I think I'm losing it...Lately I find myself coping with my role as caregiver by shutting out the reality of it all. I look at my husband and the changes in him; and at myself (and the changes in me); and think to myself "This is not really happening--it's just a bad dream. I will wake up and things will be back to the way they were before the AD Monster took over our lives." It is so hard sometimes to accept this, and you would think by now I would have, but everytime my DH declines a little more, I am overwhelmed by the reality and just kind of shut it out and pretend for a while that our lives ARE "normal" again. Maybe this is my attempt at building the wall so I don't crumble...I keep going, and keep on caregiving, and going through the motions, but some days I just don't want to face the facts.
I think 75% of this Journey is acceptance. It is the hardest part for me. None of us plan for this to happen, it just does. Once you get over that then you just deal with it as best as you can. You look for as much help and support that you can get. You are amazed by the reaction of family and friends who drop you. Help comes from those who have been there done that. You find out that the Medical system is clueless they give you symptom medicine and hope things get better for the time. This journey will cause you to question your value system, you find out what you thought was important for most of your life is not, and those things you took for granted are priceless. You learn that the goal of today is to make it thru it with as little strife as possible, the next day will bring it's own issues to deal with. You finally come to learn that you stand a good possibility of being broke when the journey ends.
Bella, I know how you feel. Once we've accepted the diagnosis, the future that's inevitable, and planned the best we can - I don't think there is anything wrong with pretending or shutting out reality to get through any particular day. This disease is just too horrible and too hopeless to face full on each and every day. I think the best we can do is deal with what "is" today, and push the images of our future from our minds.
I've decided that I have to be able to FIGHT this disease on some level. My DH is, of course, having a terrible time coping with his MCI diagnosis (he is 59 years old). I asked him, "What if this were not MCI? What if you had a cancer diagnosis and you knew you only had 2 years to live? What would you do?" He started listing some things he’s always wanted to do – attend a Superbowl, etc. We decided that we would start his “bucket list” and start making plans to actually do the things listed. I know that fighting back will get harder and harder as the disease progresses, but to me, it will be important every step of the way for me to do something that seems proactive – I have to feel like I am doing something – that I haven’t let “it” defeat me. I cannot let the hopelessness devour me. One day that "something" may be as simple as pushing my husband in his wheelchair through a garden. But that will still be something.
Moorsb and mary22033--your analysis and "take" combined is why I maintain that we Caregivers do WIN in the end. We accept and we deal with everything these diseases dish out and persist in providing and sustaining our LOs. And at the end, while they do pass away, they go with dignity and respect. They are not erased--fogotten. AND . . .we survive.
All that's a pretty big deal to accomplish, and we're doing it under daunting conditions, but we are doing it.
The thing that has hurt the most is the loss of family. Our grown kids do not even call to check up on their dad or me. My DH friends have said they would come by, but have not. It is like we no longer are here. It is so sad. I do need to add that my friends have been a blessing, they have held my hand every step of the way. All I need to do is ask and they are ready to do what is needed. Wish our grown children cared as much. Yesterday we went to lunch and I did pretend everything was normal, I think we all do it. I to want to wish this away.
Blue, been there and done that too. It is so sad that friends and family no longer want/can visit him. Alzheimer's is very scary to a lot of people (remember when seeing someone in a wheelchair was the same?). Not only are there a lot of misconceptions out there but people are also trapped in the how to deal with sick person mode and Alzheimer's doesn't really fit it. People don't know how the handle talking to someone with the disease and lets face it, we only learned because we have been exposed to it. I don't expect my efforts to help my husband, but I do make a point of educating people about the disease as often as I can. If enough of us try, maybe people with Alzheimer's can come out of the closet just like those in a wheelchair did.
I appreciate all the comments...and they come at the perfect time. I was awake about 3 AM this morning wondering if I was "not excepting" what is happening. I know, I really know, that my DH has declined and it seems to me it has been pretty quickly. He no longer dresses himself (except for putting on a T shirt), he has trouble finding his way around in the house, he needs help in the bathroom, he can't take a shower by himself, he no longer put toothpaste on his toothbrush...and yet I tend to push that back in my mind. Right now, I have no idea what "stage" he is in. In the wee hours of the morning, I thought I needed to get up and do a search just to see where he is on this journey. I still haven't done it. Instead I came here and what a great choice that was! What would I do if I hadn't found this place? You that have been on this journey longer than I have been my inspiration, my help, my prop, and in a very real way, the friends that we no longer see. Thank you. And thank you Joan, for giving us this place.
