My dearest caregivers,
I don't know what to say except I'm so sorry for not being here. I don't have much time right now to tell you all that I want to say as Mom is now in the habit of calling me every second, and I mean that literally. Its Jackie, Jackie Jackie with no breath in between. The caregivers that help me, my brother, sister in law, sister or husband could be sitting right beside her which they do when there here, and she still insists on calling me. I can't stand it and I can't control it.

Please be patient with me a while longer while I get my thoughts together as I seem to no longer be able to sit and type much without some sort of disturbance from her.

I have much to tell, but my concentration level is now at zero. As one of the Judges on T.V. always says "Stick a fork in me, I'm done"!!! I've looked up and told the Lord this, but I guess he thinks I can take more. Hopefully He knows better that I.

I love you all and think about and talk about you all with the hospice nurse. I tell her that you all have given me the strength to keep on going.

I will try to continue this tonight after Mom gets to sleep which is a chore in itself. She's been up many times as much as 48 hours or more. Ambien, Ambien CR, Lunesta---- nothing seems to knock her out on a regular basis.

Talk to you all soon,
My love and prayers and admiration to all of you

Jackie

That sounds really tough Jackie. I've started getting up early in the morning just to have a moment of peace before Laurette begins her day, and I doubt she demands nearly as much attention! I'm sure everybody here understands, and best of luck to you...

We love you Jackie -we understand!
Its buzy here too. I shouldn't complain - it can always get worse.
Take care
Eileen

It's just good to hear from you Jackie. I'll be praying for you and your mother. I've met you and know you can do it. Take care and try to come here every chance you get even if it's just to say "I'm still hanging on".

Jezza, I remember getting up early just to have a quiet cup of coffee before starting again. There were times when I would hear Bill stirring and think "Why can't you sleep just a little longer? It's too early to start over."

Good to hear from you, too, Eileen.

All of you come ore often.

Jackie,

So good to hear from you, as you are deeply missed around here.

I'm so sorry things are so hectic and trying for you and will keep you in my thoughts and prayers.
Come here as often as you can--we are always here for you.

Oh Jackie, I've missed you so! I'm so, so sorry things are so very difficult with your mom, I'm sure it's harder than most of us can even begin to understand. I am just now beginning to feel somewhat normal after the long haul with my mom and building the house, moving in, wedding, new grandbaby, tons of company, all of it. My mind was on constant overload full of emotions, good and bad. People would ask me a question about something a week away and I would look at them blankly thinking, I have to get through the next few days, I'll think about that after this is over. Whew, it was rough and with all of the emotions running around, it makes it all the more difficult, so I sortof understand. But having constant bombardment into your brain with your mom calling your name, ohhhhhh, that has to be very hard. I know there is much more going on too that magnifies your situation. Thank you so much for writing, you don't know how good it is to hear from you.

Please take care and know we are all with you,

~Kelly~ Big hugs to you!

Hey Jackie, nice to see that relaxing avitar again! I was just wondering if you have tried lorazepam with your mother. I know that was the missing component for my grandmother when she had her manic episodes that kept her up all night. 1/4 of a pill and she was counting sheep all night.

Hi Jackie. I'm still here too. I'm not in the trenches, 24/7, like you, but I can still, relate. It is so stinking HARD! It does sound like you haven't found the right meds. I never thought that would be my answer, to everything, I am so much more an alternative medicine type, but it seems at this stage of the game, the right med combo, is the answer.

Love to you & your Mom, and try to remember (if your brain does not explode) that the reason she calls out your name, is because she loves, and trusts you, so! Some day, it will make you feel good, I am pretty sure, just not now!

I remember when my Mom called me over, in a panic, to tell the hair-dresser, what to do. She was asking her questions, she didn't know how to answer ;-( It actually made me feel good, & useful, ya know?

Please let us tell you how much we've missed you--without putting pressure or physical strains on yourself sitting at your computer to reply. We are with you, and you are ALWAYS with us!

Right now it's like "F i r e!" at your house......enough said.

