The Wednesday before the wedding, Aug. 27th, I had a 50 minute care conference on the phone with the Dr., nurse, and care coordinator from the Geriatric hospital. Told me all about my mom, said she was very advanced, mid to late stage, very invasive into other people's lives at the hospital but could be redirected, but didn't like it. Friendly, does the activities with cues. Needs help with pretty much everything. Dr. strongly encourged us to not bring her home believing that she would go right back to the violent behavior and not taking her meds from us. Believed she would be more content at an AD facility since she could pretty much have the run of the place. Told me not to take her ANYWHERE except to the Dr. for an emergency, not to church, out to eat, shopping, nowhere. ~Big sigh~

Dad had already thought we should place her until the house got finished, then before I even had this conference he had said he thought she might be safer and better at a facility. I had already spoken with a facility that came highly recommended for the respite care for the wedding, so we kindof had a ball rolling. The Tues. after the wedding, Amber, our friend Sarah from Mich. and I headed out for what ended up to be a 13 1/2 hour day to get Mom. I brought her a pretty blue suit to wear, curled her hair and got her makeup on. She let me do it!!!! I didn't want to bring her to the new place looking bad.

They had to give her a temporary room until a permanent one came available, so this past Tues. we moved her into her new room with her new bed and pretty furnishings that we brought. I shopped all over looking for a pretty headboard that made her room look nice and pretty bedspread. She loved it. This is so funny though. As soon as we got the bed made, in walked Betty, a resident. Betty has the sweetest, prettiest smile. She sat right down on Mom's new bed. Mom fussed because she never has sat on her bedspreads. Then Betty took off her shoes and promptly laid down on the bed saying, "It's a nice bed!!" She lay there smiling then went to sleep and was still there an hour and a half later when I left!!!

I prayed that Mom would find a special lady friend and she did!!!! Peggy, and Peggy is only 65 yrs. old. Mom said, "I think there is something wrong with Peggy, but I don't think she knows it!!!"

Okay, here is the strange thing maybe some of you could help me with. About 99% of what Mom said before she left for the hospital didn't make sense. She was put on Aricept and Namenda right away and for the past many weeks her speech is much, much better. She is still confused and all but makes sense a good portion of the time, which honestly is somewhat distressing to my dad since she wants to come home, go shopping, do her hair and makeup. He feels guiltier now because she is so much better but he knows she wouldn't take her medications from us, she already has given me grief about one I mentioned in front of her. I mentioned my mom sounding better to 3 different medical people and I attributed it to the Aricept and Namenda but they all 3 said, "No, it is the environment." The improvement started right away, so I just don't know what to believe. Do any of you have any thoughts on that?

Some visits with her are good, some are bad, she complains and says to me that "You're only happy if you are winning." She thinks I'm trying to steal her husband, my daddy again and..... I just told my dad we have to prepare ourselves for it and be pleasantly surprised if she is nice. The other people there are so funny and enjoyable though, we all come home with many stories.

I remember reading other people here saying it is harder when you have to place them and I know what you mean now. I'm still calling the Dr. and the facility, buying things that she needs, going there, bringing the staff goodies, constantly praying for her and her safety....

But, I don't think I had any idea how much stress any of us were under until now. Wow, that was intense, partly because she was so demanding, questioning, going, going, going, arguing, crying, going, going, going and again, questioning!!!! Whew.

It is the strangest thing in the world to leave my mama somewhere for others to take care of though, I still cannot believe it is real. The facility is built in a big rectangle shape so the residents can walk the halls in a big "circle", going outside in the courtyard if they want that has pretty birds. They play nice hymns and old songs, play only old movies on the TV, have a lady who does hair. but of course my mom doesn't like her!! I keep telling them that she wasn't like this before, I hope they believe me. My mom goes rummaging in other people's rooms but then gets mad when they do it to her. She has her makeup and emery boards hidden in the tissue box. I just cannot imagine how she must feel being there, not understanding why we won't take her home. All that said, she smiles more than she did for a long time before she left, on her good days she tells us all about what she did all day in her AD way, and has funny things to talk about, whereas before she just didn't make sense. I do think she is much more content and actually happy, until we come visit.

Sorry for rambling again, any thoughts on why she is better would be appreciated. I'm really curious about that.

