What's Happening in our Caregiving World?

[puddykat]

Kat's back

Thank you for all your kind, loving words. I couldn't read all but tried to scan; wish I could take your trouble from you somehow. You are the greatest caregivers, altho at times you think not, but truly you are I wish mine (SO) were so caring. He still can't get used to this disease; he uses work, his medical issues as excuses altho he's read about the process; not going to get better, getting worse real fast.

Hallucinations have started, same one for about a month, hearing SO talking to a woman on cell in his bedroom; have tried to catch him but the darn bed, mine, squeaks, as does floor. Altho one night stood by his door for long time listening to one sided conversation, did hear her voice enough to recognize it. Does one hallucinate the same thing for that long of time? Don't know but driving us both crazy. I finally got wise and shut my pie hole - or is that the wrong end Our last verbal encounter was Friday night, I slept Sat and Sunday, Perhaps slept Sunday to give us a break from each other altho I did sleep which do more often.

I was feeling paranoid, thought I'd post to calm me down. Had to go back to see what I wrote last time here, all that is still going on w/strokes/seizures. When I get angry guess I take it out on the bed, luckily SO's not there could take my frustrations out on him literally...

No violence yet except once in very beginning, threw dishes, food all at him.....then left room.

Been looking into drugs for hallucinations....are they some doozies/side effects; not so sure want to even try them.

You've all got your plates so full, hope you take time for yourselves too. love to you all, kat

[Ging]

Hey Kat I found you!! Yay ;),
why are you with this man??
I can't imagin putting up with that kind of treatment from someone who is supposed to be my SO !
I am not sure about the hallucinations and their longivity, but you have your gut feeling right?
talk to your Doctor, and do not ever let yourself be mistreated. You have a diease, he doesnt so he is more accountable for his behavior .You take care honey and I will be checking on you, Hugs and positive thoughts for your well being honey.
sorry for mis spelled words or incomplete words, it is part of my problems with my brain, each day it is different!

[tic chick]

hey everyone !

julia and pati...i don't think they made out incident reports, but i didn't ask. i'm going to have to google and read the laws about nursing homes in the state of michigan. i know they started rating nursing homes in michigan, around the time my mom went into that nursing home 4 years ago and that nh was at the bottom of the list. i had no choice but to put my mom there, cause all the other nursing homes had refused her. i called the director of the nursing home and asked why they were ranked so low. he got out a book and read me that they were mostly violations for not informing families of patient's about medication changes and falls and other things they have to report. so, i'm going out find out if they need to make incident reports when a patient touches another patient in an aggressive manner.

they should have camera's, because there are always people in the dining room enjoying the sun or looking out the window between meal times. they don't have enough help to have someone in there 24/7 and forget about afternoon's or night's...you can't even get someone to answer the phone if you have the direct number to the station where your loved one is, i know, i've tried to do that.

i am most angry about them starting that antipsycotic BEFORE they asked me. that's just not supposed to happen and that's what i'm going to pick my fight about.

so, i'm going to do a lot of googling and writing stuff down and informing myself.

thank you both for your advice and opinions and thank you phyllis for your prayer's...the power of prayer is amazing !

i write exactly what's going on because i know people read this who are not member's here and i want to be able to inform them as much as possible...and you can only do that by honesty.

thank you all for sharing and caring ,
jeannie

[dawnmn]

Sorry for jumping in here but I just wanted to say that they put brain injury people on depakote. This curds the volient behavior that brain injury people can have right after the injury.

Jeannie I think that you are on the right track with regards to your mom;s meds.

[Mal L]

Thank you for all your kind, loving words. I couldn't read all but tried to scan; wish I could take your trouble from you somehow. You are the greatest caregivers, altho at times you think not, but truly you are I wish mine (SO) were so caring. He still can't get used to this disease; he uses work, his medical issues as excuses altho he's read about the process; not going to get better, getting worse real fast.

Hallucinations have started, same one for about a month, hearing SO talking to a woman on cell in his bedroom; have tried to catch him but the darn bed, mine, squeaks, as does floor. Altho one night stood by his door for long time listening to one sided conversation, did hear her voice enough to recognize it. Does one hallucinate the same thing for that long of time? Don't know but driving us both crazy. I finally got wise and shut my pie hole - or is that the wrong end Our last verbal encounter was Friday night, I slept Sat and Sunday, Perhaps slept Sunday to give us a break from each other altho I did sleep which do more often.

I was feeling paranoid, thought I'd post to calm me down. Had to go back to see what I wrote last time here, all that is still going on w/strokes/seizures. When I get angry guess I take it out on the bed, luckily SO's not there could take my frustrations out on him literally...

No violence yet except once in very beginning, threw dishes, food all at him.....then left room.

Been looking into drugs for hallucinations....are they some doozies/side effects; not so sure want to even try them.