Thank you all for your encouraging words. moorsb, you are right--acceptance IS the hardest part for us all. We just want NORMAL for awhile longer...but in our hearts we know the truth. We somehow make ourselves go on, and take care of our LO's for as long as we are able, because as Nikki says the "love is still there". I know this website has been a Godsend for me...the support all of you give is amazing! Thank you!☺
this reminds me of when we have some sort of dramatic event we tend to wipe out the memories of anything that occured prior to the event itself. (amnesia)- like a self preservation of sorts to be able to cope.
from listening to some of those who have finished their journey they start to remember the 'good memories'. maybe its true= and the mind wipes out all the bad stuff and focuses on the positive even after AD. self preserving once again to allow our minds to heal. divvi
Blue, My DH & I have 9 children between us & only 4 that ever call. Most of his children don't bother. 2 of them have completely written him off. We no longer have friends as we left our hometown & my DH really doesn't like people in our house. I don't know how others can cope when the d spouse gets mean. Mine calls me names & cusses at me. He has tantrums & I spend alot of time just staying away from him & trying not to be in the same room. Eveytime we go anywhere in the car, it is alway a fight. He tells me how to drive, where to park, speed up, slow down get in the next lane, watch that car, etc.etc. He never shuts up the entire time we are in the car. He is getting mean & nasty. We have known each other since childhood. Over 50 years. I find his behavior so hard to except. It feels like he hates me. We had such a good marriage. I'm not sure I am going to survive his Alzheimer's . I just can't deal with that kind of hurt. How does one endure this kind of treatment?
brennie-is your husband on an antipsychotic drug like seroquel or resperadol (sp). Could make a big difference. Don't forget about yourself. There is no shame in asking for help for you, too. I've been there and without help you can't make it.
Bluedaze No, I had asked his Dr. to give him something for his agitation but she gave him Namenda & by itself it caused him more aggitation.I cut that pill in half. I should probably take it away altogether. She later gave hinm Aricept to go along with th Namenda. Lately he just gets mean. I am contemplating wrether or not to try taking his car keys away. He hasn't driven in quite some time, but awhile ago, he threatened to leave me at wal-mart. Another day he waited until I was in the shower then took the car to the store & someplace else without my knowledge. He forgot to take his cell phone. I am considering trying to find a support group in my area. I would never leave him because he has alzheimer's, but I am afraid he will eventually get physically abusive. I am also going to have him see another Dr.
brennie, does you husband get lost when he goes out alone? If he does, he should not in all likely hood not be driving. In the same vein, if you have any kind of firearms or knives ( like KBars) get them locked up. Leave nothing to chance. keep you cell phone with you in case of emergency. and If your husband does get physical, call the police for help. He would not do this if he was in his right mind. He is ill but he can be dangerous.
I read this today and thought of you - shutting out reality is not a bad thing :)
Alice laughed. "There's no use trying," she said, "one can't believe impossible things."
"I daresay you haven't had much practice," said the Queen. "When I was your age, I always did it for half-an-hour a day. Why, sometimes I've believed as many as six impossible things before breakfast."
- From Through the Looking Glass, by Lewis Carroll
Mary, I just re-read your post from a couple of days ago where you state your DH is only 59....that is the age my husband was when I KNEW he had AD. Last night I was looking though some of the doctor reports I had early on and in one of the reports it refers to him having MCI...funny, I couldn't even remember any doctor telling me that...maybe I had my ears shut because I always knew it was AD and now the more resent reports from the doctors states "condition consistent with AD". Each person has to handle this in the way that is best for them. I am one that always wants to know the worse up front so I can prepare and I can brace myself for the worse. If what I have planned for doesn't happen then that makes me happy....it is one of the few times I don't mind being wrong.
When my Dh was first told he had AD, I felt so sorry for him and myself because he had just taken early retirement from the government and we had lots of plans. I am glad to report that we have done many of the trips we had planned and he is still very functional even though there is no way he could hold down a job, drive a car, do his computer (and he was a computer expert and taught classes) understand TV, go to the garage and get more then one item I want without me writing it down.. The loss of these skills didn't just happen all at once...the skills just slowly went away. We are still able to travel with me accepting all the responsibility and planning and having to watch him every minute....but, I am willing to do that because he so wants to travel and so do I. Money has been a major problem because he has lost or hidden hundreds of dollars and now can't remember where it is and I have no idea where it is. Now he is not allowed to have much money in his wallet at all. I have taken complete control over every aspect of our lives and it is hard work...at first he didn't like that and he still doesn't like it too much, but I always tell him when he complains...you are trusting me with your medications, your doctor appointments and now if you don't trust me with making the right decisions for us you can just do all the decision making and let us see how that works for a month. He knows he can't do that and he immediately backs down. I wish you and your family well with this road that is difficult to travel and there are many lessons we learn along the way and we often regret some of the decisions, but the more experience you get from making the wrong decisions the stronger you become.
