Over the past 4 months there has been a massive decline in my DW.
She fainted twice in the space of 1 month. Went to the hospital both times. After a host of tests both times, it was determined there was nothing life-threatening. However, they did stop her blood pressure medications and we were sent to a Cardiologist.
After two tests, (stress test and tilt table test) the Cardiologist determined that there was no sign of Hyper-Tension. No need for blood pressure medications. Take a baby aspirin once a day and come back in 1 year.
At the same time, our neurologist decided to change the dosage of aricept from 10mg to 5 mg. He also suggested an anti-depressent.
She has not fainted since, thank god. However, since February, she has had hallucinations, delusions, she gets on a jag several times during the day, and her confusion is at this point, profound. Plus we now have urinary incontinence. She not only forgets to go, she is forgetting how to go. I'm am trying to help with all of this, but her neurologist has proscribed Seroquel and Paxil.
I am hesitant about using Seroquel and Paxil as I know the risks. I continue to try to deal with this with redirection, not arguing with her, basically living in her new reality as best I can as long as she doesn't do anything that will harm herself or anyone else.
I know that declines can happen that fast. Everyone is different. But I was think, did the change in the dosage of aricept contribute to these declines or is it impossible to tell? It seems to be that the medical treatment for AD is far from precise. So there really may be no way to tell. The fainting spells could have been a indication that more declines were on the way as her neurologist said that people with AD do faint more then the rest of us and it is simply another part of the progression of the disease.
I have heard the EOAD, (my dw was 57 when we got the DX) goes faster? Any thoughts?
I don't know about the Aricept, but I think the Paxil would hurt her (and it would take several weeks to see any effects) but I'd go easy on the Seroquel unless she's unmanageable. My husband has fainted a number of times over the last ten years. They aren't mini-strokes, perhaps they are what have been described as "absence seizures." They've been mentioned before here. Basically, you just wait them out, get them sitting down and stay with them. You don't need to go to the hospital because they give them a bunch of tests that gets them agitated and you upset.
Sounds like you are also into the Land of Depends. Welcome!
No I am not a nurse, just had experience with meds for AZ, etc. and with this site. But as we all know, one year with an AZ patient, and reading this site, will make most of us far more knowledgeable about coping with AZ than any PCP or Neuro, and CERTAINLY more than most hospitals.
I did mean that! Thanks for catching it, Deb. Paxil saved my daughter's life, quite literally, and she's taken it for years. Now we are mellow (both my husband and I) on Zoloft. Better living through chemistry!
Thanks briegull. and thanks for the clarification ;>)
Let me add that the rapidity of her decline is like.., well going down in flames!
Just earlier today she asked me where I was from, where my home is and would I like to sleep in the other bedroom. I know we have to prepare for the new normal, both physically and emotionally, but this is like a machine gun to my soul. The only trouble is, I'm not dying.
This morning my DH said "I think I'll wrap you up and take you with me. A few minutes later he ask me what my name was... Then he ask me if I was married...yes Who to.... You , I said I was hoping you'd say that I'm going to have to get out and go to work and give you some money.... Alrighty then. Bless his heart......
Well, GuitarGuy, my husband has TWO of me. Bicycling home from picking up our mail at his brother's (we have been gone for a week) he said he had to go find "Jeanette" now; she had been all alone for such a long time. I said we had to go home and have supper first, hoping for distraction and I put him to work cleaning the string beans. When he finished he said he had to go. I thought he meant to the bathroom but a few minutes later I looked for him, and he was gone -- on his bike. I went out right after turning off all the burners but he was out of sight so I called his brother, our friends in the village and the police. The police found him right away. He was cycling on the four-lane highway to Rotterdam (there is a bike path but not right beside it). The policemen were very kind, brought him and his bike home in a van. His bike will now have to be chained perpetually. When they had left we sat down and had supper. As soon as he was done eating he said again that he had to go find Jeanette, and maybe he would come back with her later. Meanwhile, however, I had chained his bike (he keeps the key in his pocket) and locked the front door and he has forgotten how to open the door. He was upset but I talked him into sleeping here tonight and we would go look for her tomorrow. He slept for 15 hours (jet lag) and today did not mention my rival again. We had visitors almost all afternoon so that was sufficient distraction, I guess.
Today my DW did not remember that I was her husband. She does not want to go to bed. She told me to leave her alone. She is falling asleep on the sofa sitting up and refuses to let me help her lay down on the sofa. She is being very stubborn. Long night on the chair for me tonight. What else can you do? I tried to be as soothing and comforting as possible. It used to work before, but not tonight. I'm going to go out, scream at the moon and get ready for a wonderful morning.
