Coco, the Ativan (Loranzapam) also works with my DH to calm him down and keeps him sleeping and not wandering.
It sounds as if it is about time to consider placing him for your own sanity, Coco. If you qualify for medicaid or the VA placement, I'd go ahead and get started on the process. That way, you can keep advocating for him but won't have the 24/7 caregiving - let someone else do that! You will have time to do your work also. You need this break, Girl! Arms around you.
"I don't suffer fools gladly" means that I am intolerant of people who are stupid, I am irritated by foolishness. Part of this actually comes from the bible. I cringe reading the platitudes offered by health care workers who should know better. Just as we say-when you see one person with dementia you are seeing only one person. There is no one size fits all. You dear caregivers still in the trenches deserve better. Please think of yourselves. Do what fits rather than what you think others want you to do.
thanks you guys. I have some Valium in the fridge, is that not kind of like Ativan? They are 10 mg. I am considering giving him half a one at night, along with his 25 mg. Seroquel. I could do it in the day too, his pacing is pretty much from 9 am till 5. I guess it would not be called sundowning, or even agitation? He just cannot sit still, he sits on his chair and scratches on the floor, dumps a cup of water on a spot and then wipes it with his hand. He is in a strange world, also picks one leaf at a time off the ground and walks to a bush to throw it in. I let him do this as it is exercise.
It is when I am trying to rest that is worst, however I may have figured out a small solution to the every 3 minute "ghost peeing" in the bathroom. I put a basin on a chair, (surrounded by pads), in his room and have asked him to pee in there. We shall see. At least I would not have to hear him pace constantly to the bathroom , which is right next to my little room. Plus, he flushes every time, for no reason, and no matter how much I tell him he cannot remember. We are on water catchment here, I mean we have enough water but it is a waste to flush when there is no pee.
I just emailed the VA nurse that was here yesterday, telling her that she does not see how bad he really is. And I left a message with the Social Worker...to talk about options.
I am so !!^^%$# sick of it. And how awful we feel when we yell at them.
Ohh CoCo...Maybe if he had a hand held little urinal of his very own and you painted something on it he would use that. I don't know if valium works like Ativan...I know the ativan relaxes you and makes you sleepy for an hour or so...Send the VA nurse another e-mail and ask her to have the dr. prescribe the valium for you. Several people on here use it to calm their mates. I have even taken one-half of a tablet when I felt I had reached the end of my rope.
The thing that is driving me crazy now is my dh gets out of bed and his walker is right beside him touching the side of the bed when he gets out...and does he use it?...NOOOO. He is so unstable on his feet today and I just know he is going to fall before long. I have tied some Christmas bells to the walker so if he moves it I will hear the bells.
that is so sweet, his own painted urinal... well so far this is not working. I put it in his room, on a stand, explained to him to just pee in there and I would dump it later. He said ok, and 5 minutes later was in the bathroom!!! I am going to keep on it, next time I hear him get up to go, steer him back there. Oh it is so EEERRILLY like his Mom was.
AN update, I just got a call from the Geriatric Pyschologist that was here with the VA nurse about a month ago. She is based in Honolulu where all the bigwigs are, and in fact is the one who is helping me to get respite over there in December.
The VA nurse had called her regarding my desperate emails. So when she called she just said, up his Seroquel, I will send you more. I told her how even since she was here how much he has gone downhill. MarilynMD I hope you read this.....the Dr. said she is convinced Dado has the familial type , that you had mentioned. She said it really is moving faster than many, and with those signs and the fact his Mom had it, she thinks he likely has the gene. Strangely it was a relief to hear that.
As I was crying on the phone, she told me, the #1 reason people place is because they get no sleep. Though I am going to keep trying, at least for now, I am glad it is all out there, and on the record. If this progresses to where he is not able to recognize me, I will be immediately seeking placement.
But in the meantime, I still have to survive without falling apart. I am in the sad place of considering talking to the local Real estate agent, and seeing if we can sell our house just to pay off the loan. We have only been here for 7 years, if we can get that back, we will lose about $100,000.00 what with our down payment and other things. It's ok. Now this is just in the thoughts, and not in a hurry. If it happened when he was in a home, I would find a little small suite and go back to the simple life.
All my wonderful trees, and rock walls, and orchids, how hard it is to think I would not see them anymore.
I am still so tired, but just feeling a tad better after talking to her.
Coco, bless your heart. I think we all wish we were closer so we could help. You live in such a beautiful place. My grandson is in Hawaii now studying sea turtles. He's been sending pictures on facebook and they are breathtakingly beautiful. I hope you will be able to keep your home.
