greetings, I have been reading this morning and taking notes. My uncle lives with us and has been kind of slipping in his mind a little I fear we just have been compensating for lapses and ignoring signs.
Fussing around downstairs until 3am, confused and chopping food, sleeps till 11am, cannot recall eating meals, calls people by names of relatives long dead, drives away to take the dog for a ride and is gone for HOURS and comes in saying he just went down the road and they changed it?

I guess I was wondering a couple things, can this disease creep along and then something like being hospitalized for 14 days send them into a spiral? They diagnosed "probable az" and sent him home with aricept? for dementia all new to us when my cousin took him home from the hospital last night. My husband had to carry him in, his knee is swollen and foot purple they said it is gout. He cannot walk or move his leg.
The physical therapist wrote that he was a "max assist" ?
and had a severe change in mental status and could not do the physical therapy and was unsafe to be sent home. They sent him anyway and he is a mess, worse than he has ever been.
Do you think that hospital stay made him worse or is it a temporary thing and as he adjusts back to familiar surroundings he will return to what he was prior?

Also, feeding he used to do it himself but he cant even get up.
I was thinking of divided microwaveable plates for meals. With a toddler I cant really be sure when I can stop the circus and cook so I was thinking of precooking the days meal the night before-does anyone do that or have any suggestions?

I put my baby monitor down there (he has a bed etc in the livingroom) so I can hear him and he was up all night! Talking to a dead cat and his dead sister. Told her how he was in the war and they took him off the field right away when he was shot but the hospital people didnt speak any english. It was sad but I thought at least he thinks he has company you know?
The relatives have vanished, they crawled out of the woodwork when he was in the hospital with a post op infection but now that he is home and it is dementia....

The visiting nurse just called to say she was coming out to change his wound dressing (his hernia operation site opened up) and needed directions. Is that all they do? Will she help with these medications or bathing him? He said he wanted a bath before she came but I cant pick him up, he cannot stand or even move his leg.
How do you handle someone who is not all there and is physically unable to get up?

Well sorry for the long yak, I am just wondering how you all do day to day care with feeding, bathing and if something like a long hospital stay can make them worse or more confused.
And reading online there are "stages" to this disease, how do I know which one he is in and how long he will be there, will he come back?
OH and with this aricept are there side effects? Does it help get them back or keep them where they are?

Eleanor:

You think I shold write a Book!?!? LOL......LOL

Don't think I could write a book. I don't even know what I supposedly do know. I just think about what someone posts and if I have any ideas or remember what I did, then I post. LOL

Maybe a book of questions and answers? But then I'd have to have someone to ask the questions! Guess that lets the book out.

Thanks for the vote of confidence. It's always nice to know you have been able to help someone.

PATS

Hi Cari: JUst loved the tory of your Uncle & the baby. Everything just came together with their touch. Oh I also laughed out loud with the cake story .What your Uncle said " how do you like them apples" is just what Jim [AD] would have said . Jim says very little now, but oh those one liners.
The 36 Hour Book is indeed a good book. I got it on our first visit with the Alzheimers Society, read alittle at fist but refer to it always as we have progressed with AD.

I put baking soda in the bath water it is soothing and leaves your skin soft.
Having the clothes the same colour would help, Ji gets confused with Pj,s and shirts, especially if they are plaid or stripped.

Cari I hope your family will be feeling better soon, It looks like you all need plenty of rest.
I would let everbody know of your Uncles condition, just makes it easier for you to speak with them.

Pats: You always have such good advice. I don,t know whether it was you or not, that I suggested you write a book with all your tips. I will follow some of your advice.
Cari this is a really good place to get help in many situations

All take care Eleanor

Hi Cari,

That was such a sweet story about your son holding your unckles hand and your uncle responding to it. I had a book years ago called "Please Touch" It stressed the importance fo touching that is felt by everyone. It seems like they were able to connect on some level. How wonderful for both of them.

I agree with what everyone has said. I would buy the book "The 36-hour day." You will read it at different times as things come up.

Talking with him as you bathe him is a good idea. It takes getting used to cleaning up an adult. But in time you do get used to it. Generally people do better once they are back home after a few days. We all completely understand the steep learning curve you spoke of. It was the same for all of us.

That was a funny story about the birthday cake. Keep those memories for days when you are sad. Giving him plenty of water is good advise for helping with dry skin. You have been given good advise on the dry skin issue. Let us know what works for you. What a great idea sewing on the other labels. With dementia you have to do what works and not worry about anything else.

