That is what my DH said when I got upset with him and told him that I missed him and wanted him to talk to me more. When he said that I felt guilty but at the same time I was still upset. I want my husband back, do you know what I mean? I know it is not his fault that he is like this. He talks to other people a little. He has this one male friend that he sees occasionally and they talk and laugh(his friend makes him laugh!?!?) Can you believe that but when he is around me all of a sudden he doesn't talk hardly at all. Sometimes I think it is because I am the one that is taking care of him and he doesn't NEED to talk to me. What do you think? Don't get me wrong I am very glad that he has a friend that he can still talk to and laugh with. I think I should ask this friend to move in with us. It also makes me feel a little jealous(that sounds terrible) YUCK! I know that I am a caregiver but is that all I am?

Every once in a while for just a few minutes we connect and then as fast as it came it is gone again. This message should have a little violin attached to it I know

I definatly know how to feel sorry for myself don't I?

Debbie {{{ Hugs }}}

What an honest and sad thing for DH to say to you. I hear you when you say you felt guilty. It isn't you, it isn't him.... It's the damn disease....

Thanks goodness for the friend he can still talk to. I have been observing how my Mom talks/relates to people. Those she has known for a long time, she will clam up and not talk much.... the smile, nod, agree conversations.

People she has just met, who don't know her, her past, or current situation, she is more open and chatty with. She even surprises us with things she asks and remembers after only one meeting.

Her best friend, the only lifelong friend who has stuck around, she is totally open with. This is mainly a phone friendship now due to distance, but when they talk, there is always laughter! And lots of reports about the weather!

Try not to feel jealous, although I hear and really understand that one too.

As to the moments of clarity, the reconnect that happens.... I picture some little gremlin flicking the switch.... Lights On, Lights Off, Lights On, Lights Off....

I want to send said gremlin over to the Slapfest Board!!

with love and peace,
S

Mum says that quite often when I challenge her about anything..... "I'll try and do better" and it drives me mad.

Debbie,
Hi yes its ok to feel bad about this but one thing that I have learn over the years of begin my wife caregiver.She will not talk alot with me but she sure will laugh with me. I have a gal who comes three days a week and stays for 5 hours each day.Now she has been helping for 2 years and she said that DW knows that its almost time for me to show up as she starts looking for me.She also told me that she only responds to me and she always smiles when I come threw the door.Back in May I put my DW in a NH for 17 days so I could go see family.It was long over due. I had a great time traveled all over seeing my family.When I picked her up and as we were leaving she started to cry I asked what her problem was and she said nothing.Just put her head back and started to sleep.She woke up a few minute later and looked at me and I said you don't know who I am and she kinda said yes.I told her who I was her new pet name for me.And she gave me the biggest smile and felt safe again.When we got close to home she woke again and I asked if she wanted to go to Wendys for lunch and yes again. She has changed alot since her stay in the NH I think we both needed a break from each other and now we Have more fun than we have had for a long time.
I guess we all need to find things to laugh at with each other.My daughter tell all her friends at the things we laugh at with my DW and they also laugh about it.Sometimes its the best and smallest thing that help us with this.I guess when your DH and friend get together and laugh share the laughs with them.I hope things work out for you keep doing the best you can as that all we can do.
Tom

Think of yourself as far more than a care-giver. First and foremost, a lover. A good lover savors a moment. And makes it last and last and last. The best lovers make it last forever. --Jim

My dad will say sometimes that he will try and do better and that breaks my heart. Because I know he is doing the best he can with what he has and I am, too. I don't want him to feel stressed at having to try too hard. I tell my dad that I know he's doing his best and so am I but we may need a little help from someone else. Your husband may be embarrassed that you are helping him, he may not want to appear weak or in need in front of you and with his friend, he's not depending on him, they can just be as they were, friends.

But you on the other hand, by the very nature of being a wife, are so many more things to him, all good things, but I think the dependency issues are very difficult for our loved ones. It would be for me, too.

