I was hoping I could handle all this stress without medication, however, I don't think I can. I had a complete meltdown last night, screamed, threw things, I felt like I was crazy, my whole body was numb. I really don't know why I was so upset, nothing was much different than any other day. Me walking on egg shells trying to not upset him, him staying in the garage most of the afternoon, then coming in to sleep the evening away. For some reason I couldn't stand just to sit & watch him drool in the chair. I have suggested if he is tired at 8:00 then go to bed. It always seems like that is a slap of reality seeing him slumped in a chair all evening. I should have been in a good mood, I had a nice time this weekend with my family, my oldest son & family were visiting from Georgia (not staying with us) I have been trying to figure out why I was so upset. I am worried about starting on some medication. I don't tolerate medication well, and I know someone in this household needs to have their wits about them. Now as I write, he is rating he is a fool. He spent all this money on a Condo, there are too many clothes in the closets & whatever he see at the moment.
I'm going to therapy tomorrow for the first time in my life. I was also afraid to take anxiety meds unless I was also in therapy. One of the things I'll be talking to her about is something to take for when things get nutty around here.
Like you I am on the edge. My son-in-law turned the TV set off funny and I couldn't get it to work on Sunday. It is an altogether too fancy Home Theater setup. It is possible that he just left it on a station we don't get and that WAS at least part of the problem. After I got it fixed (took a phone call to them for help in figuring it out) I wrote down what the setting were supposed to be and a reminder to try just changing the channel FIRST if it happens again.
But I was in a total panic. Heat flashes. Blood pressure through the roof. I don't have a whole lot of wiggle room these days with my emotions.
Basically, don't feel like the lone ranger. In the past I've called the Alzheimer's Association hot line to get "talked down". In an emergency that works. But you might want to consider therapy in addition to a prescription. This place is great, but it really is not enough.
(And Thank God for spellcheckers. Would you believe FIVE mispelled words in this post?!!!)
For those of you who are reluctant to take "drugs" I have had good luck with Bach's Rescue Remedy. You can Google for info. The ladies in the health food store I haunt got me started on it. It really helps.
Starling - how do you get spellcheck on this site? If you've figured that out you know more than I! Kadee -Sometimes one little thing will bring up all the unexpressed anger and frustration and we just lose it. The worst thing now would be to blame yourself - it is done. If you can get some time to yourself and talk to a therapist that surely could help. I don't know how we can do anything when we have a spouse that shadows. Hopefully you are not in that spot, or you can have someone come in to give you a break. I also think that having a good time with family makes the contrast of our normal lives these days even worse. In another post there was talk of resentment and I realized I don't feel resentment - I feel too numb for that. My DH also berates himself for what he can no longer do and I, too, find that very hard to deal with.
So I googled for Bach Rescue Remedy, and found a web site where they were discussing giving it to their dogs and cats, to keep them calm under stressful situations. :-)
bluedaze, I know where to get that. Our local health food store carries it. I've never tried it, but it sounds like something to try before I go on the "big guns".
frand, I think that all of the updated versions of Internet Explorer have it. I have a button on one of the button bars with the word "check" and the ABC checkmark logo. On another thread someone described it as well. I thought it was something I had downloaded or that came with my Google toolbar, but maybe not. Maybe it is built in.
I answered on the spellcheck discussion. Whatever, I have looked everywhere on my computer and can't find spell check. I have it for email, but not this. So for now, if I a word doesn't look right I find another that does!
As I've said before, I'm on Lexapro, it is for anxiety & depression. I've been told it is the most tolerated drugs of this type. Can't imagine what I'd be doing without it. But my cousin tried Sam E after her mother died, and said it helped her a lot. It's over the counter. I know a real Bach Remedy expert & he said it was not for "serious" conditions, but worth a try. I tried the Bach Rescue Remedy, still in medicine chest, didn't make a dent in my feeling overwhelmed. And yes, you can get it at any health food store. Contains 27% alcohol. Could that be the stress reliever? There are lots of different Bach Remedies.