Getting clothes in the same color and style is a great idea. I will cut down on the confusion. Most likely what is coming is him not wanting to change his clothes. If they are the same style and color it makes it a lot easier when you get to that stage.

As to what to tell friends and neighbors, I told people Mom had Alzheimer's. It made it a lot easier for everyone. Then they understood when she was not making any sense. Don't worry about your post being too long. Ask any question you may have.

Vicki

Cari, happy "belated birthday", dear. I had to laugh right out loud when I read about the cake and your uncle's hilarious response!! I'm sure the laughter was a nice release of those wonderful endorphins. I always tried to make my Daddy laugh every chance I got.

Sounds like everybody's sick. Be careful to take care of YOU!! Follow the advice regarding lots of liquids and get as much rest as you can (even though with a toddler and your uncle) - WHEW! Good luck!

The way you described your uncle and toddler's hand holding was very tenderly beautiful. I could just picture it. Thank you so much for sharing that precious moment.

It IS hard to see a can-do person, especially (for me anyway) a MAN get into that physical state. Daddy suffered through many things and his "loss of dignity" being one of them. However, as he continued having stroke after stroke, it didn't bother him anymore.

The CNA's in the NH where Daddy was used to rub mineral oil onto his arms and legs. I also brought in a cool-mist vaporizer which seemed to make him more comfortable.

You've already been given some great advice. Just wanted to add my 2 cents worth.

Janie

hi cari,
nice cup of tea for you here.
my dad had v dry skin - don't know if you have it where you are but i got E45 cream for him to use - & yes, plenty fluids, not tea or coffee tho' cos of the caffiene - lots of fluids does help with dry skin.
pats - you're right - the 36 hour day is such a good book - lots of information & presented really well. buying it would be a good investment.
cutting out labels & sewing them in to smaller sizes is not daft - you'll find you develop a lot of cunning & i don't think this is anything to worry about so don't feel guilty - whatever gets you through. you sound a very practical & far thinking lady.
as for telling friends & family - just tell them - explain as much about the illness as you can - maybe see if your doctor has any giveaway leaflets giving the basics so you can give them to them to keep & read at their own pace. it is a scary illness esp. if you don't know anything about it - the more clued up the less of a shock any odd behaviour will be. some folk will shy away & not be able to deal with it - that's just the way it is - personally once i had explained what was going on most of my family & friends were just great & really supportive. some were still a bit ignorant but they meant well so i didn't push it. unless you have personal experience i think it is a very difficult thing to fully understand.
that was such a sweet story about the hand holding - & your poor cake - it's good to still be able to laugh - i used to get quite hysterical on occasion but it really helps!
i hope you are all feeling better soon - when i'm ill i always get more emaotional & neurotic.

CARI: Glad to hear about the hand holding. So sweet, and true that sometimes that is what is really needed. Store that memory in your "Memory Bank" so you can pull it out once in a while for reassurance.

Can't answer all questions, but do have a couple of suggestions. First, BUY the paperback copy of the 36 hour day. It is as much a reference book as anything else and is not always an easy read, especially if you are short of time or emotions. Use the library for other books.

Someone (forget who) turned me on to Alpha Keri Moisture Rich Body Oil. Add it to bathing water. Some Home Health Aides may add mineral oil to bath water or even just rub mineral oil into extremely dry skin. The better skin creams contain Vitamins A, D, and E. I used 2 brands (both from home health type stores): Ca-rezz cream and Shield skin cream. We preferred the tube type as it is easier to control the amount that comes out and easier to handle for bed care. The Keri oil was purchased at our local Sav-On (large drug store).

Also make sure he gets plenty of liquids. The body can't always spare water for skin if it needs it for other functions (my own opinion---not medical).

I would suggest telling him what you are doing as you get ready to do it, but use a matter-of-fact monotone type voice. You never know for sure when he will be aware, so don't want to startle him by not informing him. At the same time, don't make an issue of each step (especially in a loud voice) or appear to be ordering him to do things. Just a simple: "well, that arm is done, let's do the other arm now. Ready to get your toes washed, hope you're not ticklish today. Need to roll over now so I can get your back clean. Etc."

I had Momma living with me for 11 years so have had to deal with a number of things, but none of them specific to males and male ego. Some things I can guess at since I am married to a slightly Macho type, but there are others here who have been dealing with husbands so probably can help you better in that area.

