We are going for some major tests this Monday and for that reason. We've been dealing with this disease for 6 yrs, at least, and honestly, I'm not so sure what we are dealing with. No major tests have been done, just mini-mentals. I'm anxious to know exactly what I can expect, and as of now, I don't know. My family has asked me, what I expect to learn. they are not dealing day by day. I really need to know what to expect, and sometimes, I feel they just say alzheimers, as a catchall for dementia. Maybe they are right and it doesn't matter, but I feel it does and the sleeping 20 hours out of 24 seems unhealthy. Even though, I admit, it's easier for me when he sleeps all the time. I have a certain amount of freedom. but I took advantage of going to a friends home for chat last evening because he was sleeping, and of course left him a note, my cell number and was only down the street and gone an hour. he woke up, and just paced the house til I got home, and was all upset. so there's really no freedom, even when he's sleeping. If I had been home, he probably would have slept for 2 hours more. LOL
ok yes, been there done that, i think they have a means of 'sensing' that we are close or not. my DH will be sleeping when i tiptoe out and snoring and less than a minute later he comes looking for me, and if hes sleeping on the couch i do laundry hes up and looking again. that part doesnt change, divvi
My brother-in-law wondered why I was "making" DH go thru the testing if I was already convinced he had dementia. I tried to explain the different symptoms of the different dementias. And that I thought it was important to know what we are dealing with. I told him he needed to educate himself because I would need his help from time to time. Not sure if I got thru to him (bro-in-law) or not. Thank you again for your help...now and in the future. Sheila
Good Luck with your brother-in-law helping. My husband's brother does nothing, granted we don't live close, however, he could call. Don't get me wrong, he is a very nice guy. I am sure after his grandmother, mother & now his younger brother suffering from dementia, he is scared.
Welcome, newbies. One of the best things about here is that it's HERE, all the time, people seem to post all hours of the day and night and we get to know one another and most of all, accept one another. I don't know why, maybe Joang is filtering them out, but although everyone here is frustrated to one degree or another, or despairing or depressed or confused - no one seems to get mad at someone else! (on the board) as happens on many boards. No one's pushing an agenda. Just being able to express ourselves here is a great relief.
Do try to get in an AZ group near you through the local chapter. But that will probably be once a month or once every couple of weeks. Here is 24/7 and that makes up for the virtual nature of it.
Kaydee, I think a lot of problems that the sibs or kids of our spouses have in relating to us, has to do with them fearing that it "runs in the family." That's scary, no doubt about it!
Sheila, sorry, but except in the larger sense, you WON'T know what you're dealing with by the testing. Read the resources Joan has listed on her homepage and that will tell you more but as we say, dementia is dementia is dementia but no two cases develop alike.
Briegull, I know I am new and naive. No matter how much I read I know I will always have more to learn. And reading isn't going to totally prepare me for the future. Believe me, I'm not looking thru rose colored glasses. I don't look forward to this journey. I don't want to make this journey. I am scared to death and cry at the drop of a hat. Luckily at this point DH isn't to the point of needing my constant care altho I DO worry about him if he or I am away. I know it is coming but who knows when? Seems like the past year has really shown decline in a hurry. I am scared to find an AZ group...that is admitting that he really IS ill. Like an alcoholic going to his first meeting I guess. There IS one about 15 miles from where I live so at some point I will go. Right now I plan to utilize this site. I am assuming that Joan's homepage is the home page to this site?????
sheila, yes, that is the home page to this site. There are loads of clickable links on the page, and Joan's blog which is always worth reading because either we have experienced it, or will experience it.
Why do you need to know which kind of dementia it is? The big reason is that some meds that work fine for most dementia are an absolute no-no for others. Also, if you want to have any idea of how long the future will be, they need to know what they are dealing with to have any idea of the answer to your questions. It is really important to have some idea of what kind of dementia it is, because except for Alzheimer's dementia is not a disease. It is a symptom of disease.
