I will try to keep this as short as possible... Then answer whatever is asked of me thereafter.
Long story short, my stepfathers history, summorized(he's the one who would need placement);
1. 30 Years of Type 2 Diabetes that's resulted in 'Extreme' Diabetic Neuropathy in the legs/Muscle Waste
2. Severe Spinal Stenosis that has resulted in doubling the trouble with use of legs/DRAMATICALLY increasing the risk of falls/dramatically increasing frequency of urination, up to 25 times in a 24 hour period--12 times during the night, will not wear a catheter.. This is a HUGE burden on my mother and I(which is really 1.5 people caring for his needs, as my mother is 79 and can't help him up, etc.)
3. Open heart w/Aortic Valve Replacement and triple bypass in Nov., 2011./He was blacking out, given til Christmas, 2011, to live if he didn't do the surgery.
4. Moderately onset Dementia(believe it's vascular, comes and goes, but most times is fairly bad)
5. Can barely communicate any longer(knows what he wants to say at times, but it comes out as, "I, I, I, I, I, I," for around 5 minutes, often doesn't come to an answer without lots of fishing/providing 'possibles' for him and is often something like "I, I, I, I"-1 MINUTE REPETITION-"need...10 dollars for a haircut"... usually he's trying to exclaim how painful his legs are or "i want to go to bed" or "I want to go to the doctor so he can fix my legs", Etc.
6. He's often VERY mean to me and especially to my mother, 79 and also in 'fairly' risky health as well, due to having had a larger stroke and recovered ok, but A-fib and being overweight, etc., as well. He accuses her of sleeping with me and my nephew or whomever she is going out to see/whomever gives her a hug or basically pulls her away from the couch/by his side.
I am not overstating when I say that this man is and always has been a HUGE 'narcissist', very self centered and often VERY mean/verbally abusive.
Bottom line, I can't manage this care any longer between the two of us... And we are wanting the "Medical" system to get involved.(As I understand it, Medicare will use up it's 90Days and then Medical will kick in, under VERY specific conditions)..... As I said, and should have restated... "He needs to be placed in a 24 hour care facility." His children are seemingly only interested in the Will and such, and while his son lives 4 miles away, he's been over here for a total of 3 hours in 6 visits, since December, 2011, when my stepfather returned home.
My stepfather's PC Physician, Neurologist and new, the other day visit from a Psychologist, all feel that he is BEYOND ready for placement(Two of them saying, "Not sure why it would be impossible to catigorize him as 'medically needing placement', Mental/Physical and risk of injury being the calls"...). When I told them I've been doing this, either directly or on call/live in, for 8 months, 18 hours a day(I have to stay up til 5;30AM or so when My mother wakes to help him to the toilet, otherwise tie him down which would be even more unmanageable), 7 days a week... They all have dropped their jaws and said, "Mark,.....this is way too much, you're going to end up very ill if you continue this way".... I AGREE, but my problem is not only myself... I am VERY concerned for my mother..... This is QUICKLY wearing her down to the point of total exhaustion and to where she's passing out throughout the day on the couch, just overwhelmed, etc. I can't allow it to go on... And, to my point.........
I DO NOT think, from what I've read/been told by others who've been in my situation.... that Medicare or Medical are going to want to provide "in home care"...... Even if they did, it would likely be a few hours a week that we would share the burden of, obviously, under the laws/policies. A few hours a week is not enough....I NEED to get back to 'living my life', and to be honest, can't take any more, emotionally or physically. I'm a Certified Executive Chef, and over the last couple years, I've sacrificed everything, including my career and most of my savings... And in reality, I'm now in Debt! In my understanding, we have to be down to 3K dollars in my mother and husbands accounts? They have annuities, but not enough that it would last past maybe a year or two of in home care co-payment. Not forgetting to mention, they would also be attaching ALL of his Social Security... That would leave only the interest on their annuities to live off of for my mother, paying all the house bills/property taxes, etc.
