.Yep, he tried to get into my phone. Why??? (And @Amethyst59, I had to change my ICE to my son because OH certainly could not help me if needed.) There are things in my phone I do not want him to see. Ugly texts between his daughters and me for one. So he lets me know HE knows my password is changed and he asked me to change his for him. Now if you can't change your password and you need help....you need someone to also know your password. I reminded him that I needed to know his password. Why? Because he texts our yard man and asks him to "Call Uncle P and get the phone numbers of attorneys" or the email he sends to an advertising insurance agent asking him to help him with his retirement funds. He has dementia I keep reminding myself. He is furious that I am controlling him. F U R I O U S. He even calls The Other One (not That One?) after I send him her contact info because he has DELETED it but all he tells me is "she won't help me." Grand girls arrive, sitter arrives and we are all going to the mall where there's an indoor playground. "In the day" OH and I would take the grandkids and watch them play. Nowadays a sitter takes OH and I take grandkids. (I'm okay, I'm okay, I'm okay....NOT). Sitter takes OH home, I take Grandgirls home and do some me-time which includes grocery shopping. When I get home and begin cooking dinner, it all breaks down into he is so miserable with me he will go to a care home. (Again, I've been left before by first husband and now second husband finds me so despicable he prefers a care home over me. Enough to kill any self-esteem I've tried to create.) His daughters are coming (each taking a night) while I do a work event this weekend. He told me he will ask them to take him to visit care homes. I am such a terrible person, he will sort to a HOME? Right now, all I can think is: I will be so happy to be rid of him.
And the sad part is, I don't think its dementia (that he doesn't believe he has, in fact, it's ME that has it) its his personality. He is so mad about this and me being "in charge" he would rather be alone.
Oh, and he did eat the dinner I fixed and left his dishes for me to clean up.
He actually said these words "we are over." My thoughts? Our relationship is totally gone. He is truly not the man I married and he certainly doesn't believe I am the woman he married. Most importantly I cannot take many more of these "divorces."

 

[Amethyst59]

It is such a difficult and horrible position to be in. How to know if it is the dementia ‘demanding a divorce’ or if the marriage is over. So should you stay, because morally how awful to leave someone with dementia, or should you go, because it would make you both happier. This is my third marriage, so I know all about the low self esteem that comes with a failed marriage (even though my second marriage ended because I was widowed, people make instant judgements when they know you have been married more than twice. Twice seems to be socially acceptable!).
Is there someone you really trust so you could talk everything through? You sound so alone. Thank goodness for my counsellor, because my husbands children are angry that I am married to him and have ‘power’ that they don’t have, and my sons are upset that I am married to a man who has treated me badly, and made me ill.

 

[Grannie G]

We are told not to take these episodes personally because it`s the dementia talking but it`s not easy.

My husband used to say I was controlling and taking away his independence. However much I tried to be stoical, it could only be very upsetting.

I put it down to fear about the feelings his dementia gave him. He must have felt he was losing all control over his life and this, for a very independent and adventurous person will have been a nightmare. It`s easy to realise this with hindsight.

I had years of insults and accusations and my only consolation, if I can call it that, is the final four years of my husband`s life saw him lose his insight ,and so this fear, and become the kind and loving person he was before dementia struck.

After years of horror, our final years together gave me some lovely memories.

It`s not much consolation @imsoblue I know, but at least there is hope.

 

[canary]

Im sorry @imsoblue
The need for control is a major symptom in FTD. Their executive function is failing and they know they are losing control, but they dont understand why and think its because its being taken away from them. OH constantly tells me Im taking him over and preventing him from doing things - he just doesnt understand that he simply is unable to do them any more and is desperately trying to hang on to the things he can control. The threat of divorce is also really common in FTD, I think it is because they are trying to provoke a response - my OH told me in a lucid moment that he could no longer access his emotions and it felt to him that everyone and everything was emotionally distant from him. This insight didnt last long and within half an hour it was back to me being at fault, but I found it enlightening to me. I think a lot of it is him being like a small child stamping his foot and saying "I HATE YOU!!" when he cant get his own way.

Not that understanding it makes it easy - it is still my OH looking and sounding like my OH, but saying horrible things and behaving in a way that he never would have. Im sorry, I dont seem to have an answer and have just gone on about myself. Sending tons of empathy ((((((hugs)))))

PS - I had to smile about him realising that your phone password had changed and wanting you to change his too. If he goes on about it you could actually do this - do it in a way so that you know what the new password is, but dont let on about this and it may not actually occur to him that will know it

 

[carolynp]

Im sorry @imsoblue
The need for control is a major symptom in FTD. Their executive function is failing and they know they are losing control, but they dont understand why and think its because its being taken away from them. OH constantly tells me Im taking him over and preventing him from doing things - he just doesnt understand that he simply is unable to do them any more and is desperately trying to hang on to the things he can control. The threat of divorce is also really common in FTD, I think it is because they are trying to provoke a response - my OH told me in a lucid moment that he could no longer access his emotions and it felt to him that everyone and everything was emotionally distant from him. This insight didnt last long and within half an hour it was back to me being at fault, but I found it enlightening to me. I think a lot of it is him being like a small child stamping his foot and saying "I HATE YOU!!" when he cant get his own way.

