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Old 10-04-2012, 10:08 AM   #1
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The one single thing I most regret and miss ....

... when your spouse is impaired cognitively...

I really, really miss meaningful conversations. It's like getting in a car but stuck between neutral and first gear. Engine is revving, but you can't get into the higher gears to get anywhere meaningful.

 
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Old 10-04-2012, 11:42 AM   #2
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Re: The one single thing I most regret and miss ....

Luau, I am so sorry that Lucy cannot talk to you significantly anymore. It would help if you join some support group locally and talk about it or share it with other people who have been through this. It is like you are missing her now but she is still with you. Cherish whatever is left with her and share with other friends. I know this does not replace such relationship. It is the sad part of this. We did miss the normal Dad-son relationship when my late FIL was sick with Alzheimer's. My husband could no longer talk to his Dad about real stuff anymore. All we had left was to deal with his fantasy at work.
Yes the first few years with my late FIL when I first married was the good ones. I got good impression because he was still normal. After he got sick and everything we went through, I knew my late FIL more given his honest remarks during his sickness. Yes he was demented but I can still tell that he meant this or that - it is part of his habit and personality. It is not total nonsense. I can see him through the talk. But it was not the original him and we could not reason with him anymore. How I wish we could have done this or that with my late FIL...
We learned to cherish whatever was left with my late FIL and took care of him as it was our duty. Nothing else can replace such relationship. It was a long goodbye (the whole thing started in late 2004.)

Thanks for sharing that with us.

Regards,
Nina

Last edited by ninamarc; 10-04-2012 at 11:57 AM.

 
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Old 10-04-2012, 08:45 PM   #3
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Re: The one single thing I most regret and miss ....

Luau, I think that goes for any loved one with cognitive impairment. How I wish I could have a conversation with my Mom. I have so much right now I would like to tell her and hear her comments. I do tell her... but I know she doesn't understand and can not comment on what I say. She just looks at me with that blank look or gives me back garble. It's not a spouse but I do get it.

A support group is a great idea. There are groups sponsored by the Alzheimer's Association that are specific to caregivers of spouses. You can look online or call the national hot line to find a group in your area. I know for a fact that not all caregivers in these groups are specific to care of those with Alzheimer's. They include all dementia and cognitive impairment. The cause and diagnosis may be different but the effects on relationships, the need for information, and the need for support is the same. It is worth a try

Love, deb

 
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Old 10-05-2012, 10:54 AM   #4
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Re: The one single thing I most regret and miss ....

Thanks for your support, Nina and Deb! After the relative tranquility of the past couple months, the nasty evil twin has swapped places with the happy Lucy. Once upon a time when I had a conflict, I turned to Lucy for comfort and talk. This time, it is Lucy herself. This period is going to be ugly to the extreme, probably worse than any other previous periods. I better get my cardiologist to up my blood pressure med.

 
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Old 10-05-2012, 12:01 PM   #5
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Re: The one single thing I most regret and miss ....

Luau, call the all knowing neurologist that declared her ok and give him a list of current concerns. If the situation warrants... call 911 and have her transported for evaluation. Please do not let the antics of evil Lucy twin take YOU back to the CCU! Please....

I understand our wish to make it right, fix it, do more than we can do... and that wish can destroy our health. I have said before.... there are TWO in this equation and there is no one more important than the other. Actually the caregiver has to take care of themselves first to be able to take care of the loved one. So taking care of you is for you but it is also for her.

It's a sorry second but we are here....

The place you are right now is the place I found the most difficult. It's the not knowing, dealing with what you know but don't know, and not being able to lean on the very person you need to lean on because they are the problem. It's that muddled middle ground between normal and what will come. Hang in there, take care of yourself, and know this is not forever....

Love, deb

 
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Old 10-05-2012, 02:18 PM   #6
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Re: The one single thing I most regret and miss ....

