I have joined the ranks of pea and poop detail....not graciously however. G had a very hard fall (in a parking lot) last week, and has been on pain meds on and off since then. His poor body is a bruised mess and he can not longer get up from anything by himself..nor remember HOW to use his body to get up. Down is easy..just collapse! IT has been a downhill shot since then. I have cleaned up P & P all morning long...he is in pull ups, but takes them down to urinate...all over the floor before reaching the target area. I can see I need to buy a few more pairs of pull on long pants as he has gone thru all of his already and it isn't even noon. I can feel the BP rising within me...knew this was coming, but not quite this soon. Is it correct that Hospice can come at this point to aid with bathing and other odd things? I guess I am confused about what it does and when even after reading the latest discussions on it. Does the PCP contact them or do I? Naturally, it is Saturday and will need to wait until Monday..but then we have a doc appt so..will find out at that time hopefully. Going to be a LONG weekend!
Call Hospice in your area. You can do it yourself, and they will send someone out to do an evaluation. If the eval. determines that he is not yet eligible, they will tell you he can be re-evaluated.
I dread the P&P day. That's my line in the sand. My blood pressure goes sky high even thinking about it.
What happened with us was that our PCP wrote a PRESCRIPTION that read: Evaluate for Hospice Care. When I called Hospice, they came out and one of the questions they asked was had a doctor ordered the evaluation and did I have the Rx for it. I gave them a COPY of the Rx, and it was a good thing. First group denied him and second group approved it..four days later. I always wanted to call back to the first group and tell them how wrong they were, since he died six weeks later.
kathi i think you are going to get fedexed the poop crown for a while now sweetie (grin) i think it was sheltifan or dazed who had it last for a bit?? we need to keep it moving! i had it for YEARS. and at the time i never denied it was where it should be. haha. i cleaned up white rugs shampooed nearly every other day -mopped with bleach incessantly and even had pee duty every few hrs. i know its not easy but its not as bad as we all think before it happens. usually its gradual and you get accustomed little by little as others can attest here. its not fun but it is do-able. sorry you are here. as far as hospice yes they will want a doctor's referral. good luck divvi
Thanks gals..I'm calming down a bit now, but he headed out the door ..with walker..while I was in the bathroom..head em up and move em out! Door lock time also :( BUT now is vino time for me...mellow out!
Oh no, divvi. It wasn't me. I haven't had the poop crown! All of you will certainly hear about it when we reach that stage. I'll be crying "I don't want it....I don't want it....please help me" I haven't drawn a line in the sand like Joan yet, but I can't imagine how I'd be able to deal with that.
hahha!!! boy that was quickly vetoed by Dazed! nobody wants this special connotation added to their name~~ even just referring to it seems to make yall nervous! grin. if its any consolation i havent had poop duty anywhere but where it should be since we are mainly bedbound and unable to move and in depends-. its a sad tradeoff to have them in stage 7 vs having them mobile and cleaning up poop/pee- but its much much easier than doing it all over the place like before. divvi
((Divvi)) I bet you would rather not be in stage 7 and still cleaning poop out of the dog bowl! I know I would...*sigh I haven't been on for awhile, been licking my wounds... how is your dear husband doing? how are YOU doing? Much love ♥
Nikki, thanks for asking. DH is slipping slowly but surely as of late. we just recertified hospice this week for yet another period. they are getting quite picky about re certs since jan. our hospice uses a two part qualification system for 'dementia' which they say is what the standards for medicare are at this point. and none of the hospices want any discrepancies if they are audited so they are going by strict guidelines- they have to be in stage 7c AND have had something major like pneumonia/kidney infection, stroke, coma. severe nutritional issues or bedsores etc etc or some other 'complications' other than just the dementia within the last 12mos. debility- as generalized is getting harder but many are still qualifying under that heading. not sure what the future holds though its getting much harder to qualify.
