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View Full Version : LONG post - I'm coming clean


 

 

 
georgie04
08-17-2006, 10:59 PM
OK guys, here goes. I’ve been sitting on this for eight months trying to work through the guilt and second-guessing myself, but here’s the thing:

I think DH has Alzheimer’s, and you know what I’m going to do? [whisper mode on] I’m leaving.

Now, before you all vote me off the island for being a heartless so-and-so, let me explain my thinking.

I’m more than twenty years younger than DH. For the last six years we have been looking after SIL, and for four years before that his mother. Six years ago I developed a thyroid problem which really knocked me around – now that that is under control, it looks as though I may be developing Lupus. (I feel like a walking soap opera guys!)

When I first realized that DH had a problem (actually it was he who asked me if I thought he had AD – I said “don’t be ridiculous, you’re just under a lot of stress” because he has always said if he got it he would kill himself) – I sat down and tried to figure out our options for the future, and the pros and cons. Going over the list to see if I had considered everything – the thought popped into my head “OR, you could just leave”. At first I totally dismissed it – what an awful thing to do – how could I even think it???

But, over the months, I have come to think it is the best thing to do. We have been to a neurologist and his doctor – he has had every test and scan known to mankind – nothing wrong but they both made clear to me that he shouldn’t be experiencing the memory problems that he is having – they are aware of his sister’s dementia and I think his doctor gave me a deep meaningful look when that came up. He has gone from an intelligent, gentle, soft spoken man to a belligerent, grumpy, bullying man with a serious road rage problem. He has raised his voice at me for the first time in twenty years.

I’m starting to feel like this family’s punching bag (not literally - yet). He HAS got other people who will look after him if I’m not here. I have raised, very gently, the possibility of AD with his children – total denial (quelle surprise) but at least I have planted the seed.

For SIL I have been working with the agencies to put in place as much support as possible. She now gets meals on wheels, twice-daily home care visits for housework and supervision of medication, a social worker who calls in regularly and is learning to coordinate and accompany her to doctor visits, daycare, an occupational therapist and a case worker. Heck, she has an entourage!! It’s still not enough to keep her ticking along on a totally even keel, but I think I’ve made as much progress on that front as I can.

I’ve tried two ‘trial separations’ with DH to see how they would go – both times he’s wormed his way back into my good books (or worse, he’s forgotten that we separated!!). Wasn’t that a song? ‘If you leave me, can I come to?’

Exactly like n2e’s DH, he has gone from questioning if he has a problem to absolute denial, and I just KNOW I’ll go completely nuts if I have to play that game.

So, for my health and happiness, I’m getting out. I still love the old DH very much, but I just don’t deserve this new one!!

Thanks for listening, I don’t know what I would have done without you all over the last year, especially the last few months as I’ve been working through the grief and guilt. I haven't said any of this out loud to anyone - but I'm hoping you'll understand.

Love
Georgie

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angel_bear
08-17-2006, 11:45 PM
Georgie04, :wave:

*** APPLAUDING ***

Feel better now that's off your chest? LOL

Your a brave woman to have put up with everything you have done over the years. I too have looked after 'non-related' family members for 2 years, and there is NO WAY ON THIS EARTH I would do it again for another family member.

No way

No how.

Not happening.

I am very good at looking after other peoples loved ones .. I enjoy it actually, because I get to come home and re-charge my batteries.

I've warned my DH if he is diagnosed with ANY kind of dementia he is straight into a facility. I will NOT nurse him .. I will visit, I will assist, but I will go home and I will recharge and I will keep what is left of my family safe and secure knowing he is dry, clean and cared for. He will still be loved, for sure, I could never stop doing that, but I am NOT prepared to have him at home.

Now, many people think I am cruel in this decision, but I have learnt my limitations and I know what I can and can't do, and I know I can't care for a loved one 24/7 in my home. Yes, there is respite, but that eventually has to end, I don't want the nightmare anymore, I'm not prepared to put my health at risk AGAIN either.

So .. don't apologise, you've spoken from the heart, and now it's out in the open -- now you have to be prepared ... get things organised .. make the decisions wisely and with education .. and then do what your heart and gut tell you to do.