There is a second very big reason for testing for diagnoses. There are diseases out there where dementia is the symptom, and which are fixable. The big one is thyroid, but there are others. My husband's doctors went down the checklist and what was left was a CAT scan which showed what his multiple resuscitations had done to him.
Outside of that I'm opposed to any additional testing. They can't fix it, so why test for it? We do month blood tests for my husband's medications and monthly pacemaker tests. That is different. It doesn't hurt. It doesn't take a bunch of time. And, in the case of the blood tests, we CAN FIX IT, but adjusting the medications he is already on.
To add to what Starling said ... not only are some AD meds contraindicated for some other types of dementia syndromes, but other factors that can cause dementia may be helped by non-AD meds. For example, patients with vascular dementia should usually be put on anticoagulants, to help prevent further damage.
Chris is right, many GPs do use AD as a catchall for dementia, and assume that a patient with dementia has AD when the patient may have something entirely different. One of the doctors who responded to my questions about resuscitation etc said that nowadays, many doctors are lumping anything that doesn't appear to be AD under the "vascular dementia" umbrella.
That's why it's so very important to find a neurologist who specializes in memory disorders.
Thank you for this information. I've been reading some of Joan's blogs....what a future we face. Today is my birthday. The florist rang the doorbell around 9:30 with a beautiful boquet of flowers. I turned to my husband and thanked him. His face dropped. They were from my sister. He "was going to get some later today but wasn't sure what flowers I like". He forgot. We then went to the grocery store and bought the best steaks the butcher could cut, went tot the farmers market and got fresh sweet corn. A couple of bottles of wine....and he will fix my birthday dinner later. I felt sorry for him. But other than that, today has been a good day for us both.
We will have a diagnosis on the 25th. I am counting the days.
Happy Birthday Sheila, It's my birthday today too. Glad to hear your day is going so well. I will be waking my DH in a while so we can go to my son's for dinner. I had rather a bad morning, but I'm recovered, and ready to move on.
Happy Birthday Shelia and Chris. Shelia sweet corn already sounds so good, ours in the midwest is not ready yet. Shelia and Chris enjoy your birthday dinners and your day.
I bought the Rescue Remedy Pastilles and although it certainly wouldn't do anything for a major problem, it really does seem to help with more minor anxiety situations. I've used it several times and basically it mellows me out and allows the deep breathing and other things I use to calm me down (like coming here to chat) to work just a bit better.
Starling beware. I swear by Rescue Remedy. A friend was using the Pastilles (very pretty container) and she developed the runs big time. Turns out it was the sorbitol in the candies. Of course not everybody is that sensative. I prefer the spray.
So far, so good. Of course I've never taken two in one day.
But thanks for the warining. I do have some of that kind of problem almost all the time. I will look into the spray now that I realize that the stuff actually does do some good.
where do you buy it? locally ? i found it thru amazon but not sure its that fresh..haha...divvi i will most definately get the spray and try. thanks bluedaze an starling
My local health store had it. They had the entire Bach set of remedies. They also had at least two other brands of herbal "stuff". Try a local health food store, not one of the chains that are in the malls.
divvi I get it at my local GOOD health food store.They are always running out of it so I know it is fresh. GNC also carries it but probably not the complete line which is extensive.
thanks sunshyne! just ordered the spray -cant wait! will use on me, my dog when it rains! and of course DH maybe??? :) bluedaze, you convinced me to try!
I really wasn't aware I was under a great deal of stress. But a dear friend of mine pointed out to me that not only was DH in stage 5/6 of AD, I have progressive macular degeneration and am slowly loosing my central vision. I've had to quit driving completely. DH will be stopping VERY shortly (I won't go into my meltdown last Monday--but I will tell you it was a realy beauty. I don't think I've ever done that before and we've been married over 58 years). I sure did get a lot of attention.)
