getting to know each other
 

Hi, I'm JoJo6. You can leave the 6 off.lol

I'm here because my MIL has Alzheimer's Disease. She has progressed to the point of us having to place her in a Nursing home. I still do her laundry, just because thats about all I can do for her.

Mr. Jo is so devoted to his mom. I see big tears in his eyes when I ask how she is, I stop asking and wait for him to tell me. Sometimes never. Like the time she socked him and got hold of him and wouldn't turn loose because she wanted to go home with him. They had to about drag her back to the day room. Mr. Jo never did tell me this, his uncle told me.

Anyway MIL lived with us a long time, I got to the point where my health was shot, and she was worse every day.

Well, that is enough about me. Welcome to all that would like to come in.

Dr.John has much information on his site about Alzheimers. The link is under his name. He is a good man for making this forum. I just hope people will use it. It would have helped me 10 years ago. I'll leave a light on for you.:)

I care, JoJo

My father and several of my aunts have (had) alzheimer's. It really is shocking that so many of my elderly relatives have this. My Father passed away from other causes a year ago in August. He was sweet, although a bit adled, right up to the end.

Anyway, sorry to hear about your MIL. My own Mom is failing. Although she has really stablized and improved since we put her in a nursing home. She doesn't have Alz. though, although her memory was terribly affected by her heart issues.

I'm personally convinced this is a disease of the metabolism, a sort of glucose problem with the brain, a bit like diabetes. To that end I'm being careful of the sweets and starches in my own diet, since my destiny seems clear otherwise!

Hi Nancy. You know Alzheimer's and Dementia are much alike in the symtoms. Just the aging process will cause short term memory loss as well as other things.
My MIL was dx;ed with Alzheimer's Disease in her early 60's:eek: that scares me, I'll be 64 next week. :p Oh well, now I can blame everything on hubby.lol I'm older that he is , about 4 1/2 years.

It is a very sad way to end one's life. I mean as in dying with natural causes.

I'm under the weather, horrible chest thingy. Doesn't want to go away. Nancy, did you say you were the Moderator in the Alz. & Dem. room? Well it is nice to meet you nevertheless.:)

I'm hoping things will be helpful for those that want to take part in this forum. There are so very many stages it is not simple to say what stage a patient is in. I don't think that works very well anyway. MIL will be here for a week or a few, then she slides down, way down.

Well, I do hope we have a good forum here. I feel it's needed and it sure does help when the patient is hard to handle. Perhaps we can share bits and pieces of info. That can be very valuable.

Well, good luck to all and if you are an Alzheimer's patient, feel free to come too. After all, you know first hand how things feel. In the "old" forum we had several that were patients and they were very helpful.

Take care all and blessings to all. JoJo

My best friend since childhood just lost her mother to Alzheimer's Disease. She had been in a nursing home for over a year, and hadn't recognized family in about that long. Sounds as though she took a bad fall, injured her head, slipped into a coma, and died five days later. Apparently her last MRI had been very bad.

I'll soon be posting some information about the diagnostic differentials for dementia due to B12 deficiency and Alzheimer's. There is a lot of info out there. We used to have a thread about it on the PN forum. I mostly post on the Gluten Sensitivity/Celiac Disease forum.

Cara

Hi Cara,

One of the handouts that Peg brought home discusses food/supplements. B12 was not listed there. This handout is something that the doc wrote, so I'm not sure how much I can post out here. When I have a chance, maybe I can summarize some things from it. Omega 3 & 6's, Vit E & C were mentioned.

I just read through an eMedicine article on Alzheimer's, too, and saw no mention of B12. It is sad to think something so simple might be missed.

Cara

Hi Lara, good to be "talking again". I'm not sure I can answer your question but if I don't get the job done, I'm sure someone else will have an answer. Lets see if I got it right first.

I'm learning more and more every day about these things, it really gets depressing at times:) Alzheimer patients go from one end of the spectrum to the other. For instance, MIL was one of the sweetest, nicest people I have ever known.