i know how hard it is to see them enter the last stages and slowly slip away. it has been a very profound and humbling experience to say the least. i though too with all the yrs into the disease it would be easier at this crossroads but no its never easy and seeing their quality of life in dire straits is almost too much to bear at times. DH is mainly bedbound at this point and his mobility is severely impacted now. its gone alot quicker since entering stage 7 now. we plateaued for long long periods in other stages but now its coming at a faster pace. like you though, DH smiles a lot even if his mobile skills are nil.
like so many before us seems more of a waiting period to whats around the corner at any given moment. i am glad your Lynn has rebounded once again and you have more time to spend with him. me too every day is a blessing but each day i see the inevitable is lurking and it brings me back to reality. you can never be prepared enough. hugs to you all. divvi
reality is my shadow, I can not escape it. *sigh, I am sorry this is all happening so fast for you and your dear husband as well. No, we just can't prepare. I have given up even trying. I now spend my energy on getting through each day instead of dwelling on the when.....and getting as many kisses as I can to hold on to. ♥ Keeping you both deep in my heart and thoughts ((hugs)) Nikki
Good to hear an update from you, Divvi and that the smiles are still there. For mine, too, although today he's been yelling and yelling at Andrew. I finally went up to see what was going on, and found that Andrew had been cleaning the tub, the wall above the tub, etc - with L. sitting on the toilet doing nothing. Just yelling to hear himself yell! All in good fun!
JOAN: You wrote: "I dread the P&P day. That's my line in the sand. My blood pressure goes sky high even thinking about it."
I've read you saying this before and I'm just curious since I know it's coming up for me too. If Sid still knows you and his surroundings at that time, could you still place him? Have you thought about it or talked with him about it?
Here's another related question--if a dementia patient is incontinent, has no other concurrent medical conditions, and still knows their spouse, surroundings, etc., will they qualify for nursing home level care (which Medicaid covers if the financial rules are also met) vs. an ALF dementia unit (which is usually private pay)?
Am I missing something here? IF all that is wrong is incontinence, then they should be able to change their Depends like half of America over 70 does now! <grin>
No need for a nursing home unless they can't feed themselves, can't dress themselves, can't walk unaided, AND are incontinent...in some states. Each state has different rules for Medicaid.....And so does LTC.....
We have all found that heavy research has been required and that is why we all post here - in order to help each other find out....
I truly don't know the answer....I just needed to tell a funny.....very little funny is in my life right now....
Very good question, and yes I have thought about it. Talked with him about it? A little, but his reasoning is so off now, all he wants is to stay with me and never be placed. To Mary - plain old incontinence when someone can change themselves is not the issue. The issue is me waking up in a bed that is soaking wet with urine and poop, having to clean him and the sheets every day. The issue is chasing him around the house trying to catch the mess coming out of his pants, and constantly cleaning up the floors, rugs, and furniture. I personally know wives and husbands who have done this, but I don't have the physical or mental stamina for it. I know many of you do, but I don't, and I have decided I'm not going to apologize for my failing in that area anymore.
So back to the question - what am I going to do if this stage happens when he is still functional and aware? Since I have absolutely no funds of any kind anywhere to pay for in home help, and will have to depend entirely on Medicaid, I have no idea what I am going to do.
Joan - as I said - I was trying to be funny ---sorry about that....
My husband has been incontinent for over a year. He has only been in a hospital bed for three weeks. During that year he shared my bed every night and I NEVER woke up in a bed that my side was wet, or dirty. Nor did I have poop cleaning on a daily basis when it did happened. Most of the time if you take them to the bathroom every two hours, they don't even mess themselves during the day. There was never any need to constantly cleaning floors and rugs and furniture. You just take them to the bathroom just like you did your toddler when you were potty training them. I did have to wash the sheets often, about every other day, but that was nothing in the scheme of things. There were only two or three "accidents" in the whole year that were awful, but I lived through them. But, so did my toddlers (have awful accidents). Do I wish that they hadn't happened - YES!!!!!