Today I asked DH if he'd like to water my planter boxes. He did and I thanked him for it and after he coiled up the hose, I commented the boxes look really nice. He puffed all up and said (I swear!) "I'm glad you like it. Now I won't get a spanking, will I?"
Bear in mind this man served in WWII as a merchant marine, worked as an inland boatman for a few years and then went to work as an experimental sheet metal mechanic until he retired. He is a devout Christian, led boy scouts, taught Sunday School, raised 5 children and taught them to be God-fearing, hardworking, industrius citizens. and when he said that, I was speechless. At first I thought it was a joke and then he grinned at me like my sons did when they were little and I told them what a good job they had done.
I am going out to pull weeds. I'll work with a vengance and that will help me calm down. Thank you dear people for being here at this point in time. Bless all of you!!
Mawsy, get yourself a bottle of this 'stress' spray! i got on a bit ago on bluedazes and sunshynes advice. i cant wait to spray, sniff,and post..standby later gang. could get interesting with lots of us sniffing here late at nite::))divvi
Just exactly what are you sniffing??? Airplane glue? (ha ha) Although, that might help. Just kidding. My friend told me to get some lavendar spray and spray my pillows. I'll have to try that.
divvi=make sure you tell us how Rescue Remedy works on your dog, A while ago took a college course on therapeutic touch for nurses. I tried it on my cat. I wish you could have seen the look I got. Interestingly you do not touch the inividual but rather smooth their electromagnetic aura.
Mawsy, its the RESCUE REMEDY juice the two above are pandering!:) its for calming your nerves! i hope. you spray in your mouth like listerine i think and drift to lala land hopefully- its made of all sortsof flowers and natural things that facilitate a calming sensation. anyway, i got a bottleon the way..whooohoo. my lil chihuahua and i will be trying it as soon as it arrives..:) it did say something about pets on that site, sunshyne..Joang,if its works well you have to plug that website in here for everyone to download a bottle:)and get rich. ha. divvi
divvi, I tend to be very skeptical about things like this. But the first site I found when I googled for it was one where pet owners were talking about how well it worked for schizoid dogs, cats who usually objected strenuously to being driven somewhere, etc. I figure if it works on a pet who can't possibly understand what it's supposed to do, it must actually have some benefit.
Back when I was first diagnosed with an inoperable spinal problem, the neurosurgeon told me to try anything, "even acupuncture", rather than risk surgery. (So far, things are going well, pills and a brace work fine, thank heaven. I go green if anyone gets near me with a needle.) I thought acupuncture was a pile of ... Then I started reading about animals responding extremely well to it, and decided, as above, if it works on an animal, there must be something to it. Nowadays, lots of mainstream doctors will suggest it, and reputable organizations such as NIH are studying why and how it works, rather than questioning whether it does.
I will have to get off my keester and order some Bachs Rescue Remedy for myself.
yes i went back and reread the part for animals. those that have issues with traveling, etcthunder, (mine!) i hope it calms him down he goes beserk. and i will spray a little in DH pudding :) i am a firm believer homeopathic mixtures do work. my brother is a pharmacist by trade we discuss lots of this by email. what to take, not to take. i believe it was you, said saw palmetto for prostate? he say same thing.:) he takes it himself-i wouldmuch rather try the natural way rather than the happy pills , those scare me to death for some reason. divvi
Yes, my husband's dear PCP (who has now disappeared on us, durn it) recommended the saw palmetto berries to control frequent urination.
I suppose the "natural" remedies are every bit as much drug-like as "drugs" but still, they seem better for some reason. I'll consider the Bach's where I'm still very resistant to "drugs" for depression or anxiety. (Besides, marsh said he didn't see where it could hurt...)
Bluedaze, have you read the book "Hands of Light"? It's all about healing without touching. I'm really into all of this. Had planned on being trained in Reiki before I was hit with all of this. I'll get back to it eventually.
The Chinese use acupuncture to anethesize people for surgery!