We were told that there are ways to legally prevent them from touching things like annuities, and the house is under a reverse mortgage with NOTHING left of the 'credit line'.... We are meeting with the 'finacial guru's' in our life, over the next week, whom deal with elderly finance, etc.... But we really don't have anyone to represent/guide us through the 'placement requirements', if we can even get them funded by Medical... So I would just REALLY DROP TO MY KNEES in gratitude for any advice on .................
"The best path to ensure that we can get him placed in assisted living".
PS> He is 85 Years old....... (Two of his doctors said, "Why did they encourage him to do this surgery? He is NOT going to get anything but worse in most every other physical realm of his being!"....) ........
You have a terrible situation and I am somewhat at a loss to provide advice. Home care aides will not take abuse and will quit. You will not get part-time care under medicare if he curses or abuses them in any way. This is the case with all agencies. In a nursing facility they will use a "chemical straitjacket" which will be a drug that will sedate him. Square one is to get legal advice and to get a guardianship arranged. There are various types of guardianships. I have been involved in several guardianship proceedings. You can do this yourself and it is not very expensive. It is going to be difficult to find a nursing home, let alone a nursing home nearby to accept him. Let me think on this.
Thanks, SO MUCH, for taking the time to advise me, .... joyful news or not, haha.
Honestly? He is really not abusive to anyone but my mother and me. When people show up, strangers? 95% of the time, it's "OH Hiiiiiii!", IF he's able to speak that day. On occasions, my mother will have Bible Studies or a friend will visit for a 'catch up' couple hours.... And as i said, SOME TIMES, he will start yelling, "You're my wife! You, you, you... Wife!"... Then tries to get up and walk to the room, which he really can't. He takes 5 minutes to get up to totally bent over standing position... THEN, to get to the end of the table, another 5 minutes.. By that time, he's COMPLETELY exhausted. SOME days, he can move SLIGHTLY better than this... But to be totally honest, those days are worse... he falls FAR more when he thinks he's 'getting better'... Which really is just a pause in the Spinal Stenosis inflammation or the Diabetic Neuropathy is not quite as bad. The swatting at ME is the only real time he's aggressive.. physically. BUT, he DOES in fact yell at her, as I said... Not constantly, just enough to be VERY disconcerting.
When in a recovery/resting/nursing home after Open Heart Surgery.... they basically had to tie him down 90% of the time, unless we were there. That rope thing. He would NEVER stop, whenever awake, trying to get it off or have his bed neighbor to do so for him. He wasn't physically violent toward them, and I'm pretty sure the report on him from there would be moderately positive... Aside from the constant attempts to get out of restraints(who wouldn't, right?)..... Also remember, that at this time, he was actually walking with a walker(just months ago), almost solo, for around 200Feet or so..... Since being home, he's severely declined.... And as a matter of fact, they noticed it before he was leaving... "Moments of REALLY bad stability, etc."... Then, in Physical Therapy... I was told, "I just can't justify another 5 visits... it's so hard on him, one. He doesn't want to be here, two. And, well, he's gotten nothing but worse over the last 8 weeks. If you want to continue, we can... BUT, ... I PERSONALLY don't think it's worth it. He has NO recall... I have to tell him everything over and over and even then, he wont follow commands at all, pretty much... or very rarely at least." ....... now all the doctors are basically telling me to "Mark, it's time to keep him comfortable".... WOW, is that ever easy to say, right? :(
In the United States, to get medicare to pay for full-time nursing home care he will have to be down to under $1,500. They will then take his social security, and he will be permitted $50 cash a month, It sounds like you have been doing a great job. There are assisted living facilities, but he won't be able to get in without both a medical clearance and what they call a mobility clearance. There are electric recliners available with a certificate of necessity that will push him into a standing position. They cost about $1,400, but the reimbursement is only $600, If he is a veteran, the VA social workers might be able to suggest some options. You might want to try some Ambien. It is a curious drug. It is prescribed to help people go to sleep, but for some reason it helps some people with dementia and memory loss.