Not that understanding it makes it easy - it is still my OH looking and sounding like my OH, but saying horrible things and behaving in a way that he never would have. Im sorry, I dont seem to have an answer and have just gone on about myself. Sending tons of empathy ((((((hugs)))))

PS - I had to smile about him realising that your phone password had changed and wanting you to change his too. If he goes on about it you could actually do this - do it in a way so that you know what the new password is, but dont let on about this and it may not actually occur to him that will know it

On the contrary @canary , far from going on about yourself, as you say, your analysis is extremely helpful to me - I am especially aware of my OH with FTD trying to provoke a response from me sometimes, but until I read what you say here I’d thought I was imagining it.

@imsoblue I am terribly sorry you are having such a horrible time and in such a prolonged way. It cannot but threaten your self esteem, I am just amazed you are still standing. Many lesser mortals, myself included, would have been reduced to a quivering mess months ago!

Just know that we are all here for you, with our own bruised selves, ready to sympathise deeply and also to reassure you that NONE of this is your fault - or, indeed, has anything to do with you. You are in the firing line through no fault of your own, and @canary has explained her sense of how this happens in the case of the FTD sufferer.

What you are going to do, in this awful quandary, I have no idea. The temptation to let your OH have his way must be pretty strong! Can you wait it out, though, maybe - for a bit? I’ve noticed from other posters with longer experience than we have that some phases of the disease are just that, and they pass.

As to jacarandas, YES they are the tree, I’ll try and find my photos for you, as we have three outside our house. The flowers are an amazing blue-mauve-purple.

The Force be with you in this time of trial!

Hugs, hugs, hugs.

 

[imsoblue]

Dear FRIENDS,
Much thanks to you all! I usually don't read TP before work but I was so distraught during the night I checked in to see if I could find any answers for my ordeal. Amazingly you contributed to my plight and have given me relief in the form of more knowledge to what may be the cause of his behavior. Knowing you have all witnessed this too allows me to consider the possibility that it is the dementia talking. Of course, it's also his anger. His immobility and overall life predicament (stuck in his house with a sitter) are wearing on him and therefore me.
You have empowered me...for the day, at least. I will be gone until late tonight for work and he will be alone. No telling what trouble he will get into (calling attorneys, care homes, selling our house.)
Again, @Amethyst59, @Grannie G @canary @carolynp you cannot believe how each of you contributed to making my day so much better than it would have been had you not written. The bond I feel with you grows deeper.
Oh my @carolynp as I type, I hear the beep beep beep of the wheelchair in reverse. That means we have to talk before I leave. My heart sunk....and I was so happy a second ago.
Anyway, I will let cherish you all. I have a long drive today and my thoughts will be lighter than originally thought.
Hope y'all have a good day.

 

[imsoblue]

I got home late. My work took me an hour away to a town where Son #3 lives. My meetings were late ending anyway, but because I knew what was waiting for me at home (OH) I decided to invite Son #3, his friend, and his fiancee out to dinner. I wonder if anyone would never have a twinge of guilt for not coming straight home as I knew he had been alone all day and getting meals is very difficult for him. I had the guilt but I didn't care. I will not let this disease ruin my life anymore than it has and will continue to. I called him and told him I was staying longer and did he want me to bring him a dinner. No, he could his own meal and I would be arriving too late. I did bring him my entire meal (the soup filled me up) and even at my late arrival, he ate it. He had heated up a frozen meal too but strangely he did not do it any earlier than when I arrived.
I also had to drive for two hours round trip and talked on the phone to my close friends who have counseling experience, one having worked with dementia patients. Both laughed out loud when I said OH wanted to go to a care home. "That's what he wants today. Wait until tomorrow." I am so thankful that I found TP and all of you. Your journey unfortunately is helping me and I appreciate your sharing.
I cannot tell you the stress relief reading your comments did to my soul. Thank you.