Quote:
Originally Posted by Luau View Post
Thanks for your support, Nina and Deb! After the relative tranquility of the past couple months, the nasty evil twin has swapped places with the happy Lucy. Once upon a time when I had a conflict, I turned to Lucy for comfort and talk. This time, it is Lucy herself. This period is going to be ugly to the extreme, probably worse than any other previous periods. I better get my cardiologist to up my blood pressure med.
Luau, I guess this is the time for Lucy to be suspicious? Anything you do is not right for her? I guess it is the time when she is not very sick and yet she is confused and questions everything... Is it possible to get some antipsychotic drug or some anti-depressants? She may need some med. But the doctor has to see how sick she is.
My late FIL was not easy either but the caregivers devoted their time to please him so they also had a thing or two from him. Once he was outside in the front door telling everyone he was "kidnapped" or something. The caregiver had to be with him. Someone even told her to get a chair for him to sit outside. I guess this is not just about earlier stage. My late FIL did it all the time with moderate stage which takes a long time. He was confused. He even packed the old briefcase with some old books and waited for my husband to "pick him up" but we left his house already. The caregiver just let him be.

Maybe it is time to get someone to help out so you get to have a break.

Regards,
Nina

Last edited by ninamarc; 10-05-2012 at 02:20 PM.

 
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Old 10-05-2012, 07:33 PM   #7
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Re: The one single thing I most regret and miss ....

I'm sorry, Luau! That's what I miss about my husband the most, the meaningful conversations. He was my neutralizer and best friend. He's still here but, yet he is not...

 
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Old 10-06-2012, 11:12 AM   #8
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Re: The one single thing I most regret and miss ....

Scorptired, isn't that the truth! Here is the #1 go-to person in life, except you can go-to anymore. unlike your husband, my wife is still very high functioning. Nina said it well. I have great difficulties controlling her. She pulled half a dozen super dozzies last week; she is completely out of control. She used to be the person I go to ask how to handle certain situations. I can't very well ask her how to handle her!

To Deb, Her behavior is not yet outright reckless. But if she does pull anything of that sort, this time I will call 911 first, as much as it will pain me to do so. So in the past week.... she dropped the university class, right after I paid the tuition. she is still lying to me about it. One day she disappeared with a friend. Then she came home with another dog, her sixth. Turns out that dog cost her 2 thousand dollars, which she paid for by cashing out her IRA. Now I found out just now that she arranged for a boob job, which is to happen in 2 weeks unless I stop it, which will cost 5 thousand. Her son is getting married next summer, and she decided she wanted to give him a cash gift, but a whole year in advance. So we had a huge fight a few nights ago because I refused to write out a 10 grand check on the spot. See? She is a financial wrecking ball! The big difference is now she has to pass most of these by me. A year ago, they would have all happened, leaving me wondering why we were suddenly moneyless. See Deb, these are not issues that having a "sitter" can fix.

I just wish I can stop time for a bit. let me get off and catch my breath before resuming. The movie Fast and Furious comes to mind.

To anyone, I have heard of depression accompanying dementias, but has anyone knowledge of bipolar? Right now she seems on a super mania, but the accompanying memory and cognitive lapses say bp is a symptom, not the root.

Last edited by Luau; 10-06-2012 at 11:28 AM.

 
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Old 10-06-2012, 03:48 PM   #9
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Re: The one single thing I most regret and miss ....

Luau, I get it... and remember that time well. Mom approved the cashing in or her IRA and some long held stocks that were 95% capital gains eligible to buy an annuity from two guys she met in a restaurant.... $250,000! She would NEVER ever regain what it would cost her in penalties and taxes to move the money. It was NOT what she needed at the time considering her dementia and the cost of care in the future. I was able to reverse/halt the movement of the money. She called me a week later proud that she had done it again! Yep, they called and she said sure move the money. I not only stopped it again but scared the pants off those guys and they never called again... thankfully!

Then I found out she was paying for an internet service... $29.99 a month, charged to her credit card and she did not use that internet service. She was receiving over $100 a month from a mail order place and it was stacking up under the cabinet. Yep, she did some major gifting and donations. I came home and the outside of the house had been painted for the 2nd time in less than a year. She had new kitchen cabinets, counter tops, and the inside of the entire house had a fresh coat of paint. The new tilt out windows was a biggy. On and the Nissan Maxima with leather interior, BOSE sound system.... A second car when Dad couldn't drive. This created major problems because when she drover "her" car Dad was left with the car keys and the van. He only disappeared TWICE! She blew through that $250,000 anyway!