I think we are so used to having problems that have solutions, and it is only natural to feel frustration with a problem that has none. And one that gets worse & worse & beyond our control.
I know in Mexico the passion flower, ie 'Passiflora" has been used since ancient times for sleep aide and anxiety and calming aide and even infants for colic. with my last husbands grandkids the moms gave a dose at bedtime to sleep allnite. it can also be googled and found at homeopathy shops-divvi
Copy and paste this link - http://www.thealzheimerspouse.com/stress.htm- it is one of my previous blogs on STRESS.
We all suffer from it, and we all try different ways of dealing with it. I will say that after I "gave up" my two year long struggle to relate to my husband as he used to be, and started relating to the "disease", my stress level went down. If you haven't read this particular blog, go to the home page of my website - www.thealzheimerspouse.com, scroll down the front page until you come to the blog - "I've Accepted the Relationship Change - Now Tell Me How to Live with it." And the one above it about how my new method of dealing with him worked.
Very well said. when you stop trying to relate to how your DH or DW once was and you start dealing with the disease it does lower the stress level. It's kind of like that saying of accepting the things you cannot change and the wisdom to know the difference. My DH now is far enough into the disease that I stopped trying to relate to how he used to be at least 6 months or more ago. Sometimes I forget what my healthy DH was like. Yes this jouney really stinks. I want you all to know I can relate to everyone of your posts and I am here for all of you. God bless you Joan for helping all of us out on this difficult journey.
I had that kind of meltdown not too long ago. Most of the time I'm fine, but who knows what can set you off. Remember, you're already under tremendous stress, and holding it together. I used to cry at the drop of a hat, and I'm better now. I take zoloft every day, and feel comfortable with it, but my meltdown happened even while I was on zoloft. I think Joang hit the nail on the head when she said we have to stop trying to relate to our spouse as he used to be, and start relating to the disease. It's not easy, but it does help
Because I have had this site to read and learn from others... I was able to make that transition earlier. For those of you who started this journey before this site and had no place to go... I am very sorry for what you had to face alone. I listened when Joan and others talked about the breakdown of a marriage early in the process. As a result I think I was more able to understand that my survival would depend on my being able to "see" things differently. It really has been a godsend. I can honestly say that I don't think very much about how my husband used to be. I know its gone and I have to relate to him as he is now. Again, with out this site it may a have taken me so very longer to get there... and much more heart ache. As far as meltdowns... I think most people can handle the big things because they have to, and then some little thing happens and we explode. The important thing is just to move on.
I feel like it does my soul good to have a breakdown every so often. i dont take any meds and i feel like i probably should have had them in the early yrs. but after all the rants/raves i do at times it has helped me mellow out some in these latter times. i hope my body can take it not just my mind. i am still on nutrisystem and los 14lbs so far so good but a long way still to get where i need to be for colesterol/etc.even the 'flashing' has diminished some with the weight loss so i am encouraged. now i want to look good for me, not DH as it always used to be..he says he loves me like i am..awww..he can be so sweet still. thats the jekyl part-:) ps after my meltdowns i feel so at peace for a few wks! divvi
Thank you to everyone who replied to my post. At least now I know I am not crazy (Well maybe a little) or evil. What really kind of scared me, was that I was not sorry for all the screaming & throwing things. Even when he tried to tell me about how he felt about being confused all the time. I even shouted "not everything is about you all the time." I did however, feel bad when he ask if I wanted him to sleep in the other room. Somedays! I am going to try to take your advice & try to relate to the disease. However, it will be hard. Thanks again. Kadee
Kadee, I'm so glad you have been screaming. Now I don't feel so bad that I do it sometimes.LOL I haven't thrown stuff yet. Guess I'm afraid I might regret breaking something. And it's really true. So often it seems like it's all about them. Then I feel guilty when he apologizes and says that he knows he's a real pain in the ass. The middle of the day he's pretty good. Now if we could just do something about the getting out of bed in the morning and going to bed at night. That's when he's really confused. I know that I should be very thankful that i don't have it as bad as a lot of the people of this board.