 

[imsoblue]

Today is one of the worst days so far. I am so sad. Maybe I’ve been avoiding that feeling and instead concentrated on being mad. Sad is the worst feeling ever. I was driving to work and Son #1 called. My work today is an all day workshop and I ended up being late because his call was more important. It was my life. His calls are usually asking me to get the grand girls from daycare. Not today. He had heard from the Other One. Her dad has shared with her his desire to go into a care home (because he’s so angry with me.) I told Son this is the dementia talking blah blah blah. Son says, “Mom, let him go in the home while he is in favor of it.” Really? I’ve been holding on to him so long. Denial? Dare I say “He’s NOT THAT BAD in regards to dementia”. He has awakened me the last 3 nights to help him get into the bed and I have graciously helped.
I am working into the reality that my OH is going into a nursing home very soon.
I am crying while I type. And, I’m in this workshop pretending to take notes!
My thoughts are everywhere. I remembered being whamblasted because I had an OH in a wheelchair...then an OH with dementia. And soon, on OH in a care home.
As I said when my 97 year old mom died “I always knew this day would come. I just didn’t think it would be today.” We will begin looking at homes and possibly get on a list. Thanks to TP I have this outlet.

 

[campervan21]

Oh imsoblue, thinking of you and your family, xx

 

[Amethyst59]

@imsoblue ...you know my husband went into a care home in February. We had had a terrible time, and I was so angry with him, and so hurt. Now that I am rested, and some time has gone by, we really have a new start to our relationship. I know it might be different for you, but truly we were in a terrible place and so many people on TP said to me, that things might be different when he moved. I never thought it would happen, but it has.
Don’t fear this as the worst thing that could ever happen. It was such a good decision for us and it might be for you too.

 

[carolynp]

Today is one of the worst days so far. I am so sad. Maybe I’ve been avoiding that feeling and instead concentrated on being mad. Sad is the worst feeling ever. I was driving to work and Son #1 called. My work today is an all day workshop and I ended up being late because his call was more important. It was my life. His calls are usually asking me to get the grand girls from daycare. Not today. He had heard from the Other One. Her dad has shared with her his desire to go into a care home (because he’s so angry with me.) I told Son this is the dementia talking blah blah blah. Son says, “Mom, let him go in the home while he is in favor of it.” Really? I’ve been holding on to him so long. Denial? Dare I say “He’s NOT THAT BAD in regards to dementia”. He has awakened me the last 3 nights to help him get into the bed and I have graciously helped.
I am working into the reality that my OH is going into a nursing home very soon.
I am crying while I type. And, I’m in this workshop pretending to take notes!
My thoughts are everywhere. I remembered being whamblasted because I had an OH in a wheelchair...then an OH with dementia. And soon, on OH in a care home.
As I said when my 97 year old mom died “I always knew this day would come. I just didn’t think it would be today.” We will begin looking at homes and possibly get on a list. Thanks to TP I have this outlet.

Oh I am so sorry Dear One. I just woke. Painters due. OH announcing how tired he is.

There is no remedy, no consolation, for this incredible situation in which we find ourselves. But the bravery and resolution of others such as you warms our hearts and keeps us going. Thank you for your post and my thoughts are with you. Sorry not to be able to do or say more right now. I’d be there in a heartbeat if I could. Much love and many many hugs. Carolyn.

 

[imsoblue]

Such sweet and caring comments. Thank you all. I made it through the workday/workshop without anyone knowing how I was dying inside. Had to work late and the Other One called while I was trying to make a deadline. I called her as I drove home. To her credit, she was letting me know that her dad had texted her and asked to be taken by her to check out a care home when she was here tomorrow. I did not tell her Son #1 and I had talked. She did tell me she had texted my son so she is being open and honest. She wanted to ask me if it was okay to take him to see this one place. She said she knows he is being mean to me (used a better word than that) and he's mean to her and even That One has complained to her of his meanness. She said "it's time" and I shouldn't have to live like this. Still so sad. She speaks of him bluntly saying she wouldn't have lasted this long. (I wished I'd asked if it were her HUSBAND, how would she be reacting. Of course, no one know unless you actually live it.) When I reminded her that this time last year he was 1 week into retirement and was driving to the golf course and playing 18 holes. She was shocked. See, this isn't her life, it's mine. I'm the one who will live alone. It's going to be a first for me. Always had a roommate, husband, little kids. I leave tomorrow for a weekend of work. Next week I'll go see the attorney for legal advice. OH has been mum and didn't tell me about his plans for tomorrow.

 

[imsoblue]

Oh imsoblue, thinking of you and your family, xx

Your words were so simple and yet that broke my heart when I read them and COL (cried out loud...I made that up.)

 

[imsoblue]

@imsoblue ...you know my husband went into a care home in February. We had had a terrible time, and I was so angry with him, and so hurt. Now that I am rested, and some time has gone by, we really have a new start to our relationship. I know it might be different for you, but truly we were in a terrible place and so many people on TP said to me, that things might be different when he moved. I never thought it would happen, but it has.
Don’t fear this as the worst thing that could ever happen. It was such a good decision for us and it might be for you too.