My thoughts are with you and your family.......PATS

Thank you all so much for your welcomes and support.
Friday I was here with just my son and my uncle so I put my son in the baby backpack and went downstairs to start the day. I found my uncle in bed, confused and telling me he had an “accident” I got new clothes for him, baby wipes and some water in a bucket and set about cleaning him up. I have never done this before other than on a baby/toddler so it was a learning experience. It broke my heart to see this once hulking can-do retired cop brought to this. He kept asking what had happened to him but he was following my requests for him to move or roll slightly as I was cleaning. The entire time my very active toddler was unusually quiet and still almost like he knew his regular activity would be too much for my uncle. Once I had new boxers on him I knelt down to kind of thread his feet into his pants and my son reached out and grabbed my uncle’s hand. My uncle held his hand back, then started to look at his hand, rub his thumb across it then slowly looked up his arm and into my sons face and as weird as it sounds I could see him coming back. He smiled, sat up straighter and said “hey sparky how is it going today?” and then my son started in with babbling and waving his arms and feet all over like normal and they started conversing back and forth.
I swear for whatever it is worth I will never forget that hand holding moment. I was too busy with the mechanics of getting him dressed and what he needed was someone to hold his hand and wait for him to catch up. I know now that although I may not always be able to reach him my uncle is in there somewhere.
He seemed fine the rest of the day if you stayed on past topics and the nurse was able to call the Dr and he has 2 medications for his gout now. This morning he recognized me but asked “so where are you living nowadays?” A physical therapist has been coming by and he can use a walker but only assisted so that helps for Dr visits in the future. The therapist had me round up a commode (sp) for next to his bed so in the night if he needed to move his bowels he would see the thing right there and could slide over to it. I am relieved to hear they can phase in and out of stages because sometimes he is just gone, others he can function-almost on an hourly basis. I hope he does level out at some predictable place once he is reoriented to home.
I am on a very steep learning curve here and I appreciate your patience with my questions.I have been printing things off of this forum and showing them to my husband. We both appreciate your support here and the wealth of experience and the willingness to share in this with others. I am going to get that 36-hour day from the library, I believe with some structure this will be manageable but for now I feel like it is coming from all sides. I was put on antibiotics for walking pneumonia on Thursday, my older son and husband were diagnosed with mono Friday and my toddler has a cold. My birthday was this weekend and we snuck in time for cake. I sat down with toddler in lap, blew out candles and sat down to cut the cake. My toddler promptly vomited his daily intake of food all over my cake. We all sat there staring then my uncle said “well how do you like them apples” and we all burst out laughing. I don’t think my uncle knew why we were laughing so hard but it was a nice release to all the madness that seemed to come on so fast.
I do have more questions..for all of you:
on sponge baths, is it better to talk them through it or do you think that confuses them more? His skin is just awful, these large white scales-dry patches I know it sounds silly but is there some type of lotion that works better on elderly skin?
And on dressing, he has lost 30lbs so his clothes just fall off of him. I tried to get a small sweatshirt on him but when he saw the tag ego/fear/? kicked in and he now refuses to wear anything but XL and 40 waist boxers, pants, shirts and he inspects every tag. His waist measures out at 34 inches so I was thinking… I could remove the XL tags from his old clothes he doesn’t wear and the 38/40 tags from his boxers and use that ironing adhesive and put them in the new correctly sized clothes. Would that make me as out of touch with reality as he is right now?
My husband thinks while he seems to be still confused but coming back up a little each day that we should get several pair of his favorite jeans in a reality based size now and several T-shirts and sweatshirts all the same colors and phase out the many choices of brands, colors styles in anticipation of some severely confused days. Have any of you done anything like that? Is that what is coming-my uncle being set in his ways about clothing?
Sorry for the long post again it is just so good to tell people who understand what is going on and to ask questions I feel are too silly to say aloud to the nurses.
OH, his friends keep calling, people he has known for years what do I tell them? He spoke to one but I tell you the guy must have hung up thinking my uncle was on IV vodka –made no sense at all.
How did you inform friends and neighbors about what was and might be?
thank you again, Cari

I also read the "36 Hour Day".It kept me captivated through the whole book.A good book.

The 36 Hour Day was the ONLY book available when I first started the journey with Momma. But I read the WHOLE thing!

Guess it was the curiosity in me. Also the fact that Momma was not so far advanced at the time so that the extremes were in the distant future. Also the fact that not all go through every symptom listed was a big help to me. I was able to read about the more extreme behaviors knowing that they might never occur with her and yet be forewarned if they did.