I know of one of us whose husband peed on anything and everything, but he was an exception, not the rule. And that passed. As does everything. You might not be in the worse case scenario.....Hopefully you won't.
bluedaze--There is a loooong wait in my state for Medicaid waiver--well over 2 years--so unless someone is placed on the list long before they need it, they won't qualify.
marilyn med waiver depends on how much money the state has at that particular time. Many of the social service agencies run out of money early and everybody suffers. Never said life was fair.
My DW’s incontinence is not too much of a problem either. During the day I or her daycare person takes her to the bathroom every two hours (still have to change the depends once or twice during the day) and at night add a super dupper extra absorbent pad along with a large bed pad (saved washing sheets many times). Thankfully, the fecal accidents have been rare.
bluedaze--ain't it the truth! I guess I just want eveyone to realize that in the vast majority of cases, ALF's are private pay. And incontinence alone or even combined with some other deficiencies may not automatically qualify a patient for NH/Medicaid. As Mary said above, the patient must be unable to do multiple ADL's to necessitate that level of care.
Mary writes: "During that year he shared my bed every night and I NEVER woke up in a bed that my side was wet, or dirty. Nor did I have poop cleaning on a daily basis when it did happened. Most of the time if you take them to the bathroom every two hours, they don't even mess themselves during the day. There was never any need to constantly cleaning floors and rugs and furniture."
Mary, I'm glad to hear that and I hope that is the norm. Maybe fear has made me focus more on the posts here which graphically describe a lot more clean up and physical effort required. Maybe Divvi and others going through this can chime in. I don't think I have it in me to do a "poop" search here just now.
Joan, it's not a FAILING on your part. You do so much. You do what you can do and I'm impressed you are going to honor your limits. I saw a shrink the other day in a last ditch effort to get some control over my depression as it is beyond my internists's ability now. He used to be head of an Alzheimer's unit at a medical center and said he had spent a lot of time with caregivers. He told me, "I know it's probably too early for you now, but start thinking about this. I always told the caregivers NOT TO WAIT TOO LONG."
I have had every intention of keeping DH here with me as long as humanly possible. I wonder now decision contributed to my fatalistic outlook on the rest of my life. I'm the one who started the intense thread on not caring about AFTER. In my mind I was going to spend the rest of my life giving all I had to this disease and I think I must have maybe even subconsciously thought it would kill me. But with my depression as it's been I simply didn't care.
Seeing this doctor and a change back to Lexapro which I'd been on a few years ago but which petered out I think has allowed me to focus my thinking a little more clearly. I'm now seeing options where I thought there were none.
I have told DH I will keep him at home as long as I can and I will. But now I'm redefining "as long as I can." One thing I believe is that I couldn't place him as long as he knows me and knows this is his home. I just hope by the time the incontinence and whatever term is used for fecal incontinence occurs that he doesn't know me. Also I'm one of the lucky ones with long term care insurance so I think I'll be able to hire in daily care as I now have no intention of going this alone. I feel like I'm coming out of the darkness into some light!!!!! This is a major change for me. I told the dr. I had pretty much given up my life even though I knew it was the wrong thing to do and that I could barely remember who I had been. Sunday I had some positive experiences with other people without him and for awhile I felt like me again. It's a start. And today I FINALLY visited a couple of ALFs. More on that tomorrow. I'm exhausted.
P.S. Corection: Couldn't place him UNLESS he became verbally and physically abusive as he was the first couple years. I'm NOT living through that again. He is very easy and even amusing these days.
Terry--on the timing of incontinence and inability to recognize you and where he is:
We are just at the very beginning of all of that. There is some "leaking" going on; and he is unable, at times, to recognize me or where he is. I am assuming that both will progress in tandem and worsen. His doctor says he is a textbook case in terms of symptoms, that they are coming the most common pattern. I know each patient is somewhat different, but I wonder if others who are farther along could weigh in on whether all of it seemed to come on at the same time.