I remember the first time I said, "Not everything is about you all the time." It wasn't the last and i will probably say it again. It fits the situation.
I have been on medication for the past year and need to stay on prosaic until I start forgetting to take it. Years ago I took it for a while and when I started to forget to take it, I think my body was saying, "You don't need this now." Currently, I never miss a day, small dose, but enough to take the edge off most days - but not all. Someone previously said that she resents having to take medication to deal with AD. I agree on that one, BUT, if I didn't have this resource where would he and I be?
I have never been a person to have tantrums and two years ago I was enraged all of the time - this AD drive you to it. Mind you, we didn't know what was going on. My husband is a psychologist and 8 years ago he said, "I think I have Alzheimer's." EVERYONE, doctors, psychologists, over and over again said absolutely not - PTSD and acute anxiety. Weekly therapy, doctor visits frequently. We were trying to be on top of what ever was wrong.
Finally came the morning when he couldn't put the leash on the puppy. I left for work and on the way called his doctor who told me to get him to the emergency room as it sounded like a stroke.
Many tests later and the "best in the NorthEast" neurologist determined it was primary progressive aphasia, or PPA. By a pure miracle, when visiting my sister in Scottsdale, Arizona, we connected with Dr. Richard Caselli, a world expert in PPA. I could see that within minutes of his talking to my husband he had eliminated PPA. After two and a half hours of intense physical and psychological testing, the conclusion was "variant form of Alzheimer's."
That will be two years ago this December. Eight years of struggle, not as bad as it will probably get, but bad.
I take medication, do therapy weekly, participate in support groups (we both do), deep tissue massage every other week, make space for myself whenever I can, have a delightful dog that makes us both laugh, and work as a 1st grade teacher. We have some supportive friends and family that are not close enough to see daily or weekly, but we talk on the phone a lot and make visits. I try to eat right, walk daily, have been getting over a life-long worry about what other people think about me, do my best to care for my beloved - even though he can give so little back these days. I take any opportunity for respite - even for two hours - thought I prefer four days off in the woods alone. Rare but treasured, just to be alone and have no demands on my time from anyone.
I use the Bach Rescue Spray for anxiety chest pains and it is one of the few things that has ever worked, but it is not "big guns."
The big lacks in my life, other than my marriage relationship, are singing and laughing. Got to get more of both somehow.
I am the one who said I had to be drugged to cope with this. When I didn't understand that my husband had poor comprehension, (That would be last week) I thought he was just being "stupid" about things going on, or contrary, I actually went to the kitchen, brought out our dinner dishes into his office, & dropped them on the floor. No kidding. I just wanted his attention & for him to understand the severity of his poor decision making. (Take note, these dishes I was going to toss anyhow, as they had leached the black stuff from the dishwasher racks that he (still) refuses to change, so going through ruining the 2nd set.) This was totally out of character for me. Then I went from anger to depression. They say depression is anger turned inward.
oh, metamorphosis - PLEASE don't get offended, but I love your typo! You say:
I have been on medication for the past year and need to stay on prosaic...
JUST THINK, GUYS, back to when prozac and all these other meds were NOT prosaic!!!
A few years ago, the thought of taking "something" would have horrified us. Taking something would have made us lose our jobs! Now my daughter, long term user of paxil, which has kept her (and me) sane, gets reminders FROM HER WORK MED INSURANCE CO reminding her to refill her prescription!!
Some day, some day, we'll be back to when simple prosaic things give us joy again.
