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 Instructions for using the forums 
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Joined: Sat May 25, 2013 3:53 pm
Posts: 310
Post Re: Instructions for using the forums
Hi Nelda,
Welcome to the forum! It is all overwhelming at the beginning but at least you've already accomplished one of the hardest parts. That's getting a diagnosis. As Pat and Lynn said, if you read through all the different topics here, you can ask a question or provide your experiences following along on that topic and you'll get the best feedback and information. Where you've posted here is really for instructions on how to use the site.
Hang in there!

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


Mon Nov 18, 2013 6:55 pm
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Joined: Tue Apr 29, 2014 4:25 pm
Posts: 6
Post Re: Instructions for using the forums
Hello. I just found this forum and am eager to gain info./support from others who are caregivers for someone with LBD. There is no support group in my vacinity, that I have been able to locate. My husband was diagnosed with Alzheimer's or "Early Cognitive Decline" in 2010 when he was 58. There were no recommendations for treatment in any way so we didn't put too much emphasis on it. Right after my wonderful father passed away due to a stroke, in the winter of 2012, my husband began spiraling downwards. The progression was very rapid and he was then diagnosed with LBD. Now, a year later, my husband is a very different person. He has just become incontinent and is very depressed because he is watching his body "fall apart". I do not leave him for more than a couple of hours at a time, which I'm sure all of you know about. I'm retired on disability due to serious physical issues from car accidents when I was a child. The most serious was a broken back. I bring this up to set the stage because my physical issues impact me greatly. I have just started with an aid to stay with my husband a few hours a week, which I feel very guilty about but know I need assistance. I moved us to a one level home in a 55+ neighborhood this past winter. I ignorantly assumed the bathrooms were handicap ready but have now discovered they are not. My husband does not want to go through reconstruction. And neither do I. We want to spend our time together enjoying, rather than being stressed out from the mess, noise and big imposition a major rehab. will entail. How do we try to make the little time we have together enjoyable and deal with the issues of life at the same time? When it's all said & done, it's the loving time spent together that means anything at all. Being stressed out is such an unhappy state of being.


Sat May 03, 2014 10:30 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3436
Location: Vermont
Post Re: Instructions for using the forums
Hi Edechant - welcome, and sorry for your need to be here.

If you want more people to read your intro. and respond, you might want to copy it and paste it under "Intro." This "Instructions" part is where the forum administrators put general info. about how to use the forum.

When you have other questions or issues you want to discuss, if you find the most appropriate heading and post there you will be much more likely to get responses because some folks only read or respond in those topic areas.

Are there some stop-gap things you can do in your bathroom, like have bars installed, get some of those shower aids like a stool that the person can sit on and slide into the shower, etc. to help you out now? Stop back as often as you want - there are lots of people here for support and info. 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.


Sat May 03, 2014 12:03 pm
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Joined: Tue Apr 29, 2014 4:25 pm
Posts: 6
Post Re: Instructions for using the forums
Thank you Lynn! I was unsure of how to use the site (I've never been part of a blog or forum). I'll take your advice. As for your suggestions...thanks again. Unfortunately, the door is only 28" wide and there is not a 36" clearance around the toilet nor room for a wheelchair under the sink. All of which I have read are necessary?


Sat May 03, 2014 12:40 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3436
Location: Vermont
Post Re: Instructions for using the forums
I think you are probably right on the measurements. If you do a search on the forum you can find all sorts of useful information, like making handicapped bathrooms, etc. including a lot of specifics you may need now. There's a lot of info. on here about that and just about everything else you can imagine, and then some!

Here's the best piece of advice I can give you as you help your husband navigate this difficult journey - prepare ahead of time as much as you can. With LBD people can have huge declines, literally overnight, so things you thought you didn't need you might need the next day or the next week. Toileting issues, accessible bathrooms, etc. will be a necessity so the sooner you can deal with that the easier your life will be. This will not get better. These issues will only get worse and more difficult to deal with, and since you already have a back issue, you especially need to figure out how to save your own health while helping your LO.

It's a good thing you have help coming in now, and as his mobility, toileting, and transfer issues become more difficult, you will need a helper more often; eventually people become a 2 - 3 person assist, so having 1 already on board will be a great help to you. Do you have friends and/or family who can also help you? You'll need time away to recharge yourself, do errands and simply get away from the day to day stress of being a caregiver. Find a way to take care of yourself, because if you become sick, it's not only bad for you but what will your LO do without you? It's really important to maintain your own state of health. Take care, 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.


Sat May 03, 2014 2:20 pm
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Joined: Tue Apr 29, 2014 4:25 pm
Posts: 6
Post Re: Instructions for using the forums
Thank you LTCVT! That was great advice. We can deal with the truth but the not knowing is so darned difficult. I'll continue to prepare ahead of time. What do you do about balancing the time together w/the daily maintenance & preparing and construction, etc? This is where I have great difficulty. I feel guilty about the consumption of time it takes to make preparations (and hassle dealing with contractors I must hunt for). It really bothers him. He has said that we're "not having any fun" and he really needs a stress free environment. He is so depressed knowing what's happening to him anyway, it's so difficult to then consume our days with the other stuff.
No, I don't have his family near, and no friends have stepped up to the plate even though I've said how great it would be if they could spend some time with him. I live in a metropolitan area where people tend to be very busy with their own lives.
I was surprised that you said that there will be times when we need 2-3 people. That's pretty disturbing. How do people afford it, if it goes on for years? Also, how do you find people to trust? My parents were robbed several times by aids who came in. My mother even had her $20K wedding band stolen.


Sun May 04, 2014 9:44 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3436
Location: Vermont
Post Re: Instructions for using the forums
I'm going to post my responses under your intro. so that others are likely to chime in and give you some of their ideas too. 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 May 04, 2014 9:55 am
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Joined: Tue Apr 29, 2014 4:25 pm
Posts: 6
Post Re: Instructions for using the forums
Is there a link to a page that will explain the website & how to use it? I've never been part of one and find it brings the stupids out of me. The FAQ was not all that helpful.


Sun May 04, 2014 10:49 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3436
Location: Vermont
Post Re: Instructions for using the forums
Just read the topic areas, click on them, see if there is a posting related to your topic and post there. If there isn't one, you can just make a new one. Upper left corner has a box that says "New Posting" and you click on that. That will give you a dialogue box to type your text in. 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 May 04, 2014 11:34 am
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