At this point, I feel the way you do about keeping my husband at home with me. He has insurance and I have already started bringing in help most days. I am experiencing the same thing--the temper tantrums of the early stage are gone and he is sweet and easy to care for now (thank you Seroquel and acceptance)! I plan on making home modifications later on if his physical needs make that necessary--we will see.
It was never my intention of frightening yall with my stories of poop duty friends. but just the opposite. while yes disgusting sometimes my plight with incontinence serves to show it can be done and even in dire situations. my mantra has always been 'not fun but doable'. and to fortify those statements you can see my DH is still at home even in last stages. we made it thru those times and no it wasnt easy but like many of you i really had no choice as we didnt qualify for medicade either so i opted to keep him home 'as long as i can' and bring inhome help. my stories while not the usual norm were to help you see the lighter side of this part of AD. so many are fearful this will be the line in the sand to place. some can manage thru this part some cant.. whatever you decide you can do is acceptable and worthy of a pat on the back. myself=- it was never a decision breaker. its just poo=p like our kids the first times a bit hard to overcome but something you can get used to and never bat an eye. i know many of you are doing this even as i type but dont put it out there like i did. and i think you can reaffirm it does get easier with time. many of you wont have issues as bad and can find solutions to this like mary has suggested, taking them to the bathroom every few hrs. in my case that didnt work as well as DH wouldnt 'go' on command and chose his time and place.. haha.. and even this as all things AD passes with time and now stage 7 he is bedbound and in depends and its not an issue at all anymore. you bring in help to help bath them and keep them clean and work on your psyche and whatever you need to help YOU get thru the disease intact. i had lots of obstacles to overcome just like all of you but it can be done and i am none the less for it after all this time. on the contrary stronger and more resilient in just about everything i tackle as will you be. remember whether they are placed or remain at home we still must advocate for their needs as well as our own. i think many of our depressive times come from the fact we are overwhelmed mananging two lives instead of one. take one day at a time and live it and try to find something to smile about and hopefully it wont be related to AD. when you are happy your spouse and all around you will feed off that positive energy. its not a given everyday will be good times- every day will have its own challenges but we are a alot stronger than you think and given the opportunity you will show yourself just how diligent you have become and it will reflect in all aspects of your life on a daily basis.do not be discouraged about incontinence, its part of human life and nothing to fear. things may be much easier for you and you are fretting way to early for nothing..most of the worse times comes from not getting our spouses into depends early enough and they start having accidents- take a day at a time and live it and if things happen remember those of us in the storms way are here to hold your hands and offer any advice and our humour we can to help you thru. thankgoodness we have this site to come to for support and friendship. its made it able for many of us to get thu the worse times and turn them into something better. divvi
I agree bluedaze. Like divvi says don't worry about tomorrow until it comes. You may never have the incontinence issue - I didn't. I also had in home help and wouldn't have qualified for Medicade. I did have to tend to my Mom's colostomy a couple of years - which is similar to a depends situation. But, I donned plastic gloves, had a larger than bathroom ceiling fan installed in her bedroom and after a couple of times it was just another thing to do. All of us on this site are "stronger than the average bear". We faced a bad situation and are dealing with it, each in our own way. I also had chosen a NH if I had needed one. Thankfully I didn't but many of you are and I am glad you are recognizing when you need help and get it. Do not feel guilty, do as Mary says "be flexible and go with the flow" - there is life after. I know you worry about that but focus on "Your new life one day". Have dreams and file them away, revisit them daily and keep remembering that "I can do it, because I choose to do it". Blessings Friends. Lois
Divvi, I can't tell you how many times you gave me strength and much needed laughter. My Lynn peed everywhere!! In closets, drawers, sinks, you name it! He was still very mobile in that stage, and though I was his constant shadow, he still managed to leave me a surprise or two every day. The poop patrol was never a huge issue for me as Lynn would use the toilet if directed there every few hours.