Well I've recently started on the journey and it has not been easy adjustment. I have often thought of seeing a doctor to ask for something, anything to help me cope with the new life I am living. I keep trying to tell myself that I am strong and I can do it. After reading many posts on this site, strong has nothing to do with it. I don't tolorate drugs well, but knowing that things are only going to get worse, I should just go see a doctor and see what he has to say. Guess my biggest problem is I have no regular doctor. I don't get sick often and when I need to see a doctor I just go to the walk in clinic. Perhaps I should see the same doctor as my husband, at least he'd have a greater idea of what I am facing and perhaps relate better than someone else. Humm something to think about. Rae Ann
I've just come back from my first therapy appointment. First ever. First of all, she GETS IT! She was horrified that any of you had ever been told to go to marriage counseling. And I told her all of my horrible secrets, the ones I haven't even told you. And she thinks I'm making the hard decisions and that it takes guts and grace to do that. I really needed someone to tell me that.
She gave me two bits of advice (very gently) that I'm going to share with you because I think all of us need to do this. She wants me to actually talk to my daughter about all of those hard decisions about feeding tubes and other end of life decisions, and the decisions to go to certain doctors and do certain tests and not to do others. I think that if any of us have made these decisions, we need to talk about them with our children.
And she asked me if I knew what my husband's life expentency was. I do not. She told me that the doctor will only tell me if I ASK. Otherwise, they will not tell me. I need to know, so I'm going to ask.
I'm going back next week. I probably only need to go back every other week after that, but this was worth doing.
So many counselors and therapists DO NOT GET IT when it comes to Alzheimer's Disease that I am thrilled you found someone who does. Now, my question - what type of therapist is she? Is her practice limited to, or does she specialze in Alzheimer's Disease?
I am going for a counseling session this afternoon with a social worker/caregiver counselor. She is one of the facilitators of our support group, and caregiver counseling is her specialty, but it's not an ongoing weekly thing. I was just wondering where and how you found your therapist.
I am planning on writing a blog about my afternoon counseling session, which is why there is not one up for today yet.
Val, I know you didn't mean to be, but you are sooooo funny. Sorry, but it does not count as a temper tantrum if you carefully chose to break dishes you want to get rid of. It simply does not get rid of the stress you're under -- no wonder you promptly went to depression.
Several years ago, before I realized there was something really wrong with my husband, he had a totally unusual reaction to something I said -- he was sitting at a computer, and he got so angry that he grabbed the cord of the mouse and smashed the mouse to pieces against the desk.
I have wished, ever since, that I could let go like that when things get really bad. I just plain can't, not even when I need to.
Briegull, I've seen a lot of people post about using prosaic, and I've always assumed they meant Prozac, but this time I finally (!) googled it. " Prosaic by Nature™ " is, and I quote, a "proprietary blend of adaptogenic botanicals is used to relieve depression, anxiety, and stress, without the side effects of prescription drugs. It strengthens the central nervous system. It tones, balances and strengthens overall body functions. Its stimulating effect enhances work performance—eliminating fatigue—and treats symptoms of asthenia (loss or lack of bodily strength) due to intense physical and psychological stress."
It appears to be well-named!
So, a question for you believers in Bach Rescue Remedy ... I sometimes pop awake in the middle of the night, with what is a mild anxiety attack. My mind goes racing around madly about something that's upsetting, and I can't get back to sleep for hours, even though I'm so tired my eyes hurt. D'yall think Bach Rescue Remedy would be good for calming me down enough to sleep?
Darn it Sunshyne, I want it to count! It was probably the most outrageous thing I have ever done. It felt like a temper tantrum to me. He kept telling me the dishes were defective, but you can see where the rubber has melted off the rack in the dishwasher & is black. NOT why I dropped them though. I dropped them out of frustration of him messing up the real estate transaction, let me count the ways.
Don't think the Bach Remedy will work for sleep, but you can give it a try. I took a tip from my son & bought the generic form of Unisom. He told me he took one for a return trip from Australia & slept like a baby the whole flight.
When I meet you here in the middle of the night, I am just waiting for the "unisom" to kick in. Works like a charm. I need my beauty sleep. I don't take it every night. But I highly recommend it, even though I am not a medical profession in that sense, just a personal recommendation. You could ask Dr. Marsh.