Take care all,

~Kelly~

Wow, Kelly, what a change in your Mom. I'm happy it's working
out so well.
Everyone is different, but things were actually kind of similar with
my Dad. He lived with my son and I for a few months and was
verbally aggressive, angry alot, and borderline violent. He didn't
want to be there (he told one of my siblings), even though he
thought it was his house. He's been in Assisted Living for going on
a year and a half now. He has a beautiful room and, despite some
bumps in the road, has adjusted very well. My challenges in dealing
with the facility (I won't go into all the details) are many, but
they are way easier to handle than than dealing with Dad's anger
and crazy behavior in my home, especially with my son around.
I've hired private caregivers to be there for Dad during the
mornings and late afternoons, when he likes to walk a lot.
They have been a Godsend. One of them calls me and tells me
about some of their outings and his sense of humor and
enjoyment.
Bottom line, I think he enjoys his "independence," which he could
not enjoy when he lived my home. Something about that role
reversal. It's much easier for him to take my pushing him on
things now when I'm visiting him in HIS home.
Good luck with continued success Kelly.
Carol

Kelly,

First of all, never apologize for rambling. Sometimes its really the only way we can get out our thoughts to actually make ourselves be better able to think about a situation. I do it quite often as you've probably seen from many of "my" posts. We're here to listen and help anyway we can.

How far is your Mom now from your home at the new nursing facility?

I think it's great that your Mom has found a friend. It seems that Peggy(or is it Betty?) may be very good for your Mom, and so cute that she thinks something is wrong with Peggy. That may be a good thing, as your Mom may now believe she has to "care" for someone, and maybe will be able to accept being there knowing she is helping, rather than being there because "she" has a problem.

As far as the Namenda and the Aricept, I don't know much about either. Mom was on Aricept at the beginning stages, and it didn't agree with her, so I can't comment if change in your mom is from the meds. But what I can say, is that when my Granny Nanny Laura is here, Mom has a completely different attitude than she does with me. So I guess that kinda would be like a different environment. She is more cooperative with Laura and takes her meds more willingly with her. I know many times I take pills to Mom, and just say, "Here's your pills, you need to take them". And of course a she starts the fifty questions, and many times says she doesnt' need them and won't take them.

On the other hand, I've seen Laura bring them to her, and say, "Yo, take these when you get a chance". And she immediatley picks them out of her hands or off the table and in the mouth they go. So many times, the people they live with on an everyday basis, they just won't cooperate with, and I'm sure Mom sees me getting impatient and that reflects on the way she reacts.

Mom is also much more talkative with Laura then she is with me. And that's good for Mom. Mind you, after two years of Mom living with me, you can only hear the same stories so much, and your response is one of "uh-huh". Wereas Laura's response will be one of excitement and interest. And one thing I know for sure. The extra stimulation she gets from someone besides me, perks her up instantly.

Kelly, this disease is very complicated. It seems that there are not too many members that have the exact same situation with their loved ones. I often think, in the same situation as you, if I could handle what you have. I cannot even imagine what it may be like one day to have to put Mom in any facility, and have sworn I will never. But I now know that it is unrealistic of me to think that way. As I once told my brother when we were having a discussion (argument) about something. This is not about you or me, this is about Mom.

Your Mom is in a safe place. It seems she is getting excellent care. I think at this point, all you can do is take it on a day to day basis, and if you ever feel the need to change her situation, as in originally bringing her there, you will know what the right thing is to do.

I, like you, seem to want to question any improvement I see in Mom. I guess I start thinking that maybe she will somehow get better when I see the good days. But I think we just need to accept the good days, and be thankful that there are some.
I don't think even the doctors can give us the answers to our questions on whether its the meds or the environment. Its a strange complicated disease, that most of the medical community still doesnt' know enough about.

Love her, be there for her, as I know you are, and just take it day by day. This is so much harder for you as you have to see your father's heart breaking as he sees his wife going through this terrible time. It's hard enough watching our AD loved ones going through this, but I imagine its so much more intensified having to see the hurt and frustration in your Dad.

We're here for you Kelly. We don't have all the answers, if any, but we sure can listen and let you get out your frustrations that many times we don't want our families to bear.

Keep us updated, and God be with you.

jackie

Thanks Carol and Jackie for your kind responses. It is so strange how our LO can treat someone outside the family so different, that they have the ability to discern and use some form of logic to figure all of that out, when there seems to be no logic left. Mind boggling.

