Yesterday I went to see DH and he looked and seemed okay until he started talking! First he asked if I was still working...I never worked through out our married life! How many children I had now...same as the day we married NONE. Then he started talking about something with some guys and he mentioned "the Colonel" so I am guessing it was something to do with his time in the military.
I got to speak with the doctor and one of the nurses. DH has been/is violent and either threatening or hitting some of the staff!!!! Found out while talking with the doctor that he had taken DH off Seroquel and put him on Risperedol or whatever it is called. I told him maybe that was making DH violent so he is going to put him back on the Seroquel.
DH has been getting PT for his balance because he fall and keeps bumping into things. His arms are black and blue from bruises. I asked about getting him a walker but they didn't think that was a good idea while he is violent, which I guess makes sense. I don't know what else can go down the tubes but I hope and pray they can find the correct meds to stop the violence.
That's the news from here for this time. I hope I have better news next time. Take care everyone and find something to smile about each day.
That aggression thing just seems to be a stage many of them have to go through as they descend through this process. My experience is that meds can make a huge difference.
Hugs to you too Jean21, and I too am sorry for the downturn. Thank you for the smile comment...in the face of what is happening to you and him. (That made me smile)
jean21 i hope they can get his meds ironed out. yes the change in meds can cause these unwanted issues. if he did well on the seroquel maybe thats the med of choice just in a different dose. good luck, hope next time the news is much better. divvi
Jean21, Lloyd is all banged up, too. Looks like someone beat the hell out of him. He falls a lot. He stands in the doorway to the bathroom looking down at the floor and the next thing you know, he is banging his head on the door frame. When he sits at the DR table, he has his hands under the table so he is always raising his hands and banging them on the table. I told his mom I was thinking of putting a helmet and boxing gloves on him. He's on blood thinners and I think that causes him to wound more easily.
Jean21, my DH has also been switched from Risperidol back to Seroquel due to violence issues. His speech has been affected, but he's much calmer. They're in the process of the med adjustment at his ALF and I've had to hire a personal health aide to be with him 12 hrs. a day for the next week. When he first went into the ALF 20 months ago he had been on Seroquel and was switched to Risperidol. Now it's back to the Seroquel again.
I don't know if doctor's are allowed to change the meds without informing the spouse but I don't think they should. It would have been better if they had just raised the dosage of the Seroquel.
Linda Mc, My DH isn't on blood thinners....unless he was put on one without telling me!!!!
He now has to wear Depends or whatever the equivalent is for men. It seems he has lost control of his bladder.
My DH is in a secure memory facility because he took off from the ALF. I don't believe they have a psychiatrist affiliated with the facility. If they do they didn't tell me that either. lol.
Lots of recent changes. Today he wanted to know where his Mom and Dad were (died many, many years ago). First time he has asked about them. Then he walked in the dining room and saw his Mother's and Grandmother's china in the cabinet, and recognized it, asked if it was ours now. Said he remembered putting it away (?). Said he had to "find that man who painted our garage red - that wasn't the color I wanted". (garage not red). Been like this since about 1 p.m. - sundowning starting earlier now. In bed at 6 p.m. He will wake up in a couple of hours, get up and walk around and ask where all the people are sleeping; does this place have a kitchen, do you know what the rules are here, how long can we stay here.... This has been happening for about a week, every night, same questions. I usually just sit and talk to him and try to get inside his mind and go with the flow until he settles back down. Then he sleeps about 12 hours!
Vickie, sundowing is extremely difficult, my heart goes out to you ((hugs))
Jean, uuuggg! so sorry to read your update. Has there been any improvements with the medicine changes?
I am not sure about every facility, but where Lynn is I had to write a note stating that Lynn's medications could not be changed without my approval. Maybe that is something you can look into?
It's a hell of a ride isn't it? Not Disney land that's for sure *sigh*
My darling seems to change every week Jean...I am so sorry for what you are experiencing. The seroquel really helped my guy, but he was not violent just could not sit still for a second.
