Welcome jackie, You will find just about all you will need to know on this site. Everyone is helpful and non judgemental so you can ask any question you want to ask. Good luck and post when you can.
Welcome, jackie, to a site where you'll find answers and helpful hints gallore. We're at different stages; and you'll find info to help you at every one.
Hi & Welcome Jackie, I am so sorry for your need of this type forum, however, I am sure you will find everyone very helpful, supportive & non-judgmental. Again, Welcome!
welcome Jackie, hoping you find time to read any of the topics which interest you. theres a mass index of wealth accumulated on just about any topic AD - sorry you need the help but so glad you found it. we are here to help you along your journey its not an easy one and it helps to have friends who understand. divvi
Hi Jackie & welcome. This is agreat place to learn things & to VENT! Believe me there are days when you will need to vent & we all understand. Looking forward to seeing your posts! Elaine
Hi, Jackie, So sorry you have need of this site but as you and so many of us do, welcome. You will make many friends here in this journey. Sad as the situation is for all of us, there is so much fellowship that well we area family. And that is thanks to Joang our scout leader, as I call her. Some here are tenderfoot scouts, some here are life scouts ( those dealing with the disease for a long time) and our eagle scouts who have teh * meaning their loved one's journey has finally resulted in peace and wholeness for them.Blessings.
Welcome to my website. You have come to a place of comfort for spouses/partners who are trying to cope with the Alzheimer's/dementia of their husband/wife/partner. The issues we face in dealing with a spouse/partner with this disease are so different from the issues faced by children and grandchildren caregivers. We discuss all of those issues here - loss of intimacy; social contact; conversation; anger; resentment; stress; and pain of living with the stranger that Alzheimer's Disease has put in place of our beloved spouse/partner.
The message boards are only part of this website. Please be sure to log onto the home page - www.thealzheimerspouse.com - and read all of the resources on the left side. I recommend starting with "Newly Diagnosed/New Member" and "Understanding the Dementia Experience". If this applies to your husband, there are 4 sections for EOAD members - two of which focus on the young teens whose parents have EOAD (early onset AD). There is a great section on informative videos, and another excellent resource - Early Onset Dementia - A Practical Guide. You can go to the top of this page, click on "search", and type in EOAD, making sure the "topic" circle is filled in. All of the EOAD discussions will come up - there are about a dozen of them.
Do not miss the "previous blog" section. It is there you will find a huge array of topics with which you can relate. There is a "search" feature on the home page that allows you to look up different topics that may have been explored in a previous blog. Log onto the home page daily for new blogs; news updates; important information.
Thank you all so very much! I'm sorry we have to meet!!! My DH is 70 and has AD. We've know for 4 years. Just recently he has declined more rapidly than before. His eyesight is really getting worse and for the last few days he has been peeing on the floor. This is a first for me. I'm sure it might not be the last, but therein lies one of my problems. The main time he does this is during the night. We sleep in ajoining bedroom and I don't always hear him when he gets up. Definitely don't hear him when he doesn't go to the bathroom but pees on the carpet instead. So, to make a long story shorter, I've been cleaning carpet daily. Undecided if I should put him in Depends (or whatever), if so should I do that only at night since that is the only time he has had problems so far. But the problem is he doesn't pee in his shorts, he pulls them down and then pees on the floor, so if I use the pullup things then he'll probably do the same. I'm at my wits end!! I hate to start something too early, but this cleaning carpet is getting to me! Have any of you had this same experience? I do so hate to put him in "padded pants" until absolutely necessary. I'll try to get by as often as possible. I've read a little but DH has needed my attention most of the morning. He is very tired this morning. I did a UTI test to see if there might be anything going on, but it was negative. I think its just progression. This is such a terrible disease. I just hope that he is not worried about what is going on in his life. He takes Lexapro, Aricept and vitamins. I tried to get the doctor to give Axona a shot but he didn't think it would help. Thanks again for the welcome and thank you Joang for providing this place of refuge for spouses.
I have brought up the Incontinence thread for you. Also, if you type in "incontinence" in the search at the top of the page, a list of those discussions will come up.
Jackie, welcome! You have a problem that has various solutions to try....
First, you can get rubberized bath mats to cover the carpet and toss them in the washer every day. If he is pulling his pants down, putting him in Depends won't help. When you do decide to put him in Depends, do it all the time as if they are new underwear, because it is easier on both of you.
Second, there are clear rubber runners that you can put down on top of the carpet, and they are easy to mop with vinegar and water. I would recommend white ones, because visual perception can be a problem and dark items they see as holes.
