I don't mean to be ignorant here, but my mother is FINALLY doing significantly better. She's been compliant with taking her meds in the hospital, she's been bonding with some caretakers, she's been smiling and happy. She even seemed more "with it" the other day. Her appetite is still poor, but she's eating. The major difference is that she is now getting Risperdal injections every two weeks. That and the fact that she is taking her other meds now. Really, can this be what's making the difference? I just wonder if this is a temporary thing and I am getting my hopes up just to be dashed again.

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The major difference is that she is now getting Risperdal injections every two weeks. That and the fact that she is taking her other meds now. Really, can this be what's making the difference?

Yes, meds can make that much difference.

Of course, only time will tell w/ your mom if this is her "new normal" (fingers crossed!)....and know that she may well need additional changes in a few months or a year.

They did for my mother - and it's been almost 4 years now!

I, like you, kept wondering how one little pill could make so much difference - I never wouldhave believed it had I not lived it myself. For us, it was risperdal.

Diane

I am starting to wonder if she can actually go back home with home care, or even an ALF and make some friends and have some fun and good quality of life! I have to just keep telling myself to take it one day at a time. It's so nice to have a little hope, yet each time I get a glimmer of hope I am let down. Each time I get let down it hurts more and more.

I can't imagine thinking we can have a few good years. A few good YEARS! YEARS! Ok, can't get too excited.

I know how you feel, and I hesitate to reply, only because I don't want to get your hopes up too high, if indeed your mom's behavioral change will be short lived.

But... I'm replying anyway. When my mom was hospitalized, I thought she would NEVER go home again. She did - and managed on her own for 2 more years. For the past two years she has been in an ALF - and while it was a traumatic move for her, she adjusted fairly quickly. And now she has even been telling me how glad she is that I found such a great place for her.

She has no idea why she is there, no idea that she couldn't function on her own, and no idea that it is anything other than a nice senior apartment with lots of activities. But she is HAPPY!

Risperdal was nothing short of a miracle drug for her. We've tried weaning her off of it, and old behaviors begin to reappear very quickly. So there is no doubt that the med is working for her.

I'm very lucky, and I hope you are too.

Diane

All I can say is yes, yes, yes. Medication can make all the difference in your lo.
As to how much function they are able to regain is varied by each person. My mother still can't live on her own but she is sure a lot happier and able to enjoy a little more.
Good Luck
Sheryl

It is so heatwarming to see that your mother is doing better, Marj. It has been such a difficult road for you and your sister. With luck, your persitence is being rewarded. We'll all be keeping our fingers crossed that your mother's progress will continue. Hope you'll be able to finally enjoy what's forecasted to be a beautiful fall weekend!

I just can't believe the difference in my mother after getting the Risperdal injection. Even her nurses can't believe the difference in her! I so hope this can last. If she can really be stabilized and happy, then maybe we don't need a nursing home just yet. There's a dementia group home in walking distance from my sister. All I want is for my mother to still have some quality to her life and some happiness.

I will speak to her social worker on Monday. I really hope I haven't gotten my hopes up too much. FINALLY! After MONTHS of this.

Marj, Yes the drugs can make a huge difference. Now I don't have experience on the ALZ side yet, as mom just stepped into drug arena for her early stage disease. In MIL case, she had issues with depression and just wouldn't take any meds. We saw the horrible side of her illness -- very sad, couldn't make her meals, didn't want to be around people, etc, etc.

In the end, she finally saw the light and did take the anti-depressant med. After 2 weeks she was a NEW PERSON....very NEW!!! It was like a load of confusion and depression was lifed off her shoulders. After 2 yrs she's doing great, outside of taking more meds for her pain due to back/hip.

My experience is yes meds can truly bring our "happy and high functioning" LO back to life. Don't know for how long, but in our case it's been 2 years of our NEW MIL back with us.

Hope you have a long road to happiness with you mom.... hang in there!

Oh Marj, I am so glad to hear this news! What a journey this has been for you. It is truly a blessing to hear that your mom is being helped so much by the medications. Here's to HOPE....hope that it lasts and works for a long time. You all deserve a respite. Best of luck and please keep us posted...as I know you will!

PS Be prepared for some bumps, you know how this disease is...but it doesnt mean it will be a total relapse. Have faith.

Mari

Yipee ! Meds are the answer. And I understand not wanting to get your hopes up. She has to stay on her meds. Maybe she can go to the dementia home near your sister for now, while waiting 2 yrs for the NH you want. If everything works out in NJ, and her name reaches the top, you can decline. I really hope this is beginning of a new normal for you and your Mom!