So, I have good news. I have been asked back for my third interview for one school tomorrow @ 2 and the second for another at 11. I feel like things are turning the corner for me & there might be light at the end of the tunnel. Thanks to all for your words of encouragement.
The therapist I went to last year (yes, a first for me, I was so despondent) I only saw twice, but she was terrific. She wanted to take my background info, etc. & I told her I didn't want to talk about the past, I have a master's in counseling, I just want to tell you about my husband, so she dispensed with the preliminaries. (She was going to explain the counseling process.) All I needed to hear was that my husband was obviously dysfunctional (first session) and that I needed to focus on myself (second session.) I would have indulged myself & continued with it, but the co-pay was $40.
Will have to check into the prosaic. When I lived in Berlin, Germany, the dr.s would write RXs for homeopathic medicines. Then you would go the apothecary & they would mix this stuff up, botanicals, etc. That's how I lived then. It is interesting the European take on things is so different from ours. There were times I needed a real RX, but that would be an antibiotic or something. RXs of the last resort.
joang, she is a family and marriage counselor. One of the reasons I questioned her about "getting it" was what was on her card as her specialties. I'm not sure, but I think she knows that dementia patients don't need and can't use marriage counseling because she has had couples referred to her in the past.
We were doing some work on what did I want from these sessions. I told her that I didn't want to get sick, because my pattern when I am under stress is to hang on and hang on and then end up with a major illness. In the past I've had "the worst case of hepatitis that any of us (doctors involved) have ever seen", pneumonia bad enough that the paramedics took me into the hospital unconscious, and just could not stand up (my knee stopped working) with pain so bad they checked for blood clots (I didn't have any of those). Oh, and a full hysterectomy.
So she isn't a caregiver specialist, but she has had caregivers as patients before. She was also aware that sometimes we die first from the anxiety and stress. And I told her that I am not crying. I'm swallowing the grief. She says I'm turning it into anxiety. And she is right.
She asked a bunch of hard questions. I told her about this place and what I've learned here. She was amazed at how much I've learned from all of you.
She is going to try to convince my insurance company to take her group on. They already are "on the list" for some of Highmark Blue Shield's products, just not the one I have which is relatively new. So far any of my other doctors have just had to ask and been accepted, but this might be different. In the meantime I got the sliding scale, and since the insurance company already does business with them (with other products) they count as a semi- "out of network" provider. It won't be as expensive as I was afraid it was going to be.
I checked on Bach's Remedy. The ingredients look benign enough. The only problem I see is that it is designed for women. Nothing said men can't take it, but everything I saw said it was for women (except for the version for pets).
BTW, the second visit to the therapist was really remarkable. At first she wanted to see me once a week, but once the Lexapro kicked in, she said I looked "terrific" and that I would only need to come twice a month. That poor girl who first staggered into her office was gone, and I was alive & kicking at the next session.
I think the Bach remedies are best for more mellow situations. This is SEVERE stress. Can't imagine why is it gender targeted. Thanks for looking it up Dr. Marsh.
Good news Starling, if you can get it passed & it won't be so expensive.
