As expected (sort of), my mother is not adjusting to the ALF. She is violent and attacking people. I spoke to numerous nursing homes and NONE will take her with these kinds of behavioral issues. She's going to end up back in the hospital, probably any day now. The hospital has a special SNF for people with behavioral issues. Of course there is a waiting list, although only one person in front of my mother. Even there, there is a chance that she will have to be transferred to a long term care geriatric pysch unit. I thought the cost of SNF's were high, oh boy nothing compares to the cost of this. Back to the elder care attorney again, we don't know how to do this with her long term care insurance, pension and SS. I guess we have to sign everything over to the facility once her funds get really low.

How can a woman who wouldn't even kill a spider, end up so violent like this?

And by the way, she really is incontinent now.

Hi - it seems like her med's need to be adjusted. After that, her behaviors will adjust but moving can bring out the worst behaviors and any good Alz. nh knows this. I wouldn't give up on placing her. It does sound like she'll need more attention than an ALF.

Hang in there - and you don't need to sign EVERYthing over to the facility. I did with SS as I couldn't see being a "represenative" as anything but a paperwork nightmare for me. But I do keep other funds separate from that. If you sign everything over, you won't see any bills and lose control over information that you'll want about what's happening to your Mom.
I am very sorry for where she's at now. This disease does terrible things to sweet, loving people every day.
Thinking of you - one step at a time....

Oh marj I hate to hear this..but I agree with Beth that moving our LO's can throw a wrench into the situation..please don't sign over everything yet...give it time sweetie...it is so hard on you I know but she needs time and meds have to be adjusted to help her with these changes...I personally have never experienced the violent outbursts so I don't know what to suggest...I am sure grassflower will know..and I have heard on this forum about seroquel helping with this...i think your mom has already been on this or is on it now???

Take some deep breaths...try not to rush into anything...I don't have expereince with ALF..only NH..and dad has been in three of them..i have seen plenty of patients in NH that do have more violent and raging symptoms...keep checking...an advocate's work is never done.

I am praying for you and please keep us posted! I am so sorry you are going thru this..you are strong and you are smart....and all here will help you!

kim

She was doing so good in the hospital. Some of it has to be that she is adjusting, or trying to.
Do you think it would help her to adjust to the ALF if you or your sister stayed with her at the ALF over the weekend? She'd still be in a new place, but she'd be with people she loves and trusts. I was thinking that maybe that might help her adjust and improve her behavior.
I'm so sorry she is not adjusting to the ALF thus far.

We're not signing anything over yet. I figure we have a good five years of care for her and to be honest, I don't think she's going to last another five years.

Everyone keeps mentioning adjusting the meds, but she won't take them and she is refusing to eat again so they can't hide the meds in her food. They try behavioral techniques with her, but those aren't working either.

She actually bit someone today!

I understand the thoughts of the ALF. She can't go on attacking people, especially other residents. That is the reason the nursing homes won't take her in with a history of violence.

She tried to hit my sister yesterday. Seeing us makes her more agitated. I already spoke to the social worker at the hospital to give her a head's up that my mother will most likely be sent back there. She was doing better at the hospital, for the last week only. They were concerned that this might happen, they didn't hide that fact from me. Even the ALF told me not to pay for October yet "just in case". They also had some kind of inkling that this might happen.

Believe me if I knew that me being there would calm her down, I would be there right now. Seeing my sister or me just makes things worse.

I don't think I've ever been this exhausted in my life.

The stupid nurse at the ALF really freaked me out for apparently no reason. Yes, my mother hit and bit. According to the director, they are NOT kicking her out, not yet at least. She said my mother needs some time to adjust and they have had worse there that they were able to calm down. They pulvarized her meds and hid them in her juice. If she wouldn't eat, she was at least still drinking. They are really working with her. I had already spoken to the social worker at the hospital and gave her a head's up that my mother was probably going to be back there. Luckily she knows the director of the ALF and they spoke today. No worries for now.

If she can somehow get her meds regularly, I think she will calm down (unless this is wishful thinking again).

Oh Marj -- what a roller coaster ride you have had! Just reading this post makes me upset.

I am praying for your mom, that she will find some inner peace and adjust to the ALF. Don't give up. I am so glad the ALF is willing to work with your mom and give her a chance to adjust. At least they recognize it takes some time.

