Wel. fiends, I doubt I will last another two years with this. I can see myself having to place my husband. If I make it another two years it willl surprise me. I made my mind up today. He is becoming more agressive and hard to deal with, makes me want to run away.
Jane-sweet confusion is one thing-aggression another. My DH was showing the neighbors a pocket knife he was carrying "for protection". In the garage is a machete. Yeh-I know-put all sharp objects away. In a rage anything can become a weapon. bluedaze
I heard once that if a caregiver is questioning the 'placement' time it probably is time..Dear Jane, do what you need to do to stay safe and if you arent ready to place him, then get an rx from your dr and put it in his food to get you thru this-i swear if mine had refused drugs i would slip it to him anyway i could during those early yrs when i was scared of him. divvi
Jane, I am so sorry you've reached this point. It has been very clear that you care deeply for your husband, and that you have done everything anyone could do. It isn't just the aggression you should consider, but also how much this is draining your strength. You sound mentally and emotionally exhausted, right on the verge of collapse. I am not nearly there yet, I haven't been fighting it as long as you and my husband so far is very easy to deal with. I hope I never have to face what you have. You have my deepest sympathy.
Jane-I also have read many times if you are considering placement the time is here. Also-you make up your mind and he has a good day. You change your mind (assuming you still have one) thinking maybe it's ME. I'll wait a bit more. WRONG! It's what's called bouncing. It won't get better. I waited too long and couldn't find a facility to take him. I knew every MSW in five counties. Very sympathetic but also not able to help. I wound up paying a sitter and the monthly rent for a place that took him conditionally. Just a tad pricey-eh what. Once admitted the facility might work with you. Might even agree to med management of rages but we'll deal with that one later unless you need to know what I eventually did. bluedaze
You have given so much of yourself to us - your knowledge and advice have put many of us on the path to Social Security Disability; Medicare; all government mind boggling money mazes. If it weren't for you, we would not be receiving the extra $200 a month we now get.
Now it is our turn to try to help you - As the others said, if you are considering placement, it is time. As with Tony, who had to make the decision to place his young wife - there comes a time when your own physical, mental, and emotional health HAVE to take precendence. Alzheimer's Disease is going to take your husband's life, no matter what you do. Don't let it take yours.
I think you all are very correct...if you are thinking about placement, it means you are both ready. I told someone else that even if you are not thinking about doing it right away, if you are thinking about it at all, then this would be a good time to check out the places. It can take a few months, easily, to place a person. The more research you have done, the better off you will be to make a decision, and thus feel better about your decision.
I waited too long. When I was desperate and at the end of my rope, I started looking at places. That was not a great state of mind to be in for this kind of venture. If I had looked at places while I knew I was keeping her, I would have had a "just looking, not needing" attitude. My attitude was filled with guilt and depression and anxiety, because I was rushing things and unhappy.
So, take this time, look at everything available, and allow yourself to take it calmly and slowly.
One last thing...on the day I took her, I felt awful. I have this in another post, but it bears repeating. It will be hard. It will be the hardest thing you've ever done. I never put a child in day care, but I know now what it must be like. Please remember, though, this is not a child. It is a full grown adult that you are no longer capable of meeting the needs of. My LO is 1000 times better off with a staff of people to help her than I ever could. I am better off too, and it's OK to admit that.
bluedaze,please tell me what you finally did. I hope I do not run into a situation where they will not accept him.
Joan, you are correct, I cannot let this take my life to. It has come to a point where I know I can't last much longer. I have already been checking facilites, according to the government comparison site. I pretty well know where I want him t be it is just if they have the space available when it comes time to do this. I know he will need to be on a waiting list for a room and I am just afraid they will call for him before I am actually ready if I place his name too soon.
You asked why the two year time frame? Don't know, guess it is a way to keep postponeing it. Yes, I too know that when you are thinking you should place, it probably is PAST time, I have realized as I think back at the years this has been going on, 8 years now, and the last 4 have been horrible, it can still last another 8 years, I need to have him placed where he is taken care of if my health starts to fail, it would be hard to scramble at that time for placement.