In a way as he is young, and if it is going to kill him, I want it to go fast. It sure seems to. Just today I noticed one of his eyes has a real sunken look, and is a different shape that the other. Now, instead of forgetting ONCE that he has had dinner, he came out THREE times the other night asking for it.
We do get "used" to it in spurts don't we? Most of the time now I don't cry as much as I did a year ago. Less than 2 years in to caregiving and I feel like an old hand at it.
Jean 21 We also had issues with Risperidol. He hed been on Citelopram (Celexa) for nearly a year when the Dr switched him to the Risperidol. It made him very agitated and argumentative. After 2 weeks he raised the dose but that didn't help. Two weeks after that I said I wanted hin back of the Citalopram. Since then (about a month) he has been calmer. We went through the violent stage about a year ago. He was smashing things and beating me about the head. That led me to call the police and they sent him to the hospital for evaluation. That is when the nurologist put him on the antidepressant.
Coco, my DH always forgets that he has eaten about an hour & a half after. The good news is that he doesn't eat much at one sitting. He will eat 2 medium pancakes for breakfast & then an hour & a half later ask when it's time to eat. Sometimes I feel like all I do is cook & clean up. He has been on 25mg of Seroquel for over a year. I give it to him at night & it helps him sleep & it calmed him down (he got very aggressive). Well the aggression started again about a month ago, so I started giving him another pill in the morning & after a week or so he is back to being pretty calm. I find myself crying when things happen, like when our oldest daughter came & made us dinner the evening before Father's Day. She was in the living room with him after dinner & I heard him ask her what her name was. I heard her tell him her name & I just lost it. I was glad I was in the kitchen so they coldn't see me cry. It breaks my heart that he doesn't remember our children. I know my time is coming.
Oh Elaine, it is so tragic, just heart wrenching! It is ok to cry, what you are experiencing is devastating!! ((big hugs of understanding))
I was stunned the first time Lynn called his oldest son the "nice guy who plows the yard". He hasn't known any of his children in years and years. But to be fair they rarely visited, if at all. And I remember the blow the first time he didn't know my name..... but Elaine I truly believe on some level, even when they can't recall our names, or that we are married, or even what a wife is, they DO still know us and they know we are special to them. They still remember us, they are just unable to communicate it.
Even it late stage, there are times that Lynn will still say my name, it gives me goosebumps! Often times he will ask me to marry him awwwwww. Yet other days he clearly knows I am his wife. If I wasn't always in his heart and memory, how else could he do these things? I firmly believe that we are always there, they just can't always "get" to us. So, we reach out to them ♥
Lloyd doesn't know anyone's names anymore, but he does know most people. His aunts always ask him to say their names when they see him. I really wish they wouldn't. They should be glad that he still recognizes them.
Amen to that Linda! There is a son who comes and visits him mom about once a month. More than half of the visit is spent by him and his wife drilling the poor woman about what their names are. She is sooo happy to see them, I want to scream what does it matter? She is happy to see you! Enjoy your visit. *sigh*
It is like people are curious, and often in a selfish way, to see how the AZ person can or cannot remember. Truthfully when Dado first got sick, I found myself questioning him and trying to prod answers out of him.
In our lives, as we gain such vast experience with this, we see this is not good. When people question him, I see him squirming, and finally he will retort I DON'T KNOW! in a curt tone. They say oh he is so angry, and I say, well, that is only when you ask too many questions.
Let these poor souls be, look beyond our morbid curiosity and just love and understand them.It breaks my heart to hear your story on this Linda and Nikki, and it is so close to home for me too.
Last week, his niece from Maui, (the daughter of his judgmental doubting sister), was on our island with her boyfriend for a couple days. They took the long drive out here to just say hello for awhile. It was so obvious the niece could NOT WAIT to leave, and she was impatient with him. When they were leaving I asked her observations.
She said, "He reminds me of Tutu Ethel" (His Mom that died from AD, the one they denied her condition, and she got no medications- it was awful.) And, I just know, the niece was sent here to spy for her Mom, to see if he really was unwell, or possessed by some demon.