Shout out from the choir here -- but there are no words horrible enough to describe this disease!

Hang in there Marj!

Mari

quote:

Originally posted by Marjk:
They pulvarized her meds and hid them in her juice. If she wouldn't eat, she was at least still drinking.
If she can somehow get her meds regularly, I think she will calm down (unless this is wishful thinking again).

If she catches on to the juice trick could the meds be compounded into a salve or cream? That could be rubbed into her skin Or maybe put on a patch which could be sneaked onto her back?
Pharmacists compound meds into salves for cats quite frequently - at least around here. I don't know if it can be done for humans or if there are limits on the kinds of meds.
Just my two cents.
K

There was a longtime poster/caregiver on this board called Flintysooner. He took care of his elderly father at home. He mentioned specifically that he had a cream or salve medication that had been prescribed for his father. This medication would calm him down during times when he was so riled up that he would not take medication. The caregiver wears gloves while rubbing the cream on the patient's forearm. This can even be done in a situation where the patient is physically resisting.

I don't remember which medication it was, but the point was that the initial dosage given on the skin would calm him down enough so that he would be able to take his usual medications and receive other kinds of needed care.

I am going to speak to her physician about that kind of cream or salve. Rubbing her hands and feet is something that she still let's us do. Of course right now she's so mad at me and my sister that she won't let us do it right now.

I don't think she has the cognitive ability anymore to realize the meds are in her juice. I don't think she realizes that it might be in her food either, I think she's not eating because it's the one thing she can still control. If we dangle a Reece's Peanut Butter Cup in front of her, she will gobble it up and want more. I wonder if we could hide meds in there?

One of the reasons we jumped through hoops to get her into this Dementia only ALF is because of their reputation of handling and their knowledge of people with dementia. I think the nurse I spoke to today was having a bad day. The other nurse is much calmer. The nursing assistants and the caregivers also seem to be much more on the ball than this nurse. This ALF also has a massage therapist that comes in weekly, one who specializes in massage for people with dementia. I think she comes on Mondays. I wonder if my mother will let her massage her. I am a big believer in the power of massage for so many things.

As you can see from my posts, this has been such a roller coaster for me. I can accept and deal with the cognitive issues, but the aggression and behavioral issues are a real nightmare! I've even accepted the fact that she really is incontinent now.

I found Flintysooner's post. I am going to ask about the ABHR cream, of course I will look it up first. Thanks for telling me about this.

"Our hospice nurse suggested using ABHR cream for my dad. I can apply it to the inside of his wrists or behind his knees. And I can usually apply it even when he is resisting. ABHR stands for Ativan-Benadryl-Haldol-Reglan. It worked amazingly well for my dad.I think it took a couple of days maybe before it actually calmed him down. What a blessing for both of us."

Nutella! Chocolate and peanut butter, and it's a thick mixture that lends itself well to blending in something pulverized.

Nutella, great idea. I bet she would love it on toast. I would love it on toast. I think I might buy myself some right now. Stress eating again.

Marjk-
I've not (yet) gone through the awful behavioral issues that you've been dealing with. But I just want to tell you my heart goes out to you and your mom. Here you are, trying to do the very best for your mom, and this evil disease just keeps throwing more at you.
You are a wonderful daughter.

Because - I hope you never go through these behavior problems with your mom. They make dealing with the disease so much worse. The friends of mine who did have parents with the disease never had to deal with behavior issues like this. I'm the lucky one!

Interesting side note, One of the nursing home people I spoke to today asked me if my mother was very intelligent. Strange question, but yes she was. She was actually in Mensa. The NH woman told me that she has noticed that the highly intelligent people who end up with dementia tend to be the more aggressive and violent ones. They seem to not be able to deal with losing cognitive ability and they tend to act out this way. It's not fact (at least not that I know of) but it's something that she noticed in her years of working in the NH.

Ooh, dinner should be over now. Time to call and see if she ate.

P.S. I have a MAD MAD craving for Nutella now. I will definitely pick some up on my dog walk tonight. If I can't find it in the deli, then potato chips it will be.

P.S.S. Went to the doctor this week. Lost 7 pounds. Imagine how much more I could lose without the stress eating!