Coco, I am so sorry for all you are going through. I wish there was something I could do to help you all I can say is "Hang in there" and I hope things improve sooner rather than later.
So glad you heard from the VA and it sounds like that person is one that cares. He just can't remember what the urinal is used for and he can't help it. That doesn't make it any easier for you, but at least you have that understanding. Keep us posted and vent all you want and we are all here for you.
I agree with Vickie -- I think you really need to place him ASAP. You won't be any good to him or yourself at all if you can't get any sleep. Poor man -- it sounds as if he is totally operating on motor memory. Please know I am praying for you and Dado -- you both need peace.
Coco I wish I could offer more than just some pharmacological advise: my heart goes out to you Ativan vs Valium Very similar drugs, prescribed for anxiety and sundowning. both of the same class Ativan has a much shorter half life a dose will last 4-6 hours clears body faster less "hangover" Valium has a longer half life - stays in you system longer 7-8 hours These are generalizations and vary just use the times as an indicator Storage not in fridge z5too cold ideal temp between 65 & 80
Looks like I am going to up his Seroquel dose tonight Marty, no valium. She said to just use it as needed... I usually give him 25 mg at night, half that in the day. So tonight, instead of the 25, I am going to give him that plus one half more...(12.5 mg.) It was so great at first it knocked him out all night, I guess he has gotten used to it now.
A final note on this day. I just made him a hot chocolate, and gave him a hug he had been yelled at this morning poor guy. He looked at me and said in very clear words, with his pidgin accent. "too bad I get the sickness honey" Sore sore heart for him.
i would also try the ativan vs valium coco. it seems to agree fairly well with our AD spouses. i sure hope you can get some rest friend. its hard enough to deal with the caregiving issues with sleep much less without. it wears us down so quickly. its good to always have your ducks in a row just incase. take care, divvi
I feel so sad most days. I'm missing my Dh so much...somedays wishing I had kept him home. I went to visit him yesterday...oh my, it was so hard to leave. He so wanted to come home, looked at me with such sad pleading eyes. I want to go again, but it's getting harder trying to get away without him getting upset...and me too.
Will be anxious to hear how your night went Coco. So far my dh is sleeping through the night with no problem and I can't figure out why I am too...that is my saving grace that I am able to get my night time sleep and maybe even a little nap in the afternoon. At my age I know it would totally do me in without my sleep. You are really having it rough. That look they give you that just tears your heart out because they know something is wrong, but they still can't control their actions....so sad. Hugs dear friend.
thanks everyone. Thanks for asking about my night Judith.
He did sleep better with the higher dose of Seroquel, and I was grateful he was still able to get up and pee. He will not leave those depends on at night takes them off and puts his underwear back on. I made sure to put extra padding on the bed. Even with the higher meds, he is out there now, pacing , picking, wandering in his little paths that he has. What a tough bugger he is.
so yes I got a decent sleep too.
The home made urinal in his room was a failure totally. Not only did he not want to use it, he missed it and what a mess.
Judith I am surprised your husband has a walker. they don't recommend them here for dementia patients.
Julia I of course follow your posts, and oh how hard it must be. But what can you do?? It is only going to get more advanced. Even if you took him home, you would have to go through the whole process again and it may even be worse. Please know you are doing the best you can, and accept the Gold Medal that Joan is handing out.
blue thank you, nora, divvi my queen, all of you. Despite one good nights sleep, I know I have to consider major changes. I will think about it tomorrow though. Love you guys.
coco if hes taking off the depend, try not to have any reg underwear available to see what he does. he may put the depend back on. many of us resorted to hiding regular clothing due to it. i would question using seroquel as 'needed' and not on a daily low dose to stabilize him. and about the ativan. ativan is my ace in the whole when i need DH calm and quiet! divvi
Couldn't agree more about Ativan.. I give DW 0.5 or 1mg depending on her mood about mid to late afternoon and it reduced her sundowning symptoms of pacing, rummaging dramatically
At little humor with all that's been going on with others as of late Ativan has stopped DW's routine of last year, when she would take every towel out of the bathrooms and the linen closet, refold each one neatly creating a pile too tall for her to carry in a single load and then try to throw them in trash room out in the hallway of our condo. That was solved by installing door alarms and locks she's yet to figure out. Pre Ativan her latest routine had me thinking I would hire her out to a laundry. She loves to fold clothing! (except when I've done the wash, then she's always MIA). DW's rummaging act 101. The show used to start right on time @ 6:30PM. She would proceed to empty every drawer from both of our dressers, the clothing would thrown all over the bed. She would proceed to fold it all very precisely in neat piles. Of course , there would be no order as to what went into the piles? The next part of her routine was to put everything back in the drawers ..or not.... some nights she'd be frantic at her task of folding and that would tire her out and she'd fall asleep and I'd get to put everything away. If I let her put things away without help (not possible most nights) I'd be saying to myself why are there bra's in my sock draw. Where is my underware???, doesn't it make sense to find your socks with towels in the linen closet doesn't it?? Just got to keep smiling,
Coco - turn the water off going into the toilet. My mom use to live in a house with a cistern and she only flushed if poop, otherwise she would wait a few times (put pee toilet paper in trash). That is the only way to control and conserve on your precious water.