It is beginning to drain me mentally and physically and he does not even realize what I am trying to do for him. I feel in the right place that I will have not only myself to care for him but also many others who are trained and not physically drained from all of this.
You asked in a seperate thread what I did all my life in the work field. I said Homemaker, I feel that has been the biggest and most important of all jobs. I was however a Senior Medicare Specialist in a large hospital .
Jane-you asked-so here goes. We were running out of options. The facility told me they could not keepDH. He got out of a double locked building while wearing an alarm triggering anklet. He might have lost his mind but not his brain. An ombudsman who I called in tears pointed the way for me. I spoke to our psychiatrist who I have known for years (professionally). Told him what was going on. He asked what I wanted and I laid it on the line. Even though it is not legal in Florida I wanted DH chemically zonked (like my technical terminology). Chemical or physical restraints are a no-no except in very specific situations. Game plan would be to gradually lesson the Seroquel dose until we hit a happy medium. A friend who is a psych nurse would be monitoring. Doc told me-no way-not legal. My response was that I could find no place in the state who would take him. If I had to transfer him far away I couldn't see him. Bt this time all my profssional friends were no longer saying-he can't be the only one in that situation. He might not be-but there still is no place to take them. OK Doc agrees. Psych nurse instructs staff how to handle DH when the drug kicks in because he will be very placid. Never happens. He is up and about and no longer raging. I have taken him off the AD drugs as he has FTD and the AD drugs don't work. We graduallly lower the dose and the exit seeking and agitation drops to coping levels. I did much research and convincing but it worked. I think the experience took tem years of my life. I have never been so frightened and alone. With help from good people and support from my family we made it, The End
Jane, when it came time to find a place for my husband, no one wanted him. Every place that had a locked AD unit didn't want the liability of a young, strong and healthy male who was aggressive and unpredictable. They feared for the other elderly, frail residents and even their staff. So, my husband was in a psychiatric unit at a hospital getting his medications sorted out and one after the other of the evaluators for the NHs would come, look at him and shake their heads. The hospital social worker told me that I would probably have to send him miles and miles away to a locked, secure unit where there were mostly criminally insane people. Well, that was unacceptable so I started looking and finally found a small, private pay AD specific home that had six residents. I paid thru the nose, but they were willing to take him on. It was a terrible couple of weeks trying to find a suitable placement.
My advice to you would be to put your husband's name on the list and if they call you with an opening you can always turn it down and they will just move you to the next spot on the list.
Sandi, here in our State if they call you and you turn it down you go to the very bottom of the list and possibly not back on the list at all. They do not look kindley at a turn down unless it is a Medical situation where you have no choice.
My husbands agression only comes when I try to do the hygine part, but of course that is one of the most important parts of the caregiving. How can people endure this on and on and on, especially when they get to this stage 7 ? It is exhausting.
bluedaze, that would also be the approach I would take if it came to a situation like that. I think that is exactly what thye do here in our State.
Jane, I have runaway feeling days too. I think we would ALL raise our hands if asked that question! Today I don't feel that way at all, as it has been a good day for the most part.
My hubby LOVES to play the blame game- EVERYTHING WRONG is MY fault. I did this or I did that , though I might not even be near him! Then if I do something RIGHT, he wants the credit for teaching me that, as if I had no brain . I am the scarecrow of Wizard of Oz, and I crumble with my straw at times!!