Third, from experience I can tell you that leaving a light on doesn't help. They honestly THINK that they are in the bathroom! Would he be willing to "ring a bell" when he gets up, or if he is not the restless type, could you sew a bell on his covers so that it would wake you up? Or a "squeaky" like comes in a dog's toy that he would step on when getting up? (I'm throwing these out off the top of my head - just maybe one might work - who knows!)
We're glad to have you as a new member of the family, though sorry for the reason!!! (((((((((((((((HUGS))))))))))))))
First thing you might want to do, if it's feasible, is get rid of the carpet. That will save you a lot of grief in the long run. Our divvi is an expert on cleaning with bleach, which is much more easily done on a tile or vinyl floor. (-:
I used a baby monitor - and decided if I couldn't hear him getting up, I'd put a bell on his walker or on the bed rail so it would ring when he got up. Never had to do that. I could hear him getting up every time. I wanted to know because he was a fall risk and I wanted to help him get to the bathroom. Baby Monitors are about $25, and well worth the price.
Bluedaze - divvi only bought the ones in her state....there has to be a few in mine! <grin>
Nancy, I priced the TV baby monitors and they run $179 - $279 here... for later on when they are in stage 6 and 7, so that you can see what you are hearing, it may be a better investment.....
but if she just wants hearing for now, then I agree with you! (as usual)
I am certain I didn't pay over $100.00 for them. I didn't buy the "top of the line" pair. They might have been on sale, too. I bought the one with one "monitor" for his bed and one receiver I carried around with me.
I know that there are mats and bed pads with alarms to let you know when your loved one gets out of bed. I'm not sure of the cost but I think the Alzheimer Store and Amazon carry them.
Is their a litmus test that one has to be nice to be a member here? You guys are super!! Thank you! Joang, thanks for that thread. I'll definitely spend time reading that. I've been extremely busy today..more carpet cleaning! I had actually thought about removing the carpet and putting down vinyl, but then I saw the suggestions of runners and mats and might give that a shot first. I did sleep (?) in the same bed with him a couple of nights but the result was neither of us could get settled. He snores *loudly* the first part of the night and if I wait until that is over, it bothers him when I get into bed. I've more or less given up on that idea. The possibility of another bed might help. I'll have to work on these suggestions and see what will be best for this situation. The problem with Depends is exactly what Mary said, he can pull those down so that would defeat the purpost...maybe I could use Duct tape and he couldn't get them off! LOL! (Trying to find something to laugh at!) I'm off to read more, search for things I've wondered about and just enjoy this place. You'll see me as often as I can get here!!
Welcome Jackie! We think alike..I haven't met any group of people anywhere as nice as these here. They have been so helpful. And yes, I had/have a zillion questions also! But these people have been there/done that and I know you will get as much help as I have.
Jackie unfortunately i have been exactly where you are now with the peeing on the floors. everyone here knows my stories under the incontinence thread. i had severe issues with white carpets for a very long time as well. if your DH is ambulatory and can get up i am thinking maybe one of the bedside commodes would help him not have to think he has to get to the bathroom. and you can put less expensive carpets and or plastic runners under this to keep it away from your bedroom carpets. you say his eyesight is failing so this may be causing him to not see his way to the bathroom. also having white plastic garbage cans where you see he is usually going may help give him something to aim at. if he is pulling down his pants then depends wont do much . been there done that and i did have him in depends but he'd pull them down when he had the urge. you may want to try to get up with him a couple times/nite and lead him to the bathroom or the bedside commode. i found trying to avoid his going on his own worked the best during this stage. be aware and try to catch him going- it means being very vigilant. invest in a good steam cleaner as well. i went thru 2 hoover steam cleaners during 10yrs - i hope it doesnt last long but be prepared for lots of cleanups- try having a schedule to take him to bathroom and see if it helps. divvi
Jackie, no litmus test to join Joang's AD scouts..( as I call us hope you don't mind, Joan). One thing that without doubt keeps things humming is the ban on the topics of religion or politics because those topics, as seen on other sites, can get heated..no tinfoil hats needed her..maybe waders but no tinfoil hats..That is a breath of fresh air especially as we are all, at one time or another, very stressed out, confused, hurt, tired, discouraged, you name it..and when one is down others are up and there is no limit to the support we get from our *s( the eagle scouts as I call them..they earned all the badges). There is not a day go by that I don't peek in, often more than once..it is family here...
