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 Introducing Myself 
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Joined: Fri Apr 05, 2013 6:34 pm
Posts: 17
Post Introducing Myself
My husband retired in 2008, when I was 51. Since I still needed benefits I took a job 4 hours a way, and came back on my days off. In retrospect, Joe was already showing signs of memory problems and was having several health issues. Over the next couple of years as his health deteriorated, being diagnosed with PD. I tried to get him to move to where I was working, but he refused (another sign). He started getting PTSD counseling through the VA, and we blamed his mental issues all on that for a while. Everything came to a head when we had a tornado go through our neighborhood on May 18, 2012. I was gone and Joe lived through it by himself. Over the next couple of months, I tried to handle insurance co, repairs, etc from long distance. Joe threatened the insurance adjustor, so I had a lot of smoothing over to do.
To make a long story shorter, I ended up giving up my career, my support system, and my financial independence and moved back to care for Joe. He was finally diagnosed with LBD in September 2012, and things finally started to make sense to me. He lost his license this September and he has been mostly unbearable since.
He is totally self-absorbed and everything is all about him. He knows he doesn't have much time and he is constantly planning fishing and hunting trips and outings. Of course, I have to help him pack, make reservations, make sure he has pills, Depends, and all the various items he has to have, arrange transportation or drive him everywhere. He is so demanding that I am exhausted both physically and mentally, and his friends are starting to shy away as well.
Currently we have his sleeping patterns reasonably under control, and he is still able to walk fairly well. He is still using his guns, although I have them locked up unless he is supervised. Currently my issues are his selfishness, incontinence, memory struggles, and his intense need to be going somewhere all the time... it's like he is afraid to sit still.
We have our finance and legal issues taken care of. I also have the house set up for his disabilities. The VA has been very helpful and I am happy with our doctors.
I am not very patient with Joe, and I'm not sure I am made out to be a caregiver. I have given up everything, and often feel alone in this. My children live a great distance away, and we live out in the country on an acreage that I have to take care of. I feel trapped in this role as a caregiver.


Sat Nov 30, 2013 11:28 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Introducing Myself
Thank you for sharing your feelings with us. It's a nightmare in many ways and no one who hasn't lived with it could possibly understand. Your first priority here should be safety. Joe should probably not be using a firearm and you will need to enlist the aid of his friends to enforce this. There are so many facets to LBD that involve visuospatial perception deficits, illusions, delusions, etc. and Joe could endanger his own safety and that of his friends.

From experience, I know that doctors are of little help in these issues. Oh, they are fine with medication adjustments, etc., but they don't want to deal with problems like driving, using power tools [a big issue with my husband!] and domestic violence. Keep yourself and Joe as safe as possible, even if it means getting rid of firearms, etc.

You will be in my prayers. Although your love for Joe will be tried and tested, be assured that it will prevail ['in sickness and in health']. In some respects, those early stages are hardest because no one else believes there is a problem. You are on your own. Been there!!! Get help however you can. You will be in my prayers.

_________________
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.


Sun Dec 01, 2013 11:56 am
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Joined: Sat Oct 06, 2007 4:28 pm
Posts: 718
Location: LA
Post Re: Introducing Myself
Thank you, Pat, for that answer. I went to bed last night with Churchlady on my mind. My concern for her is great but my words to help did not come. You said it best. I remember those decisions. They are the hardest part of the caregiving I believe. Learn to trust your thoughts and take control.

_________________
"See this lady, she's 85, but she's nice"


Sun Dec 01, 2013 12:44 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3316
Location: Vermont
Post Re: Introducing Myself
Hi - I'm so sorry for what you are going through and the toll it's taken on your lives. It's good that your legal documents are all in place so you aren't having to deal with that as well. Pat has given you some great advice - I'd add my 2 cents and say that I'd not allow to have my LO in that situation have access to any guns at any time any place. With the unpredictability of the disease, you and others are much more at risk than with a healthy person who knows about gun safety, etc.
Can you get someone to come in and relieve you for a while on a regular basis? Caregiving 24/7 under these conditions is not good for your health either, and what will happen when you become ill from the stress? Sending you a big hug and many positive thoughts. 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.


Sun Dec 01, 2013 3:25 pm
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Joined: Fri Apr 05, 2013 6:34 pm
Posts: 17
Post Re: Introducing Myself
I do realize that the guns are a difficult issue and I know how serious things can get. He seems to still be able to use them with respect, though. After this winter, I will guess that they will be locked up for good, even if he doesn't realize it. He hears things, and is paranoid & mistrustful, and has active dreams. I have not detected any halluciations or delusions as of yet. I know there is a first time.....


Sun Dec 01, 2013 9:43 pm
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: Introducing Myself
Dear Church Lady,

I am so sorry for all you are going through. We CGs on this forum have been through many of these issues and understand your frustrations.

To add to what has been said, I agree that the guns are a very serious issue made all the more worrying by the sudden swings and changes of this disease. My suggestion is that you also bear in mind the degree to which your husband could be hiding his symptoms, including but not limited to delusions and hallucinations. This is something I recognized only in hindsight with my mother, and thank goodness she wasn't into power tools or weapons.

In the early stages, I am certain now that she knew something was going wrong and she went to extreme lengths to hide her mistakes, bizarre ideas and so forth. I think part of this arose from generalized paranoia and part of it arose from her specific fears about what would happen to her if she let on what was wrong. (At that point, she lived alone in her home so it was easier for her to hide things.) Also, as CGs we don't always see the meaning of beliefs and comments until later. For instance, my mother started complaining of things being "broken," like the microwave, the vacuum, etc. I would try them out and they worked just fine. It took quite a while to realize that she was simply beginning to lose her ability to do ordinary tasks.

In particular for you, Church Lady, I am concerned that your husband might hide issues and feelings that could put you at risk, and taking precautions, for instance, not allowing him access to his guns without supervision, may not be enough to keep you safe.

Julianne


Mon Dec 02, 2013 4:30 pm
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Joined: Sat May 25, 2013 3:53 pm
Posts: 231
Post Re: Introducing Myself
Welcome to the forum Church Lady! As you can see, you'll get lots of support and feedback on the site. It's a great sounding board and a place to get encouragement. Hang in there!

_________________
Gail, Forum Moderator & daughter of Doris who passed away Dec. 2010 after living with LBD for 7 years.


Wed Dec 04, 2013 1:28 am
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Joined: Fri Apr 05, 2013 6:34 pm
Posts: 17
Post Re: Introducing Myself
Well, I have some good news, sort of... My husband has been in counseling for 3 years for PTSD at the VA and I visited with his counselor last week about this hunting issue and how to handle it. I know he will be extremely angry with me when I lock the guns up, so she is going to help me deal with this at his next session and make it a "requirement" of the VA. She is hoping to sideline the anger her direction instead. I know it is sort of silly, because his anger toward me about this will be pale in comparison to what is coming down the road. Just so you know...there are lots of people out there willing to help if you just seek it. Thank God!


Thu Dec 19, 2013 7:57 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3316
Location: Vermont
Post Re: Introducing Myself
It's not silly and is the sort of thing many of us have had to do about many things when are LOs become stricken with this awful disease. "You gotta do what you gotta do" and if the VA "requires" something that will help all of you, great, you may need to use that for other things down the pike. I'm glad you have someone helping you out with this potentially lethal gun situation. 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.


Thu Dec 19, 2013 9:36 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Introducing Myself
Glad to hear you have an ally in this important issue!

_________________
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.


Thu Dec 19, 2013 10:05 pm
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