Around the time we moved her her personality begun to change. She got very hard to handle. I think she knew she was not being nice, but as to how much I couldn't say. poor thing, it would have killed her had she known she beat me up. lol. She was so fragile, could hardly walk but it was like pulling the blinds, something just came over her face, I learned quickly to get out of reach. Sometimes I didn't make it. She was as strong as an ox.

I would say after a fashion she knew things wern't right but if we tried to work with her she got worse. Most of the time now she just stares blankly and ignores you. I don't feel bad at her, my heart hurts for her. She looks so puzzled and scared. I just want to take all the pain away.

I don't know about the other Lara and don't feel I answered the first one.

I do know her neuro would always tell hubby if a new something came out that could possible arrest the disease or help them not get it at all. He didn't know, but at least he gave husband a choice. At 1 point Vit. E was all the rage. We both worry or better word try to be aware of these things. there is so much we don't know. I read some interesting things over in Dr.Grohol's site this morn. very interesting.

Cara, what blood test do they do to check the low b12? I'm going for a "blood panel" tis next week and wondered what more they could do. My potassium was very low.

I'll shut up after this and read your post:) Cara, you mentioned falls your friends mom had.. MIL is in the 2nd NH. The first one, well, it was a gross mistake. They called hubby one night and told him MIL's room-mate pushed her down, but she only had a small knot on her head. Hubby told her to have her dressed, he would pick her up in 20 and take het to ER to check it out.

Well, her skull was fractured. The only time we went back there was to get her clothes! We had already been looking for one, not so fancy on the out side, but have a good nursing staff.

She has had several "falls", broke her shoulder in 3 places adn had to have surgery 2 times in less that 2 months. My opinion? there was no way she could have fallen and hurt her shoulder that way. somebody was jerking her arm!!
I understand now why they say the leading cause of death with AD patients were( p=monia SP) & falls. I believe that. My heart breaks for all the little patients. They can be so funny, they laugh, we laugh, they don't we don't. just have to follow along.thank you all for the information.

Jo

So sorry to hear about all those falls :( .

Tests are:

B12 level
methylmalonic acid
homocysteine

The lab lows for B12 are usually set around 150-200, depending upon the lab, but you want a B12 level in the upper range. People with levels as high as 400, and even higher in rare cases, can be B12 deficient. Upper range is usually set around 900-1100, depending upon lab.

An elevation in either of the second two suggest a B12 deficiency even if the B12 level is in normal range. And to complicate matters more, even those can be normal. Does anyone know of a perfect lab test for anything???


The circumstance of my friends mom's fall was vague. They said she probably fell because of the AD. I guess her whole face was purple/blue from the bleeding :(. I was on vacation the week it happened, and never even knew until after I got back. I missed the funeral which I felt very badly about. You always think you will be there to support your friends, but within seven days time someone can die and be buried.

My own mother had a fall in the hospital when she was supposed to be in restraints or under supervision. The nurses were actually being kind to her by letting her up and allowing her to sit out in a wheel chair at the nurses station. Well, she tried to get up when they weren't looking and fell and broke several ribs :(.

Does your low potassium really wipe you out? My MIL has to take it by prescription. She says she feels awful when she is low. My daughter had a couple of days a few years back where she couldn't seem to get out of bed. Very tired, lots of muscle complaints, and very weepy. I finally hauled her in and all they found was mildly below range potassium. They said it wouldn't account for her symptoms, but they gave her a potassium boost. Within two hours she was a new kid.

Cara

Hi Jo,

In some of the reading I've been doing - patients do have a tendancy to fall or lose consciousness. Could that be going in with your MIL? It might be worth inquiring at the old NH or certainly telling the new NH to be watchful of.

I am sorry anyone - caregivers or caregivees - must go thru this. My heart goes out to everyone.