First off, PLEASE FORGIVE ME FOR THIS MANIC, LONGGGG, UPCOMING MESSAGE? :) lol..... Secondly, but more importantly, ....THANKS, AGAIN, for just honestly and sympathetically answering me, Caregiver222:)
Well, ...... we(the entire family and Living Trust Agent and some Financial Family People) all met, with my mother present, ....and I gotta tell ya... THEY WERE WORRIED instantly, just SEEING my mother. She was nodding out, right there, at 7:30, eyes bloodshot beyond the norm by FAR... etc. Then hearing the full story, ...these people/family ALL quickly jumped in and said, "Mom,.......THIS IS NOT right to continue to do this to yourself, FIRST OF ALL... But VERY important, as well, is the fact that you just can't ask your son to care for his stepfather to this extent any longer... I DO THIS type finance for families... And it tears them apart all the time.. But WORSE, it KILLS THEM, high percentage... and I have to be honest.... You look VERY unhealthy/exhausted and overwhelmed... And your son is half your age and doesn't look much better. He CAN NOT do this another day, 18 hours a day either helping or on call, after 9 months straight! We have to find a solution, RIGHT NOW, or at least start the process... HE HAS TO be placed somewhere, ASAP!"....
.....Of course, as you know, cargiver222.... that's always easy to say... But with all these minds at work, ... and some of them working in this field to one extent... we might have figured some things out(At least an A, B and C avenue map out to try and get the feelers out there RIGHT AWAY.
A. (Which seemed to be the most likely path that everyone wants to take... )>>> Take him to the ER when he's wanting to be checked/in a panic about the pain and inability to walk, etc..... Tell them the truth, .."He's falling ALL THE TIME, and you can't turn your back on him for a second. My mother is TOTALLY incapable of lifting him off the floor, and to be honest, can't really be entrusted with the 'full duties' of caring for him without someone there..... And I'm spent. He's a danger to himself, claims he's dying and is VERY manic with some demented behavior. He needs to be evaluated,... and his Primary Care Physician, Neurologist and the Psychologist who recently visited feel that he is desperately in need of 24 Hour skilled care."..... We might have to go to the Neurologist first, to get STATEMENTS, LITERALLY, in hand..... But they can all visually observe him for 5 minutes and see all they need to know in regards to at least one of the points... which is; HE IS NOT ABLE TO CARE FOR HIMSELF/NOT ABLE TO CHECK HIS BLOOD SUGAR ANYMORE, WHICH HE DID FOR 30 YEARS/NOT ABLE TO FIGURE OUT HOW TO GET 6 INCHES TO THE BEDSIDE/COUCH-SIDE TOILET WITHOUT LOTS OF HELP.... which is actually around 20-30 times a day on average!
He's been repeating himself.... Like saying, "I, I, I, I, I, (around 20 times), I need 10 dollars"..... We ask, "For what?", ..... He answers, "I, I, I, I, I,, need 10 Dollars", ... finally getting out of him, that "he needs 10 dollars for a haircut".... And when we do get that out, he repeated it for about an hour. So I finally spoke very clearly to him and said, "Hey, I hear ya... You want 10$ for a haircut at that salon we go to? Don't worry, I'll cut your hair again".... He kept at me on the "10 dollars, 10 dollars" for a while.... But eventually he gave up and said, "Ok, you fix?".... I said, "YEP", and I did, that day, which is important... Cuz when it comes back, a controlling person like him is going to be MORE AND MORE INSISTENT on it until you either meet their request or come to a compromise(I AM NOT about to take him to a Salon any more... He's VERY difficult to manage and get to the car and get out and get in the barber chair and ..... My back is ALREADY INJURED with 4 Herniated Discs that I manage to keep under check... but WOW, this is pushing it. Taking him to the movies? SAME THING... NEVER again... He's wanting to get up and pee after 30 minutes and will NOT stop trying to get up, etc.... This REALLY upsets my mom....But she just wont accept that he's both a. Dimented and (b.) often very much passive aggressive.