Many, many medicines come from the plants in the Rainforest. That is why it is important to protect them. They discover cures for various things, then if possible, make the synthetic version. I spent 3 weeks in Brazil & was in the Rainforest. It was beautiful! I'm sure I was in places most Brazilians had never seen.
Rescue Remedy is good, but not for severe anxiety or depression. I will check out the pet ones though, having just returned to a trip to the vet for an annual & rabies shot. Poor Katrina, having been rescued from the hurricane (hence her name), gets really stressed out around strangers. Just sort of freezes in fear. I could never get her to do what the strangers do, had her manicure too. She apparently has forgiven me, had her head on my lap afterwards.
I was thinking just the other morning, trying to catch up with all the overnight posts, that I haven't laughed so much in years. Such nice people, such wacky senses of humor. Such good therapy. Such good friends...
At the zoo - indeed at all US zoos - there are a lot of geriatric animals. (primarily bec. the late 1980s was about the last time that animals were imported from the wild and they've just lived on and on) Many of them have arthritis. And many of them are given glucosamine, as are a lot of dogs and cats. I've seen animals really feel much better once they start on a glucosamine regimen, so I started it too and have little arthritis. We can learn from the animals.
briegull, when my vet recommended glucosamine for my cat (she started on it several years ago), he told me the veterinary formulations actually had better quality control than the formulations for humans. :-) I've been having some pain in my shoulder, and wondering if I should start taking it myself. (I suppose I should follow my own advice, and talk to my doctor first.)
doctors are funny about glucosamine. They usually say, now, is it doing you any good? when you tell them that you're taking it. Mine never MIND, but they wouldn't necessarily have said yes go ahead if I'd asked permission.
Marsh-I started taking glucosamine a long time ago when I was giving it to my husband to postpone TKR. When he became very demented and required all my attention I forgot to take the med. Within two weeks the hip pain I was taking it for returned. Peoples' pharmacy believes the condroitin molecule in the combination pill is too large for good absorption.
Has anyone heard of the liquid form of glucosamine and condroitin in a drink called Supple. I've been giving it to my DH for over a week now and it does seem to help his arthritis. And No, I do not have any connection with anyone involved with making or selling this product. We've just tried so many meds and nothing seems to give him much relief. I guess we're willing to try snake oil or anything now.
Reading this part of the thread I'm finding it even funnier that last week, for the second time, a specialist sent me to get something from the over the counter section/health food store for one of my problems. And once again, he was taking the stuff himself.
The first time it was fish oil for arthritis pain, so I could get off the heavy pain pills. It worked like a charm. The second time it is Slow-Mag for my middle of the night foot cramps. I haven't been on it long enough to know if it will work, but oh I hope so. It turns out that both the doctor and I are taking two specific medications that drain the body of magnesium.
No one has tried to put me on glucosamine, but I take thyroid pills, and I think there is a bad drug interaction there or someone would have.
Regarding leg cramps--I've had them so bad I couldn't stand up. The ones that cramp the inner thighs and real doozies. I complained to my GP. He told me to get a liter of diet tonic water and drink 8 oz. a day for a few days. It was a miracle. I keep a bottle on hand just in case I get some more. It has some quinine in it but they don't prescribe quinine any more except for malaria.
Isn't that amazing.
I was taking condroitin and glucosamine for arthritis. I couldn't tell if it was helping or not but he told me to quit taking it. Didn't say why. So, I quit. Still don't notice any difference.
Try the tonic water for leg cramps. I told my son about it and he tried it and it worked for him, too.
Mawzy, I have arthritis in back and hands quite badly. A friend in the same situation turned me to pharmacuetical quality fish oil capsules..a bit spendy, but far purer quality than OTC stuff. I couldn't walk for more than a couple of blocks without my back screaming at me so I had to sit on the curb...after more than a year on this I can walk forever and no longer have to wear hand braces. A miracle for me. I also take Pilates lessons which have helped too. Just a thought.