Jane, I too deal with the 'aggression' part of this disease when it comes to the hygiene part. I have started looking for homes (visited one) and plan to seek out a "small home" where there are only a certain number of residents too. I am not looking to place my husband either, but the agression does scare me too. Last nite my DH 'butted' his head towards me as I tried to get him into bed...I think he "knew" what he was doing & I let him know that was not acceptable. I think he knew that he scared me. This morning, he was having the usual trouble in the restroom, but normally I can encourage him to "hold his pee pee" and eventuallly, he does & it goes okay...today, fully pee'd on the floor...about 30 min ago, got that area mopped up (takes 2 times to get the smell out of the tile) and then just about 15 min ago, while sitting on the pot & parts INSIDE, he pulls it OUT & pee'd on the floor again...I am fit to be tied. And he gets so 'stubborn' when I try to clean him up. I always said 'never' to placing him, but sometimes, many times, I do think it might come to that because of the stubborness, AND, that I am worn out trying to keep it clean & together...I am only sitting here @ this computer to just "get away" for a moment & have a time out...Very hard today...I do hope you have time to get out & search -- as many have told you here & me recently, better to be associated with a place ahead of time so in case you need it, it is there & they know you already. Hopefully I will figure it out soon too. I guess I just keep thinking on those "better" days, that it won't be necessary...but then I'm reminded of days like today. Hang in there, Jane!
Natsmom, I don't have your problem as yet, but I just had a wild idea. I know my suggestion will seem childish, but think about it. Get an empty gallon milk jug (or cranberry juice bottle - anything plastic with a screw on lid) and put it in the tub and bet him that he can't hit the hole and get it all to go in. (Young boys used to play that game, and our DHs are young boys again!)
That's a thought, Mary -- And I'm sure the clean up would be better than crying over it again & again. I some how think he's too "smart" for that -- not smart enough to pee in the right place, but smart enough to know that he doesn't want to climb into the tub every time...I'll think about it. Thank you for sharing.
Natsmom, it is indeed fustrating what you are going thru, i know i deal with these matters EVERY single day. in the beginnig when it would happen it also drove me insane and i screamed at the top of my lungs so hard my doggies would retreat to their beds-now after a year or more of daily duty of scrubbing marble/WHITE carpets, 5200 sq ft of them(sigh)i can honestly say i take it in stride these days and have almost become nonchalant(?) about getting out my mops/steam cleaner. it was not easy to get to this point. just today he found he loves to stand on the 3rd floor railing and pee down into the atrium 2 floors down AND all over the artwork down there -(double sigh) suckit up and move on, is my motto or else my DH would have been placed yrs ago. it will get easier as time moves on. divvi
Oh Divvi...I did in fact SCREAM @ the top of my lungs & our dog didn't 'run', but did just lay down with her ears on the ground...I don't think I can handle it like you have. Maybe I'll "get used to it", but oh my, I just don't see that in me. But thinking about YOU & dealing with what you are (on the pictures! Oh my!!) I guess I can @ least be thankful we are on one floor! Thank you!
Oh, I'm sorry, divvi, but you and Mary really did make me laugh.
I guess sooner or later I'll be very grateful I have a very small house, only one story, and ceramic tile throughout!
And, come to think of it, I had lots of practice with my very, very old cat (she was 21 when she died). She became incontinent and wandered all over the house, dribbling as she went. It became simple routine to mop the floors first thing in the morning (I walk around in bare feet...) and first thing when we got home from work. I had the cleanest floors in town.
and yes, ALL my family says when they hear the latest antics, say 'isnt it time to start looking for a 'place'? i am feeling these days its a huge mental challenge to retain my sanity during this journey so for now i am up to the challenge for a bit longer as i dont take defeat lightly, and will continue to take the bull by the horn, if/when i ever feel defeated i will have the livein lady step up to bat and take over and i will become second in command. i think we should all get purple hearts! for courage...divvi
I agree with Mary -- That's hilarious, Joan. And I guess 4 years ago I probably thought "I could never do that" about ALOT of stuff, but, like Divvi, hoping that this "pee pee everywhere stage" will be one I allow myself to "get used to"...It's a hurdle for me since I'm a clean-junkie...I think this is another one of God's ways to give me the ability to handle things in a more patient and gentle way...And, ladies, after ALL THAT stuff, I went in to check on my DH & as he sat there not putting on this shorts yet (had on new panties with a pad inside), he saw I'd been crying, stood up, and said "We'll get through this somehow"...how can you stay angry at that? Of course it's not HIM that's causing these messes...it's the diseased mind messing him up!! I hate hate hate this disease and the robbing of a person that it does. More tears...
natsmom,,,read the incontinence thread. Most of us find that pads don't work, you have to go to pullup panties. The pads have adhesive on them, and the plumbing down there tends to dislodge them and then the adhesive sticks!!
