I broke down while talking to my neurologist yesterday. I was thanking him for backing me up and putting Lynn on the seroquel. It has been the miracle I have been hoping for. Of course it isn't a cure, but it has given us the gift of having Lynn's personality back! The sundowning has stopped completely! He hasn't had any outbursts, NONE! He is happy again, loving and helpful. Everyone who has seen him has commented on it, he is like his ol self again and I am just so grateful!
As I mentioned my sister and her two children live with us now. He of course was always sweet to them, he loves those kids with all his heart. He only ever had issues with me. But, even so, my sister was reluctant to "watch" him so I could get a break. Now though he is such a joy to be around, she has been "watching" him every day so I can take the kids and do things like we use to. She joked it was like swapping kids for the day. This "free" time has made such a difference to me and for me. I knew I needed it, I just didn't realize how desperately.
Though I know Lynn will continue to decline, I now feel I can handle it. It wasn't the fear of changing diapers etc that frightened me, it was how drastically his personality changed. There were always glimpses of "my Lynn" in the past, but now he is "my Lynn" every day, all day!! I am so happy I could burst :) The "AD devil" is gone! Good riddance! Adios! Hasta la vista!
Why don't they give this to all the others who have the rage and outbursts? Are there side effects or does it not work for everybody. So happy for you Nikki. Joan, would this help Sid?
The FDA has asked manufacturers to include a “black box” warning about the risks and a reminder that they are not approved to treat dementia symptoms. The warning states:
“Elderly patients with dementia-related psychosis treated with atypical antipsychotic drugs are at an increased risk of death compared to placebo.”
When I first asked his old VA doctor for help he made me feel like a lepar for wanting to drug Lynn. Well I do NOT want to drug him, I want to HELP HIM, and in helping him, also help my stress levels and stop the TIA strokes! My neuro put things in perspective for me, the black box warning is scary, but it IS compared to a placebo = sugar pill, so ANYTHING would be an increased risk. AD is terminal, it HAS to be about quality of life.
I am thrilled for you Nikki. enjoy these moments to the f ullest! what a relief to have your sis in with you to help share the burdens. seroquel has been a lifesaver for many AD patients. but some like mine, did not respond to it well for the aggitation and it made him much much worse. some are more sensitive to it like alot of these AD drugs. it does come with some drawbacks like we had my DH bloodsugar levels went to super high and we had to check his glucose levels for diebetes every morning for about 8mos after using it for a few months. he is fine now..it was listed as one of the possible side effects. we used namenda for a long time then even that gave him issues. i hear so many good stories of users so i am glad it works for most. divvi
oh and another thing the doctor said that made the choice easier for me; he said IF the stress made it so bad I did have to place Lynn in a NH that they would use these drugs and at much higher doses too! So I figured if he was going to be on them anyways, why not try them out at home and see how it works. It has been just shy of a miracle in my book! It has made THE difference on me being able to keep him home, instead of a NH.
Thanks Divvi! My sister and the kids are victims of domestic violence. They lost their home so I wanted to offer them a safe haven. Lynn loves them so much and I knew he would be wonderful with them, and knew too it would be good for Lynn having them here. Now it is just even better! More than I ever dare hope for.
My lil niece has horrible Juvenile diabetes, so I was concerned when I read seroquel could raise the glucose levels. But my doc explained Lynn had little risk where he has no high risk factors to begin with. He also showed me the stats where the increase was only slightly elevated over the placebo. We have everything here to keep an eye on it just in case though
I am sorry to hear it didn't work for your husband. Were you able to find anything that helped him? I know for me, the loss of personality - the "AD devil" was the single worse thing. I often said it would be easier to lose him to death. Just horrible horrible times. Behind us now, thank God!
yes it may be good thing to just test glucose once a month just to be sure. DH had no precursors either it just went skyhigh all of a sudden,and it was a pain to have him on a prediebetic meal plan to control it. no meds but he loves his sugars so it was hard. i am glad its over but it did take a few months to stabilize again once we got off. amazing how it just went back to normal after a few months off it. we use ativan for any aggitation issues if they crop up, but so far no need. it makes him loopy but with a smile and a super mini dose...so i dont use it unless it would be for ER visits or when they have to catheter him for uti..glad you have family that can help out. divvi
Thanks Joan. My neuro did talk with me about Risperdal as well. He went with his own personal experience and said we would try him on the seroquel first. Luckily it worked right from the start for us. He is only on .25 mg at night. If it starts to lose its effectiveness we can increase it as needed, or change drugs. Everyone warned me about all sorts of thing with this drug, but I can't say anything bad about it! He is so much happier, not pacing and acting like he is uncomfortable in his own skin!! He is much more rested, doesn't sleep any more than he did... etc etc
I am now angry at his old doctor for not helping us when I was in his office bawling and begging for help. I am angry at myself too, for not going with my gut and letting that doctor beat me down. Lynn CLEARLY needed help, I clearly needed help dealing with it all. All I know for sure, is I will never let anyone ever make me feel bad about it again. All I ever wanted was the same tools every nursing home in this country has, medication not to sedate, but to HELP "my" patient!