I think Vals plate breaking was just a clue to how really distressed she was at the time, she was rational enough to pick which ones to break and then unrational enough to do something outrageous for her character.:) but at heart i agree it must make you feel good or else it doesnt count. spontaneous combustion!! thats it. now i can do that pretty well myself, i have been known to throwthings -a dish or vase, usually small as i know i will be the one to cleanit up later-ha down into the atrium, same place DH likes to whizz off the hallway these days :) our place of 'sanctuary'.once i threw in the vicinity of DH but this was because of 'fidelity' issues prior to AD dx.and i came close enough to scare the bejeebies out of him..and i WAS aiming that time- he did 'get it' in that rage. i havent done it again in many yrs so i think i am finally learning to mellow out in my experienced yrs of caregiving- glad to see the therapy is working and you are finding solutions to issues. i went about 6mos with the therapist, and he was a very understanding person and gave me good insight as well. at teh time though not sure how much i inhaled of it all as i was super stressed all the time. divvi
Oh you guys. IT FELT GOOD TO BREAK THOSE DISHES! He actually turned away from the incessant tennis watching on TV & listened to me. I think he was in shock. He even cleaned them up. (Val must be losing her mind.) (Val must be REALLY upset.) HA! He even looked me in the eye while I was talking to him. I would have just left them there in pieces & fragments & shards had he not cleaned it up. I don't NEED to go into his office, I have my own. Well, for that day, I got his attention. Damn, I was tired of being the ever patient, understanding angel. I just got fed up. Of course, that was before I understood what was going on. I'm still glad I had the chance to do that. I was amazed at myself. But you're right, I would never destroy anything of value.
Me thinks I am going to be needing stress relief more than normal. We had a Neuro Doc appointment yesterday, We were told my husband has FTD which ain't flower delivery! Frontotemporal Dementia, according to the Internet, is one of the worse types...thank you very much. After reading what is ahead, I should plan the breakdown now. At least he has agreed to talk with his regular Doc about some anti depression meds...just talk for now. This particular Doc doesn't think much of any of the meds available for his problem. I'm already gearing up for the conflict.
Sorry to hear Kathi. Yeah, back in the day when FTD meant flowers were coming. Sounds like you might want to check into switching to a more understanding doctor. You're going to need all the help you can get.
Val, great news about your job hunt progress! So nice something is going right in your life!
Thanks, Dr Marsh, sir, for your help. I don't see anything about gender inequality at the site I found, though, "The Original Bach Rescue Remedy®":
http://www.bachflower.com/Rescue_Remedy.htm
Several formulations are "for the whole family, including children and pets" (surely you men fit in there somewhere!) And, now that I've gone back to look at the site more closely, they sell "Rescue Sleep", too. I do like the little spritzer, for discretely spraying yourself whenever you feel stress coming on.
Kathi37: You'll be in my thoughts and prayers! My husband probably has EOAD, but he has so many symptoms of FTD, the neurologists have tested him several times extra to make sure! The symptom I find the worst is the total lack of empathy. I have found the national FTD website very helpful. One of the wives in our EOAD group is dealing with an FTD husband, and I believe she has participated a few times with a "call in" support group that the national organization told her about. Good luck.....
Kathi, sorry for the dx. it is not any easy road to follow with any dementia. i love the idea of the spritzer for stress! but i have a better one, i read in a tipster book that if you spritz your dried euclyptus plants with VODKA they come back to life and smell like 'new' well, i am spritzing myself right along with it:) it works well when stress is coming-divvi Val glad you are getting prepped to start a job but will miss you here during 'work' hrs-take your spritzer if your husband doesnt get to you the kiddos will- divvi
Yes, I'm bracing myself for that. Patience patience patience. Oh well, I figure at least I'll be paid for my patience someplace. And the kids are so cute. I told one today I had been swimming with the dolphins a few years ago. She said she had too. I told her my dolphin had kissed me. She said her dolphin had tried, but she didn't want to. But he kissed her mom. Why, she asked, would a dolphin want to kiss my mom? Like you can marry a dolphin! It was so funny. My son sent me some things from public radio about kids. One had been observing airplanes taking off in the horizon. They got smaller as they went into the distance. So she took her 1st plane ride, and asked her mother, when are we going to be smaller? I loved Art Linkletters, Kids say the darndest things.
Divvi, I hope to God I get a job. I need it. I'm not counting my chickens yet.