Al, you are very sweet. you would be like Mr. Jo said I would do if he turned his head, get a bus and bring them all home with me:eek: I hate so bad when I see one hurt, but so foes he

It is true at least MIL took spells od being unsteady when walking. At the 1st NH the nite charge person told us her room mate pushed her down. They never called one to see about her in the hospital.

Hubby asked for a
copy of the accident report. Well this drug on for several month. hubby finally told them He would not leave that day until he had it in his hand. Of course they didn't even fill out one. fractured skull?? They thought we were going to sue but all we wanted was something to be done to care of patiens in the way they deserved. HE reported it to DHEC. They fined them all kinds of money and I think the place was shut down. It looked so nice, but you gotta get down on your hands and kness and do the white glove test!!

When she broke her arm she was already at the 2nd one. Yes, I suppose she could have fallen, but she had gotten violent at times and no way to be sure how it happened. Tis so sad.

HI,
Though I would check this forum--I am the sole caregiver to my mom who has dementia.
Myself being disabled--life is a challange to be sure.
Hope to gleen much info here :)
Debbie

Hi
I dont have anybody with alzheimers in my family, but I am an activities person at a retirement village, I work mostly with the assisted living and the alzheimers residents..... I love my job, and have the utmost respect for those of you who are having to personally deal with this disease.
vicky

Welcome
 

Debbie, it is good to see you posting again, but sorry about your mom. Taking care of MOM is a very hard thing to do, but you add your own health problems and you have more than a hand full.

I hope you can find some help here in this forum. I wish you well with your own health problems. I will be thinking of you and if I can help in any way please just post it or PM if you want. You take care and let us know how your mom is doing. blessings, Jo

Welcome Vicky
 

I am interested in your post. Could you give us some idea's in helping our LO's ? It's hard to find anything that will get MIL's attention these days, but I still try. Now and again I see that sparkle, maybe my imagination, but maybe not?

Yesterday she kept saying something to me, I couldn't hear her see was talking so low and her words were so garbled. She leaned her head close to mine and she said the same thing again. She said she loved me.

I can't begin to say how that touched my heart. It was hard to keep the tears in check. You can seldom understand words she mumbles much lest put a sentence together.

I have been there when they had activities and it is a hard to keep some of them focused. I do admire anybody that will take on jobs like these. Perhaps you will share some things with us, help us understand how to interact with our LO's.

Welcome to you as well as all that have posted here. with much care, Jo

I understand your frustration. It is VERY difficult to find activities. I do ALOT of musical stuff with them. They love to sing and listen to songs that were popular when they were teens and young adults. We have one lady that is pretty nonresponsive to anything. She just has this blank stare and shuffles around.
She likes for us to do her nails, and give her hand massages. She also likes it when i bring my pet bunny up LOL. He'll sit in her lap and she'll hold him. She doens't pet him, but when you try to give him to another resident she gets upset that you took him from her. I found a book at the library called. "Alzheimers Activities that Stimulate the Mind". by Emilia C. Bazan-Salazar. There are alot of neat activities in this. I'm going to try and get my boss to buy this book if its available.
I'm going to a workshop on Nov the first called "Unlocking the Mysteries: Whats worth knowing in Alzheimers Disease" The speaker is Joanne Koenig Coste. She is the author of a book "Learning to Speak Alzheimers." I'm hoping to learn alot at this workshop.
I've only been doing this for a 16 months. Before this i was a special education teacher. One thing i've learned, is you take it one day at a time. and you rejoice in the little things. Maybe you saw them smile, or they reached out and touched your hand, or maybe its nothing more than that "light" that you know for just a moment they understood what you were saying or doing.
I have the utmost respect for those of you who are dealing with this. Its so hard. I can honestly say that working with the alzheimers residents has been a life changing experience.
Take care and i hope you guys have a great day!!!!
vicky

morning Vicky
 

Let me know how the seminars go. I appreciate the info you have offered. I'll look for the book.
You know Vicky, sometimes the patients are so funny and you are so sure they are getting better, but next visit total change. I've been jotting down notes for years off and on, hoping one day to put some together. I have to depend on my memory and dang, it is getting as bad as the patients I see everytime I go see MIL.