You've all got your plates so full, hope you take time for yourselves too. love to you all, kat

I did some researching on anti-hallucinogenic drugs and found that while they do reduce health and life expectancy, they also postpone the occurrence of institutionalization - for the elderly with dementia. Not sure about the result with VaD vs. Alz. What I read said that a good number of doctors feel that the option of using the drugs is to be preferred. My advice is to consult with a specialist or maybe more than one. Another treatment method is behavioral management. If I dared, I would also ask one or another specialist for the truth about the reality of these conversations/

[dawnmn]

Note: The FDA issued a Public Health Advisory for atypical antipsychotic medications. The FDA determined that death rates are higher for elderly people with dementia when taking this medication. A review of data has found a risk with conventional antipsychotics as well. Antipsychotic medications are not FDA-approved for the treatment of behavioral disorders in patients with dementia.

[mrsjerome]

Just me again putting my 2 cents in.

Ok a little background on meds that mr j was and is currently on.
First he was not prescribed anti-psychotic medication originally by NH.
His neurologist in late 2007 had put him on one. This was while he still was at home with myself as his caretaker. I saw no change in him and his behaviors were just escalating . I had home health care coming in and no matter what was being tried , she just advised me to look for NH placement. Finally,

Back in 2008, he was put in the mental health unit of the VA center. That is when he was prescribed these type of meds. When he went from there to the NH, they already had him on one of these types. In the following months, the meds where adjusted with different ones being taken off of and different ones added. I will say at this point that at one point or another was on 4 of the main ones. Of course not all of them at the same time.
After a dispute between the NH and the VA center, I was told since the NH can’t (because of what they implied were NH regulations) or won’t follow their direction and since the NH was calling the shots, that it would be in the best interest of mr j that the NH physicians should be his primary source of treatment.

So we now have the NH primary care Dr. and the psychiatrist prescribing. A lot of good any of this did. Sometimes he would seem to be doing ok. and others well just let say not so good. He was at this NH. Until last summer. They kept calling and complaining of his behaviors. Not a thing I could do about it. I have been going through my own health problems these past couple of years.

My son talked to them and they told him that we could

Look on our own for another facility. ( Fat chance of that Happening) After contacting several myself was told that they did not want anyone that could be a potential threat.

That I could take him home and have home care nursing. ( Right if I could manage with him at home he would not be in a NH to begin with.

Call the Agent Resource Center ( No help there either)

Social Worker told my son that she called over 20 NH’s . with negative responses

Told him also that environment is the factor needs something less restrictive ( what utter BS)

Finally we were fortunate to find a NH about a half Hr. drive from me. Someone came up here to interview him. My son and I went to look at this NH. WE thought dobiza (good) here is the place for him. Room of his own Shared bathroom but man on other side not physically capable of using it.
Then of course as I wrote earlier couple months later the ulcer bleed when we almost lost him. After that my own surgery.

Now to the present, behavior problems start up again. Psych Doc readjusts all psych meds (increased dosage), A fall after that. Meds put back to previous dosage. Now blood clots in both legs, put on blood thinner. Have blood thinner at desired level but waiting a bit for continuity. In the meantime will do therapy but of course mr j is too tired to participate.

His nurse practioner will call the psych Doc next week on decreasing the dosage on one of the meds.Doesn’t want to do this week and wants to change one at a time instead of all at once.
So this is where we are now.
Kat will PM you later
Jeanne hope you find what ever you need to know and proceed accordingly. Once again my best to you.
Take Care
mrs j

[mrsjerome]

Dawn
I have been complaining of this practice to the medical establishment for a long time.

Their way in getting around this is by using it as off label and or telling you that they aren’t treating the dementia but the behaviors associated with it.
I have been also told that the meds are prescribed in lower dosages .

Geriatric psychiatrists are the main culprits . I had been told if you don’t like the treatment to find another psychiatrist. The problem with that is all are the same (at least the ones mr j has seen).

I think this practice needs to be altered. I am afraid that unfortunately will not be in my lifetime.

Take Care

mrs j

[Jo6]

Ladies, how my heart aches for all of you. Being a Caregiver does not stop when our LO's are placed in a NH. Actually I think most times the caregiver's role is increased in order to keep them safe.