And, it was SUCH a revelation to me, how when he first started going down, I saw his Mother in him, and I was so scared and angry. However, with all the good doctors and medications, I have learned to let that fear and anger go, and learned how to truly love. I am glad the niece came for that reason , to confirm the sameness of the disease his Mom had. Tutu is gone for 3 years now, dying from a fall.
DH is back on Seroquel twice a day and is doing better. The doctor added another pill and the name escapes me right now...I believe it started with a C. As long as he is doing better I am happy!
So many changes for us all. Jean glad the Seroquel is helping. When we tried it we wond up in ER (a couple of months ago). Risperidol is working for us now 1.5mg. Today hubby didn't recongize Daycare person. Will have to wake him on Monday mornings before I go to work so he can be reintroduced to her. Elaine I have had the "who are you" happen and just accept it, wasn't as devistating as I thought it would be. I figure he just remembered a younger, thinner beautiful women ......or another wife maybe??? Vickie I am so sorry about the Sundowning ......what a dance that is for me and I know how much fun it is NOT. And in my opinion People are STUPID to ask any ALZ person and question that requires their memory, idiots!!!
Changes in my dh are tiring beyond measure for me. He has to know where I am every minute. My dear sister is here and she tries to keep him watching ballgames with her so I can get some things done around the house. She has to go home Sat. and I'm asking for any help from you dear ones at Joan's. Any suggestions at all because I can't move without stepping on him. Poor dear he asked her about every 15 minutes when I went to water exercise where I was. I have some men who have volunteered to come sit with him while I go to exercise. Thank goodness there are several volunteers because after 3 hours of that the guy will always be "busy" the next time I call, I expect. Is there any meds that might help or is this just another stage I'll have to live through. He has virtually no short term memory now. Jean, my heart goes out to you. This is a tough job we all have. Just no real answers I guess as some things seem to work for one and not for someone else. Yes, when you've seen one az person you've seen one az person is so true.
Flo39, mine is the same way and no short term memory. Thankfully for you, you have some volunteers to come sit with him. I don't have that - but hopefully, I am planning on taking him to the ALZ Resepite Center beginning next week. Don't know if he will go, but will give it a try.
No, Coco but we are going to pcp this p.m. and I'll to ask him about Seroquel. My dd takes that for sleep, I think. She is bi-polar and takes a basket full of meds.
flo i hope your pcp rx's something to help his anxiety. it sounds like sundowning and obsessing over you as his security blanket. meds may help curtail this behaviour if he gets the right ones. seems so many try the seroquel with success. ativan is a miracle drug in my mind:) works like a charm for us! divvi
Flo, my husband takes seroquel twice a day...25mg in the am and 25mg in the pm. He takes it for agitation/anxiety. He has never been aggressive which I am greatly appreciative of because he has FTD. On days he is having more problems with his agitation/anxiety, I give him 1 mg of ativan and it works great for us. He usually takes one on days he attends day care or if we are going to a family get together. He is also on cymbalta, an antidepressant, that helps greatly with his restlessness too. So far, none of the medications he is on have made him sleepy at all.
My husband is mostly non-verbal. We can go days without him saying a word. I am very good at figuring out what he wants...he's an excellent pointer. He does follow me wherever I go. I have turned around and run into him many times. He is very quiet on his feet. I have gotten used to him setting on a stool behind me when I am getting dressed, doing my hair, etc.
Flo and Deb, isn't it just unnerving!!! They don't just follow. It's like they are right on top of you...have to be touching you. Ya know it's bad when you take them in the shower and they get your shampoo in their eyes!! Lloyd stands dead in the middle of the kitchen when I make supper or clean. I have to run around him constantly. You can sit him down, turn your back, and he is up again just that quick!
Thanks to all - at this moment he is standing in the doorway talking about ????????? poor dear. Our pcp gave me a sample dosage of Namenda yesterday. I don't see that was suggested by anyone but hopefully it will help. Of course just one 5 mg today and this week then increases weekly. Pcp also gave me a prescription to fill if this seems to help. My sister has to go home Sat. and I'll miss her so much. She is a great house guest and does try to get dh interested in something so I can get things done. Never in my life did I think I'd want to be away from him. But then again this is not him but someone else in his skin. So sad. I hate this disease!