That point of can't stand it and can't control it ANY longer makes us face another hard decision. Putting my mom in the hospital was the only answer when she was in constant psychotic talk and I was completely spent. SOMETHING had to be done for her. Neither of us could go on like that, we just couldn't. And I couldn't take any more meds changes at home alone. If this is what you decide to do, of course it's going to be hard, but you have our support and we're here to see you through it.

I want you to handle it better than I did though, so here's my heads-up. Putting Mom in someone else's hands brought on some things I wasn't prepared for. The guilt of not being there for her when I always was; the sudden silence and emptiness in the house was a devastating sadness I'd never known; I tried to rest but couldn't sleep because my mind raced with wonder of what's to come, etc., etc., etc.

Looking back I wish I would have taken better advantage of that time. Please try to find a way to do that, moment at a time. We can't have you going mental on us, okay?

We love and miss you!

My prayers are with you all.

Hi again everyone,
Gosh, thank you all soooo much for all the wonderful words of love and encouragement. You are all great!

On Wed. I had quite a scare. But one that I think gave me some answers to what I have to do. I asked one of my overnight girls to stay an extra ten minutes. Mom was giving me a hard time and I just needed a few more minutes from her.

About an hour later I got a call from her boyfriend. She was in a car accident on the way home after leaving my house. In case you don't remember, my very first caregiver, my granny nanny Laura was killed in a car accident on the WAY to my house in Jan. I was devastated as I never had her come on saturdays but had asked her to as she had missed being here two days prior and I was going crazy with Mom. I blamed myself for a long time, but realized that it was meant to be.

But when I heard a voice say "this is Kristen's boyfriend" I knew right away something was wrong. When he told me that she was in a car accident, needless to say I went crazy. And I don't mean that as an expression. I went completely out of control. I carried on all day long like a crazy lunatic.

Kristen is ok. She has a bad back injury, so will be off for a few weeks or more. Right now she's in alot of pain, and you know how that can be with injuries on backs. But she's alive and well and I'm still thinking that what if I hadn't asked her to stay that few more minutes.

But it made me do some thinking about my reaction. The hospice nurse had suggested some time ago that I enter mom in the hospice program that they have at the hospice home for symptom management. They feel they can better observe her and find a medication that will calm her down a bit and stop the aggitation, hallucinations and well you all know the rest. I was totally against it, but after that day, I have decided that I have to give it a chance, so I signed her up for it.

The very next day, on thursday, they had an opening, but I refused as I knew the rushing of getting her things ready, and her and myself mentally would be more than I could handle, so she's on a waiting list which shouldn't be more than a week. I was going to visit the home and take a tour, but got such good raves from the nurse, cna, social worker and everyone else on her team, that I decided to trust their opinion and just sign her up and not take a tour.

There are only 16 beds and about 1 nurse, cna etc. for every 2 patients. So I guess that's kinda like the Ritz. The CNA that comes and bathes Mom said she has worked there as a fill in occasionally and its really beautiful there, and nothing like a hospital setting. Each room has a sitting area for family and a bed for anyone that wants to stay overnight. There is no limit to visiting hours, and my helpers are going to be allowed to go there whenever I want them to. The only thing they did suggest is that I make my visits sparse. They said to go there upon admitting her, and maybe one more time within the 7days. They didn't insist on it, but highly suggested it as they have seen my horrible moods and depression and believe that it will be good for us both.

I did look it up on the internet, and have pictures of it in the book they had provided when Mom first entered hospice. The rooms look really nice and spacious and nothing like a hospital room. Its called the Joliet Community Hospice Home. Suppose to be one of the tops. We shall see.

I don't have real high hopes of them coming to a med that will agree with Mom, but I think the separation from her for awhile will do us good. I constantly scream at her and tell her she's driving me crazy, and many other nasty things. I hurt her so bad. I just can't do this to her anymore. Its killing me.