Deb,,I'm so sorry for you,,cause whats actually happening here is that your'e going thru a "separation syndrome". Of course you miss your husband as the person he once was,,and he just is in another frame of mind,,on another plane,,which is scarey for him,,everything is unfamiliar and unsure.

He laughs with his friend,,,his friend makes him laugh,,,plus,,its a guy thing. Men will try to be men with each other,,even if they don't get what the other is saying,,they'll yuck it up and act like they do.

Rather than be upset and envious,,"YOU" need to make your husband laugh. Nobody knows him as well as you do,,try to joke and kid in a manner that is a cross between how you "used to be able to joke" and now like a teenager sense of humor,,sort of.

Its hard as hell to loose the person we love to AD,,,and AD will always win out on this fight. I would suggest that "you" get out now and then,,and get with some of "your friends" and have a few laughs and some fun,,,this will "rejuvinate your soul".

Its very very important that you take care of you,,so that you can take care of your husband now,,and as the progression kicks in quicker than you ever thought it could.

And,,I'm glad that you came here to vent,,as far as pity parties go,,hey,,we all have been there,,and will visit there periodically,,,cause we need to!!

Next time your hubby's buddy comes over,,,ask him if he'd mind staying for a couple hours,,or whatever time you need,,and you take off and go and relax and have a pleasant conversation with a good friend. Peace

Thank you so much for all your responses. I learned quite a bit. Serendipity, Lights On, Lights Off, Lights On is a good explaination for it. I am right behind you in the gremlin slapfest

Oz-Tess, If I thought my DH was not trying his best it would drive me mad too because before I knew he had dementia it did drive me mad because I thought he was faking and just too lazy to do things his best. Even though it does upset me for a while I actually do think he is trying his best and that is why I feel bad when I hear him say that.

Mycats, that is what I thought too. The reason he is not talking and laughing with me that much is because I am his wife and I take care of him. It is like a mother taking care of her kids all day and doing the disciplining and the hard stuff and then dad comes home after work and all of a sudden the kids are playing games with him and laughing and enjoying his company. My DH is dependant on me for everything basicly and he knows that I will be there for him(at least I hope he knows that) but he can relax with his buddy!

Raven, I have seen him and his friend interact together and my DH will start out being very quite like he usually is but then there is just something about this other man that just makes him open up. I think the YUCK it up thing is so right.

Do you take some time to sit down and just talk? Do you find some jokes, tell him news of the family, etc? I tell my mom famous people who died, talk about the weather, or dance stupid to make her laugh. I talk about events in the past, animals, anything that might catch her attention.

It's an effort, but sometimes it does pay off. You have to do most of the work -- but that's just the way it is, unfortunately.

Deb, I think it's due to exhaustion. Our loved ones can "turn on" the normal act around people they don't see very often, but it wears them to a frazzle. He simply can't keep up that same pace with you, because he's with you so much of the time. He does try from time to time, but it takes a lot out of him. And, I think, in some ways the fact that he can let down his guard with you shows how much he trusts you -- he can show his vulnerability to you.

Don't be jealous. A deep, abiding love for you and trust in you to love him no matter what, and understand what he's going through no matter what -- even though he can't express it any other way -- is worth a whale of a lot more than a superficial yucking it up with an acquaintance he sees occasionally. He doesn't see you as a person who is a caregiver, he sees you as the person who cares.

Thanks JAB, that was good advice and it makes sense too. I think families in general let their guard down with other family members. I'll have to remember what you said about him not thinking of me as a caregiver but as someone who cares. That might help too.

Debbie,

I hear the "I'll try to do better" thing a lot and it strikes an arrow in my heart every time.

This may sound a little odd, but this may be an opportunity for you and your husband to fall in love all over again. Perhaps you could set aside a time with him where you and he act like you've just met. Ask him his favorite foods, his favorite colors, his favorite smells, etc. Then act on this new information (after all it may have changed just due to aging, we all change our favorites over time).

