Hi Jackie,
Wow, the place your mother is at sounds quite ritzy!!! My mom's home is a Memory Care Center owned by LaVida Communities. On the side she is on there are 14 residents and 2 caregivers at all times along with a med aid who floats between the 2 sides. Mom has a private room, big enough for a bed, chest, trunk, several chairs, more furniture if you would want, a decent sized closet and then a shared bathroom with the resident next door. Oh yes, a good sized window in each room looking outside or into a pretty courtyard. They eat in a dining room, the food is pretty good, I wouldn't want a steady diet of it, but they are adding more fresh veggies and fruit which makes me happy. Mom requested wheat bread when she first went in and they always provide that for her. The staff basically helps with anything and everything as needed. I have to say I am amazed at how kind the caregivers are. I walk down the halls and listen as they are taking someone to the bathroom, they don't know I am there and I have NEVER heard a harsh word or seen any unkind act and I and my family are there a lot. They have 3-4 different levels of caregiving that has different prices. Mom is at a level 2 right now which means they shower her, dress her and toilet her. They say most never reach level 4. There are 2 activity gals who do a great job but Mom doesn't want to participate anymore. They still work hard to visit with her, give her treats and coffee and basically be nice to her.

There is a full-time nurse on duty and on call. They provide rides to Dr. appts, take the folks on outings which Mom doesn't like anymore. They have people come in who sing, bring a dog, play drums (go figure), do a church service, kindof.

There are a few folks on medicaid there but not many and medicare does not cover any of it. Dad pays it all. I do all the ordering of her meds which saves quite a bit, take her to the Dr. which isn't often now, and do her nails. They will do all of that but it is extra.

Jackie, my mom calmed down a lot being there, she just didn't have the opportunity to "bully" us because we weren't there to bully. She was nice to the staff from the get go, would take her meds from them but not us and on and on. She would rest where when she was home she was on the go ALL the time. She is truly better there than at home and I'm not just saying that to make myself feel better, it is true. Our visits are mostly good, some are crazy. When I took her out a while back I did too much with her, she was totally undone and then finally hit me. I felt badly for overdoing her. When I try to take her to the toilet when I'm there she won't cooperate, it is just unreal, finally I started letting the caregivers do it even though I'm there and she goes with NO problem!!! I realized that I am her daughter and a visitor and they are the staff who do those things for her and that works well in her mind, well, most of the time.

I've met lots of family there and most of them are sad to have their loved one in a home, but they were killing themselves trying to keep them at home. One lady finally said she was going to kill herself if her husband didnt' go to a home. We know one man who did kill himself years ago after giving of himself for many years. It was so sad. I think he was a kind, gracious man who wanted to take care of his wife and didn't share with others the toll it was taking on him and he just couldn't cope after a while. When I look back at what we were going through the last year with my mom I can't believe we made it, but I never thought once about not keeping her home. Now, she has calmed way down, is settled and goes about her day without all the upset that home caused. Now, I know that is not the case for all with AD, thankfully, and we still hope we can bring my mom home when she is much worse with some help so we can watch over her more carefully, but I really don't know if that will happen.

I wouldn't be as comfortable if we didn't have such a nice place for her to be. There is a courtyard on each side for the people to go out in when they want. One has strawberries and marion berries growing in it. They have nice wide hallways to walk and walk and walk and walk! Some do that alot. I pray daily for my mom for her protection and for the staff to treat her well and they really do. Each caregiver tells me that they love my mom, that she is so sweet and on and on, that helps. One of the girls takes great pride in getting her made up with her make-up, earrings, and pretty clothes. I love that and am so thankful.

I really don't know if I answered your questions, please let me know if you have any others. Take care of yourself. Oh yes, it made me happy to hear that you went out with your husband, that is a good thing. ~Kelly~

Well I have to say Kelly, YOUR mom is at the ritzy place for sure. The hospice home was beautiful, but that's about it.

The experience there for Mom and for myself and my caregivers was horrible. I can't tell you the problems I had there. The doctor that was on staff that week was not the doctor that the visiting hospice nurse usually deals with. This woman doctor was horrible and rude. And some of the staff was not much better.

They had Mom so drugged up, she looked like she was dying. In the six days she was there, she slept only once, and that was day AND night. The doctor the first day I met her was really nice, but then when finding out how informed I was about AD, turned on me. She convinced me to try Aitavan, Benedryl and Haldol combination by suppository saying it would work much better than the combo I had given her in pill for back in July. I tried to warn her that those three meds in particular made her much more aggitated, but she convinced me that in that form it would work better and basically, Gee, why are you here if you don't want to listen.