My mom is about 20 min from our home. We are out in the country so everything is a distance anyway and she is right near a Costco and other shopping that we do so that makes it easy to plan trips around seeing her.

My mom has been "mothering" all of the people at the two diff. hospitals and now this place ever since she got there. The nurses say she interferes with other people's care and tells the nurses that someone needs something, so yes, Jackie you are right, she will feel needed by doing that. May drive the aids crazy, but.... they get paid! She thought she worked at the Day Center and still speaks about that "job", it is funny and sweet all at the same time.

Yes, Jackie, I used to say never too, and I meant it, but the more I read about AD, the more I started thinking there might not be any other choice.

Mom's friend is Peggy, I thought she was a daughter visiting her mother the first few times I saw her. On Sunday when my dad was visiting with my mom Peggy wouldn't leave them alone and Mom ran her off. But, Peggy kept coming back! Well, when my dad was telling me about it I knew just what he did when saying goodbye and I said to him, "Now, Dad, don't you go hugging Peggy goodbye or else Mom will get jealous and not be nice to her." Well, Dad laughed and laughed and said he did hug her, he felt so sorry for her. I knew it!!! I told him us girls will hug Peggy and for him not too, we all want Mom to have this special friend, for both of their sakes.

Betty was the bed hopper!

You are right that it is hard dealing with my dad's grief, really hard. I know he never in a million years anticipated anything like this happening, we were all taken by surprise as I'm sure all of you were too. He has cried a lot, and he is not a crier, but I think it is good, he has had an intense year and a half of grief and hasn't had time to grieve. He looked so handsome at the wedding and was so kind. He sat right next to me since my husband was up on stage. He was sitting by my widowed mother in law and when they were being escorted out after the wedding he offered her his arm to walk her out. What a guy!! My mother would of loved, loved, loved the wedding, the dancing, the joy, the beauty, I'm sure it was so hard for him to be there without her, especially since she was in a hospital.

Okay, rambling again.

Thanks for listening,

~Kelly~

Kelly,

Just read your post and can give you a little insight into the meds. Mom has been on them for a couple of years now, it takes about 5-7 days for the meds to build up so if she improved immediately it was probably the environment. I know that Mom reacts differently at different places and with different people. I never really believed it when I heard that AD people were meaner to the caregiver than the rest of the people they knew but am having to live and experience that now. Every day is a new day and new experience. The decision to put mom in a facility is a hard one and I too have felt like both of you, that I would never do something like that, but I am beginning to see how that might not be the best plan for mom. When and where is the choices I have to make now. I have a brother that thinks she should already be there, a sister who still thinks there is nothing wrong, and one who supports me but is too far away to be of much help. So life is like a roller coaster.

I hope that I have helped to clear some of the confusion but also seem to be rambling.

Anyway, hope you have a great day all.

Kelly,

Some people thrive in facilities while others do not do so well. Although I don't know why your mom seems to be doing so well, guess we shouldn't question it but just rejoice in it and be thankful this is working out for the best. This could have been a very messy situation and it appears as though your mom is adapting quite well.

I am keeping your family and your sweet dad in my prayers. Take care:)

I had heard that the meds take about a week to kick in so that makes sense Linda. You're right Snick, this could of been really bad and has for the most part went very well.

Now, the difficult part, and this sounds really crazy, is that the drugs seemed to have brought my mom back about 8 months or so and she is so aware of everything that it is just killing my dad. She speaks almost completely clearly where when she went in about 99% of what she said didn't make sense. When dad visits she constantly asks why she is there, why can't she go home, she wants a perm, she wants her makeup, she wants clean shoe laces, she wants to go shoppig, why would he leave her there...... He just suffers so when he goes there and it makes me hurt all over hearing him talk about it. He doesn't even want to go visit and doesn't really often. The cupboard under her bathroom sink was dirty and so she got a washcloth and cleaned the whole thing!!!!! My dad thinks she is better off than anyone there, but I don't think that is the case.

My sister said she doesn't think Dad is feeling badly about his decision to place her, it is just so painful to visit.

I keep thinking, do we take her off the Aricept and Namenda or lower the dose so she won't be so aware that she isn't with family? But, then I think, how ethical is that to make her worse? Oh, ugh!