Hospice gives families haldol and ativan in liquid form with a measured dropper. The meds are just released in the cheek.

Your mother's behavior depends on her getting the calming meds.

Even if you don't use hospice, you could call one and ask about how you can get the meds in this form.

This too will pass...

Every doctor we have taken her to swears this behavior will pass. I don't want her to slip to the next stage, but she needs to get out of this one. If she gets her meds regularly, I'm sure she will calm down. This ALF does have Hospice care, I'm sure they can ask them for suggestions. So far they seem to be working very creatively with her and it worked, for today.

I just took two Tylenol PM. Everything aches and I desperately need sleep. I have a final to take tomorrow and I barely was able to study. Nutella and/or potato chips will wait until tomorrow. Of course I keep saying that, which is probably why I lost 7 pounds.

Good night everyone. And thanks for the support.

Hi Marj,

I'm so sorry you're on such a roller coaster with your Mom. I experienced something similar with my Dad last November. He started acting out - hitting staff, trying to get out windows and doors, etc. He even thought his roommate was a cow and tried to milk him(LOL!!!!). He was reliving his childhood and young adulthood when he lived on a farm and had to milk the cows twice a day.

My father has suffered from depression for most of his life and the change of seasons, particularly the fall and winter, have always been very difficult for him. My father ended up in the only geri-psych ward in the county - was there for over a week. The psychiatrist prescribed a small dose of Abilify and it has really seemed to help him. I am familiar with this drug - my oldest son has been on it for a few years because he has bipolar disorder and it regulates his mood swings, particularly manic behavior. It has been a lifesaver for my son.

My Dad and Mom have had only one violent episode, which was in June. My father was trying to adjust my mom in her wheelchair - she had slumped down in the chair. My mom has Parkinson's disease with dementia and her voice has become extremely soft from the Parkinson's. My father, who is very hard of hearing, apparently did not hear my mom and my mom bit him on the hand. I suspect that my mom didn't want to be adjusted in the chair and that was the only way she could get his attention. Dad responded by hitting Mom on the side of the head. As a result, my Mom was moved to a different floor in the NH, while my Dad stayed on the locked dementia floor.

My father still gets agitated and anxious but so far nothing like last November. You are right - your Mom will calm down once she is on the right meds and takes them on a regular basis.

I wish you the best of luck on your final exam tomorrow and a good night's rest!!

Marj,

I'm so sorry it's turning into another "down" slope on the roller coaster. Let's hope this too will pass.

I'm saying a prayer for a good night's rest for you and a good test result tomorrow.

Hugs & prayers,

Marjk,
If you don't mind me asking, what medications did the hospital doctors prescribe while she was there? Did they send anything "extra" for the transition to the NH? I'm just wondering if they need to be more aggresive with her medication...I had to look for neurologist who wasn't afraid of the black box warnings before MIL received a high enough dose of an anti-psychotic to help her out of control behaviors.

I'm so sorry for your dear mom...I hope she gets the peace she deserves soon.

Footballmom - which hospital was your father in? My mother just got out of Ramapo Ridge, which has a geriatric psych ward and also a dementia wing of the psych ward.

Nessa - my mother is on Seroquel, Klonipin, Depakote sprinkles and Namenda. She's on quite a high dose of the Seroquel. She was on Ativan but it's been switched back to PRN. When she takes the meds regularaly, within a few days she does better. The ALF got her meds in her yesterday. They have the Ativan as emergency PRN medication.

To everyone else, thank you again for the support. I slept great last night, that Tylenol PM did wonders.

Now I have to cram for that final.

Marjk: I went through very similar behavior. My mom was taken off risperadol & given haldorol & Ativan. She did calm down alot. We went from one extreme to another. Her roomate was really out of control. They would not take her in any ALF or NH because of it & I remember how frustrated her daughter was because no-one would take her. Sounds like the ALF is the better choice for her. I personally like them better than NH. Today so many of them have special units for Alzheimers. We would disquise my moms med in soft icecream, yogurt or Tapioca pudding. You crack me up with the Nutella, we have an Italian Market here called Uncle Guiseppe that carries it. My mom loved that store. Take care !

Hi Rosasdaughter, I haven't "seen" you in awhile.