Each was a battle because she had NO clue. You ask about bipolar... yes dementia will mimic bipolar. The swings can be manic. Her ups were so up they were ridiculous and her downs were bottomless. Hysterical inappropriate laughter and pie in the sky could flip to hysterical fits of suicidal crying. Which Mom I would find was always a mystery. That is exactly why she ended up in the Geriatric Behavioral Med unit for Psych Eval. She has been on Geodon since which is indicated for Bipolar, Schizophrenia, and Manic episodes, Depakote which is indicated for Bipolar and Manic episodes, along with Remeron and Zoloft for her depression. Seroquel which is used widely for treatment of dementia behavioral issues is also indicated for Bipolar and Schizophrenia. So to answer your last question... YES! The presentation of the behavior is treated the very say way as the mental illnesses you described. It is the brain going haywire because of the dementia and reacting in the same way. Yes, it is a symptom.

I do understand that there are things a sitter will not fix. There are situations that only you can grab hold of and control. I am not surprised she dropped the class. I said as much when you said she was taking the class. It is her delusional mind telling her that she can do it but once in it she can't do it... and yes she will hide that failure from you. Then she will fall back into what she knows she can do... own dogs See I can do this... I can find the money and buy a dog. Aren't you proud of me. They truly do not understand the ramifications of what they do.

Fast and Furious is definitely a good analogy of this phase. They can create more chaos than you can fix and seem to be two steps ahead of you doing things you never even thought of. The better you can nail down the money the better off you will be. Yes, she is going to flip out on you from time to time but it's better than throwing the family back into financial difficulties. When she does flip out don't try to explain or convince her. Acknowledge that you understand she is upset, let her fume and fuss, and hope that she goes for a time out in her room. Know that it is the confusion in her mind that is creating the chaos that she throws your way. Know that you have done what you have to do. Then if she goes over the edge... 911. Been there done that... trip through Psych... and out the other side with major medications for her manic episodes... and life is better

Love, deb

 
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Old 10-06-2012, 09:32 PM   #10
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Re: The one single thing I most regret and miss ....

Luau, we had been through the financial stuff with my late FIL as well. Starting from the lawyer and the wills and the checks... As I wrote in the other threads earlier, there were many many episodes and situations. He changed the phone co. 2 or 3 times and I had to catch up to pay the e-bill. Some bills were paid twice. We were not bad as he trusted us to pay for his bills for him. Still there were many episodes when he was very confused.
I cannot tell you how to deal with each episode personally, but you may want to consider being tricky. Don't have to tell her the whole truth about money. You could even promise to "pay" the son the "gift" but you are not in reality. Just say you will and she may just be happy enough. The fact is you won't until he marries and you may not give him that much either... It is up to you to decide how much since it is all your money.
Also you can ask the son to tell her don't worry about the gift and he could tell her he does not accept any gift this year. Any excuses or tricks. She may remember more now but she will forget more later. This is not done by caregivers but you can still be less tired if you try some tricks. It is hard. In the beginning we just let my late FIL go ahead use his debit card and etc. We finally stopped him from using any card. Later he forgot so much that we only had to give him $10 cash or so.
Hang in there...

Hugs,
Nina

Last edited by ninamarc; 10-06-2012 at 09:35 PM.

 
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Old 10-16-2012, 07:34 AM   #11
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Re: The one single thing I most regret and miss ....

I haven't been on this board in awhile...but like to check in periodically to see how you are doing, Luau.

I'm just curious if Lucy had any manic symptoms of behavior prior to this new period that may or may not be early onset Alzheimer's?

How are you and your son holding up? I worry about you guys....

 
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Old 10-16-2012, 10:42 AM   #12
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Re: The one single thing I most regret and miss ....

[QUOTE=teteri66;5073175]I haven't been on this board in awhile...but like to check in periodically to see how you are doing, Luau.

I'm just curious if Lucy had any manic symptoms of behavior prior to this new period that may or may not be early onset Alzheimer's?

How are you and your son holding up? I worry about you guys....[/QUOT

Always nice to "see" you, teteri! And thanks for asking. Lucy has always been prone to mood swings, but the shifts were never quite as rapidly cycling and as drastic as they have been lately. It's like she gets into a funk over a trivia, and then she gets stuck in the vortex getting more disproportioned, more convoluted, and progressively more distorted into a spiral downward. Then just as quickly, she would be out of it. It's like there are two of them, the nice Lucy and her evil twin.

After a couple months of relative serenity, the wheel suddenly fell off the wagon, big time. I thought I should be used to this by now, but it never fails to catch me off guard in totally unexpected ways. Such is life. Her eldest son and I had a long discussion recently. Both agree that medication to address the mood issues are indicated. Getting her to the doctor, though, is a bit more complicated. Unfortunately, in lieu of any bright ideas, we may need to wait for the next precipitating incident to get to the next step of medical/care intervention.