GuitarGuy - My DH went through a similar rapid decline beginning in March 2009, when his blood pressure and heart rate suddenly dropped. We went back to his cardiologist who ran a nuclear stress test and compared it to the one he had in March 2007 and they found no change whatsoever. They did take him off of Enalapril (the blood pressure medicine). Over the next 10 months, my DH's blood pressure became increasingly erratic and his other symptoms escalated at a precipitous rate. The changes were so very fast that they literally happened on a daily basis. My DH was called home to be with the Lord on January 31, 2010. During the 2 1/2 weeks before he died, my DH went into a coma-like state several times (one was for 14 hours!) and when he wasn't in a coma-like state, his mental status fluctuated greatly. During that time, he had some of his most lucid times in years. He even wheeled himself into the breakfast room so he could watch our daughter feed our grandsons. We were all so excited and confused. The roller coaster ride had become like jumping from a high cliff into a deep well only to somehow come out of the well (sometimes to be in the middle and sometimes to be back on the cliff). We took pictures of him in his wheelchair laughing with our one of our grandsons - that was the last picture we have of him.
I don't know what is happening with your DW, but I want you to know that you are not alone. When all of the changes were happening, no one seemed to see or believe they were happening. I felt like I was watching a train crash in slow motion and I was trying desperately to tell everyone what was happening and no one "got it." For what it is worth, I get it - your pain, your experience, and your reality (which is, by the way, THE reality).
I also want to give you comfort, but I am not sure what would give you comfort. We all know that my experience is not necessarily going to be your experience. I remember all too well the feeling of not knowing if my DH was going to life to the next day or if he was going to wake up and, if so, what state of mind he might be in when he woke up. During the last years of his life, my DH had hallucinations and they did increase significantly during the last year. I kept making every effort to get him to talk about what he saw because the hallucinations frightened him. When he would tell me about what he saw, I tried to respond with comforting words and, because we both believe in God, I reminded him that God is more powerful than anything he might see and encouraged him to call on Jesus when he saw something scary. I believe these talks (as difficult as they were for me and, frankly, for my DH) helped him to cope with the hallucinations better and to be less frightened. It was far better for him to share them with me and take some of the mystery out of the experience (I reminded him that it was part of the disease and that he is not "going crazy"), but it also enabled him not to be or to feel as isolated because he became much more despondent and fretful when he wouldn't talk about what he saw. Even when he couldn't remember what he saw, it helped him to talk about the fact he saw something that scared him.
I hope and pray that I have been able to provide you some measure of comfort. You are all on my heart and in my prayers.
Sharan, Thanks so much what you have said. It is a comfort to me.
Let me say that I too have felt God's presence in an extraordinary way. It was when my wife was praying at the altar at Notre Dame in Paris when we were on our honeymoon. I was "sightseeing" and at one point my wife had gone to pray. As I was looking at her, I was engulfed with a presence of all-encompassing joy and love as I have never felt before or since. My wife has always been my connection to God. She still is and always will be.
For you and your husband I send you my love and prayers.
My wife is a bit better today...just a bit...but that is a whole lot to me now...
A number of very smart people in the AD field insist that the course for those with EOAD is identical to those who are diagnosed at a later age. In fact, one person from an ADRC referred me to the Mayo Clinic website where this is stated as a fact. However, I said to this person that I have been in email contact with too many people whose spouses have EOAD who have experienced fast declines ... as I have with my wife (who turned 64 this past Sunday) ... to allow me to believe this! My wife was diagnosed at 63 but all the symptoms were there 2 years earlier (when she was misdiagnosed with stress/anxiety/depression). Since diagnosis she has had 3 major 'falls off a cliff' and each of those serious declines has come about 4 months apart. She is now moving from early to moderate stage and her short term memory is virtually gone. No one will convince me that those with EOAD do not decline at a faster pace!!
Well, my husband was diagnosed at the age of 49 and died from AD at the age of 62....so, I don't think that is fast. I have friends who fall into both categories....early onset that went fast and then others where it dragged on. I know of other cases of late onset AD where the same can be said. It all goes back to "it is what it is"!