So I went along with her, big, big mistake. She was zombie like, slept ten minutes on one hour off for more than two days, was more aggitated than I've ever seen. She shook bed railings, pulled off her nightgown and pull ups, was biting herself, hitting her thighs, trying to get out of bed. I could go on and on. I had another meeting with her and told her to take her off that med immediately. She did not like that at all.

I had girls there around the clock. THe nurses kept on writing down that Mom was sleeping everytime they looked in on her so the doctor basically said my caregivers and I were liars. I also was there many days, and I couldn't believe my eyes. Instead of blaming the meds, the doctor and some of the nurses said mom was having an anvancement in her AD. Ok, advancement from when I admitted her on tuesday at 4pm till wed. afternoon? Give me a break.

They came out and asked me what exactly I wanted out of this. I said not for her to be drugged but what they had told me which was symptom management. I guess they thought if they could drug her that that was symptom management.

THere is just so much more I could tell you, but it would take me at least another hour to write it all. Long story short, Mom is home. She came home on Monday and she's of course back to mostly the way she was before she went. Not drugged and not shaking railing and pulling things off of herself.

I did agree to put her on Xanax which seems to be helping a bit, but making her really poopy and not much life in her. They took her off her antibiotic too early at hospice and of course now she has another UTI. They tested her urine WHILE she was on the antibiotic and said it was negative, so she didn't need it anymore. Stupid stupid people. So now I started another on her today per the visiting hospice nurse and Moms doctor. The smell of her urine was just awful and she isn't peeing as she should. After I see if the aggitation she's starting again is from the UTI and not the Xanax I'll make the decision to keep her on it or not.

The visiting hospice nurse, the social worker and the visiting deacon have all been here since she's been home. They are so upset that this has happen. The social worker is putting in a complaint to the director and the CEO of hospice. I left four messages while Mom was at the hospice home for the director to call me and she never did.

The doctor came in one morning after my talk with her the previous day regarding taking her off the abh suppository, listened to moms heart, mom was then sleeping. I said to her, gosh, she hasn't slept in three days, I have a few questions to ask you to see what we can do. She said to me, "Well she's sleeping now isn't she??" I grabbed my notes as I had three questions already written down and she refused to answer them and walked out on me as I was talking. For any of you that know me personally, you can imagine what my reaction was. Thank God my one caregiver was there to witness such unprofessionalism and rudeness and to hold me down.

With that I called for the nurse, who had also been rude to me, and had it out with her. Again, so very much more, but I just can't bore you anymore.

It was one of the worse decisions I have ever made. Hospice homes are NOT the place obviously to put a AD patient. Although I did get vibes from my home hospice people that if the other doctor had not been on vacation, none of this probably would not have happen as they have had great success with symptom management for AD patients many many times. Don't quite know if I could ever believe that now.

So my ritzy hospice home for Mom turned out to be the Bates Motel!!! Guess looks can be deceiving for some places. I wish I could get Mom someplace like Kelly's Mom. I looked it up online and that definitly is the place to be. Not just because of the beauty, but it sounds like they really know what their doing and know exactly what "symptom management" means. The only symptom management from now on is what I will be having control of. No more Mrs. nice guy!! I've had it being nice to the medical profession. Most do not know much about AD, they go by the book only.
They really do think that each AD patient should be basically treated the same with meds and most things. That is the attitude I got from some of the staff, including this horrible women doctor who I wouldn't recommend to treat an animal.

One nurse actually had the nerve to say to me and my caregiver that Mom really didn't want to pee, cause thats what Ad patients do. They say they want to pee, but really don't. This is at 2am in the morning when Mom is screaming she can't pee! Stupid stupid people.

Sorry, this wasn't suppose to be long. Talk later, have to get some sleep.

love you all,
Jackie

Jackie,
What a horrible experience for a first time respite for you and your mother. I know some doctors seem to think the sun rises and sets on them and they can do no wrong. I only ran into that one time when Bill was in the hospital for medicine adjustment. When I complained she ask if I thought I could do a better job and if so I could take him home. I did tell her I thought I knew more about my husband than she did but I wasn't smart enough to take him home.
I found that the smaller NHs were best for respite. If you have a Bortz near you, give them a call, they were absolutly wonderful. I think Maybee's using a Bortz near her and getting the same results. They may only be in Mi. so I don't know if you'll find one there.
I don't know why but I thought Il. had good places for AD patients. I thought about checking into seeing what I could find near Theresa and taking Bill there.

