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 What am I doing Wrong? 
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Joined: Mon May 07, 2012 7:42 pm
Posts: 2
Post What am I doing Wrong?
This past weekend we seem to have passed another corner with this terrible disease. My husband was having hallucinations that he was given $50,000 in cash, from a customer(he has not worked in almost three years.) and I stole it. He told his CG today, that he does not like or trust me. We have been married 4 years and together for almost 9. I work full time, but give him my full attention when I am home at night and on the weekends. He is 58 and I am 55.
I don't know what to do. He was the most loving and kind person you could ever meet before he was sick. He sleeps most of the time, and has a problem with communicating. His friends don't call anymore.
I have tried reasoning with him(which I have been told is not the right way to deal with accusations/hallucinations) He looks at me with such hate. I can't bear it., What have I done to make him so unhappy?


Tue Jul 10, 2012 7:57 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: What am I doing Wrong?
Dear Heavenscent,
This in fact is one of the saddest parts of the disease, seems like anything you say or do doesn't change them from their thoughts, it is very common for many of them to be like this and the best thing you can do for you is try and get the support you need by coming here or joinng a support group. I wish I could tell you how to fix it but sadly I can't, it really is a matter of exceptance on your part knowing this is not really the person you married it is the disease that has taken over his brain. He really can't control these thoughts, I always had to make light of the situation, like when he told people I was poisioning him, it became a joke in our house even to this day even did it tonight my Grandson asked what I made for dinner and I said poision ! My husband has been gone for close to 7 yrs !

Stay strong and know there are others living it too !

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Irene Selak


Tue Jul 10, 2012 8:38 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3332
Location: Vermont
Post Re: What am I doing Wrong?
Unfortunately your husband can't control his behaviors with this disease. It is not him saying those awful things, it is the disease talking. I know how difficult it is to be with a LO who is enraged for no reason at all, and when my dad would get furious over really nothing, I would gently tell him that I needed to leave and I'd see him tomorrow. And then I would go. I haven't had a spouse in this situatioin but plenty of people on here have, and it must be terribly difficult to deal with. Somehow people learn to cope in various ways, but trying not to take these things personally and realizing that it is indeed the disease talking is about all you can do sometimes. Redirecting may work some times, but ultimately I think you just have to reframe your thinking about what's happening. It will do you and your LO no good to rationalize, discuss, or argue these non-sensical and hurtful things that are being said. I know it's heartbreaking to deal with and send you all good wishes and hopes that tomorrow will be a more peaceful day for both of you. Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Tue Jul 10, 2012 9:18 pm
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: What am I doing Wrong?
Frank and I were married just shy of 50 years. Our last 8 years were such sad years, filled with accusations of stealing, infidelity, lying, using drugs and the list goes on. There was no way to convince him this was the disease talking. He would sit in the den crying because of the many ways I had deceived him. It hurts, but does pass, with us it just went to another accusation. You are doing the very best you can, don't beat yourself up, as others have said, it's the disease, not your husband. Nine months after Frank has passed, the sad memories are the ones that first come to mind, I'm hoping, in time, the fun, loving memories that we shared for so many years, will rise to the top.

Take care of yourself, this site helped to keep me sane, I was never alone, read and post often.

Fondly,
Gerry

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Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.


Wed Jul 11, 2012 7:41 am
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: What am I doing Wrong?
Hi Heaven,

I know you are also experiencing the unfairness of this happening in your 50s, five years after you married him and nine years after you formed a relationship with him. It is unfair. Incredibly unfair.

My mom was widowed early and remarried at 58 and within 5 years her second husband was gone (cancer). The last 2 years of the marriage were hell for her, as he became demanding and more self-centered. He had 2 daughters from a previous marriage, but he and Mom retired 4 states south of all of us and Mom had only my youngest sister's help (she intentionally got her first teaching job close to them). Regardless of the vows taken when you married, I suspect that you felt you would have a couple of decades of health before you had to face something like this. Mom declared that she would never marry again after being widowed for the second time and it was because she didn't ever want to have to deal with an unpleasant, demanding, husband that she barely knew and ungrateful children.