 
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Old 10-16-2012, 01:36 PM   #13
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Re: The one single thing I most regret and miss ....

I guess it is a long struggle for you. I would not think of Lucy like a good one and an evil one. How about a confused Lucy? Lucy was in her own reality and so her logic is different from yours. She is moody so if she doesn't like certain things, she gets angry and etc.
Sounds like someone who drinks and talks nonsense. I am glad her eldest son is with you at this point. Maybe some anti-psychotic drug or anti-depressant will help.

Hugs,
Nina

Last edited by ninamarc; 10-16-2012 at 01:39 PM.

 
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Old 10-16-2012, 01:37 PM   #14
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Re: The one single thing I most regret and miss ....

Yes, the wheels fall off as long as the status quo is maintained. Yes, it surprises us ever time. We know something needs to be done but we just forge ahead waiting for what... we really don't know. I get it, been there done that. What I want to say is that it changes nothing until we change what we do.

We had a discussion somewhere on this board related to those that have cognitive decline being an exaggerated version of what they had been before. So what you said is within parameters of cognitive decline. But you already know this. This have talked to her son and both have concurred that you need to do something. But..... there is always a but. I have expressed those buts before as well.

But fear... We tend to hate change. A new job, a new relationship, a move, a diagnosis, or any other change causes stress due to fear of the unknown. The current normal (as crazy as it might be) is our normal. Fear of what might be can keep us frozen in time and space. Amazingly it is why many that are abused stay in the abusive situation... it is their KNOW normal. They can't change the abuser but they know what they are dealing with in their "normal" and they have handled it this far. If they step out, there is a whole new scary world out there that they don't know if they can handle or not. Besides the abuser won't allow them to change.

Yes, you are sitting in the middle of an abusive situation. I am not surprised the stress has gotten to you (heart attack). You sit there not knowing from moment to moment which Lucy will appear. It become normal. You are thankful for the quiet times but under the surface you are waiting for those wheels to fall off. You don't want to upset the apple cart during those good times. Then the wheels fall off and you deal with the momentary chaos. You can't do much about it when Lucy is in a rage. So you wait... until it quietens down again... you are on the spiral with her. As is your son....

The next crisis may or may not lead to what you need for Lucy and for you. At some point you just have to bite the bullet, upset the apple cart, take the bull by the horns, and get the medical intervention that you need. It's not pleasant, it's not fun, it's is difficult, and it is scary. But only by doing something different can you get past this cycle you are now on.

I remember back then. Mom had been to the doctor and been diagnosed with depression. Take this little blue pill and everything is going to be ok. Everybody told me that. I knew better. I saw the signs and symptoms. To do what needed to be done I not only had to stand up to MOM but also the army she had behind her that said I was not going to get this done. Then she put my Dad in the hospital. To listen to her it was not her doing and she was fine. She balked when I took her to her doctor and he said (as Lucy's did) that Mom was just fine. So do I go back home and just let it all happen again? It took everything in me but I got her to the doctor. Did she want to go... NO ! Did she cooperate... NO ! I made the appointment, at the appointed time I told her to get in the car, and I took her! She assured me I was crazy and I would come out looking like a fool. If so, so be it but she was going. I got my diagnosis. It didn't make life better in the short term because she had a medical diagnosis that has no treatment or cure but it set me on a path, knowing what I was dealing with, that lead to improvement.

I just wish you would not keep waiting... Take that for what it is worth. I am saying this because I have been there. I know the stress you are under. I just want it to be better for all of you. Medication for psychiatric behavioral issues, with a diagnosis, is not going to be easy to come by..... I feel bad to keep pushing but I also know the spiral you can get trapped in. It take something major to know you out of the momentum. I just don't want that to be a major home front crisis.

Love, deb

 
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Old 10-16-2012, 02:11 PM   #15
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Re: The one single thing I most regret and miss ....

Dear Deb, you are so right, of course. This is a huge hump we have to get over. Somehow. The other night, the situation degenerated into hysterics with her saying the no how is she going to let me throw her out into the streets etc etc. It took me completely by surprise, and I ended up spending the night reassuring her that no such thing was going to happen. Sigh.

Last edited by Luau; 10-16-2012 at 04:50 PM.

 
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