Blessings!

Marj,

Another voice to add to the YES. In the next couple of months, I need to get my mom back to a neuropsych doctor to get her meds adjusted. But the Aricept-Zyprexa combination restored her to about 80%.

She's slipping now after six months on lower (but not completely low) doses of both meds, but I feel confident that they can be adjusted upwards a little.

A dear friend in San Diego told me early on in this nightmare that the sooner someone gets on the meds, the longer they tend to be effective. Because of sibling issues she faced ("NO MEDS!"), they didn't get help for her mom until too late.......

I suspect she's also getting good vibes. From you. Because you feel good about her progress. And she senses that. --Jim

I so hope this really lasts. Our issues in the past had to do with my mother seriously not recognizing anything was wrong and she was REFUSING any meds. By the time we got her into the hospital, it became trial and error to find the "cocktail".

Don't get me wrong, she's not so much better where she's not exhibiting symptoms, but she's happy and she's compliant. She seems a little clearer. She's still confused, she still wanders and her memory is still mucked up, but she seems to be remembering things that she had forgotten (i.e. my father).

happiness is such a big deal, it is the quality of our lives.

quote:

Risperdal

I have a question please. My aunt is taking Haloperidol along with Aricept, Namenda, and Prozac. Question is why do AD patients get prescribed these anti-psychotic drugs like Risperdal and Haloperidol when they clearly state they should not be used to treat patients with AD or dementia.
Don't get me wrong, since she's been on the Haloperidol she doesn't have rages anymore, which we are extremely thankful for. I research every med all of us take in this 3 house family. Initially we were hesitant to start her on the Haloperidol because we were concerned she'd be a Zombie from the way it was described what it was for and such. I'm just curious.

These meds have a black box warning and they can have an increased risk of death with dementia patients. My mother's doc was SOOOO careful about doing the Risperdal. I was seriously put through the ringer about it. I have to give permission and in front of a witness.

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careful about doing the Risperdal. I was seriously put through the ringer about it. I have to give permission and in front of a witness.

Hmmmm, doc (GP) didn't say nutin' to me like that. Then again I feel like he and I got off on the wrong foot from the first visit. The meds DO seem to be helping though. 'Cept because we haven't had a vehicle for about a month now she seems to be getting detached more. Going to try and transfer her this week to another Adult Daycare that will come and pick her up a couple times a week. We all agree it might help her to have that social contact, even if it is with strangers.

Marjk - I was so hoping that once they got your mom's meds regulated that this would happen!! What was the saying - don't look a gifthorse in the mouth??? Whatever, for however long - enjoy it! You know we're all praying that this turnaround is permanent. And ... enjoy your cruise - you soooo deserve it! Have an umbrella drink for me - we used to cruise with mom every year and I really miss it.
Marie

I thought I'd add my medication experience.

It's my experience that it's more than what the medication does, it's what it leads to.

E.g. it can calm our internal agitation down, so that we can think better, and make better conversation, better cooperation. It can help us get some sleep, which leads to lots of cognitive improvement usually.

I'm so happy I could burst! She doesn't need the special behavioral nursing home anymore!!!!!!!!!! We're still nervous about ALF's and the social worker agrees, but now we can get her into a regular nursing home. She still needs supervision for now but she is doing SO MUCH BETTER! She's socializing, she's smiling, she's having real conversations. Risperdal injectable has been the miracle drug for us! Hopefully the social worker can get my mother into the NH quickly, and I think it will happen quickly. FOUR MONTHS! It took four months to get her stabilized. I never thought this would happen.

Marj and Pieberry,
I'm so glad that your Mom is doing so much better. That's awesome!

Awesome, Marj! I'm so relieved for you! I'm sure you and Pieberry are just thrilled.

From my personal experience with Mom, it seemed easier for her to adjust to the NH from the hospital than it was going to the ALF. I think because it feels more like a hospital, it makes the orientation a bit easier. I hope the same is true with your mom.

For those with LOs on risperdal, what dosage seems to work for your LO?

My Mother was prescribed Lexapro for her anxiety due to this situation. We went through hell at the originally prescribed dosage of 10mg daily.
It was way too much for her, she did well at about 3.33 mg for a yr but is now up to 5mg.
She is getting tired of the "brain zaps" though, and her hair loss is somewhat alarming to me but she doesn't care.
I'd LOVE to get her off this stuff due to those 2 side effects.