So I'm looking at this from a different angle - that of being stuck with this so soon after marriage. And that really sucks. Does he have children and are they available to help, maybe give you a break? They've been his family much longer than you have and they do have some responsibility here. Tell me you didn't sign a pre-nup with a "mine to mine, yours to yours" clause that gives anything he brought to the marriage to his children. Mom did and put in 2 years of nursing him and arranged the funeral and was his executor - making sure his daughters got everything - and was left with nothing, as he used her small savings in a failed investment. If you did, talk with a lawyer about how to handle the next stage of your marriage. You are going to be liable for all of your and his debts, even if his assets are distributed elsewhere. And you, too, could end up with nothing and a lot of debts to pay.

There are others here, I think, that this has happened to. Spouses who have taken on caregiving after being married for only a few years. I hope some of them chime in.

Kate

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Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]


Wed Jul 11, 2012 10:35 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: What am I doing Wrong?
Kate,
Wow ! You brought some really good points to the table here
one's I didn't even think of as my marriage ne my one and only.
Thanks !

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Irene Selak


Wed Jul 11, 2012 10:54 am
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Joined: Wed Apr 11, 2012 9:32 pm
Posts: 61
Post Re: What am I doing Wrong?
Heavensent and other "lewy" listeners. Yes it is the disease talking and it is hard as everyone has said, there are times I just go to another room and have a good cry. Letting all the saddness and loss out. But as others have said you have to take care of yourself. I went to our lawyer last week to make sure we had done everything to make it easier and better for me the caregiver....and we had, except for one thing that he recommended. You need to get an "opinion" letter preferably from his neurologist. It is short, and to the point...."To whom it may concern: (name of patient, and date of birth) has been a patient of mine since (date); he was diagnosed with (Parkinsons Disease Dementia of the Lewy Body Variant) which is a degenerative brain disease that has and will continue to get worse. This dementia has made (name) unable to conduct personal, business, financial, and daily living activities. If you have any questions about this please contact my office at (phone). signed by doctor on his letterhead.

You may never need to use it, but it is essential to have that if you want to place them and because of their parinoia they refuse, it can get very tricky because as you know "Lewy" can sound very reasonable sometimes and the burden of proof for their own safety and care is on you.

Take care....Carol

(Carol 67; Norris 78 dx Parkinsons 1999; dx cognitive changes 2009; dx Parkinsons with Lewy Body Variant 2011)

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Carol (67) caring for husband Norris (78) diagnosed PD in 1998, dx cognitive changes 2009, dx PDD/LewyBody variant 2011, still at home.


Wed Jul 11, 2012 12:20 pm
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: What am I doing Wrong?
Thank you, Carol. I often wondered about this. I was lucky in that Mom never questioned anything I did, but this would be invaluable for those caregivers who are dealing with delusions and trust issues. It would probably set things up, too, if you ever needed to go to court for guardianship.

Excellent!

Kate

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Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]


Wed Jul 11, 2012 12:30 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: What am I doing Wrong?
Been there, done that. Early in the disease, when we didn't know my husband was sick, I'd jokingly refer to him as Dr. Jekyll and Mr. Hyde, as he had been a research scientist and I wanted to know what he'd been mixing up in 'the lab'. It only got much worse over the years and it has been, to me, the most heartbreaking part of the disease.

We were always so close, like two peas in a pod, and suddenly, he would turn on me, unprovoked, often thinking I was in impostor [I didn't know, then, about Capgras Syndrome], hallucinating, constantly delusional. Caregiving never felt like a sacrifice to me [I am an RN] and I never minded tending to his needs. What was hard was his lashing out and lack of cooperation. I still love him as much as ever and still do as much caregiving at the SNF every day as possible. But I've mourned the loss of his love and companionship for years.

Yes, I'd like to be more upbeat about this but I cannot. Suffice it to say that you will need some relief from caregiving from time to time. Don't isolate yourself-you need friends and family more than ever. You will survive. God bless and keep you.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Wed Jul 11, 2012 2:47 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: What am I doing Wrong?
Pat M,
I agree for me this was also the hardest part of the disease, the constant accusing and name calling as Jim in his life before Lewy was never like that at all, he was a kind gentle man.

I used to carry a card a little larger than a business card stating that my husband had a neurological disease that caused him to say sometimes un-kind things, I used it a few times while we were out for lunch, he often became impatient or aggitated with having to wait for things!