Nikki - I am so happy for you. You deserve it! I wish I could report the same. We started Seroquel a few days ago. The up and down at night is not as bad, but still there. I'm sure something else MAJOR is going on however. My DH has been up just a little bit over an hour all day today. At 4 PM he started to shave, but quit and went back to sleep. I dread what tonight will be like after sleeping soundly almost all day...
Thanks Divvi, I will make sure we keep a close eye on it just in case. My sis is a bit of a nut about checking our levels anyways. If she feels I am drinking too much water, out comes the pricker lol I am so glad to hear your husband doesn't have the behavior issues..whew!
I haven't had any help at all, ever. so this is so refreshing! I DO understand why she didn't feel comfortable before watching him if I left. But now, since the seroquel, he is back to his ol self and she says they have a great time! No kids fighting LOL So it is working out beautifully for us, and I intend to take full advantage of it while it is here!!
by the way, dont kid yourself! my husband was a bad as any of them listed here! it was those first early 2yrs after dx i could have wrung his neck myself many times. he was a total A**..if you get my drift, like many here..hahah..luckily when they move into the 5-6stages they are so much more complacent and easy to manage. those days were nightmares like joans. i didn drug him with the rx they gave me and glad to do it back then for some peace and quiet..:) thank goodness for doctors who listening to our pleas for help. divvi
Nikki-I am so happy for you both. My husband was on low dose seroquel and it gave us a year of almost peace. Sadly it lost its effect after a while. Went from 25 mg at night to 200 mg three times a day. He is still on it and it is preventing the rages. Unfortunately we have also lost his personality. A trade off.
Oh goodness, How horrible bluedaze! Seroquel gave us back Lynn's personlity. I am glad it is still preventing your husbands rages, but Is there another drug they could try? I was wondering if a new drug wouldn't require such a high dose?
Divvi, I choked on my soda when I read they are more complacent when they move into stage 5-6. Lynn is in late stage 6/ early 7.... and he never left the aggression behind. If anything he got worse! I am sure the sundowning played a roll in that as well.
My own medical history has made me very aware that if we aren't getting the help we need, it is time to fire the doctor and find a new one. The funny thing is that I did that in California a couple of times. What I didn't do was fire the entire medical group. But I should have.
If I wasn't already aware of this, I'd have learned it here on this forum.
Lynn was my champion through my health battles. I did learn to keep looking and searching until I found a doctor I clicked with. I am not sure why I let that VA doctor intimidate me, but he sure did. He made me feel horrible for asking for help, told me I needed to just put him in a home. Like I said, I got so fed up and knew there just HAD to be something that could help us, so I did call the commissioner and told him about my ordeal these past 3 years with this doctor and Lynn's sundowning. We have been to the VA twice since, and haven't seen that doctor, maybe they fired him! I sure hope so.
Nikki, yes there are times when placing a violent patient is the only answer. But it isn't the first answer.
I know that after my one violent episode I was told that if it happened again to call 911 and have them send someone to take him to the hospital, but that would be to try out medications and get him calm again, not to keep him there forever without trying something first.
Boy do I think that all of us caregivers need to roar. That includes the husbands among us.
Nikki, wow, i didnt realize they retain aggressiveness well into that stage. i assumed because mine did, they get over it, maybe yours lasted longer into the latter stage, as you didnt start the meds until so late?? i am glad hes so much better now. divvi
I'm not sure divvi. He had periods of mood and behavior problems, those were in the days when he knew he was diagnosed with AD. It wasn't so bad that he needed to be medicated. We all can imagine how hard this period must be for them. The true hell began later, 3 years ago when he "developed" severe sundowning. By then he was already in stage 5.
Mya, some drugs work for some patients but not for others -- you sometimes have to "experiment" to find the right drug, and the right dosage. And, unfortunately, as Nikki found out, there are doctors (and plenty of laymen) who think that using these drugs is somehow wrong, that they constitute a chemical restraint, and rob the patient of his "real self". Idiots. The right drug given at the right dose gives the patient back his real self, and relieves a lot of unnecessary suffering.
Joan, lots of caregivers on "the other site" have reported success with low dose of Risperdal -- they think it's the same kind of miracle seroquel was for Nikki's husband.
"Loss of the patient's personality" after prolonged use of an anti-psychotic may not be due to the drug. Unfortunately, that is a pretty natural progression of the AD (or FTD) itself, even in patients who never experience rages or have to go on anti-psychotics.