Please don't forget to take care of yourself. That is MOST important!! I love all of you and wish I could take these burdens off you. take care, Julia

[tic chick]

hey everyone!

i went to see my mom today and she seemed almost scared of something. she wasn't making much sense. i left my separated from husband with her and i went downstairs to talk to the administrator of the nursing home, cause i thought that not getting consent from a power-of-attorney for a patient to be put on a powerful med like an antipsychotic was just too serious a mistake to make and i didn't want it to happen to my mom or anyone else's loved one again. the unit manager at the care conference apologized for the mistake, but i didn't know if she was going to report it to the administration and it seems she didn't because the director of nursing and the nh administrator weren't aware of the problem when i talked to them.

i had the original paperwork from when i signed my mother into the nursing home on 1/1/2008. i had a copy of a paper that was for the psychiatric service to treat my mom and on the top sheet of the paper i had written, "under no circumstnaces do i want my mother given ritalin or any other amphetamines or any old or atypical antipsychotics." i also brought out the patients bill of rights i was given and it said right there, at #6. that a patient or their representative has the right to participate in the treatment of the patient and to be made aware of any changes in their treatment so they can consent or not consent to it. this is basically what i read when i looked up the state of michigan's nursing home regulations on google, but i had the nh own version of that, so it was even better.

well, the administrator was new, cause i knew the man who was the administrator before and i hadn't seen him for about 2 weeks, so that's about when this new administrator came in. we started talking and i was telling her about the polyp my mom has and she mentioned that her brother just died from colon cancer at age 55. she mentioned the church his funeral was at and a few of her relatives names. i realized i knew one of them, it was her aunt and her aunt had been my music teacher and choir director when i was in grade school from 1960-1968. this music teacher was my favorite teacher. i sang with the school choir at her wedding in 1967 and i told the administrator this. she caught me up on how my former teacher was currently doing.

the director of nursing was also there when i was talking to the administrator of the nh. the director of nursing told me that this was a "medication error" and the nurse shouldn't have even given my mom the meds without asking the doctor if he had my consent. she said it would be brought up at an in-house staff meeting the next day. she said nurses have a code of ethics that they have to follow also. she also was going to call the psych nurse that called me and the doctor that prescribed the antipsychotic. i said they hadn't even tested her for any other probs cause she had a urinary tract infection which could have been causing the more agitated behavior. they didn't test for that until AFTER they prescribed the antipsychotic. the director of nursing didn't care for that either. she also said they were going to have a permanent staff member answering phones form 430-1200AM. i said that's a great idea, because it's very hard to get a hold of someone at the nh if you don't know the direct extension to the nurse's station. she also agreed with my point about trying to get my mom on a regular dose of anti-anxiety meds before any antipsychotics. she agreed antipsychotics should not be the first drug of choice.

so, i went away from that meeting feeling better, because i know the administrator is new and wants to do a good job and i could have easily complained to the state about this "medication error". as i said, i can be nice while stating my case, cause i don't think anger is a good first response. but if they p*** me off one more time......i dunno. i did see the names, addresses and phone number's of state departments you could contact if you believed a patient's right's had been violated. they were posted in the front lobby and right at all the elevators.

i was reading some articles when i googled the state of michigan's rights for patients in nursing homes about how a lot of other states are havig a decrease in the rate of nh prescribing antipsychotics. i think people are reading up on these drugs and seeing that they don't have any place in the treatment of elderly dementia patients unless those patients are TRULY a risk to themselves, other residents and staff. i can't say i would never let them prescribe them for my mother, but i would have to be convinced that she was really uncontrollable and i told the director of nursing that even then, i would rather have her heavily sedated than on an antipsychotic.

as i understand it, antipsychotics work on chemicals in the brain. no doctor knows how chemicals in the brain get screwed up by alzheimer's dementia. how can they think a drug is going to work in a mind that is filled with plaques and tangled sections and can't signal properly from neuron to neuron? in a normal brain, antipsychotics work, for the most part because doctors know what chemicals in the brain are messed up and the drugs that will straighten out those chemicals and the messages they send. the alzheimer's brain is not normal. sedatives work on the central nervous system. yes, the brain is part of that, but so are a lot of other organs in the body. the effect of sedatives is to slow down the brain and other functions and thus prevent a person from even being able to get out of bed, because they are sedated. yes, neither choice is any kind of life for the alzheimer's patient, but by the time a loved one is at this point, we don't want them taking a drug that is going to make them behave worse than the disease they are giving it for.

DEATH WITH DIGNITY.

it's not just an empty promise that i made to mom when i asked her to sign the papers making me her power of attorney.

thank you all for your input and sharing and caring ,
jeannie

[Ging]

Jeannie, thank you for sharing , I am new to all this and am learning so much . I am sorry about your mom, but she has a good advocate in you. I am so thankful to be learning about these drugs. God bless you and your Mom .(( Hugs)) to you both, Ging

[mrsjerome]

Good for you Jeannie, for further bringing this to the attention of the NH administration. Have you talked to the psychiatrist that did the prescribing? Would think he or she should be aware of your wishes in this regard as well. That would be another good way of preventing that from happening again.

NH rules and regulations vary from state to state. In Wisconsin, the informed consent act did not become law until Dec. of 2010. It was was first introduced in the legislature in the spring of 2009. This was after a NH resident in the northern part of the state died. The resident’s daughter brought it to the attention of her state rep. She had poa also but was not informed of the drug change.