Aitan - is lorzepam Ativan? If it is then yes, I've tried that. Plus Depakote, haldol, zanax and now risperdal. The risperdal was doing good at three a day, and then stopped, so we're up to 5 a day. Seems like it may actually be making it worse. All night long when she's awake she calls my name, and from the time she gets up in the morning till she goes to bed at night, she still calls my name. I know it may seem like an exaggeration, but I kid you not when I say that no more than 30 seconds go by and she is calling my name again. And its constent with not much breath in between.
If I don't answer her it gets louder and then she'll start crying.

Sleeping pills have been Ambien, Lunesta, Ambien CR, and back to Lunesta again. The Ambiens made her hallucinate and aggitated her to hell. The CR was the worse. I thought I would have to commit her for sure. That was a day from hell after giving her one the night before.

Well my friends, I've taken up enough of your time. If any of you have any suggestions, I'll take them all. But please know that I will not always be making this about me. I know all of you are going through much the same, and I will make sure after this hospice stay if I get any helpful hints that they will be passed along. I just didn't realize I guess that my Mom could ever get to this stage, and I also didn't realize that I wouldn't be able to handle it as well as I thought I could. I'm really disappointed in myself right now that I'm not stronger. I thought I was.

Mom is also passing out more, so she is restricted to sitting in the recliner all day. Hospice sent one of the lift ones, but when she has to be changed its really hard to change her in it. The hospice nurse wants me to set up a bed in the living room, but I know the change in the environment of the living room versus the bedroom will never go well with her. Plus the first thing she wants to do in the morning is get out of that bed. Even if we try to put the recliner in the up position to pull up her depends, she has passed out.

Well enough of this. I've rambled more than I had intentions of doing, but it's actually quiet up there right now. But since it is quiet in her room, I think I may hit the sack as in a few hours my name will be coming up again.

My love and thanks to all of you, and I hope to keep coming back when I can. I can't thank you all enough for what you always do for me. You are wonderful loving people and I hope one day I can give back to you what you have given to me.

love to you all,
Jackie

Ohhhhhh, Jackie,

Big hugs for you first of all. I really know what you are going through. I went through this last year and it was horrible. The blessed people on this forum paved the way for me telling me that I was going to have to put my mom in a psychiatric hospital to stabilize her meds. Horrors I thought, no way, not my mom, I'm going to take care of her. Then the same gal, and I'm so sorry I don't remember your name, but you were a true blessing to me and I tell people all the time about you, so tell me who you are please so I can thank you properly!!! Anyway, she told me that those hospitals are not bad, they are kind places where people know how to take care of these kinds of situations. Well, that was tucked away in my brain, then after trying numerous medications for several days which were a disaster, and I mean disaster, my brother in law stepped in and told me that he talked to a Dr. and that I had to put her in the hospital the next day. Well, I agreed, but only surfacely, because I was so spent I couldn't think anymore. This was 10 days before dear sons wedding! Next morning after brother in law called, 2 daughters were taking care of Mom and the girls started calling saying she was hitting them, throwing things, trying to bite them...... Girls were no wimps, she was just totally out of control. Soooo, everything everyone had told me kicked in and I called the Dr. and told her I was bringing her in. Long story short, after she was at the psychiatric hospital for 10 days the director told me that you cannot TREAT AD, you have to MANAGE it, and management for my mom was a facility. He said if we brought her home she would go right back to the violent behavior. He said meds are one thing, but environment was key.

And again, long story short, she is truly better at the memory care facility. Somehow these folks with AD just know that we are family and treat us badly, but they don't for the most part with the staff. My mom completely calmed down and rested at her new home while at home she WOULDN'T rest at all. It has not all been easy to be sure, especially that settling in time, but for the most part she is so much better there than she was at home or still would be. I get to be her daughter again and not the "boss lady" and she enjoys seeing us where as before we were always the bad guys. And most importantly, she is truly better there, it is so obvious. We are a year plus out from that terrible time and to be honest it took me about 8 months to settle down and know that our decision was the right one. I knew it at the time, but the emotions of it were terribly hard. There are times still where I just want to cry my head off and go get her, but I KNOW that she wouldn't be happy here, she would be stressed to the max, so I rest in that knowledge and then know that AD is just the pits, it stinks and we cannot, no matter how hard we try, fix it.