And aren't you selling his home? What a life style change! You have been my virtual mentor. I feel I have been in your shadow since I joined TP. First with the step children and now the care home. What would I do without TP and all of you? I guess the dementia has overtaken him more than I gave it credit it for....he will be okay there. He has to be. His daughter said she will tell him, this will be it. There will be no leaving after you come in. It will be YOUR decision. I reminded her he is incapable to making any decision.
I know what I'm holding on to. I'm holding on to OH. But OH is not there.

 

[imsoblue]

Oh I am so sorry Dear One. I just woke. Painters due. OH announcing how tired he is.

There is no remedy, no consolation, for this incredible situation in which we find ourselves. But the bravery and resolution of others such as you warms our hearts and keeps us going. Thank you for your post and my thoughts are with you. Sorry not to be able to do or say more right now. I’d be there in a heartbeat if I could. Much love and many many hugs. Carolyn.

Carolyn, join me in New Orleans this weekend. I'll buy you a Sazerac. Y'all all come. Temperature will be about 95 degrees F.
I will be joining @Amethyst59 as we are forging into this world of separate living quarters. I will mentor those who follow behind us. The Other One called the care home to find out more particulars today. She said they told her we BOTH could live there. She told them "oh no, she's too young!" She even told them NO one wants to live with him. Whew....I have allowed my brain to begin to visit the idea of him being gone and me not being awakened to get him in the bed at night, fixing his dinner and sweeping up afterwards, the cursing, the fighting,
I will see the attorney and get fiscal matters taken care of next week.
This has happened so fast, however, he may straighten up when he sees what the care home looks like and costs. Then I may have to whine that he's staying put with me for awhile. Life with a PWD...a roller coaster.

 

[carolynp]

Such sweet and caring comments. Thank you all. I made it through the workday/workshop without anyone knowing how I was dying inside. Had to work late and the Other One called while I was trying to make a deadline. I called her as I drove home. To her credit, she was letting me know that her dad had texted her and asked to be taken by her to check out a care home when she was here tomorrow. I did not tell her Son #1 and I had talked. She did tell me she had texted my son so she is being open and honest. She wanted to ask me if it was okay to take him to see this one place. She said she knows he is being mean to me (used a better word than that) and he's mean to her and even That One has complained to her of his meanness. She said "it's time" and I shouldn't have to live like this. Still so sad. She speaks of him bluntly saying she wouldn't have lasted this long. (I wished I'd asked if it were her HUSBAND, how would she be reacting. Of course, no one know unless you actually live it.) When I reminded her that this time last year he was 1 week into retirement and was driving to the golf course and playing 18 holes. She was shocked. See, this isn't her life, it's mine. I'm the one who will live alone. It's going to be a first for me. Always had a roommate, husband, little kids. I leave tomorrow for a weekend of work. Next week I'll go see the attorney for legal advice. OH has been mum and didn't tell me about his plans for tomorrow.

Yes Honey, exactly right. This is your life. Tend it with the utmost care. I too have never slept in a room by myself. First shared with my younger sister. Got married from home. Forty-eight years later and here I am. It is terrifying to think of having to forge ahead alone, after (eventually?!) having to make the decisions you are abruptly being faced with.

Like @amethyst and @kindred, you too are a pioneer for the rest of us (despite being so young!). Hang in there. We’re counting on you!

So amazing and wonderful that the step daughter refused the CH on your behalf and for such a nice reason! Imagine if instead she’d tried to persuade you it would be a good idea.

I think what your son said is brilliant. Far better to do this, if it turns out to be possible at all, while your OH is actually wanting it himself.

I looked up that drink you mentioned. I’ll be on the next flight.

 

[Amethyst59]

I spent yesterday evening and night alone. I’ve been really lucky in that my youngest daughter moved in with me about a year ago, and plans to stay for about another year. Rent is so expensive here, she cannot afford to live alone while she is training.
Last night she stayed with a friend, and look! I survived! I’ve only ever had a few nights alone. When I was widowed my two youngest were still at home,and by the time the youngest went to Uni, I had met Martin. Look where that got me!
I, too, can stay with Martin, and do have occasional nights there, but I don’t sleep so well there. I think you know I am going to a counsellor? I feel I need her at the moment, it is an odd transition to make. It’s a bit like being widowed again...except there is still something of a husband, somewhere...and still the widowhood to come, so a bit like living with a terminally ill husband again. I couldn’t see how I could go through this alone and come out sane the other side.
If you can get access to a counsellor, I really would recommend it.
I hope his look see today goes well. Just a thought, won’t you have to sign paperwork as you have LPA, or does he still have capacity?

 

[campervan21]

Your words were so simple and yet that broke my heart when I read them and COL (cried out loud...I made that up.)

Bless you xx

 

[imsoblue]

I looked up that drink you mentioned. I’ll be on the next flight.[/QUOTE]

Loud loud laughter!!!! This will get me through my day. And a sazerac tonight will get me through my night! Son #2 and his family will be joining me in my hotel. They can do that now since OH won't be there.