Any insight would be appreciated.

Thanks for listening,

~Kelly~

Kelly,

Would it be possible to let your Mom come home for a day visit and see how she reacts? Maybe the answers will come easier for you and your Dad if you can see what kind of reaction she may have.

I don't know much about the Aricept and Namenda, but not sure about lowering the dose. Since she is doing so well on what she's on, it may make it easier on you and the family for her not to realize whats going on, but how much stress will it bring on her again, and then on you all again her not realizing. You'll have to decide which would be the better alternative.

But if the doctors don't think it will do any harm, I think again, her coming home for a visit, might give you the answer you need. Of course, you'll have to think of something clever to tell her why, and afterwards for returning to the home.

And don't worry so much about what's ethical. Do what you feel is the right thing for her and her safety, and of course whats best for your Dad too. This is so very stressful for him, and you need to watch out for his health and well being also. You've always made the right decisions with your Mom. I expect that you will continue to do so out of love for her and for your Dad.

Jackie

I don't have any advice but wanted to say thanks for the update!

Kat

Kelly,

I know exactly what you are going through right now. We are going to be having a birthday party for mom at the end of October. I did this because it will probably be the last one mom remembers but also as a ruse to get my brother over here. The topic of conversation with the siblings will be whether or not to take mom off of her meds and let her progress rapidly. She keeps saying that she doesn't want to live this way, so what do I do? It is not going to be a fun conversation. I have been praying long and hard about this and no matter what the financial end of it brings I am not sure it is the right time yet. She doesn't like what is happening and doesn't want to live this way but she is cognizant enough to complain about everything. I guess the question really is what does God want us to do in this situation. I am still trying to answer that question. Let me know what you decide.

Linda,

As I told Kelly, I don't know much about Namenda or Aricept or most medications that they give for Ad. Mom was only on the Aricept once about 4 yrs ago, and only for a month, and it didn't agree with her. The doctor had suggested Namenda for Mom about 6 mo. ago, and gave me a sample packet. But I decided that it was only going to slow down the progression, but not make it go away. But in deciding what to do, I took into effect what she is like, and what she may be like if she took the Namenda.

Mom is not violent, does not have hallucinations, eats well, and her congnitive abilites of course are not good. So what really was it going to change? Make her repeat less, don't think so, make her be able to carry on a conversation better, maybe, make her remember everyday that yes Mom you did eat, or yes Mom you do take 4 pills, probably not.

I guess what I'm trying to say is if the improvement that she has on any meds out weighs what she had before the meds, and she's comfortable, then I say, stay with them. But what kind of improvements does she really have? I don't know much about either medication, but I don't really think it will make her progression that much faster or slower to allow her to live longer or not.

My Mom is stage 5, and I have to say she'll probably go no faster than someone who is on the Aricept and Namenda. She takes meds for high blood pressure, arthritis, cholestrol, an antidepressant and an asprin. She has COPD, stents, has had AAA surgery, and has bad knees. So when she goes, it won't be from the AD for sure.

I know my Mom wouldn't want to live this way either, but right now, there's just no choice. No matter what we decide for them, there's only one person that knows when their time is near. I keep her clean, fed and comfortable. If taking her off of any meds you have her on would make her violent, not feeling well, or just plain miserable, then you may decide that you want her to be as comfortable as she can be and keep her on them. But if its only going to make a difference in her cognitive ability, then remove them. But not with the expectations that she will progress faster. That will never be a for sure, not with this disease.

let us know what you decide and if we can help.

jackie

Jackie

Mom has been on Aricept and Namenda since she was diagnosed. About a yr. later I was talking with the dr. and saying that I didn't think the meds were working so we decided to stop them within 4 days her thinking, speaking, and understanding took a significant decline; so, I call her dr. told her what was happening and we started the meds cocktail again. The meds have been slowing the decline in all of her mental capabilities but lately I'm not sure how much. Mom continues to know that there is something wrong but can't understand what it is or why it is happening. She comments everyday that she doesn't want to live like this and that we better be ready to take care of her. She also says that things are going to continue to get worse day by day. These comments, of course, are during her lucid moments which are few are farther between these days. Simple commands like, please turn around, are beyond her thinking most of the time. She is still capable of most personal hygiene and still using the bathroom but has trouble getting food into her mouth. The signals from her brain to her eyes are not working right so she complains about not being able to see, but if she isn't thinking about seeing she can find a minute speck of dust on the carpet. This disease is weird, unpredictable and frustrating. I can decide one day to take her off the meds and then the next day she will be like her old self. So....again, I don't think it is time to stop yet. Will have to see what the other 3 siblings think after the party. (By the way it is on Oct 25th) She will be 80 yrs old on Oct. 28th.