Big hugs
:angel:

needtoescape
08-18-2006, 12:07 AM
I understand. The same thoughts have been in my mind - and I'm not certain that I won't reach that same decision some day. (I'm 12 years younger than my hubby.) Not everyone will understand, but it doesn't matter. Do what is necessary for your own health and sanity. Good luck to you.

georgie04
08-18-2006, 01:22 AM
Thanks guys so much for your understanding.

I think if it were almost anything else I wouldn't feel like this - but I can't stand being around the aggressiveness and I'm not waiting for it to get worse. Having to pretend nothing is wrong - I'm having such a hard time with that. I can do it with SIL, but not my husband.

Georgie

BarbaraH
08-18-2006, 01:29 AM
(((((hugs)))))) Georgie -

No guilt! The rule here is the rule. You've done all that you could do to prepare others. Hope you've prepared yourself in every way that well. Hope, too, that you have dear friends or family or a longed for part of the country to go to.

I think you're very brave and wise. Will you leave soon?

I have lupus, so here is just a word so you don't move to the beach or where it's hot most of the time. Sunshine is very bad for almost every lupus patient. It makes you intensely hot and then can cause a flare, making all of your lupus fatigue, aches, and other symptoms much worse for days or weeks. I'd suggest you stay away from TX and the Southwest! Too much sun.

Vaya con Dios - go with God! Barbara :wave:

georgie04
08-18-2006, 01:48 AM
Thanks Barbara - bless you, you are always so kind and wise.

Actually, taking the time I have to make the decision has meant that I am emotionally prepared - and my couple of 'dry runs' were good, although of course I missed him - but I was so much calmer. My blood pressure even went down! As far as assets go, we have always kept them separate so that is not a problem.

As for where to go - I could move to where my parents are, but did I mention that my father might be getting AD too? His sister died from it last year.

As for the beach - great advice!!
love Georgie

Martha H
08-18-2006, 07:42 AM
Dear Georgie,

I will add my 'amen!" to what the others have said. I would be the last person in the world to comdemn you or cause you to feel guilty. When we come to the end of our rope, we have to leave .

I also left my husband. It is 6 years ago. It was not in his case AD, but in many ways his rages, his lack of empathy, and total self centeredness was a lot like AD. I finally started my new life in NY with my Mom, and after a couple of years her dementia took the front seat in my life.

I am now on my own since June 2005, and am just beginning to work through my emotional scars in therapy. You may want to do that too after you get settled.

All I can say is go for it. He will be cared for by his children, family and professionals. Don't feel guilty. You have your own life to live.

Love,

Martha

LuvMyLilDoggie
08-18-2006, 10:25 AM
Georgie, there's no condemnation here. Only you know what you've been through and how much you can bear. And with your illnesses and your SIL's dementia and possibly your husband and dad, you're already bearing much more than most people can.

You do what you need to do in order to preserve yourself. Stress can make your lupus worse. And I know from experience what stress can do to your thyroid. I left my dh for several months just before I found out I have hypothyroidism. It was horrible. My symptoms were much worse with the stress when my TSH was at 8.6 than when my TSH was at 32.7. And you know the TSH is supposed to be 3 or less.

Anyway, you take care of you. Do whatever it is you need to do to keep yourself as healthy and happy as possible. No guilt. What you're about to do is not selfish in any way, shape of form.

I applaude you for having the courage and strength to make that decision.

As has been said here time and again---you take care of YOU!

Love and big hugs,

Barb

cyt
08-18-2006, 12:25 PM
Georgie: Happy Trails.......You have to do what YOU think is best. If you stay, you will lose YOU. I look at it this way, if I die, hubby will keep on ticking and probably find someone else out there to take care of him. AND he would probably be nicer to her! So I say GET OUT if that is what your heart is telling you to do. NO Guilt. If he goes down, you go down with him. My Mom was getting ready to divorce my Dad, after 50plus years of marriage because of his dementia and impossible situation to live with him. Then he had to be placed in a NH and died. She would have died had she stayed and taken care of him. Now that she is living alone in a Senior Apt. Complex, she says she is happier than she's ever been. It just took her 80 years to get there! LOL Anyway, I don't blame you one little bit. Here's a poem I wrote years ago and I'll quote it for you:

THE OPEN DOOR

An opportunity comes along
It is an Open Door.
Something that will not come again
and has never come before.