I agree 100%! The diagnosed my DH with Lewy Body Dementia, but we are still waiting for the results of the brain autopsy. However, my DH's first symptoms started in 2001 when he was only 44 years old. Of course, we didn't have any idea that they were symptoms of anything at the time. It is only by looking back to try to see when his memory and decision making abilities were adversely impacted. So ... from the very beginning to the end was a grand total of 9 years, which sounds like a long time until you know that my DH was not diagnosed with "dementia of unknown origin" until June 2008! Also, living life forward, we didn't know he had memory or cognitive thinking problems until 2005-2006 and even then his symptoms were masked by the various medications he was on. We kept thinking he was having problems because of the medicine and some unknown illness that would maybe go away until 2007, when he came off of most of the medications (they had been heart-related medications - his heart was doing much better). Then it was obvious SOMETHING was wrong. And, from that time until January 31, 2010, my DH's "new" symptoms were coming at us so frequently that it was like a constant onslaught of problems. Given the fact that my DH was very healthy (except for the heart blockage that was cleared up in 2005, a hernia in his esophagus, and pain from a pinched nerve in his neck), his decline and ultimate demise was at a much much faster pace than is typical - even for LBD (which only rarely occurs in people as young as my DH). I believe ALL of the dementias progress faster the younger you are when you get them. Blessing or curse? Only God knows.
DH was diagnosed early 2007 at age 63, but had symptoms for at least a couple years prior to that. His decline has been very slow the past couple years. In fact I just posted that he has been driving up until just a couple days ago. I fear now that he is entering a much steeper decline.
My husband went through the fainting for about a year and a half. No one could figure out what was wrong. He would just drop. Not seizures. The neurologist put him on an anti seizure medication and he has been doing well. The last episode of passing out was in Jan, 2010, and the doctors attributed it to his prostate meds being too strong (they lower bp a lot). We cut the dosage in half and he has been fine. Sometimes our doctors don't know the side effects of what they give us or don't remember to tell us. I always ask, but usually get a response of not to worry. My husband had been on the dosage for a long while before anything happened so was really surprise when two ER doctors came up with the same conclusion. When I looked on the internet at the side effects, sure enough, there it was.
Just got the Paxil today. Start tomorrow. Here's hoping....
It is so strange that my wife let me clean her up this morning after a pee pee incident and then let me give her a shower, to all of a sudden as we were coming home from shopping and she is yelling at me to get away from her and don't come in my house.
I slpped to the back of the house, waiting maybe ten minutes and called the home phone. I said, when she finnaly answered the phone, hi honey its me, I got what you wanted at Walgreens, and can you let me in, I forgot my keys. Oh sure, thanks so much, are you going to start planting the flowers now?
I have been having these episodes everyday for a week now. The only casualties today were, the ice cream melted before I could think clearly enogh that I need to bring in the groceries and she swiped at me and tried to grab my keys and broke my key chain. I would not have minded so much, but the key chain was a gift from a friend and was a logo of the Martin Guitar Factory in PA! ( Mecca to me...) Darn!
I forgot to mention that after dinner, I usually play my guitar and sing some songs with my DW. I played a few James Taylor songs because he is one of her favorites and puts her in such a good mood. After playing and singing Fire and Rain, she looked at me and said, you're back!
GuitarGuy, I am so sorry that you are having to endure this; it breaks my heart just reading about it. People have no idea what caregivers go through; it's like running a gauntlet. Just when you think your coping and have things under control - you're hit with another club. What a blessing that you have your music to bring your DW back to you or, as she said, to bring you back to her.
Paxil seems to be working a bit.. even though my DW said I can't live in her house, she wasn't yelling and swiping at me yesterday. And within a few minutes she said, sure you can stay with me
She even let me sleep in bed with her last night.... she took the girls side, and I took the boys side. Keeping my fingers crossed...
So far so good.. no yelling or telling me to leave.. but she keeps asking me when my mother is coming to pick me up.
She did speak to her mother on the phone last night and was telling her that I should leave and that I'm not her husband. But no nastiness, just a lot of concern in her voice.
She seems sluggish and tired to me... she is on 10 mg. We see the doc tomorrow night.
She doesn't know that today is our wedding anniversary.
GuitarGuy, it's hard the first time it happens, after that not as bad, because you learn to expect the forgetting and know that it's not their fault. Still sad, but after the first couple of times you're sad for your spouse, not yourself.
I am not as far along as you so I have no personal experience but I have a thought for you. I read on these boards when the wives write about their husband not knowing them. Many are very sad and anxious and looking for their wife. But in general, they seem pretty accepting of this "other" women who cares for them. Whether this other women is 'their mother" or just someone who helps them, the men seem comfortable with a women being their caregiver.
Now put yourself in your wife's shoes. Women, in general, would find a strange man in their house frightening. Especially one that they do not know and wants to sleep in their bed and help them with personal activities such as toileting and dressing. I think her reaction is very normal and your road very difficult.
I think one of the first things I would do is set up seperate sleeping arrangements for yourself and explain to her that this is her room and this is your room. If you need to be in the same room as her for her safety, maybe seperate beds, my bed and your bed.