This ALF is my last hope for now. I am so greatful they are willing to work with my mother. Our next last hope, the real one, is called Southgate. It's a place for people with behavioral problems. The patient's are usually kept there for between six and eighteen months, until they calm down and can be accepted elsewhere.

My mother loves sushi. I don't why I just thought of that. I think I will ask my sister to pick her up some sushi. The rolls are perfect for hiding meds!

Marjk;

The Diva was "violent" as well. This stage will pass, but it differs from person to peron. I kept her at home BECAUSE she was violent. I felt in my heart that if she were in NH and began acting out, both physical and verbal, she wouldn't last long. I allowed the horror stories about NH(s) make my decision. However, now that she's in the last stage, bedridden, totally incontinent, no speech, fixed stare, existing on ensure, I sometimes wish for those days. Well, minus the violence. Would even love to hear her accusing me of stealing from her! I guess just to hear her voice would send me over the moon! But, the behavior meds, I kept at a minimum. She's on the lowest dosage of risperdol. Only used ativan sparingly. When she was in Respite back in July, they gave her ativan, and when she came home she was literally foaming at the mouth. Needless to say we had a med vacation. I think what the nurse told you about intelligent people acting more violent has some validity. She didn't belong to mensa, but I'm sure she would have if she had applied.
I know you and your sister are doing all you can. Once her meds are adjusted, your Mom will calm down. Remember, this phase WILL pass.

Blessings!

Well, she seems to be doing better today. She took her meds and she ate, she's not violent today. She seems to be getting attached to one of the caregivers. She won't eat with or talk to any of the other residents, but hopefully that will come in time.

Risperdal and Aricept did not work for my mother. The Seroquel seems to work, as does the Klonipin, if she takes it.

Must go take my final now. I hope I pass, I couldn't concentrate for studying.

Marjk, You're a trooper as you should feel like you've been on a roller coaster. At times we wonder where we gain the strength to go on, don't we.

I have faith with time she'll calm down and adjust to her new surroundings. Truly has to be scary for your Mom being in a hospital on/off many meds and now in new facility.

Get some sleep and great to hear the Tylenol Pm kicked you down to rest.

Best to you and you're in my prayers....

Marj..glad to hear things have calmed down a little for your mom...I wish you good luck on your exam and I will say a prayer that you ace it!

Get some rest,
kim

Hi Marjk,

I'm glad that you were able to get a good night's sleep and I hope that you aced your exam.

My mom and dad are in Central Massachusetts, where I am originally from. My dad was sent to Clinton Hospital in Clinton, MA - a division of UMass Medical Center in Worcester, MA. He was in the geri-psych ward for about a week and a half. He has stayed on the Abilify and, as I said earlier, it has helped to take the edge off of his acting-out behaviors.

I'm glad that your Mom seems to be settling in. Here's a ((((Hug)))) that things will be better for you!

Marjk, I'd just like to offer my support.
Your story sounds similar to what I've been going through the last month.

Please know your not alone.

Welcome to the message boards, Dezdmona. We're all together in this, so please come back often and share your story!

Welcome Desdmona, and thank you for your support.

Well, she seems to be calming down, SLIGHTLY! The staff at the ALF are very good at being creative with getting the meds into my mother.

I of course came down with one of the worse head colds, EVER!!!! As much as I wanted to travel two hours to see her, I just couldn't like this. If I got any of the residents at the ALF sick, I would never forgive myself. Illness and dementia do NOT go well together. I also haven't been able to keep my eyes open for longer than two hours.

Now of course stupid nosy neighbors are telling me that I probably have the swine flu. No you idiots, it's a cold!!! Sorry, just needed to get that out.

Hi Marj, Glad to hear the ALF is still working with your mom. Hopefully, every bit of medication will form an accumalative affect and continue to calm your mom down. We all have our fingers crossed!

Take care of that cold! Rest, rest, rest. I think we are all in for it this year -- any time anyone gets the sniffles, it will be called swine flu! Geeeezzzz, talk about paranoia!

Mari

Someone actually told me that this cold will turn into the swine flu. Different viruses people, one is rhino one is swine. Rhinos and pigs, oh my. I must be delirious at this point. The paranoia really is a bit out of control. That being said, I do think it's best for me to stay away from my mother's ALF until I get better. Even though it's the rhino and not the pig, it's still dangerous for our loved ones with dementia to get sick. It's really breaking my heart though that I can't go see her this weekend.