My dear Jackie, I am glad that you have a solution for now. Please, please don't ever think you are a failure, I really know that feeling, I really do, but please don't think it. You have cared for your mom under extreme circumstances, you have done it, and now it sounds as though it is best for your mom to be where she can calm down. You will still be caring for her when she is at this new place, you won't stop caring for her, you will deal with Drs., and the facility, you will take care of her meds and all kinds of things you never knew you would have to do, so don't think your caring days are over, there is still much to be done, it is just a new phase and one that is best for all.

Please keep us all posted, we are here with you, and you have already given MUCH to all of us with your constant care and encouragement. We are all blessed by you.

I know this adjustment time will be hard but keep telling yourself things that are true and right and push aside the false guilt. Your mom is blessed to have you and will continue to be blessed by you.

Take care Jackie, I'll be praying for you,

~Kelly~

Jackie,
I'm really glad you made this decision. You have done everything possible and now it is time to let someone else help out.
You know I was able to keep Bill home until the end, but I can't believe he was nearly as difficult as what your mother is. He had his anger episodes but no repitative things that would drive me up the wall.

Try to let go of the guilt, easier said than done. Also those "what ifs" are the pits. I've had my share of those and it hasn't helped a thing.
It's too bad we can't try out all the "what ifs" and pick the one that worked the best. I remember Granny Nanny, was that just last winter? It seems like a life time ago. So much has happened this past year.

The small home in my opinion is the best. In the larger places they just don't have the time to give the attention needed by someone with AD. I hope you are able to recoup.

Getting Mom all packed and prettied up? ~~~ Ready for the Ritz!? It sure sounds like a good place. Hopefully, having your helpers with you now, you've been able to actually concentrate long enough TO pack and such, so YOU feel she's ready.

A thought if you want to do something like this.....I just had to pack a little piece of myself--a love note to Mom--to kind of help me keep our link through the separation. Of course, they never showed it to her, but I did when visiting. At least when I wasn't there, it was.

To be honest, I'm a little concerned about the w-w-WAIT-ing List. On one hand I know you are sooo ready! The decision's been made, yet more patience is required. Boy! Could you and hubby maybe get away for a day? A little vino, a lot of Gino--might be a good confirmation (for lack of a better word) that you are doing the right thing. On the other hand, waiting can be good to have a little time to really catch a deep breath, especially since you've been panting through this marathon of chaos for so long. Well, 'fingers crossed,' as Jezza says, that they're ready to take her when you're ready to let her go.

Once she's settled in, how about we talk this....um....talk........about you not wanting to make this about you. It's us, remember? What's the one thing we caregivers 'pass along' to each other--repeatedly! We have to take care of ourselves before we can take care of others. Let us sit and hold your hand for a little while, then we'll ALL stand up stronger.

We love ya!

Keeping you and Mom in my prayers and thoughts.

Hi everyone,
Well, Mom finally got in on Tuesday at the hospice home. An ambulance came for her and believe it or not she was very cooperative. It went really well getting her there. We arrived around 4pm and they made her comfortable while I answered some questions from the chaplin and let him know that so far I was ok with this. Its amazing how very concerned they are about the caregiver.

Tuesday night went pretty well, but of course Mom started on the lets go home thing. I told her she was at a "testing hotel" (cause actually that's what it looks like) and she seemed to calm down a bit.

I left there around 7pm and left my brother and sister in law with Mom. Hubby and I went to dinner and of course were there no more than 15 minute and my cell phone rings. My brother called to say they were giving Mom the same medicines that had cause her all the aggitation previously. I asked to talk to the nurse and told her that although we did not have good luck with them, to do whatever they thought was best.

But of course the next day needless to say, I was livid. I thought, what the heck is going on? So I got myself dressed, went to the hospice home and sat down with her nurse and had her explain everything to me.

