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 56 Yr old Husband - LBD diagnosis 
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Joined: Mon Dec 05, 2011 8:53 pm
Posts: 4
Location: Southeast USA
Post 56 Yr old Husband - LBD diagnosis
Hello, my 56 yr old husband was diagnosed with LBD in August 2011. Looking back I think he had symptoms for a longer while. I actually thought it was side effects to his blood pressure meds. I've only known him for two years - we married 6 months ago before all this came to a climax. He was a computer programmer and completely forgot how to do his job. After a 2-week major and serious hospital stay in November 2011, he's gotten so much worse. He doesn't remember being in the hospital. He asks the same question over and over again until it gets out of his system. The anxiety especially is very bad. Any help with that would be appreciated. He's frightened, anxious, and worried. My family has been helping with keeping him during the day while I work, but the anxiety might be too much for them to handle. The neurologist we were seeing just gave me pills (Namenda and Aricept) and said we could come back in about 6 months if needed. I don't think he fits in with a daycare where the people seem to be completely out of it. My husband is physically ok (for the most part) and his mind is not completely gone. But he doesn't remember anything and he has completely lost interest in doing anything at all. He follows me around like a shadow. I almost lost my mind this morning. He's with a family member now so I could make phone calls about sitters and get this post going to ask for help. Thanks for listening.
Lyn


Mon Dec 26, 2011 4:50 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3364
Location: Vermont
Post Re: 56 Yr old Husband - LBD diagnosis
Welcome to the forum and I 'm so sorry you need to be here. I'd suggest you do lots of reading, both on this forum and books about LBD. There is a lot of info. on this forum from thousands of caregivers who have "been there, done that" or who are still in the trenches caring for the LOs (loved ones) with LBD and/or other dementia diseases. There's a lot of support here too, so stop back often.
You can do searches on key words on here too, so if there is something of specific interest, you might want to search for those postings first. Good luck to you, Lynn

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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.


Mon Dec 26, 2011 5:11 pm
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: 56 Yr old Husband - LBD diagnosis
Lyn, Your husband is so young and what a challenge for a new marriage. The meds may help, it does seem to take time to get the correct combination of meds. It can be a very bumpy road, I don't mean to be negative, but as Lynn said you need to educate yourself and read previous post. You also need to take care of yourself!!!!
Gerry

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


Mon Dec 26, 2011 5:53 pm
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Joined: Fri Nov 05, 2010 11:30 pm
Posts: 317
Location: southern cali
Post Re: 56 Yr old Husband - LBD diagnosis
lyn.. you've come to the right place.. sorry for what you are both going thru.. wish i had some answers for you... hopefully the meds will start to kick in soon and you will notice a difference...

your explanation of your hubby sounds like mine... i have tried the day care route and he absolutely didnt fit in right now.. im making phone calls now, to folks who will come out and take him fishing or to play pool or something to give us both a break.. and he will get some socialization and hopefully so will i...

looks like its pretty expensive,, but maybe a couple hours a day for twice a week.. till i can figure soemthing else out that he might enjoy...

good luck.. dont forget to take care of you, too..

cindi

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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..


Mon Dec 26, 2011 6:29 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: 56 Yr old Husband - LBD diagnosis
Welcome to the forum that none of us wishes we had to join. Lots of good information and support here. The anxiety is a BIG issue that has loomed large in our situation so I understand how frustrating it can be trying to get help. Do NOT just wait 6 months to talk to his neuro about the difficulties he is having. Keep nagging until something works. I use a fax to 'nag' because it gives them the opportunity to read it at a convenient time and go over his chart.

You might want to read Life in the Balance by Dr. Thomas Graboys who married his second wife [he was widowed] after he already had LBD and didn't tell her, for which he felt remorse. He discusses very candidly their struggles with this terrible disease and how they grew to accept the situation.

Extending hugs over cyberspace to you! God bless you.

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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.


Mon Dec 26, 2011 7:00 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: 56 Yr old Husband - LBD diagnosis
Dementia of any type at any age is awful, awful, awful. But somehow the early onset cases seem particularly sad. I am so sorry you are facing this, and so early in your marriage, too. The one positive is your own relative youth. May your energy and stamina and love help you through this journey.

We have a couple of posters here who have early onset dementia themselves, and their insights are very valuable.

Are those two meds helping at all? I agree with Mockturtle -- you can't just start some pills and come back in 6 months! And I question the widsom of starting two pills at once. I hate to add to your stress and list of things to do, but perhaps you should consider finding a doctor who specializes in dementia care and who is knowledgeable about LBD. Where do you live?

Hang in there! Come here often. Even if you don't find an answer to a particular problem, it can help to know that others face these issues, too.

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Mon Dec 26, 2011 8:01 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: 56 Yr old Husband - LBD diagnosis
Lyn,

I'd suggest searching on lbda.org for Dr. Brad Boeve's 2004 "Continuum" paper. He provides suggested treatments for many LBD symptoms, including anxiety. Several in our local support group find anxiety to be the worst symptom they are dealing with.

Can you join a local Alzheimer's caregiver support group? Is there an early-onset AD (patient) support group that your husband can join? You can find the chapter nearest you on alz.org.