Last night, I went in to his room for the 5th time, around 3:30 AM, because I KNEW I'd heard something.... He had gotten up and somewhat half crawled around the bed, turned on the light on the way and when i came in, was looking for something... He couldn't articulate it... and at 330am... I interrupted him and quietly but firmly said, "Sir, ... I am not going to look for something at 330am... and this is VERY dangerous... You can NOT get up and walk around the room like this... You can hardly stand, and when I got here, you were already going down to one knee, on the opposite side of the bed.... If you get out of bed again, I and fall, I will have to call 911 to come and pick you up... They will probably want to take you to the hospital for a few days to check you out, because you're not listening to basic safety boundaries, at ALL!".... He got up RIGHT THEN AND THERE and was trying to continue his search... So I pulled him gently back into bed, told him, "SIR? I wasn't kidding.... You will not stay here in your own room through the night if you can not stay in bed and try to get some sleep. I WILL take you to the Hospital, NEXT TIME that you get up beyond using the toilet."... He stopped his adventures.. BUT, this morning, was right back at searching for something,... by now he can't explain what it is(speech is so bad)....
The other night, he quietly crept out of bed and 3 times, from 12am to 4:30am wound up on the floor... By the time i got there, he had urinated all over the floor and was laying in in... I cleaned him up each time, got him into bed, and told him, "Just call me"... "Ok" he said,.... each time He wound up on the floor. The 3rd time, I said, "This is REALLY scary, Sir... you need to stay in bed", while I was replacing the pee pads on the floor for the 3rd time, I feel something on my head... I look up and his foot is coming on down on me... I said, "WHAT are you DOING?".... "I, I, I, I, I, I,.............got to peepee"...... (Just that day, when I turned my back to use the restroom for 2 minutes, I came back and he was over the porta-potty SIDEWAYS, ... trying to get his diaper off his foot... peeing on the floor and seat top... YES, with his rump facing one handle and his crotch facing the other handle... THAT TYPE OF STANCE!)
.......Honestly, Caregiver222? >>> I think I am the type of person that's ALWAYS tried to 'SAVE' people(including my mom, I suppose, in a sense, pertaining to the risk all this puts her at)... even past when I should... I've grown over the years to the point that I HAVE GREAT EASE in setting my boundaries and I will NOT enable people... BUT, I wasn't sure until that very moment, 100%, that NOT ONLY am I DONE with this... I realized, as my heart raced to around 140bpm..... "I'D BETTER NOT do this another day without having SOME TYPE OF HOPE for relief".... I realize I AM NOT "helping" my mother, any longer, by staying here and putting my own health at risk... Nor by 'lengthening' his stay here, and subsequently furthering the ''signs of wear" upon here via trying to fill in the gap that I can't fulfill(I can't do this 24 hours a day, 9 months straight, obviously... So for 6 hours or so.. she's on her own, and it's KILLING HER, quickly! Not forg. to mention... 'When HE KNOWS I'm sleeping or gone... he IMMEDIATELY turns into 'GO-GO-JONNY!'>> CONSTANTLY trying to get up, knowing that she can't pick him up if he falls, etc., etc., etc.)
Therein; It seems that my only choice is to MAKE SOMETHING HAPPEN that will allow her to not have to live on food stamps and tiny bits of aid, barely able to pay the bills(they'll take all his Social Security and Pension.... Which will DRAMATICALLY reduce her 'comforts', and she'd have to get rid of Cable TV/HER FAVORITE THING, and internet, her other things, and basically begin to really live hand to mouth)... SO, as I said, we've figured out, for the most part, that WHAT LITTLE MONEY she/they do have saved?.... IT CAN NOT be touched. Just have some more fine tuning to do.. Then offer the opportunity to his children to take over at least 66%(otherwise I WILL leave) and they'd have to do it for NO PAY(or pay out of pocket for care), period.... If ANYONE is getting paid, it would have been me... BUT, that would have been very difficult to achieve through Medical/would have required us to drop medicare/would have made the transition to a 'skilled nursing facility' VERY MUCH more difficult......... BTW, I wont say I know the hearts of his children... That's not my job/right to judge.... BUT I CAN judge the Character and level of Sacrifice they've offered... and IT'S NOTHING.. Nor has even his son, who's 6 miles away or so, bothered to come more than 6 times in 9 months... FOR A TOTAL OF 4 HOURS MAYBE?(one time he took him with him to his house/my stepfathers old house/ ......and yeah, that's not happened since for around 5 months). I doubt they're likely to come down and take over for me... Especially when they find out they will GET NOTHING for their time... That they'll actually have to do it out of the love of their father/kindness of their hearts >.< ....