Basically what they do is yes give Mom the same meds, but in smaller doses and together and in a suppository form. Mom's reaction to Depakote, Haldol and Aitavan was horrible. But what they do is have a combination form of all three in lower dosages in a suppository. Plus they also give her liquid Morphine and benedryl at various times.

Now mind you, all this is really experimental. But it's the only way they can find out what will work for her. And if it doesn't work, then they will try to find a combination of what will work.

The hospice doctor also had a nice long talk with me. She said that most of the patients in their hospice home are there for exactly what Mom is there for, so they've had alot of success in managing the aggitation and sleeplessness. Of course no guarantee, but their going to give it their best shot.

As far as the passing out, well, not much that can be done about that. Mom's got blockages in the carotoid arteries in her neck, and other things against her. And unless I want to go into extensive testing, there's really not much that can be done except to keep her down. So basically she can go from bed to her recliner during the day and back to bed at night. Anything thing else like sitting at the kitchen table or going on the commode is not going to happen which it has not for almost a month now. She now passes out on a regular basis if we even try that. Changing her in the recliner is a challange as we have to move her from side to side and the chair is also low. So it takes two of us to do. If we try to stand her up to change the depends, which of course is much easier, down she goes. It's taking a toll on my back ( I pulled it out last week and am finally starting to walk without pain again) as I have to help the girls to get her changed. But it seems except for hiring two girls at once, there not much of a choice.

I've only been there once so far, and that was yesterday to talk to her nurse and her doctor there. I will be going on Friday again as I'm short of help since my one helper had the car accident. She will be going there on Friday morning as she won't have to lift or change Mom, just keep her company. But I have to fill in some hours until my night girl comes. I actually just hired my best friend today since high school for fill in hours with the stipulation of course that she get paid. She balked, but finally accepted. She needs a job, I need help, so I think it worked out good.

I have to tell you about this hospice home. The rooms are private (only 16) and very very large. A couch in there that pulls out for a bed. A recliner, chairs galore, a t.v. with a vcr and dvd player. The views in the summer and spring must be fantastic. Water fountains, trees, beautiful landscaping. They have a computer room with a library, a dining room, a sitting room with a white grand piano and a fireplace, a coffee room with a fridge, microwave where you can heat up brought food. They also have meals for anyone that stays there during mealtime for $5. The food is really good and not at all like hospital food. If the patient won't eat whats on the menu for that day, they will try to make something else.

The staff there are wonderful. So compassionate and easy to get along with. You don't have to wait for Mom to be changed if she has a B.M, they are there quickly. If they hear she is uncomfortable or see that she is (they have video camera's in the rooms) they are there in an instant to see what they can do.

So far, nothing has been working as far as meds, but it has only been two days, so I guess I can't expect much yet. My night caregiver said she never slept a wink last night, and spit out any meds that the nurses tried to give her. I haven't called my day caregiver yet, so don't really know how she's doing right now. She is eating pretty well, so I guess thats good.

Kelly, what is the difference between where Mom is and where your Mom is at a "memory care facility"? It seems this is just a temporary thing to manage Mom's AD, but she will be coming home, I think. Any info you can give me will be appreciated. Right now medicare pays for this, but if she was a permanent resident, I think I have to pay. Not quite sure yet about that as I haven't been thinking that far ahead. Let me know when you can.

Well my friends, I'll end this now as I have gone on and on much too long. Yesterday after talking to Mom's nurse and the doctor at hospice it was like I could finally breath and not feel so smothered. I hope this feeling can continue as I have to try to get back to some kind of normal living if possible.

Thank you all again,
Jackie

Jackie,
Where you mother is, do you have to provide the caregivers to stay there with her or is having them there for your feeling of security?

While she is there, just enjoy those dinners and open a bottle of wine for me, knowing that I am thinking of you.

I'll give you a call the next time I get to Theresa's. That would normally be between Christmas and New Years. Since things still aren't normal, I'm not sure what is going on this year. Whereever I am, I'll be thinking of you.