I did have to place Lynn, but it was not due to this issue. Though I did find it hilarious when the staff told me how he peed in the trash can, the sink etc!! Oh really, I had no idea LMAO. DUH! I put that on his entrance form and talked about it at great length with them. I also placed Lynn when he still knew me, and still knew this was his home. I don't have the heart to go into it again, but I did post several threads about how hard it was. It will ALWAYS be hard, but he was not safe and I had to love him enough to want what was best for him.
Joan, I think it is fantastic that you know and will honor your limits! Never apologize to anyone! We all do the absolute best we can in an impossible situation. ((hugs))
Divvi, like Nikki, you gave me strength and humor, and I love you for it!
Nikki, you are a sweetheart, and we know you love Lynn and have done what was best for him.
Joan, my earlier comment was meant as humor, not as criticism!!!! You do not owe any of us an apology!!! We all do what we have to do to survive. And each spouse is totally different. I could not have handled my spouse through the driving issue if he had been like your husband - I would have had to place him!! No other spouse had THAT one as bad as you did!!!! I just state what I've done in the hopes of helping others.
We all have things that pull our chains....and we all are on pins and needles...the stress of being a caregiver is monumental. I know I would never have made it this far without Joan's place. Thank you again, Joan!
Divvi, you didn't frighten me. You enlightened me. As does everyone who posts the specifics of dealing with the various symptoms. I don't know now what I can handle and what I can't. I do know I have a very weak or guess I should say strong gag reflex. I gag at my beloved pups' poop if it is even the slightest smelly. That said I could probably get over it like so many other things. I also have a bad back and that's going to be one of the deciding factors I think as I can't clean the bathtub even now because of my back and making the bed often brings on pain unless I'm really cautious and deliberate. Physical clean up after DH may not be possible and until I saw the new dr. the other day I was willing to do it anyway because I lost all concern for my own wellbeing.
certainly our own health needs will be a huge factor on determining if we can continue to care for them at home or not and of course we must take that into careful considerations. believe me nobody gags easier than i did :) its mind over matter... haha.. i do understand. terry i hope you look out for youself first. divvi
As bigtree murphy says, it's just poop. I do think that if you've raised kids or pets, it's not much worse in that intermediate stage than cleaning up after an unhousebroken puppy. And it does pass, as soon as the Depends take over.
Divvi, thanks for expressing it so well!! I can't help but think of how much easier all of it is now than it would have been even 20 years ago.. the super-absorbent pads, the plastic baggies they go into .. I think all of us who were here back in the days of divvi's trials enjoyed so much her tales... my favorite was when he aimed at the flowerpot in the atrium from the balcony overlooking it - divvi, if I don't have it right I apologize but that was the pinnacle of tolerance there - I thought I can never beat that!!
and the only reason you enjoyed those trial days i went thru is due to the fact you all were thinking 'thank GOODNESS its not me!!" grin.. and then thought how lucky you were to not have poo/pee duty!! or if you did it wasnt 'that bad''.... :)
i agree that contending with this disease yrs ago but be horrific and on top of it no computer forums or friends to vent to!
divvi I still remember your husband peeing down the atruim. I didn't know you well when that happened but I couldn't understand how you were surviving with such grace. I think you lovingly called your hubby a hooligan. We bonded as sisters while trying to cope with the antics of our husbands. Sadly some of them are gone now, and the others soon to follow. In a strange way I miss what was called "the dirty dozen". Seems like a million years ago.
Briegull, Divvi, et al--Aside from the assortment of today's incontinence products and our wonderful internet support group, years ago there were none of the psych meds we have now!!!!!!!!!!!!! To me, that has been the biggest helpful development for the caregivers and patients. I think back to my husband's Dad, who had EOAD in the 1950's and 1960's. It sounds to me like all they could do to control behaviors then was give drugs to knock the patient out--a far cry from our situation today. I try to think about that when I get frustrated/upset about the lack of progress in discovering drugs that will actually treat the disease itself.
Marilynn, you are so right. Seroquel/Risperidon makes all the difference and I often think of people who have no knowlegde or access to these meds, now or in the past.