I was so glad you decided to take some time off, but if you had to spend all your time at the home, you didn't get much rest. Now you will probably think twice about trying again. Don't give up though. There has to be a good place near. Do you have to use the hospice facility? Some have said they had no choice but I did and I spent a lot of time checking into different places before choosing one.

Please don't give up, you need your time


PP

Dear Jackie,

I'm so sorry that whole ordeal was so awful, I cannot even imagine. You did your best, you can't kick yourself for it, who would of known? I know that when we are dealing with our parents, spouses or grandparents with AD, we are very protective and it is really hard to give up control and then when you do to some degree and your loved one isn't treated right, it is almost more than we can bear. I've had to fight for my mom several times and it is somewhat scary because we are so protective of them. There has to be a good home where the people really care and will deal respectfully with you, keep looking when you can get your breath. Do you have some friends you could call and ask around if they know of anyone who has a LO in such a place? I called Senior Centers and got phone numbers of people who deal with this sort of thing when I was trying to find respite care for the wedding. I was on the phone ALL day, but I got good info. It is good to talk to many people in the field because you start hearing the same place mentioned in a good way or they skim over a name and don't want to recommend it. More info. from as many people as possible can be very helpful. Maybe one of your siblings could do some calling around, it can be stressful, but it is helpful.

You take care Jackie, drink a big glass of wine,

~Kelly~

I'm so sorry Jackie! Sounds like a nightmare! I hope you will send this to a Congressman or Woman, I can't think of her name right now, in Maryland, but a BIG AD advocate! Just got home fro my grueling trip."Brain Dead!" I guess I am *lucky* that my Mother's disposition is so "Happy-Go-Lucky* which is the argument, to keep her in that Hell-Hole, that she calls...home? She did say something strange to me, I think she was reverting to back in the day, in Oklahoma, where they actually had SERVANTS! I had been busting my butt all morning, taking care of both of them, dragging them along shopping (he wont let me go alone?) and made us all lunch, and let out a big *sigh* and finally sat down, to eat with them. Mom said: "I'm not sure if they let the HELP, eat with the Family?" I think she was serious, so it rather shocked me? She is a real character~

Jackie, your experience is the reason that I kept mom home until the end. It is amazingly hard but was they only way I could feel good about mom's care. You need to do what is right for you, your mom, and your situation. Don't give up on finding a place because they are out there. It takes time and dedication, which I know you have. Hope each day gets a little better and that there are still some laughs along the way.

Linda and all,
Thank you all for all your words of encouragement. For now, Mom is staying right here in my home and not going anywhere. I've got some things I'm trying to work out money wise, and I hope to try and have enough money left for another year of caring for her in my home. I will be writing a seperate post about some of the things I've been investigating, hoping that it will come through not only for me, but for all of you. I've been using alot of my computer energy to look into getting money to pay for caregivers. This is just too much on all of us, and I'm tired, so very tired of worrying that Mom will have to go into a nursing home just to get free care. I'm going to try and post some info for all right now. Thanks again.

And Sky, I did talk to the CEO of the hospice home. He was very angry, and listened to all I had to say. He said it will be addressed and it will be known that nothing like this can ever, ever happen again. He was especially dissappointed to hear about the doctor walking out on me. She was substituting for the doctor that is usually there, and I have a feeling she won't be his substitute again. He didn't say that, but sure implied it. But now its their problem. I'm sure they want that place full as there's only 16 rooms, and I'm sure their medicare patients bring pretty good money to them.

And it seems like the director of nursing never told him that there was a problem, and he wasn't real happy about that either.

gotta go so I can get another post in before I fall asleep. Been up since 5am, and not able to concentrate much.

love to you all,
Jackie

Jackie, that sounds like a terrible adventure to have to endure. I'm glad you stepped up and brought your mom back home. The doctors don't see as much as we do and don't know them as well as we do, and although they're trained in medicine I think we're still the best judges sometimes. I had a less dramatic but similar experience with medications about 6 months ago, and I ultimately went exactly opposite of the doctor's orders. They weren't happy, but the improvement was immediate and marked.

Good luck to you.