If he is approved for medicaid, then he will pass financially for the VA since if you are not self pay that is how VA gets payment. I would start the paperwork right now as if you are ready to place him now. You can always delay if all comes through, but you don't want to wait until you have no more rope to hold onto. My MIL killed herself taking care of my FIL because she would not accept help of any kind. I will not do that and no one else should.
And, he may need placement now and when he stablizes, gets into another phase bring him home. Some here have done that.
Coco - about caregiving and wanting to give all to your lifelong love. I don't think if you are in your 70s, 80s or 50s - it depends on you and your relationship. Yes, when in 70s, 80s, 90s one expects illness and maybe at those ages one is more patient and accepting of the problems with an ill spouse. We are all made differently. Even though I worked as a nurses aide in a hospital in my 20s, I am not one to do the day to day care of my husband. I do not want to clean him up after he messes himself, the floor, bathroom, etc. I resent now having to clean his mess in the toilet. He has always had loose stools and they do a number on the toilet and bottom of the seat. We have been married 41 years and that makes no difference.
It is the persons makeup that will determine how we handle the challenges of this disease, not age. For those who are with their 'soul mate' I believe they are ones that will also do anything for their mate. We are not soulmates. I know if the roles were reversed I would be in a home as soon as I would qualify. He would not want to take care of me - he hasn't in the past when I was sick or had surgery so I have no reason to think it would change.
Do not think less of yourself for not being what you think you should be. You are who you are which is not the miracle caregiver - neither am I. Get the paperwork going and when December roles around, if not before, you will be ready. You can always change your mind although I do not think you should unless he calms down real quick.
HI everyone. Thank you Charlotte for this heartfelt post.
First, I have read all the updates here, and instead of answering each one, I want to say here, I AM SORRY YET AGAIN FOR ALL THE PAIN< AND< I AM HAPPY FOR THOSE MOMENTS OF JOY! I love you guys.
It has been a tough roll here of course, as it keeps going. I am now on about 6 weeks of leave from my market job, the food permit did not pan out, but that is not the only reasons. How I cried having to make this decision as I drove in early yesterday, I felt like I was losing a best friend.
The market manager has given me until September 30 to make a final decision, this is a Farm Bureau outfit so there are rules and regs about how much leave time one can take. She went out of her way for me, and said they don't want to lose me there. People love the coconut and the gourd classes, and as one person put it, my mad over the top energy.
Financially I have just had to let it go, I just CANNOT worry about work for this next while. I am digging in to the meager savings to pay the bills while I am out. I may have to swallow my pride and ask for help. But I think we can pull it off.
I am not giving up my costly coffee, even if I have to give up my haircuts or eye cream...
Dado has been continually going downhill. I think I mentioned how the doctor thinks he may have the "familial" genetic type, rare, (same symptoms just quicker) He had a bad backwards fall this week, and has been realizing how sick he is, cried at least three times. As I was drying him out of the shower, he saw all the pads and mats around the toilet to collect messes, and it hit him...and he cried.
That is the hardest of all. How I hope in a strange way, for him to get beyond this stage, and in to a world where he does not know, so he does not hurt so much.
TRULY TRULY how this site has helped, and continues to do so. Joan I will be sending in another small help soon, this is priceless and it must keep going.
NO ONE KNOWS NO ONE KNOWS what we have to do. I know there are people suffering more, and harder, but what I mean, is the TYPE of pain we have. Ms. Magic said it well in one thread.
Hugs to you all.
PS Yes I will still be getting the 10 hours a week...not going to give that up.
I agree with you so strongly, ..."no one knows, no one knows". When they realize what they are losing, what they have lost; it is an excruciatingly hearbreaking time. I recently read an article where someone said "Parkinsons is the worst thing to have because they know, Alzheimer's is much easier because they don't know".
OH REALLY! I could give so many examples of my husband "knowing". So, I guess, Coco, that little article is just another example of no one knowing. I have also read of the so called bliss of dementia and I don't know if I buy that one either. There may have times of fading out but I can't say I ever saw bliss.