Flo, I know that the Namenda helped my DH with his aggression (after taking him off of it twice & having him become agitated. After getting him back on it calmed him down) & others here have had good results with it (& of course, some have not). But it is worth a try. Since it helps calm aggression it might help your DH to calm down & sit down! My DH is also on Seroquel. He was taking 25mg at night, but a few weeks ago he started getting agitated again so I started giving him 25mg in the morning too & now he has calmed down again. I am lucky because he hasn't had any side affects to either med. Did you mention the Seroquel to your PCP? If so what did he say. If not & the Namenda doesn't seem to work (you have to give it time though) then you might call & ask about the Seroquel.
You are blessed with an angel for a sister. I know that you will miss her. I have a sister & I love her & she took care of our parents before they passed away (not at her house, but she did whatever needed to be done for them) BUT I could not ask her to come & help me with my DH because I know that she wouldn't be able to handle it. Give your sister a hug from me!
Flo, Lloyd has been on Namenda since 2009. At our neuro visit in March, we were told it doesn't do anything for him anymore and I tried to take him off. He really got cranked up. He now takes one 10mg per day and it seems to do the trick.
When I wanted to take my dh off Namenda (he has been on it since 2007) my neuro said no way. He told me they didn't know how long it would be effective because they only tested it for two or three years. So he is still on it.
My sister and I both thought that he was calmer yesterday. Today we've been doing errands and he's been in the car all a.m. and then to Wendy's for lunch. Thats a favorite for him - especially the "free" frosty. So now he is watching t.v. yeah! Hope this lasts for awhile.
Went to see DH after my doctor's appointment. I hate going there because it seems like each time I go he is a bit worse. He always walked upright and steady...now he is stooped over and unsteady. I sat with him while he ate lunch and it was slow going and very careful to get the food to his mouth. He was talking but I have no idea what he was saying, I think it was about the military again. The only thing I understood was him asking me about picking up "the boy".
I like that Pris! I was thinking about DH (not unusual) and I think one of the reasons I am starting to hate the visits is because he is so negative. I don't understand most of what he says but the parts I do he is complaining or talking about people and I don't know what I am supposed to say in response!
My dh had really gone down hill in a matter of weeks or less. I checked the stages and he has sailed through stage 6 in a matter of a few months. The only thing he doesn't have in stage 6 is he still is not incontinent.
His speech now is in stage 7....I can't understand a word he is saying if it is over 5 or 6 words. It is like 20 questions trying to figure out what he is saying.
His walking has gotten much worse and he is leaning forward...when I help him put on his polo shirt it doesn't drop down his back. I have to pull it off his sholders or it just stays up there resting on his shoulders....
The hospice gal that gives him his shower 3 times a week was shocked when she saw him yesterday after he had been at the ALF for two weeks while I had respite. He has lost more weight...8 pounds in 6 weeks. He is naturally a thin person...normal weight would be 142...now down to 132 in 6 months...(without clothes).
I am so upset this morning...it looks to me like he is going into the final stage. Maybe I am wrong. This all has happened so quick....
Judith I feel like my DH has gotten worse since he has been placed. I keep thinking and wondering how he would have been if I had kept him at home. I'll probably never know because I wouldn't be able to take care of him the way he is now.
JudithKB - my FIL was not incontinent until late in the disease. I guess that part of the brain was last to be affected.
I have been reading all your postings of how often they loose ground real fast when they go into a facility, trying to figure out the reason. I wonder if it is the stress of all the changes. At home they have routine and very little changes for them - just us. We see it if we go on trips how they often will loose ground. With the change they are using so much energy trying to adjust that it wipes them out. All you whose caregiving has ended for your spouse - how often you didn't realize how exhausted you were until it was over. Or as for Judith, she didn't really realize her exhaustion until she got respite. We still have the ability to regroup and go on. For our spouse they no longer have that ability. All the change exhaust them mentally and physically and they do not the ability to regroup, so they just keep loosing ground after that. Does this make sense?