Yes, I use the "pull up ones" at night, WITH A PAD...believe me, I've read & re-read the incontenence stuff, and looked @ bigtreemurphy.com too. BUT, during the day, regular briefs and VERY ABSORB PADS works really good...of course that's for now. May have to go to the pull-up full time, but he just hates them...i keep trying to let him have what he wants for as long as we can. Thanks Briegull!
As I said on another thread, I knew this little girl who, when asked how old she was (on her birthday) said, well, I'm four today. I don't know what will happen tomorrow.
NONE of us know what will happen tomorrow. And I think most of us are comfortable dealing with uncertainty.The hard part is dealing with not knowing HOW LONG the uncertainty will go on.
briegull, I found bigtreemurphy years ago. I also have gone through the pee on the floor, in the tub, half on the toilet half off, times I wished he would just pee in the Depend and on and on. I think each person will have to go through this if the loved one lives through all the stages, this is just part of it. I have to say the worst part for me is really the agression when I try to do the hygine, especially the toilet part. Today has been a good day. Tomorrow I dread.
I also went through the same thing you are going through right now. It seemed I was constantly cleaning up the messes. He also would get very aggitated towards me when I was trying to get him into the bathroom or try to clean him up. Then of course, when the wandering started to get worse, sometimes all day and night, days and nights on end. I got so very tired and my health was starting to go down, so, I did have to make the tough decision to place my husband. I do believe that we are both better off now. My health is finally getting better, I see my DH everyday and we have some really good visits and times together. I am not that stressed out anymore. He is getting really good care and is at the Stage in the disease that he does not ask to "Go Home" any longer.
I will be in Arlington on 7/7-7/16 as my Step-Dad is having a Heart Procedure done and I need to fly there to be with him for those days. He lives near the Martin High and Young Jr. High area of town. If you feel you would like to meet and have lunch, just let me know. I have given Joan my e-mail and also my phone numbers.
Thanks, Kay Kay. I appreciate your encouragement & info on what you did. I live just South of I-20, sorta directly south of Martin HS, so perhaps when you are in town, we can get together. I would like to meet you, but I hate to interrupt your time with your step-dad as I suspect he will need you there too. I'll email Joan to get your contact info & share mine with her as well. Thanks again and hope the procedure goes along without a hitch!
what surprises me with those "stages" is that incontinence is listed down at level 7, and yet I think for most of us it started certainly early in 6. Fairly functional people getting incontinent fairly early on.
At this point my husband is probably at stage 3 or 4 physically (2 hour walks and comes home with no problems), late stage 5 for congnition, and early stage 6 verbally. There are a few more early stage 6 things like not seeing things that are right in front of him. I think that it is common for them to be at various stages for different things, especially for the non-Alzheimer's versions of dementia.
One of the reasons that my DH's doctor did not use the ALZ.org stages is that a person can have symptoms in multiple categories so she always used early, mid- and late-stage in her discussions. My DH is now in stage 7 but still walking, talking (just not a whole lot of sense) and able to feed himself. He is also totally incontinent.
A year before I placed my husband I started looking at places. I am a planner and like to do things ahead of time when I can. In this case, I had promised him that I would keep him home as long as it was safe and I could take care of him. When I started looking he really needed a companion to stay home but he was resisiting the idea. Over the next several months he got worse and worse (agressive, not sleeping much, getting up in the middle of the night and turning all the 0lights on, leaving food out, etc.). We added a companion to the household and she was with us for several months. If she had not been there, he would have been placed much earlier. Less than a year later, I was so exhausted that I was nauseous every night. I could barely think but still had to go to work each day. He had also gotten agressive to the point where I was concerned for myself. It was obvious that it was time to place him.
One of the nice things I did that worked well for many of our friends was that I made a point for us to see many of them the last month he was home. I am not sure how much he really grapsed what was going on, but I knew then that that was probably the last time many of them would see him. Looking back today, I am so glad that I made that effort.