I honestly don't know what the dosage of Risperdal is when they do the injectable. I didn't ask. I know she was on quite a high dosage of Seroquel and it wasn't working. She's still on the Depakote sprinkles and Namenda. She had been on Risperdal oral for awhile and it just wasn't working.

I do hope she adjusts to the NH. She's finally asking why she's there. Since June she hasn't asked once why she was out of her home. Even when she was home she never asked once why she had home care. Suddenly she's asking. On Friday I took off from work and I am going to check out the nursing home. Nope, I hadn't checked it out yet because we didn't think she would be there so soon. I just know that I checked out the ones by me and they are impossible to get into. The one we are placing her in is on the same grounds as the hospital. So far the whole organization there has been wonderful so I have to assume this place will be too. It does have a good reputation. I will see for myself on Friday.

Now I am nervous that she might not need the dementia wing, maybe she does, I don't know. I hope the dementia wing of the NH doesn't have all the residents at very late stages, even though my mother isn't exactly in early stages. If the meds can keep her active and social for a year or two (I know, I'm very optimistic) then maybe she could be in the regular part of the NH. I have so many questions and I am leaving for vacation in 6 days! WHY NOW?!?!?!?!?!?

quote:

Originally posted by Marjk:
I am starting to wonder if she can actually go back home with home care, or even an ALF and make some friends and have some fun and good quality of life! I have to just keep telling myself to take it one day at a time. It's so nice to have a little hope, yet each time I get a glimmer of hope I am let down. Each time I get let down it hurts more and more.

I can't imagine thinking we can have a few good years. A few good YEARS! YEARS! Ok, can't get too excited.

Yes, take it one day at a time. I hate to pour water on you, but we all know that a miracle one day may be turned around the next. I still do this with my dad. I'm glad she's doing better, really. I hope she maintains.

My feet are dancing for joy with you!!! I can feel the relief in your post. I'll keep my fingers crossed that this continues and that the NH you visit on Friday is totally perfect. I may take being at sea a day or two for your mind to accept "vacation" - but you need it so you can come back refreshed and recharged for what lies ahead. Enjoy your vacation as much as you're enjoying mom's turn-around.
Marie

I'm trying to get excited for vacation. I haven't been away for two years. I'm desperate to get my school papers finished by the weekend, the nursing home stuff done, work finished and then attempt to pack. I'm sure it will take me a few days to relax. I just hate the timing of everything but I am so happy that my mother is doing better. Now I feel really bad that I will be away for Thanksgiving.

quote:

Originally posted by Pauline1950:

quote:

Risperdal

I have a question please. My aunt is taking Haloperidol along with Aricept, Namenda, and Prozac. Question is why do AD patients get prescribed these anti-psychotic drugs like Risperdal and Haloperidol when they clearly state they should not be used to treat patients with AD or dementia.
Don't get me wrong, since she's been on the Haloperidol she doesn't have rages anymore, which we are extremely thankful for. I research every med all of us take in this 3 house family. Initially we were hesitant to start her on the Haloperidol because we were concerned she'd be a Zombie from the way it was described what it was for and such. I'm just curious.

Two reasons:

1) There is a slightly larger risk of earlier death with these meds in dementia patients.

2) You yourself provided the second reason - quality of life for the person with dementia, not to mention their CGs. What good is a slightly longer life if our ADLOs are in emotional hell?

"Since she's been on the Haloperidol she doesn't have rages anymore."

Amen and amen, Grassflower. I was fortunate Mom never had those rages. Dad is starting his journey and I fully expect those -- he had them pre-disease, I doubt he'll become lovable and saintly later. I already know my decision -- if I shorten his life by a year by choosing to medicate him so that the year he has left is less horrible for him -- I'll go for it in a heartbeat. And it is a small chance that it would affect his lifespan anyway. Mental pain -- depression, anxiety, anger -- is just as, if not more, painful than physical pain such as a bad back or broken hip. I would not dream of allowing a LO suffer pain from a broken hip because of a small chance of a shortened life (and read the fine print on your drugs -- EVERYTHING has nasty potential side effects. My SIL became seriously ill three days before her wedding -- too much Tylenol for her juvenile arthritis.). So why would I allow that same LO to suffer mental pain?

I would gladly risk shortening my mother's life if what she has left of it means quality. I would do that for myself too.

To honestly see what my mother has been through these past four to five months, there was NO quality of life there for her. She could go on and on for years like that. It's heartbreaking to see someone like that, especially someone you care about.

Those rages, the anger, the paranoia, the delusions, no affect, no socializing, just scared, almost like caged animals. If these meds can give my mother a good couple of years, I'm all for the risks.