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Irene Selak


Wed Jul 11, 2012 3:07 pm
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Joined: Fri Nov 05, 2010 11:30 pm
Posts: 317
Location: southern cali
Post Re: What am I doing Wrong?
heaven..
so sorry that lewy body, is causing your family so much pain... i so wish there was an answer.. for everyone!!! my heart goes out to you, as you navigate these rough waters... my hubby, like others is the gentlest of souls, and when he gets angry and starts accusing.. it breaks my heart... mostly for him, as he is not that kind of person.. and he would hate that he is acting that way... i hope you are able to find comfort knowing that you are doing your best and beyond...
please take care...

carol im very interested in your opinion letter.. im curious, what would you use this letter for?? going to finalize papers to put everything in my name friday at the attorneys office.. wondered if should bring this up and get one.. brain is a little foggy today, so maybe im just missing the idea,.. thanks for any information you can offer...

cindi

_________________
sole CG for hubby.1st symptoms, 2000, at 55. Diag with AD at 62, LB at 64.. vietnam vet..100% ptsd disability,sprayed with agent orange, which doubled chances for dementia. ER visit 11-13,released to memory care..


Wed Jul 11, 2012 5:55 pm
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Joined: Wed Apr 11, 2012 9:32 pm
Posts: 61
Post Re: What am I doing Wrong?
Hi all....I was told by the lawyer, heaven forbid if any of these happen...but:

You have to place your loved one in a SNF, or a hospital unit and "lewy" is making them refuse. Then this is one of the things that help you put inplace the authority to do that.

Or if they are taken advantage of by someone, or a caregiver, that convinces them to "sign" a check, or donate funds, then you are protected and have the authority to renege what ever "committment" they have given.

It is just one more thing to have to help you travel through the "care giver" trip ... I think that if you have this, and you have power of attorney and medical power of attorney that you, in most cases, will not have to go to court to take custody.

That is what the lawyer told me....Carol

_________________
Carol (67) caring for husband Norris (78) diagnosed PD in 1998, dx cognitive changes 2009, dx PDD/LewyBody variant 2011, still at home.


Wed Jul 11, 2012 9:15 pm
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Joined: Wed Apr 11, 2012 9:32 pm
Posts: 61
Post Re: What am I doing Wrong?
One more thing that I just remembered....we have most of our investments in trusts, and currently my husband is the trustee of his trust and I am the successor trustee. In order for me to become the successor I have to file papers to change the name of the trustee and to do this I have to submit this letter that declares him unable to conduct his financial/business activities. So I can then utilize the assets in his trust to provide for his care taking if necessary.....So that is another use of this "letter of opinion" Carol

_________________
Carol (67) caring for husband Norris (78) diagnosed PD in 1998, dx cognitive changes 2009, dx PDD/LewyBody variant 2011, still at home.


Wed Jul 11, 2012 9:20 pm
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Joined: Fri Nov 05, 2010 11:30 pm
Posts: 317
Location: southern cali
Post Re: What am I doing Wrong?
thanks carol..

if its ok with you, i will copy your opinion letter and the ideas for it... and take them with me on friday... i wont give any names, just ask her( the attorney) opinion and see if something like that would work in this state...

sounds like it would come in handy in many ways.. thanks so much for sharing..

i hate having to take his name off everything, just to make sure there is a little left, after medical costs etc.... he got this so young( 55) we didnt have long term care yet.. we were just starting to interview companies, when he got the diagnoses...
thanks again~~~

cindi

_________________
sole CG for hubby.1st symptoms, 2000, at 55. Diag with AD at 62, LB at 64.. vietnam vet..100% ptsd disability,sprayed with agent orange, which doubled chances for dementia. ER visit 11-13,released to memory care..


Wed Jul 11, 2012 9:49 pm
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Joined: Wed Apr 11, 2012 9:32 pm
Posts: 61
Post Re: What am I doing Wrong?
Hi...absolutely, you can take the suggestions .... after my lawyer suggested getting an opinion letter, I googled medical opinion letters and got some suggestions of wording, etc. then called my husbands neurologist and (they must be very familiar with the request) she knew what to write.

We don't have long term insurance either, Norris had already been diagnosed with Parkinsons when he was 60 and thus wasn't eligible because of his "prior" condition.....

We have tried to get all of the financial, legal, business things in order before lewy hit with a vengence...which it has....Carol

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Carol (67) caring for husband Norris (78) diagnosed PD in 1998, dx cognitive changes 2009, dx PDD/LewyBody variant 2011, still at home.


Wed Jul 11, 2012 10:25 pm
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