Don't look back the past is gone,
and Who Knows what's in store,
This is an opportunity that you have
GO Through The Open Door.

Go with God.

LuvMyLilDoggie
08-18-2006, 12:53 PM
Did ya think we were going to try to talk ya out of it???:D

In whatever decision you make, we'll be your cheerleaders!:)

Cyt, what a beautiful poem!

Love, Barb

mamaduck4
08-18-2006, 02:18 PM
Only people that have been through this will understand. Guilt? No, I think you just can't take anymore. It sounds as though he will be well taken care of by others and that is the important thing. Sometimes I feel like my life is over and at 72 I don't know how many more years I will have to enjoy life a little. This is tough on anyone but more so the caretaker. It is so hard to watch a loved one deteriate before your eyes. How many times should you be expected to do this.

God be with you!
Jan

Martha H
08-18-2006, 02:48 PM
Dear Cyt,

Thanks for the lovely poem - it describes my life so well.

I'm going to print it and carry it with me.

I found much happiness after my breakup and again after getting my Mom into someone else's care.

Love,

Martha

georgie04
08-18-2006, 04:50 PM
Dear everyone - thanks so much for your responses - they have made a huge difference in how I feel about myself.

cyt - that poem is great - so, so apt.

And Jan, yes I do feel a bit surrounded. And I worry about my Dad if indeed he is going down this path - I have a feeling he will revert to his native language and I'm the only one in the family who understands it. He did that a few years ago when he was in ICU - he was completely out of it and would only speak with me. Unfortunately he grew up in a ****-occupied country during the war and he thought he was back there - some of the things he told me he was seeing were terrible - I can only hope they weren't all real. So, for him, going back to his younger days won't be going back to happier days.

But reminds me of a lighter story which I had completely forgotten about until just now!! The last time I was visiting with my parents, we were talking about AD - I have been telling them SIL stories for years but Dad just didn't get it. Anyhow, his sister had just died (she was back in the old country, so he hadn't seen her for a few years, and nobody had told him just how bad she was until after she died). He couldn't believe she had forgotten her husband's name - they were childhood sweethearts and joined at the hip from about age 14.

So I was explaining to him how it worked, in as non-gruesome a fashion as I could. Shortly after that it was time to feed his 15 year-old cat, who had parked herself in front of the fridge and was staring meaningfully at it. So they both go out to garage where she gets fed and Dad came back in. A couple of minutes later, I noticed the cat back in front of the fridge - so I went with her out to the garage and stood in front of her bowl. She perked up at the sight of food, had a couple of mouthfuls - and then went back to sit in front of the fridge - waiting to be fed.

I said to Mum and Dad - "OMG, your CAT has ALzheimer's!!!", they said "WE KNOW!!!". Apparently it has made much her a much nicer cat - she used to be a one-person cat, but now she will schmooze with anyone lol.

love Georgie

georgie04
08-18-2006, 04:59 PM
Oops, I got censored!! I just want to assure you that was not any kind of swearword - just the proper name of the regime

Martha H
08-19-2006, 08:02 PM
Thanks for listening, I don’t know what I would have done without you all over the last year, especially the last few months as I’ve been working through the grief and guilt. I haven't said any of this out loud to anyone - but I'm hoping you'll understand.

Love
Georgie[/QUOTE]


We discourage guilt here, in fact we call it a NO GUILT ZONE! I think each person has to decide for themselves how to deal with Alzheimer's Disease. The fact is that most of the victims will wind up in a nursing home not knowing who you are. You decide what you can cope with, and handle it accordingly. Your own health is important too. Don't let anyone make you feel guilty.

Love,
Martha

BarbaraH
08-19-2006, 10:34 PM
I must come back in to say, too, NO GUILT. This is a place of support and caring for each other. Alzheimers is bad enough, sad enough, heartbreak enough, and awful enough that no one has any right to criticize anyone else. Everyone has a point where they can do no more. That's the way it is and that's okay.

Judge not......