They have moved Mary to another wing of the Alzheimer's- Dementia side of the NH. The side they moved her to is the side where all the patients are bed-ridden, never expected to be up and about ever again.

Mary can still walk, sometimes she needs someone with her though. I hate so much we had to place her!!:mad: Ken keeps reminding me of the reasons we did have to, but I just wish it were different.

I like the "bunny"and the patient's joy at just seeing a pet. Mary used to love animals. When we moved her here. I moved the dogs too. they were used to living in the house, but I had to draw the line there. I'm allergic to most annimals, especially cats! Not long after we moved her she lost all interest in the little dogs. Even to this day she does not want them to get near her. I found this very strange, but I've been told many times they change their habits with a lot of things things.It is all so so sad.:( thank you for your responce Vicky. Jo

Hi Debbie, have been thinking of you. How are things with your mom? You do have your hands full and I certainly admire you for taking this on. I was wondering if you had some sort of Respite House or something like that. Some are really nice, you get a week or 2 with nothing to do except what you want to do. you will know your mom is taken care of.

That may be an option to look into even if you don't feel this is the time. Some in our old group in the old BTChats took advantage of this. She could have someone to come to her house while she was gone. Then they had others where she could go and they would take care of him in another site. It always seem to help her so. Well, let us know how you as well as Mom is.

thinking of you, Jo

Hi
I am Karen. I am 29 married no kids and take care of my MIL who has alzhimers. She is getting into the last stage I guess not talking much. She has been with us 2 years. I have someone comein three times week to give her a shower since that really hurts my back.
My husband and I both being disabled it is hard to care for her and very isolating. today she woke up wanting to go home with no clue where she was.
I am like yall it is so hard to find her something to do other than stare into space.

dear dear people!!
 

Welcome Karen! :) It is good you have someone come in several times a week to help. Keeping yourself healthy is most often.

I know this has to be hard for you. I helped care for for my MIL for years until we had to place her. I was a sad day indeed to do that it couldn't be helped. We still try to go as much as we can. I do her laundry. I know it doesn't cross her mind as to who doess the laundry. Really I am not able, but I want to do it, thats about the only thing I can do for her.

She does not know us, but she seems to connect to hubby at times. I have been think of you beautiful people that are caring for you LO's.

I was wondering if anybody had any questions or concerns when it come to the caring and taking care of your LO.

Karen, I am thinking that our LO's can go on a long time in the manner you discribe. It could be her times, but sometimes they live a long time in the not talking , just being out of things. You might want to start looking for a NH that has nurses and Drs. on the staff.
As much as we want to keep them, it can become very hard on the caregiver as well as the patient. Just take a bit of time to look on to the things time to visit and find out what kind of NH you want.

NH's are not always equel. They may look great outside or even in the lobbys, but the more "show" I saw turned out to be the worst when it came to caring for their patient.

Just thought that you all might want to consider. I say all this because we have lived thru many of these.

Speak up and maybe Karen knows something I don't know, etc. I would like to know how you all think of these things. I'm still seeking answers for things
I know no one knows the answers , but maybe we can help each other.

Take care everybody. I feel a little family beginning to grow here, starting all who needs to vent.:) Yes, I do vent too. Bless each of us, Julia

Karen, Please don't think I thought you should put your MIL in a NH. Not that at all!! Just helps to be prepared sometimes.

I was also thinkng of your own health. It's hard to even think on this, but sometimes we have to. I can tell anybody, it was a move I did not want to to make.
If I had been able I would have kept MIL longer. No doubt about it!! Sometimes it is not possible. Take care Karen and the rest of you dear people. thank you and take care all, Jo