I'm so sorry to hear about the market. What a significant loss to have in addition to everything else. If Dado goes into placement before September 30 could that change your decision about the market?
You are resilent and compassionate but that does not make it hurt any less- maybe during this part of it- maybe it contributes to it hurting more because your level of perception and appreciation?
Sheesh, Sunday's are always the most emotional for me. I care about you very much.
as a PS, I agree with the posters here about Ativan. As time went on, his metabolism of it became more rapid but it still was better than valium or Xanax (alprazolam). The next to be tried was temazepam (Restoril) but he did not get to that point.
CoCO....look at this time not having your Sat. market place as a time to make more of your gourds and be ready when the six weeks is up. Also, maybe you can find someway to make your candy too.
Have you thought of selling your stuff on ETSY....very cheap to sell stuff there. You could even sell the instructions on how to make the gourds...I have purchased many patterns on there for things I wanted to make. Maybe you can spread out the lady you have that comes 10 hours and have her come 4,3,3, and she can watch Dado s so you can get more done.
It is always the darkest before the dawn. You will get through this...but, not without us...so please keep us posted. Let us know how we can help you if there is a way.
I care about you too abby, and await our Hawaiian warm pond adventure. Thank you for your love. How is your heart?
Judith I am glad things are going to work out ok with all that VA mess.
As far as work, I am allowing myself a little time to regroup. And when the care lady comes, I am going to take the gourds to the beach and carve to my hearts content. Will I return to my beloved market, I just can't think now. I appreciate your loving suggestions and perhaps a website will be in order...when I can ...
What I need to decide, is how I can continue this if he keeps spiraling. I am so scared and deeply sad to think about placement.Thank God, I can read and re read what so many of you have gone through here, and continue to do so after placement, and the passing of your beloved. I am thinking..of getting the VA social worker to get me a tour of the facility in Hilo. choking here..
Dado has been very aware this past week of his illness. He is taking a bit more Seroquel and it not quite as antsy, sits on his favorite chair on the deck. I can feel the sadness. Lots of tears on both sides here, but, we are ok. I know how we are all so connected here, and I hope there is a life on the other side of him in a home, slowly? dying, and the grief on my side. Light hearted happiness seems like such an illusion, was it ever real, or warranted?
Coco, I know how hard this is. Tomorrow will just be a week that I have been gone from my job and already I am so depressed. Tonight I was thinking, I can't do this any more. DD went back to school cloths shopping with a friend. It should of been me taking her. We use to enjoy spending the day at the mall. Where was I, babysitting DH.
I'm sorry Coco. I do wish you well and do hope you can find a way to make it all work.
please blue, let's just know that it is fleeting, and that happiness can be there again, and even during. I just cannot fathom long episodes of time where there is no sadness, but it HAS to be there. Otherwise what is the point? there has to be something to grasp that is good and true. I have found myself crying out to God, the God, that I almost don't believe it lately. I used to so believe in miracles and true love.
And after telling the Creator, (who I thought I believed in, ) that, though I know we are not supposed to test God, that if it did not rain here soon I would have a hard time believing.
Strangely, for the first time in many months, it is pouring out there, just sitting on the deck and watching the gutters run in to the water catchment. It is the first truly happy moment I have felt for...hmmm... has it only been a few weeks?
Coco, my heart is breaking for all the pain I know you are in. And poor Dado, Lord it is so hard when they have those moments of clarity. Nothing ripped at my heart as deeply as when Lynn knew what was happening to him. The stark fear in his eyes is forever etched in my soul.
We can all share and we can all try to help, (it is after all what we do best!) But, it is you and only you who knows how much longer you can hold on. I wish we could all change our thinking about placement. I know for me I saw it as a personal failure. At first the guilt about ate me alive.
But placement doesn't have to be a bad thing. How is it we have twisted trying to get our loved ones the best care possible into a bad thing? Why do we feel we must do what a full staff with 3 shifts does- all alone, until we feel we will completely break? It’s tragic really, this stigma we have embraced.
Try to remember how much Dado has always loved you… and ask yourself, would he want you to be this worn down, this heartsick? Placing Lynn about killed me, but not placing him surely would have. It is not a question of how much you love them vs. how long you can care for them at home. It is all about us being individuals with our own limitations, health issues etc etc. We all hold on for as long as we possibly can and we all do the very best we can in this impossible situation.