With that said, this should not stop or deter ANYONE from taking respite or placing since it is for us that it is done.
ok this is my personal opinion solely but i think the loss of one on one care is what sends them into steep decline. or a change in medications that they dont tolerate to keep them compliant -without a consistent handson 24hr monitoring my dh would waste away in notime. he doesnt eat unless someone puts the food in his mouth or would drink unless someone put the glass to his lips. and then someone has to invest the amount of time it takes him to chew and swallow which can take time. i think in facilities its a limited amount of time each patient would get for all this considering the ration to aides/nurses. and yes i do believe some faciities may do better in this aspect than others i also agree with charlotte that the physical/emotional part of trying to adjust may alter the ability to cope. divvi
I keep telling myself...that I had to have that respite or I know I wouldn't have been able to continue. As far as my dh goes, if that is what has created his decline, then so be it...even though today it is so difficult to accept.
I will forever mark the beginning of the end for him was what happened when I put him in the ASL so I could get rest. But, I must face, this time would be happening anyway...maybe sooner then I thought, but it would happen.
He says he wants to take a nap and he said take me there. He can't even remember where the bed is and then when I walk him to the bedroom...he tried yesterday to get into bed on the wrong side.
The hospice aid that was here yesterday put the tooth paste on his tooth brush and then he said, what do I do with this?
His speech is the thing that really throws me...I can't understand most of what he is trying to tell me. Also, he keeps telling me he is cold....does anyone else have the problem with their spouse being cold? It is hot here.
I was really surprised that he lost weight while at the ALF since they got him up for breakfast and they made sure he ate lunch and dinner. At home, because he slept so much he usually ate only twice a day. To me the worse sign in his decline is the continual lose of weight.
Judith, yes, though it is very hot here, Dado is always taking his jacket to go outside, something he never used to do. Personally, I never noticed that until he started taking the seroquel.
SO SO sorry for your anguish.
I am so thrown off by this downhill slide after respite, have read opinions and taken it in. To me, I would think, it would mainly be changes in the meds. Maybe Charlotte has it right too, that they cannot handle changes.
Now mine is not as far along as yours..however I STILL see so many of the same things. Same age too. He has very few sentences he can say, and has not been able to converse for at least a year. It seems like when the nurse is here he makes more effort.
His legs have been shaking upon standing more and more, like in the beginning of the disease, before meds. No one has give me a clear reason for this parkinson like symptom . AND his eyes, are starting to look sunken. Just this past couple of weeks I see he forgets things IMMEDIATELY after I tell him.
I too am sinking, trying not to, in to being depressed, despite being able to stay "up" for some months. Screamed in the car LOUD on the way home the other day, SCREAMED that I was NOT READY to go home yet, 10 hours was NOT enough.
You are taking the right approach to your dh's decline. IT WOULD HAVE HAPPENED ANYWAY just as you say.
My dh is not making sense a lot of the time when he speaks. I know how frustrating that can be.
I will say he should go to the kitchen and he goes opposite way to bedroom. There are times when they are completely disconnected. Other times they show stability.
I hear my dh complaining of being cold also. Has done that for a long time. If your dh is losing weight and eating fairly well, then his metabolism is such that his body isn't using the nutrients properly.
Right now my dh really feasts on baked goods. He isn't diabetic so I let him. I let him eat the sweets but he has to have his meal first. The antidepressant increases his appetite just like the doctor said it would so I am not worried.
Judith, I have had the same thoughts as you have, but if you want to look on the other side of the picture, you could have been so tired without the break that you could have had an accident with him. For example, you might not have moved fast enough to wipe up a spill before he slipped in it and broke his hip. There is no possible way the dementia process can be slowed down. It's a tap dance all the way trying to handle it as best we can, but the end result is the same. The only thing you have any control of is that you aren't destroyed in the meantime. Even knowing that you have done everything you can to protect yourself, the price you pay is staggering, and in the meantime, you simply must not listen to any guilt feelings. If it helps, think of these thoughts as the devil speaking and put him behind you. Yes, the end stage can come very quickly. It came that way with Eric, and I was with him every day. That momentum cannot be stopped. Please take care of yourself in every possible way in the meantime.