Rest, dear girl! Close those eyes and dream of...pigs? rhinos??? Sending you virtual kleenex and permission (should you need it) to take a break.

You're juggling so many responsibilities and worries, supporting us on the forum, plus battling a cold! And pigs and rhinos. It's just not right.

I hope things settle down for the better very soon and give you a break.

I am treating myself to doing nothing! The worst part is that I was supposed to go out tonight for a friend's birthday and tomorrow is supposed to be another birthday celebration during football. My final is over, new class doesn't start until Thursday, I had plans to actually have some fun!!!!

All that being said, if I could just get my mother to talk to me on the phone, I would feel so much better. She has no clue anymore how to talk on a phone.

I was just at my doctor on Tuesday. I told her that I haven't been sick in over a year. She told me to take extra vitamins and take care of myself because due to the excess stress, I could so easily end up sick. I wonder if this is psychosomatic? I just sneezed no.

Oh, Marj! I HATE head colds. They are the worst.

You know, I always seem to get sick right after a really stressful period. I think the stress wears out our body's ability to fight the bugs we come in contact with. It's no coincidence. Physchosomatic, no...physical, yes.

God bless you! For the sneeze and otherwise!

I think you are right on the money there DJ..I am so sick right now and I think its all the aftershock of moving mom and dad back and missing dad and getting my house back in order then BAM...sore throat, stomach off the charts with IBS symptoms...it just sucks but thats what stress does to us..

Hope you are feeling better Marj and how did you do on that final exam?

kim

Kim, feel better. My head is stills so stuffed and the IBS is out of control for me too! But I'm a trooper and back at work. Or maybe a moron.

I didn't get my grade back yet for the final, but I am sure I didn't do well. I was so not prepared. I don't think I failed. I should find out by Friday.

Yes, the second one calms down from a major stress, BAM - sickness hits.

Marj,
This is off topic and I haven't contributed to this thread, but I'm curious about what class (classes?) you are taking. I can't believe you work, take care of your mom (two hours away!) and go to class. I would have flunked out for sure.

My mom died from this dreaded disease in April. I didn't know what to do with myself. I had quit my job to take care of her and then found myself with nothing. So I have gone back to school to become an event planner. I absolutely love it, but there's no way I could have kept up with the work while my mom was still living. You are amazing!

Thanks Jackie. I work full time as an audiologist and I am going for my doctorate part time in audiology. UGH! 10 more months to go. I have no idea how I do it, but I am pretty sure I am due for a mental breakdown soon. Luckily I am going on vacation in November, for 2 weeks!

To be honest, the busier I am, the less time I have to dwell on how much my life sucks right now.

Oh, Marj, my heart goes out to you if you truly think your life sucks. Look at the positive side...you have made all these WONDERFUL friends in this online community!

Hope things look better tomorrow! You are amazing!

You know, my life doesn't REALLY suck right now, it's just hard. I wish I had a little more time for myself. My work and school and mother keep me busy all the time. I have a wonderful support system that I couldn't live without. I have great friends and neighbors and the most wonderful dog.

On a positive note, my mother has been taking her medicine for the past couple of days. The ALF is bribing her with Reece's Peanut Butter cups and they are working, working like a charm. She is even swallowing her pills! No need to crush them and hide them. Except for the early morning (pre-meds), she seems to be much calmer. I hope this lasts.

I have IBS too - I wonder how many of us on this site do?

quote:

Originally posted by Marjk:
You know, my life doesn't REALLY suck right now, it's just hard. I wish I had a little more time for myself. My work and school and mother keep me busy all the time. I have a wonderful support system that I couldn't live without. I have great friends and neighbors and the most wonderful dog.

On a positive note, my mother has been taking her medicine for the past couple of days. The ALF is bribing her with Reece's Peanut Butter cups and they are working, working like a charm. She is even swallowing her pills! No need to crush them and hide them. Except for the early morning (pre-meds), she seems to be much calmer. I hope this lasts.

That's awesome that the chocolate is an incentive for her to cooperate and take her pills! HOORAY!!!!!!!!!!!