I know we hear horrible things about nursing homes, ALF’s etc, but mostly I have found them to be untrue. Yes the care can slide and our loved ones can get lost in the crowd… but it is up to us to make sure that doesn’t happen. Advocacy is not for sissies! <smiles>
It has been 3 ½ years for us now since Lynn was placed. I can honestly say that though I still desperately miss having Lynn home with me, it was the best thing I could have done for BOTH of us. Lynn has a better social life than I do! He goes to live music shows which he LOVES, along with other activities that are offered at least 4 times a day!! He has intense daily physical and occupational therapy. He is getting the care he needs and deserves, he is getting more stimulation than I ever could have provided, AND he has me who comes in to cuddle and love on him every day.
When I am with him, he is the most important thing in the world, nothing else matters. I could not give him that when I was elbow deep in 24 hour stress and caregiver burn out. And most important to me is Lynn went from acting like he hated me at home, to once again loving me when he was placed. Having our love back, that has been the greatest gift of all ♥
Do what you need to do for Coco, we love her and she is important to us!! ((hugs))
And ps…. That is still a fairly low dose of Seroquel, don’t be afraid to ask to increase it, it might just help with the obsessive behaviors.
Thank you for asking. My heart is screwed up. Two months and I still cry at least every day. Actually I am glad I can cry because I was not able to for many years. I don't scream anymore though, well, not so much. I don't want to scare the companion animals and my anger is in a different place.
I get confused between life as it was during the dementia years and life as it was before that. If I could afford a therapist I would do that, but cannot, so I go to my old texts and have found one of them comforting.
I, too, had to give up work. It seems you have more joy from your work than I did mine, but still it was difficult to give up the identity. While I could work a lot of the time from home the most impossible to accommodate was that I was required to be on call and could not reconcile that with my husband's needs. I also had to be available for seminars and such and could not figure out a way to do it.
Coco--I was on vacation for 11 days and am just getting back on the boards. I'm so sorry to hear what's been going on with you; I'm a bit under the weather myself so I just skimmed this thread. First, because it's probably familial AD, at least you now know that Dado will most likely progress rapidly through the stages--somehow, it's a bit easier the more you can anticipate, yes? I beg you to rethink your idea about waiting until he doesn't know you to place him. From skimming this thread, I am concerned that you seem to be close to the breaking point--this isn't fair to you, nor really, to him. See if you can get his doctor to give an estimate as to how much time he has left, based on the rate of progression thus far. He may recognize you to the end; most of us, looking back, wish we had done placement sooner. My Steve didn't go through a decline in functioning due to placement, nor did it matter that he was only 66 at the time (last year). Those were my two biggest fears. Actually, after his meds were adjusted, he seems more content in the institutional environment, where he can pace to his heart's content and can't get into trouble. Please rethink placement for the near future.
Coco, Thanks for the hug. Feeling much better today. Need to get to work on selling my work car. Just one more reminder of the life I use to have.
I to, get upset with God. Why do bad things happen. Guess we will not know in this life. Glad you got the rain. We had a thunderstorm last night and I enjoyed the rain so much. It looked so refreshing.
Abby, I think of you often and am glad you have given us an update.
a big hug to all of you going thru these tough times of late. many here seem to be slipping much faster nowdays. coco it would appear that you are at a breaking point sweetie, please call your counselor and get all the info you need and just maybe on a possible waiting list for your dear Dado? he is going to slip now regardless of if you lose your business or house friend. we know whats in store, and unfortunately the familair genes we see tend to move quickly. if you can go ahead and place him you may can have the opportunity to make things work for you a bit better. you will be his advocate and will see that he has good care no matter where he is. sometimes fate hands us a very rough card, but with your resilience and fortitude you will pull thru like everyone else here. it will be stressful i dont say it wont but we must presevere for our loved ones and maintain ourselves along the way to ensure we have the stamina to see to them and our own lives. take care of coco first then things will fall into place much easier. divvi
Coco, thinking of you...you really are doing it tough right now. As the others have said, you must consider placement, or at least get on waiting lists so things can be in place for when your ready....it can take months for a place to come up. I rang and visited the homes till I was afraid I was becoming a nuisance, but the one that came through for me said, it showed them how desperate i was getting. The last three weeks Dh has been in place, I have cried buckets full...terrible feelings of guilt, feeling I should have kept him home, but it had to happen. I just hope these feeling of guilt pass soon, I know he's getting good care, that's all that matters right now.
(((Julia))))) you have done the ultimate loving and caring decision to do whats best for you both. 'i know hes getting good care-that's all that matters'.. you said it right friend. divvi
Thank you so much Divvi...it's so comforting to have you girls reassuring me I did the right thing. Just watching him at times, seeing him so lost and confused, watching him there doing the things he does (sad, funny, at times ) makes me realize it was time..