There was an article concerning prescribing these kind of drugs in the paper last year from that article some psychiatrist stated this

While the Food and Drug Administration has warned doctors that using antipsychotic drugs in elderly patients with dementia increases their risks of death, doctors continue the practice because they have few other good choices, said Dr. Daniel J. Carlat, editor in chief of The Carlat Psychiatry Report, a medical education newsletter for psychiatrists.
“Doctors want to maximize quality of life by treating the patient’s agitation even if that means the patient will die a bit sooner,” Dr. Carlat said.


My husband went into the NH in 2008 too. But he went in Jan of that year, So has been a little longer than Jeannie’s mom. The dementia mr.j has is not alzheimers but what they describe as cerebral dementia. It stems from the brain damage after the brain surgery. In time these areas of the brain that are damaged develop atrophy. That is why his memory has been intact for so long. it was an area not damaged by the bleed. Of course at the present his long term is still great but the short term is becoming effected. This has been apparent to me and our kids lately. So could alzheimers also be setting in, or could it be from the side effects of the meds? I don’t know the answer to that and neither do the Drs.

I visited my husband on Wed. One of my sons drove me and we met my daughter over there. mr. j was laying in bed when we got there. We had one of the nurses get him up and we took him to the dining area for a visit. My husband is getting slower to respond when we talk to him. At times we nudge him to pay more attention. We brought some snacks for him to eat. After eating , he just wanted to go lay down again. We tried to keep him a little more occupied and kept him a little longer. Afterwards we took him back to his room and had the nurse lay him down. His leg is still swollen. Although they say blood clots in both legs, I believe one leg may be just showing the residual clot he had after the brain surgery. As that leg looks normal to me.

Hopefully he will do some therapy next week. He could have this week but just refused and says he is too sick and tired to participate. I still worry about the clots when he is as inactive as he is.

The Nurse Practioner told me she called the psycho Doc. And did have one of his meds reduced. I would hope to have him off of it completely.

Take Care

mrs j

[puddykat]

Whoa, thank you all for info you found. I also read some of the same. My hallicinations got worse with thinking SO had brought a woman home for the weekend. I'd had a bad Fri. with seizures/stroke. Knocks me out/I slept Saturday, Sunday. But heard bits/pieces of female voice. Thinking she was still here Monday a.m., Got up to confont both.....SO was in bathroom, went in bedroom, noone there. He back in bedroom, swore I heard heer say 'I think you wife was just in here'.......I walked in, he was sitting there alone as usual. No place to hide, I looked all over, in closet......that's how bad they weere getting. We talked, told him what I thought about the woman. Then he understood why I was leaping into his room in middle of night looking for someone. Don't know if this will help, facing what I thought was mmy demon or not. These 'things' are the worst I've faced yet, and hope I can keep it in check. Trust with him is hard to come by from past experiences.
I feel terrible for all of you who are taking care of your loved ones. I hope not to get so bad to be in a NH, hopefully a stroke/heart attack.......just want to stay home but not useful here either. But don't want others, strangers, telling me to do this that or other thing or what time to do it....don't want to lose my freedom. Already lost my freedom to drive, that decision I made myself. I know how my brain is, how it reacts etc. Was time to stop. Thank you for listening......love to you all and all you do, kat

[Buttons2]

Kat,it's good to read a post from you. however the hallicinations sounds like hell. do you know what causes this to happen?

made me think back to a phone call from my mom last year. she wanted me to look up a woman's name on the internet. she said a power bill had another woman's name on it. I didn't question her odd request. certainly made no sense whatsoever but she's been convinced my 80+ yr old dad has affairs for a long time now.and she's been fixated with sex for a long time. of course I suspect she's had more than one TIA. trying to have a conversation with her is getting more frustrating everytime with talk.

Kat,I hope where you live the weather is mild & you can get outside to enjoy the birds,etc. maybe you have snow drops in bloom? you deserve some moments of peace & simple enjoyment to bring a smile. ((((hugs)))) Pati

[mrsQ]

Hi ladies,
Sorry I have not posted in months. My computer broke way before Christmas & I just got it fixed this month so I'm really playing catch up.

I guess the biggest thing around here is that we move my mother in law back in with us. Back during the holidays I found som skin tears on her & when I asked the NH about it they got an attitude. She ended up in an ER trip where we found more issues and more lying by the NH staff just right out to your face. We looked into placement but couldn't find anything near by. So she is here.

It is hard but we are making it. I am suppose to have an aid come 2x a week to give her a bath and then a ''sitter'' through a wavier program come 3 x a week for 4 hours. The problem is the sitter has only actually came 2x since the middle of Jan. We changed to another service provider and are suppose to get a new sitter tomorrow so keep your fingers crossed for me that this one won't be another crazy lady.

I hope you all are doing ok. ((( hugs ))) Karen