Jackie--Welcome. I don't have the problem you described with carpets (yet), but I'm sure it's upsetting! My husband cannot "find" the toilet because of agnosia. He can look straight at things and his brain can't "see" them. After a few issues in our large master bath with mistaking the shower, bidet and trash can for the toilet, it was clear with me that he needs assistance locating toilets. I try to cue him by keeping a lamp on in our powder room during waking hours, sometimes I can direct him there without literally walking him in--I just say to look for the light. I guess because the powder room is small, once he's in there he can find the toilet. He doesn't get up during the night, but if he did, I think the commode by the bed (with adequate light to see it) that was suggested above is a good idea. Are you limiting liquids in the evening and having him urinate before he goes to bed? Also, does he go to a urologist regularly and have you spoken to his doctor to see if anything can be done--perhaps prostate issues are causing him to have to go during the night? Supervision is always the best idea, but I understand how getting up in the middle of the night is a bummer.
marilyn, thank you for giving me a word for a condition my DH has. Agnosia. He can still see the toilet (thank goodness) but I can ask him to get something & he can be looking right at it & then I can go over & point directly at it & he STILL can't see it. It drives me crazy, but at least now I know what it is & that it is common inour journey. Thanks!
Elaine--I think agnosia is really a big deal in the scope of things. I found that when it came on, it really limited my husband's abilities to do things for himself. It was helpful to me to think of him as a blind person, and that make it simpler to assist him. (Would one get aggravated with a blind person because they can't see something--of course not.) Got rid of some of the annoyance and frustration on my part having to wait on him hand and foot. For me, understanding the symptoms medically makes it much easier to accept the limitations the disease causes.
Oh marilyn, thank you so much for giving me that comparison. I get so frustrated in those circomstances, but now if I think of him as "blind" MAYBE I will have more compassion for him. I guess with me it's that I haven't fully accepted his limitations even though I KNOW this is really happening.
Well, Elaine, to me it is a form of blindness. It's just that the defective body part is the brain, not the eyes. Would be nice if the doctors would tell us about this, wouldn't it? I imagine that the family of someone who has no sight is given tips on how to help them get along in the sighted world; we should be too.
Marilyn, I also want to thank you for posting what our dh's inability to "see" is called. It really helps me to see things better now. Even tho I knew about the agnosia I did not relate it to alzheimer's. Some times it is the caregiver that is the blind one........anyway, thanks for the infor.....
Jackie, welcome and so sorry to meet you under these conditions. Hopefully you will find this site and the people here the blessing they are. keep your spirits hi and things will go as they go, but we get thru it with the help of our faith, this site and each other. God Bless and please post more.
Elaine--we are in Owings Mills. I was born in Balto., but don't think I've ever been in your part of the state! You and I are the same age, too. Do you ever get to these parts?
Jackie, another welcome, this time from Europe (Holland). I hadn't checked in for a couple days, but am glad to see another active member of the boards. I don't have to tell you -- because you've already discovered -- that you've come to the very best place for AD spouses. For many of us, it has made a huge difference.
Jackie...Welcome again. This is a life saver for caregivers. I believe in reply to several statements above...It is not that we are un-informed....it is just sometimes hard to recognize the symptons we read about. I think I expected a "FLASHING SIGN" saying this behavior is called Shadowing...or Agnosia. After starting here on Joan's page, it helped me not only recognizw symptons (which makes it easier to cope) as well as learn from others about dealing with it.
You have landed in a "soft spot" for caregivers. We are glad to have you.
My husband Lynn peed everywhere and anywhere!! For years I cleaned and cleaned. I couldn't get him in depends period. Like your husband he would have just pulled them down. When he got worse I tried several times to get him in them but he was still to "with it" and fought me tooth and nail. So a black light and a bottle of vinegar became my constant companions.
Many have offered a lot of great advice! I did find that the bedside commode helped at night. I had it well lit and I made a huge sign that said TOILET. It worked for a long time. Best of luck! :D
Welcome Jackie, this is the place to be because you will get all the help you need and support...so much support...I could not and would not want to do this without it. Come back as often as you can.
Marilyn...I have had to use the blind way of looking at it too. In certain contexts, it's an easy quick way to explain the problems he's having to shuttle drivers or such. "He has a visual impairment."
Jackie ... just to echo what others have said, welcome to the single best site on the internet for people like us ... people just trying to cope with each day as best we can as we watch our spouses slowly but surely sliding further and further away from us. Joan is simply one amazing human being and this site provides us all with a virtual support group that helps to keep us sane. If you're looking for comfort, support, information ... you have come to the right place! Sorry that you have the need to join us ... but welcome, Jackie!
Thank you all so much! What a welcome! I appreciate every post and as so many have said..I'm sorry we have to meet this way, but I think the support will be a help to all of us. Thank you and thank you JOAN for providing this place.
Welcome Jackie. I don't get to check in here as much now but will echo everyone's welcome and assure you that I've certainly found no better 'place' for help and overall wisdom about the things we experience everyday in OZ (I've felt like we've been in OZ for eons).