Mom has been violent toward my husband in the past but at present is fairly calm. It is only when she really can't understand something that she throws a 2 yr old tantrum. She will plug her ears and run down the hall yelling "I'm not listening." and then slam the bedroom door. It is the funniest thing I have ever seen. The logic is mostly gone and she gets mad whenever we upgrade something to make things easier for her. Such as: a new faucet with shower attachment so she can sit on the bath chair and take a bath. She can not however get down into the tub anymore and just doesn't like the shower.

She also will say things to the other siblings that she hasn't ever said to me (If I am to believe them). She supposedly told one of my sisters that she thought it was time to go to a rest home and sell us the house, but when I try and talk to her about these things she gets angry and defensive and tells me she isn't going anywhere and to stop pushing her. So..........

Anyway, I am probably rambling, but thought I would give more info on my comments above.

Thank you for your comments and will try to remember them when talking with the rest of the family.

Times are hard and getting harder. I really appreciate this forum and all the information that everyone has.

Linda

Linda,

My mom does most of those things you've mentioned and is not on Aricept and Namenda. So see, that's what I mean, each AD patient is different. Your Mom and mine seem to be on the same stage level, one with and one without meds. So the best thing you can do is either experiment again, and take her off, or don't fix what ain't broke.

I was laughing when you mentioned your Mom running down the hall with her hands over her ears saying she's not listening. My mom also does that to me. Only she sits in her recliner and does it, then waits awhile, and then runs up in her room and slams the door. And she locks it!!

And the shower attachment and the shower chair? A few weeks ago, I got both. She won't take a shower in my bathroom as she says my showers too small and she gets clautrophbic. So I shower her in the tub. But she was getting too unsteady, so of course sitting is the better alternative. Oh my, she had a fit! I am not crippled she kept on saying. My aunt brought over a transfer chair today for the tub. Wait till she sees that! I don't know if you know what that is, but its like the shower chair, only wider. One part of it goes on the outside of the tub, and the rest on the inside. You sit on the outside part, and then just slide yourself over to the inside part. Mom has very bad arthritis in her knees, and its really hard for her to lift her legs to get over the tub.

Don't quite know if you should believe what she may tell your siblings. Again, my mom has said certain things to mine, and when I try to talk to her about it, she also gets angry, or says she never said that to them. So since you're the one taking care of her, just go by what she tells you. Seems like when there with the other children, their clever enough to tell them what they want to hear depending how they've been pushed.

Remember one thing when you talk to your siblings about things that concern your Mom. Yes, they should be asked their opinion. But one thing I've realized, and I'm sure you have too, that unless you live with that AD person, you really don't have any idea what its like. And many times siblings, as good as their intentions are, are not basing their opinions on what its like for you or your Mom, but what they think it may be like if they were in the same position. And their not! Ask them the pro's and con's about certain things, but in the end, the final decision is one that really has to be made by you with your husbands support, as he is also the one that has to experience all the negative.

And I know what you mean about appreciating this forum. If it weren't for you all, I don't know what I would do. Thank you too for all the input you give. It helps to know that someone always understands.

talk soon,
jackie

Linda,

I forgot to mention something to you. You said something about your Moms eyes, and her being able to see a speck of dust on the floor, but not the food to her mouth. Last year my mom was having somewhat of the same problem. I took her to an opthamologist. She has a condition called Sarcoidosis in her eyes. It is an inflammation that produces tiny lumps of cells called granulomas because they look like grains of sugar or sand. They are very small, and can only be seen with a microscope.

It does affect other organs, but very common in the eyes. Google it to find out more info, but you might want to get her eyes checked. She was on drops for a very long time. She should still be, but I've not kept up with her appt. which is next on my agenda. She always said she felt like she was in a fog.

Just thought I'd pass that on to you.

jackie