You have no idea (well yes you do!) how happy I am to find this site. My hubby hasn't been diagnosed yet but will have a PET/CT and EEG next week to check for FTD. It has taken me over a year to get him to agree to any testing because he is "just fine". He's 57 and retired from a high powered job. Over the past several years I have noticed little things that only I saw. AFter our friends started mentioning things to me I knew the charade was over. After a year of trying not to bug him about it I basically tricked him into going to a psychologist with me because I was depressed. The doctor told him that in order to prove to me that he was fine maybe he should just go ahead and take the 5 hours of neuro/psyche testing. All signs pointed to FTD. He isn't the least agressive...quite the opposite. He can't follow simple direction.....we put together a grill the other night and I have never never in my life practiced patience like I did then. Finding a screw hole was a major undertaking. We got it together and are still married. Like I said tho, he thinks he is fine. Can NOT see any problems and doesn't understand when I flip out occasionally. Some days/hours are great and then he gets real confused and has a glazed look on his face. He carries one arm in tight to his body and has seemed to age before my very eyes. I guess I must be handling the stress ok for now. I'm not on meds (just alcohol). Ambien to sleep but it doesn't always work. I also wake up in the middle of the night with panic attacks. Everyone tells me to just call them if I want to talk but it isn't that easy. If I want to talk I want to and can not quit crying. Our kids are totally aware of what is going on but they are busy with their young families and I don't want to bother them. Doing odd jobs around the house costs us more when he does them than when we hire them done...but he is ok so hiring them to be done is silly! :) Thanks for letting me rant. Sheila
sheila1951 - Glad you found us! Try us - nothing you can say won't be something one or many or all of us hasn't already thought before you. We will be very good friends for you - available 24/7 - 365 days a year. Welcome to our club!
Welcome Sheila! You will find a lot of comfort & support here. You can say whatever you want. Many, many of the spouses think they are just fine, like mine. That is somewhat the norm, you will find. I wish I had cried once, but not yet a tear shed. It would do me good. You can rant all you want. Rant away. If you have questions, someone will answer. You will love this site. Everyone does. It is unique. So many great people. Who can relate to just about anything you are going through. I don't hold back, I just tell it like it is. It is usually outside of the comprehension of family & friends.
Welcome Sheila, Also glad you found this site. As Frand said, nothing you can say will shock anyone here. My husband is also 57 years old. His memory has been failing for 5 years now. I find this board a godsend. Kadee
Welcome to my website. I know you will find the support you are looking for. We are all in various stages on this journey, so there is always someone who has been where you are and can help. Please check out the home page of the website - www.thealzheimerspouse.com- and look at the previous blog section - scroll down and read the topics that interest you. There will be many you can relate to - like stress and patience. A lot of one and not enough of the other in most of us. Also, in the welcome section on the home page, there is a link to information for the newly diagnosed (even though he hasn't been officially diagnosed, the information may be helpful to you. )
Absolutely, I would recommend going through the full neuropsychological testing. It is extensive, and it picks up a LOT that the "quickie" short tests miss.
If he is diagnosed with FTD, let me know. I have a friend whose husband has FTD, and between the two of us, we have a lot of information.
Sheila, find the 24/7 hotline for the Alzheimer's Association. Yes, they take care of all dementias. My husband has vascular dementia and they have been amazing about sending me information and just letting me talk when I needed to. You can call them in the middle of the night and cry if you want to. I've called them after my husband went to bed and very early in the morning when I just needed to talk to someone. They are very good at talking you down.
This is also a great place late at night or early in the morning as well as all through the day. I come in here several times a day and it helps me stay sane, but the most important thing about this group is the wealth of information and wisdom you will find here. I just started therapy (first time ever for that for me) and she was amazed at how much I knew about the disease. I learned most of it here or through links I found here.