I would then try to present yourself as a caring individual who is there to care for her when GG is not around. Tell her your job is to make sure she has food to eat, stays clean and dry and anything she needs you will help her with. Call yourself her helper or her caregiver and whenever GG can not be there, you are helping him make sure she has everything she needs and to make sure she is not lonely when he is gone.
Your road is tough GG and you are doing a great job. I am guessing this stage will pass and she will become easier to care for when she cares less about this strange man in her house.
GG, paxil usually takes several weeks to get fully into the system, so if she's being good at this point, just think what it will be like when it has kicked in altogether.
Ok 2nd week on Paxil and my DW 'seems' better to a certain extent. I gave it to her in the morning but she seemed very sluggish in the afternoon, so I started to give her the Paxil at night and I think that's better for her. It is helping her sleep, and she seems more alert(relatively speaking) during the day. She is still going on about some odd things. She thinks someone is out to get me. Tonight I told her I called them and they confimred that it was a mistake and that seemed to clam her down. She has several of these 'delusions' every day. They are changing on a daily basis. She is no longer yelling at me to get out of the house. The length of these 'trips to wonderland' are no longer than 5 or 10 minutes and I can usually redirect. However, when I can't and she gets a bit too upset, I walk into another room and tell her I need to do something, so call me if you need me.
The most odd thing she said was after coming back from a family cookout on Sunday. It was very hot and she was tired. She did eat and drink but she was very, very quiet. On the ride home show said "So are you going to kill me now?" I really did not know what to say, so I just said I love you would you like to stop and get some ice cream.
This was very upsetting to me, but I tried my darnest not to show it.
This is very hard and I pray every day for guidance and strength.
I also should add that I use music almost every day to distract her, either she and I will sing some songs while I play my guitar or we go into another room and listen to some music, have a little something to eat and drink and play with our cats. Really works!!
I agree about the music - my husband loves me singing to him. Nursery songs. Especially Hush Little Baby, don't you cry.. He gets very still, just like a babe does. And the cats will always quiet him too.
Paxil - when they first came out with the once a day time released pill those I knew on it got found that after a couple cups of coffee or other caffeine drink they were no longer feeling sluggish all day.
GuitarGuy, good distraction move with the ice cream!
Music -- yes. we use a classical music station on our radio alarm and on mornings when I think he needs some extra sleep (like right now), I slip out of the bedroom and let the music play; I find it helps DH sleep in. Seems to be soothing and probably masks other noises that might otherwise wake him. I have been up for two hours this morning, drunk a pot of coffee and have got lots of computer work done that I never feel like tackling in the evening. I haven't tried singing to him. He does like to hear me sing to the baby grandchildren. (I can't sing so am very grateful for uncritical listeners.)
My singing would not snooth any one. My children did not like me to sing to them. The only time I sing is if I am in the car driving and then I sing "Oh, What a Beautiful Morning" as loud as I can. The problem is I can hear the off notes. If God would grant me one talent I would love to be able to sing.
At one point in the disease I would sing the Cradle Song to my husband and he would go right to sleep. Now, I still sing songs to him, he seems to like music still. I have no clue how far out of tune I am and really don't care - if he is happy then I am doing okay.
today somehow they have polka music on our PBS station. Polkalalooza. Much like Lawrence Welk, which they also have!! But my husband watched it happily for the longest!
Well, we ended up at the ER and overnight at the hospital last week due to a sudden drop in BP. Really the worst one yet. They could find nothing unusual. How do we stop the sudden drop in BP when BP is great normally? Meds are not the issue. Does anyone notice feet swell when BP is low or am I looking for straws? I wonder if standing for long periods is a cause, anyone else? We don't use a lot of salt, heard that could also be a reason. I think he gets enough liquids. Seems after every episode my dh gets worse. When does a person become bedridden? Dr. told me to keep him walking as long as possible. My dh doesn't always understand "stand up" and just sits there. If I am patient, he eventually will come around. Yeah, he is incontinet in both areas (very heavy urine and bm several times a day). I buy on line Medline and put these liners into jocks during the day and adjustable Depends at night. Butt Paste is great. There are also products that are good cleansers that you don't need to rinse. I use them for the BM's and it takes all the smell away! Have to buy it on line (Walgreens on line only carries these).
More declines since my husband has stopped walking, he is losing weight, he lost another 2 lbs. from last week. He eats, however, still is losing at least 2 pounds a week. Last week it was 3.
I think one of the worst combinations you can have is a good ear and a bad voice. Speaking from personal experience. I guess at least we know better than to inflict it on others, and won't enter American Idol.