Robin


Tue Dec 27, 2011 3:17 am
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Joined: Mon Dec 05, 2011 8:53 pm
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Location: Southeast USA
Post Re: 56 Yr old Husband - LBD diagnosis
Thanks so much for all the replies!
Lyn

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Lyn


Tue Dec 27, 2011 1:27 pm
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Joined: Wed Mar 02, 2011 1:11 pm
Posts: 27
Location: Michigan
Post Re: 56 Yr old Husband - LBD diagnosis
Lyn, I too am sorry you find yourself in this situation, especially as a newlywed. In the early years of my husband's illness I was able to work, but made sure a lunch was in the fridge and he had access to a phone. Later on I had to stay home with him because he required more constant care. He's 60 now, and I had to put him into a nursing home a couple of months ago because he could barely move and I just couldn't take care of him anymore. I never had to deal with anxiety or hostility, thank goodness. Like the others said, there's empowerment in educating yourself, but you're on a hard, lonely journey. Cry when you need it, and don't hesitate to ask others for help. God bless you.

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Wife of a 60-year-old LBD patient who was diagnosed in 2003.


Wed Dec 28, 2011 2:34 pm
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Joined: Wed Dec 28, 2011 2:30 pm
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Post Re: 56 Yr old Husband - LBD diagnosis
Hi Lyn,
Im very sad to hear about your husband's diagnosis.
My father was 57 when we got the diagnosis- and for us, too, it seems that he has been struggling with it for a while.
I'm new to this forum: is there a specific forum for people who are struggling to give care to those who were diagnosed relatively young (around 60)? There are unique challenges that come with this situation. The idea of providing long-term care for many years is really terrifying.
Thanks,
Meg


Wed Dec 28, 2011 6:38 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: 56 Yr old Husband - LBD diagnosis
Meg,
There's no sub-forum for young onset LBD caregivers. There are a few of you around so hopefully you can find each other! (There is a sub-forum for those with early LBD.)
Robin


Wed Dec 28, 2011 7:53 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: 56 Yr old Husband - LBD diagnosis
To both Lymn and Meg, welcome to the LBDA forums, I hope you can find it a place for support and information.

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Irene Selak


Thu Dec 29, 2011 10:59 pm
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Post Re: 56 Yr old Husband - LBD diagnosis
Hi Lyn -

I started caring for my mother nearly 2 years ago now, but we just got the LBD diagnosis this past summer. My mother's anxiety seems to run everything a lot of the time and as a result, she got herself addicted to various drugs from the benzo family of drugs (and when you take too many of these drugs, you get the symptoms that you are taking them to treat). Anyway - things for us did not start to improve until we got the right doctors. Her first psychiatrist thought my mother's problems were only the anxiety and drug addiction, but once we got her off the drugs - it was clear that she had dementia. The first neurologist was indifferent and didn't see her very often. It took a psychotic break and hospitalization before I got a good neurologist (and now I have her at the Indiana University Medical Center which has dementia specialists - perhaps check out your local research hospital for folks who specialize in dementia). I found that once we got a good neurologist who understood the dementia and anxiety issues, things improved a lot for us. Once we got a psychiatrist who didn't mind being the second person on the chain of doctors (my mother is also bi-polar), things improved a lot for us. For awhile we had a great general practitioner who saw her role in my mother's treatment as treating non dementia and non psychiatric related conditions as well as checking the various medications that my mother was on. This also worked well, but the physician moved and now my mother has a less aware GP. For us, getting the right doctors have been a critical first step. I think you should seriously re-think this neurologist. It just doesn't sound right to me (although, at this point - now that my mother is more stable and her diagnosis more definite - her neurology appointments are 3 months a part). Your husband is young and hopefully the right medical team will be able to help him. Keep us posted as to how things go.

Liz


Mon Jan 02, 2012 2:10 pm
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Joined: Sun Oct 17, 2010 2:06 am
Posts: 63
Post Re: 56 Yr old Husband - LBD diagnosis
Hello Lyn. I'm truly sorry you have had to join us in this situation. You're getting some good advice from the other responses, but I do want to throw in my own two cents. Firstly, you need a neurologist experienced in lbd. Getting meds right is terribly tricky, and requires some work and adjustment. Secondly, my hb's neurologist will not start two meds at once. There's no way of knowing what kind of effect they're having if you do. Namenda, particularly, is not always good for lbd. My husband started it and during the four days he took it he had two seizures, a fainting spell, and snuck my car keys from my purse early one morning and drove to the gas station. His behavior there was so confused they called me and I was able to come get him. Needless to say, we discontinued namenda.
The actions you describe are extremely familiar to me, every single one. His paranoia was extreme. I can't go to the bathroom without his following me. My neuro prescribed zyprexa for the psychotic symptoms, and at least my hb no longer sees faces at the window.
We're not just caregivers. We are on the front lines of the battle to give our LO's dignity, keep them comfortable, and learn the particular sways the disease shows itself in our particular person.
Good luck!


Mon Jan 02, 2012 3:13 pm
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Joined: Mon Dec 05, 2011 8:53 pm
Posts: 4
Location: Southeast USA
Post Re: 56 Yr old Husband - LBD diagnosis
Thanks for all the posts! This is a long overdue response to all your posts, but I've been so stressed out, fatigued, tired, and scared. I can't use the computer at home without my husband sitting next to me. I don't want to let him know all that I'm feeling. I decided to use the computer at work once my day ended.

I took him off the Namenda and Aricept. David got so much better after that! He's not in a bad way but he does get confused and can't follow my instructions. I really don't know where he is in this disease. The PET scan shows dementia but the new neurologist doesn't think it LBD. We have an appointment this week. I hope he can answer some questions for me.

Thanks again for all of your posts!
Lyn

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Lyn


Mon May 21, 2012 5:06 pm
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