Blessings - Barbara

needtoescape
08-19-2006, 11:12 PM
Malakaya,
I don't agree with your comments - especially the one: if you really loved him, you wouldn't be leaving. That just isn't true. Many spouses find themselves in a position where they still deeply love their spouse - but the destructive behavior of the other (whether related to an illness or not) is beyond what they can handle and still retain their own health and sanity. Few people expect a woman in an abusive relationship to stay "till death" - which is likely if she does stay. With AD, I think the benefit of the caregiver sticking it out to the end is for the benefit of the CAREGIVER who feels they need to do that. The person with AD is not able to know anymore - and most would not have wanted their children or spouses to give up their own life, ruin their health, etc. It's really not fair to judge someone else in this situation - because regardless of your own life experiences, you just can't know what it's like in their shoes - what the marriage was like before the AD, etc.

To try to understand where you were coming from, I looked at some of your other posts. I saw that you lost your fiance to death about a year ago - and that you have had some difficulties with memory yourself. I'm sorry for your loss - and I hope the memory problems have resolved.

N2E

angel_bear
08-20-2006, 02:20 AM
I think we need to understand that everybody has different levels of patience and understanding, some have lots and can stand up to almost anything thrown at them, others buckle at the first sign of pressure. It doesn't mean you don't love them any less .. and I believe if anything, if you admit your limitations, your probably loving them even better by placing them into somewhere that is trained in their care & safety, who don't get burnt out.

I know from my experience as a home carer for my inlaws vs paid Carer for other peoples loved ones, the difference is remarkable. I buckled after 2 years of home caring .. 24 hours, 7 days a week with very little or no help and critisism, abuse and physical violence ... now? That all still happens, but I get to go home, recharge my batteries, and face the onslaught another day.

Some people are cut out for caring, others aren't. It's that simple. It doesn't diminish the love that was between those two people. And all too often, people are FINALLY placed too late .. mental damage has been done to both parties, resentment, guilt .. all make what was a love now a chore.

I believe, within my heart, to place my best friend, lover & husband (the one person by the way LOL) if he comes down with AD. I will be a better wife to him knowing he's SAFE .. I know my limitations now ... and I cannot suffer burnout again, because then I will be useless to everybody, even our kids ..

NO Guilt .. Safety for ALL first !!

Cheers
:angel:

LuvMyLilDoggie
08-20-2006, 05:37 PM
Another thing to remember is that Georgie is already a full time caregiver for her sister in law who had AD. Now with her husband's possible AD AND his violent tendencies, she's already enduring more than most people can SAFELY handle.

Malakaya, I'm not criticizing you for your views. That's how you feel and I respect that. If you can live your life in fear of what a violent person might do, more power to you. But please don't judge another person for making a decision that you don't agree with.

I don't know that I would leave my husband if he had AD. I'm not so sure I could. I don't know if I would have the guts to admit I couldn't be his caregiver anymore. And I don't know that I could be thinking clear enough to make that decision. That's why I applaude Georgie for the decision she's made. She's been thinking it over for a LONG time. It couldn't have been an easy decision for her. It's not like she said "Oh now he might have AD too? I'm outta here!". She's obviously given it a lot of thought. And I'm sure she's run through a whole gammut of feelings about this.

To be honest, Malakaya, I used to think the same way you do. I used to say I'd never leave my husband-till death do us part and I'd never put anyone in a NH. But after being a full time caregiver to my dad with AD, I don't know anymore. I've seen AD people when they got violent. It's scary. My dad drew his fist up at me several times. My 4'10" 90 pound grandma knocked my 6' uncle on the ground while fighting 2 people in her AD rage. She also threatened to throw me through a window. My aunt and uncle used to be afraid to go to sleep at night because they never knew when grandma would go into a rage and hurt them or herself. AD people, even small fragile ones, can become very strong and unpredictable in their fits of rage. Should anyone have to live in that fear? No. Not if they don't want to.

People leave people for various reasons, not always because they don't love the other person. Sometimes they leave because they do love that person and they don't want to lose that love for them and begin hating them or resenting them.

Georgie, you have my support, prayers and blessings!

Love, Barb

georgie04
08-21-2006, 01:35 AM
I want to thank everyone very much for your input. We all bring our past experiences into our present situations, and your perspectives have informed me a lot. Unfortunately, my past experience includes being trapped in an abusive relationship, which is what this is rapidly starting to feel like.

And for the sake of clarity, I feel I need to reiterate that, whatever happens, DH will always be cared for by a very loving family. I could not have begun to contemplate this if that were not the case.

Kind regards
Georgie





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