My husband isn't AD, he's still my best friend and lover, but we have nights where we start everything out differently - he comes in from work and we both act like the Cleavers for an hour or two, just so we can laugh at each other. I miss those days now because we're caregivers for my MIL who now lives with us.

When my FIL was in the dying process, we had a very active fantasy life which helped him to get through the worst of times (when he was being given shots or doctors/nurses were checking him over). We went to Hawaii (I turned on hawaiian music and lit a lot of candles and brought in some fresh flowers, etc), he told me of his visits with African tribes (He never actually went to Africa...) but I'm sure you get the idea.

Maybe a picnic under a tree in the back yard? I've done that with my DH and it's a memory that will last forever in my mind. What you might have to work on - with him and with you - is to set up a rule that neither of you can revert to your normal behavior during your play time. That means no caretaking or corrective behavior, try to let things flow. Give yourself a chance to have some fun, too!

Most importantly: choose a time when you are both prepared for this game. Dress a little differently, primp a little (not for him - for you!), listen to some music to get yourself ready. The idea is not to have a romantic time, but to create a feeling for yourself and for him to enable you both to have fun with each other. If you sense any negativity and resistance, choose another time.

I'm not sure if this will work with an AD spouse, but hey, it's worth a try, right? The way I figure it, anything is good if it leaves you (and hopefully him) with a good memory and a smile.

My best to you and hang in there,

Kathy

I like JAB's response and I think it rings true. He trusts you. Can you imagine not being able to steer your life any longer and to have someone in your life that knows you completely, loves you completely and who will not let you down and will not let you fall, but who will carry you and support you and guide you. My God, what an absolute blessing that would be. And Deb, that's what your husband feels with you.

Mycats,
Thank you for saying that. I hope that is the way he feels. I try to be that for him and I know that sometimes I fall short but it is such an awesome responsibility to be everything to someone.

Kathy&Roger,
I think that is really a good idea. We got a card from a friend of ours addressed to my DH and it said that even when you don't remember your wifes name anymore you can look at her and fall in love with her all over again. I think what she meant is that he could fall in love again with the woman that he looks at.

No one can be everything to anyone, all we can do is care and love with our hearts and do the best we can, that is enough. We're not perfect and we do falter, we're human, but we care and that is what matters, not perfection, just caring. Take care of yourself, too, and try and find some time to yourself when you can, because it does become overwhelming to try and cover all bases, and take help from friends and family so that you don't wear yourself out.

quote:

Originally posted by Kathy&Roger:
I miss those days now because we're caregivers for my MIL who now lives with us.

I guess I am horning in on someone else's topic, but I saw this and was reminded of the wonderful post you put up for me, Kathy&Roger, and was wondering how it was going with your MIL (you said previously: I'm now in a position where we are moving in my MIL who also has dementia and I'm scared spitless.).

I still read your words to me and will take this opportunity to say Thank You again. My mother is in ALF now, btw.

LoveJoy

quote:

Originally posted by JAB:
Deb, I think it's due to exhaustion. Our loved ones can "turn on" the normal act around people they don't see very often, but it wears them to a frazzle. He simply can't keep up that same pace with you, because he's with you so much of the time. He does try from time to time, but it takes a lot out of him. And, I think, in some ways the fact that he can let down his guard with you shows how much he trusts you -- he can show his vulnerability to you.

By the way, I have no doubt that this is absolutely true! And think how much harder he would have to try and how much more exhausting it would be for him to turn it on for you when you will be the absolutely more impossible person to fool, too.

Plus, in my experience, this aspect of interaction is rather frustrating to me because it means everybody else thinks my mother is way more sane than she is. When, in fact, she is "covering." For you, loving and caring for your husband, you could almost be flattered that he is not trying to "cover" with you.

LoveJoy

Yes, that is so true. We had company over this evening for almost 2 hours and he was just fine. Laughing at jokes and talking about things like there was nothing wrong with him. I am glad he had a good time but...it makes me look like I am just exaggerating his dementia. In fact the male guest told me that maybe he will get better and better all the time. I hate for people to say things like that because I don't want my DH to get false hopes.