Not sure if it's ok to ask.... BUT PLEASE, PLEASE PRAY for a QUICK AS POSSIBLE solution to this problem... Otherwise, I'd have to leave and basically be homeless in order to FORCE THEIR HAND! I WILL, if it will save my mothers life/add years to it possibly... BUT; Why should I, if I don't have to? I am NOT OBLIGATED to care for him every day for years... And I did so with a willing heart, not asking for anything... But at this point, this is slowly killing me and I can't go on any longer. Bottom line, 'HE'S NOT GETTING ANY BETTER, not likely, and HE WILL get worse at times and more and more needy... As that happens, my mother will draw closer, MUCH FASTER, to a premature demise... And I CAN NOT allow that, period!
There is another possible answer. That is to involve adult protective services. They will visit and order a psychiatric evaluation which will take place in the home by a visiting psychiatrist. That may provide a recommendation for nursing home care.
Wandering around aimlessly in the middle of the night is a hallmark of dementia. Typically the patient struggles to get out of bed, makes it to the other side of the room and suddenly becomes puzzled, not remembering why they got up, and then falls and calls for help. With a patient I was caring for this would happen every fifteen minutes.
Oh my goodness! Every 15 minutes? Wow, ...... that's incredible!
Thanks for not razzing me for ranting, caregiver222. It's all factual, nothing bolstered... In fact, I've not even shared the HALF of it... BUT, at this point, I don't think that's necessary... I'm glad I didn't lose you completely here with the tangents other than 'I NEED THIS'! lol.
Hmmmm, Adult Protective Services, eh? That can be tricky, right? I mean, ... he doesn't always seem so bad, as odd as that sounds. Today, while I was out doing errands, apparently he walked almost all the way to the room(holding on to things the whole way, but nonetheless).... BUT, then after a short period of him being more alert and physically more capable ... he slips back into being unable to walk and that seems to go hand in hand with more symptoms of dementia.
Last night, he knew what he wanted to find... He just couldn't get it out in speech. Repetitive "I, I, I, has, i has, i has, i has", ....kinda thing. I video taped this and a few other 'DANGEROUS' moments recently.... Just placing the camera down to film while I spoke with him and tried to reason with him a lil bit(VERY useless :( )..... Some times, the speech and then gazing off at the TV in mid sentence and then coming back to trying to spit it out comes back... Others he's repeating something that 'HE WANTS, RIGHT NOW!'... I'm just not sure how much is dementia and how much is the fact that his 'demanding/entitled' nature hasn't left... it's increased, while his ability has decreased. Either way, there are CLEARLY signs of Dementia. Also, as I think I said... some days, he has NO CLUE what year/the prez/date/etc it is... Just shrugs his shoulders... Others, he seems to do better, like Yesterday at the eye doctor, where he read off all the letters to the lady. (do you find that dementia comes and goes? Bad days and good? My friends an RN and says it's very common.. They'll be great one visit, then terrible the next... Just goofy smile or frown and unable to speak very well, etc.)... I suppose he could be having more mini strokes too.. They said that's very common.
Do you find that when they're seemingly 'doing better', they get into FAR more trouble and are TEN TIMES the work than when they're a mess? When a mess, he just wants to sleep all the time and doesn't get up as often. When 'doing better', he seems FAR more restless and refuses to sit still for 10 minutes. YET; Even when 'doing better', he seems to spend around 12Hours in bed through the night(along with constantly getting up and down) and then naps for around 2-4 hours a day. That's so unlike him... AND, the Heart Doctor does NOT WANT him lying around.... But then, he doesn't have to deal with him if you don't let him... HE WILL NOT STOP getting up and trying to go himself, whether crawling or not. When he's told, 'You have to wait, I have to clean the floor/finish the bed', you can't turn your back on him for 20 seconds.. he will NOT wait.
I'm sorry that I have no advice for you but I wanted to say just how amazing of a son/stepson you are. Your Mom must be so proud of you and how you stepped up to help. I know you are going through a struggle but my thoughts and prayers are with you and your family.
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