About 15 minutes after I posted for the first time, my hubby came home from golf.....we sat on the patio and chatted like many other nights. At a point he hesitated, then told me he needed to talk (which is very uncharacteristic). He said that he didn't want to hurt my feelings but he thought of me as the "opposition" and was hesitant to talk to me as he didn't want to start a fight. I assured him that I knew I was "the enemy" and assumed the position as the bad guy and he could go ahead and talk with no hard feelings. He finally admitted that he had been feeling confused and this was the worst night. He hoped the guys he played golf with didn't notice but "he was doing things so differently than other times" which he didn't elaborate on. Since he has the testing next week and seeing the neurologist on the 25 he didn't want to say anything because if the tests came back negative he felt that his feelings of confusion were just because I had "willed them". He said he knows something is wrong...like his brain is shorting out or something. I was proud of him for admitting and talking to me altho tomorrow he may not remember our conversation. I have a feeling I will be posting often. Is this the right discussion area or do I need to be somewhere else? Starling...thanks for your post. I know I need to get ahold of a support group of some type....I'm sure the Alzheimers Assn can point me in the right direction. It's good to know also that they have a hotline.
I have so much stress about this that I am trying to fight off my first ashma attack. He was just officially diagnoses with early AD and tell me that he is going to fight this and win. I know how important that a positive attitude is but that is not going to work with AD not at 80 years old. I don't want to be into the position of using an illness every time that He is having a problem. He will have a lot of problems before this journey is done. I feel so empty and guilty and angry and hurt all at once. I want to run away from all this . That is how I feel. That is not what I am going to do.
Sheila,pruedave Frand and starling have have given good advice. Come here often and at any time day or night. Read everything beacause even if the same things haven't happened to you and your loved one.... they may soon. You can learn much from the experiences of others. And most important of all is to continue to try to reach out. This is not something to try to handle without much help. This is a place you can put into words any thought, and you will get understanding without judgement.
Sheila, your experience is very common. For many of us pre-diagnosis was a time of misunderstanding, and much denial. I think its wonderful that your husband was able to share his feelings with you...
And prudave, wanting to run away is natural but just as you said you won't. Come here and let us help you deal with things as they are..
pruedave, My husband will be 80 in September he knows he has Alz but he believes not everyone will go through all these things and he has convinced himself he will one of the ones who will just sail through it as he is now. I just let him talk because from everything I've read when he does get worse chances are he won't even know it. I think one of the reason he doesn't want to think about the bad things is losing control of bodily functions. He was called Mr. Clean when he was in the military sometimes he showers twice a day and that is without doing anything to work up a sweat.lol
Dementia is the fatal disease that no one knows about. I know that is hard news to take. No one gets better from this disease, and the only people who die before they get a lot worse are the ones with other fatal diseases that get them first.
If our LOs want to believe they can "beat this disease" that is OK, but it is very important that we caregivers accept the reality early on. The medications can slow down the progress, but at some point you take them off the medications and allow the disease to progress. From all reports they will spiral down fast at that point to where they would have been without the meds. For some patients they need to be taken off the meds early for other reasons. And for some dementias the meds are an absolute no-no. They just make things worse right off.
If at all possible it is important to know which kind of dementia you are dealing with. They are all the same, but they are also all different.
That is why we are going thru so many tests....to find out which dementia he has. I have read ALOT of information on many different types of dementia. I realize they are all fatal. Some progress quicker than others. I think knowing the type and kind of knowing what one might expect is important. Thanks to all for the advice. I got a nice big warm hug from DH when I got up this morning. That is a great way to start the day.
A huge welcome to the new members as well. the road you are on is bumpy and long and with frigtening turns along the way, this group is diversified, more knowledgable than most neurologist or AD specialists in my opinion:) and eager to help with rants/questions along the way. some of us are old veterans at this caregiving to AD and some are brand new, but together we have been able to compile so many common threads associated with the disease and how it affects both person and caregiver. its true- very hard to stomach alot of the info of what lies ahead but sometimes it may be useful to help deal with the symptoms much easier, knowing what is coming and how to recognise the characteristics as they affect your spouse. glad you found understanding and comfort, divvi
One thing Joan didn't mention in her post here is a fun thread, "Where Are You From?" Of course, everyone here is sensitive to the need for security, but if you'd be comfortable letting us know which area you live in, we've been having a great time finding out how widely spread out this "family" is.