Same book, 2 different readers......PATS

Jeannine,

You are right about the stages. It's common for people to be in more than one stage at a time. And they can go in and out of stages. At times it can appear they are a little better. The next day they may be a little worse. Nothing stays the same with dementia.

Ann,

You really know a lot about what to expect. Your insight and comments are very helpful. A bbok I would reccomend to everying is the 36 Hour Day. I bought when Mom was first diagnosed with Alzheimer's. At first I was only able to read the first 3 chapters. I didn't want to know what was ahead for us. Only read as much as you can deal with at a time.

Vicki

welcome cari, think you will get a lot out of this forum. unfamiliar surroundings will knock someone with dementia way out of kilter - try to get hold of some books on the subject as well as asking questions here. ask for help from other people too - even if you start with just a little bit of help it makes it easier for everyone concerned to accept when more is needed.

one of the first major signals that there was something seriously wrong with my dad was when we had him to our house for christmas dinner(my mum was already in care) 2 years ago & on the way back he asked me "if it was a cat ann had?" - i'm ann ( & we have a dog) & that question really threw me. but he made a quick recovery & tried to make out he had just got his sentence mixed up. at home in his own environment he had been functioning just fine. so you see how easy it can happen - change of environment plus any kind of illness - even a cold - can result in major memory confusion. just seems to be how it goes.

keep posting.

Welcome Cari: I think you will enjoy these forums. They have helped me a lot, and Sugarlips I finally went to that web site listing the stages of Alzhiemers, I must admit my dad fits all the way up to 5 and some of 6 on that list. I assume not everyone shows the same problems at each stage, but he fits an awful lot of them. His being in a hospital, always threw him for a loop, he hated being there, but now I recall how he did not even know if I had visited him the day before or not. He never remembered even being in the hospital once he came home.

Jeannine

Hi Cari,

Welcome to the Forum. You have been given some really good advise. I will add just a couple of things. Being in the hospital and having surgery can cause the dementia to come on really fast.

As to what stage he is in you can read the stages and match his behavior to the stage and see where you think he is.Stages

Keep posting and let us know how you are.

Vicki

[ December 07, 2001: Message edited by: Sugarlips ]

Cari:: Boy you are in a real situation re Alzheimers. Edyth Ann & Janie R gave you very good advice. Please act on it right away. You need help for your Uncle.

There are 7 stages of Alzheimers, my husband is in 5-6 stage. Many of the actions your Uncle is doing sound very familiar. Call the Alzheimers Society , make an appt with a geratric Doctor & a neurologist. Hope we haven,t frightened you but for your sake and your Uncles please act on the suggestions.


Take care keep posting Eleanor

[ December 06, 2001: Message edited by: Eleanor ]

Cari, Edyth Ann has given you some great advice. She's "been there/done that" so she knows what she's talking about!!

I'd like to address a couple of your other issues as well.

1. Regarding his meals, you know you can always buy FROZEN meals - breakfast/lunch/supper. That way you don't have to cook.

2. Consider a "sponge bath" instead of a REAL bath.

3. There are medications for GOUT. Could be the visiting nurse can answer your question on that one. My husband has occasional gout flareups, but NOT to the stage you mention. That sounds awful!

4. "Max Assist" = According to what you said, if he can't walk and can't eat by himself -- that's pretty much self-explanatory.

5. Same old, same old - regarding relatives. They run from the situation, same as the rats from a sinking ship.

6. There ARE stages of AD; your local Alzheimer's Association can advise you on that.

7. From what I've read here, Aricept doesn't "bring the AD person back", it just helps to sort of slow the progression.

Good luck and please keep posting!
Welcome to the forum and let us know how it goes with you.

Janie

Cari,

Anytime Alzheimers is diagnosed it is called "probable" Alz. Your Uncle is sho0wing all the behavior patterns of Alz. and Aricept is a medication for Alz. symptoms. You need to learn a lot and real fast.

1) Contact the alz. association in your area. They can give you a lot of information.

2) Your Uncle may regain some o0f his abilities from pre-hospitialazation. Hwever chances are thatthe distrubtion of his normal routine has actually revealed his disabilities.

3) Your Uncle should NOT DRIVE even if he does get back to where he was. Take the keys/car away now and do not return them!!!

4) Your Uncle is at a stage where he will need a lot of supervision and care. You are going to have to look at his enviroment and Alz. proof it!! Since he is up at nights it is vital you make sure he can not get out of the house alone! Wanderiongb is one of the biggest risk factors to someone with Alz.

5) Ask the visiting nurse all your questions. She should also be able to help you with phone numbers and agencies to call for information and assistance.