Then there is the guilt. I find myself wishing that the damned disease would just kick into high gear and take her and get it over with... the woman that was the best thing that ever happened to me has been gone for years anyway... and I am stuck in a life that isn't a life watching her go through the very thing she feared the most.
brennie, one does NOT endure such treatment. You call the doctor and tells him that your husband needs medication for agitation and that you are afraid he is going to get physically abusive. If that doctor doesn't feel competent to give medication for agitation, you need a referral to a doctor who WILL give you a prescription for agitation and anxiety.
If you need "magic words" to get the doctor's attention, call the Alzheimer's Association hot line and ask to speak to a social worker. She will listen to your situation and tell you what to tell the doctor.
My husband wasn't on any of those drugs for a long time. When he began to need them he progressed so fast we could not get him stabilized. He got physical and got out of the house at a point when he should not have been going anywhere without me and I had to call the police, send him to the hospital (the following morning) and place him.
Do not do what I did. Don't make my mistakes. Get your husband on anxiety medication now. Then you get to make new and better mistakes than the ones I made. We all make some, but repeating my old mistakes is not a good idea.
Mary22033--Thank you for that quote from "Through the Looking Glass". It is one of my favorites, and guess it is not harmful in any way to dream the impossible, or pretend our lives are not what they really are---at least for awhile--"a half-hour a day". Sounds like a good way to cope and maybe we can then face our realities in a better light!
Thank you for the encouragement. I have moments when I wonder, "How in the world do people cope with this?" And we are only at the beginning of this journey. I can't tell you how in awe I am of the people on this board.
I've always faniced myself a strong individual (like my mother) able to face adversity head on - no whining - etc. I've discovered this situation is different. This is not adversity. This is tragedy. There is nothing I can do to fix it.
But it helps tremedously to come here and know that, as my new theme song says (thanks Andy), "I will survive!"
Mary, One of the things I forgot to tell you was my husband is now 63. I found out early on he became very adapt at telling lies. At first I didn't know they were lies then I realized this was his way of trying to hide from me how forgetful he was becoming. This is the way I found I could determine how forgetful he was. When we would be watching TV either a movie or a news program that I could be sure what was going to be said on done in the program, I would say I had to go to the bathroom and kind of run into the bathroom in a hurry. Then, when I got back to the TV I would ask him to tell me what had happened while I was gone. It was amazing how he could make up a story about the part I missed when I knew he just telling a story and I was certain he probably couldn't remember what happened and/or understand what had happened. Example: He might tell me someone was shot and within less then 15 mins. that person was back on TV. And, he didn't even remember telling me that person was shot or try to cover up the fact that he had given me some "story" he had made up 15 mins. earlier. As the months went on I realized his comprehension of TV was close to nothing yet he still watched it like he had complete understanding of the program. He does this to this day except he often ask me to explain things to him that is happening in a movie, etc. and I do that and he always wants to watch movies with me and it is nice to have the company so I don't do much "testing" now. Another example of the TV "testing" was to ask him the score of some sporting event he was watching....this is kind of funny....he keeps talking to me until the score comes back on the screen so he can tell me the score...It is so obvious what he is doing but I never point it out to him...they need this little bit of what they think is "normal" and what purpose does it prove to point it out to them.
You know my DH had been getting really bad about telling lies with everyday events. It was starting to make me crazy. There were times that I knew right away he was telling a lie. Now once again, I see it may have been because he could not remember what really happened. We have the same thing here with sports scores. Bless their hearts, this has to be so hard on them sometimes.
Fun is looking through the list of how to tell you're overstressed versus burned out and seeing that you easily qualify for either. If you allow yourself to feel everything this roller coaster shoves down your throat you win the stress prize and if you block out your feelings to stay strong you qualify for the burnout. Step right up plenty to go around.
I spent a lot of time researching AD so that I'd understand it better to help me cope and what I've learned is that I have a thorough understanding that I'm getting my teeth kicked in as I'm getting my teeth kicked in.
The only thing I see that gives solid evidence that I'm not just bobbing around in the waves trying to stay afloat is that I used feel the skin on my neck crawl when I thought about my DW dying and being alone and now I can look there and see I'm going to be ok if not how to be happy. Other than that I move around the full range of reactions and feelings on a daily basis more than a politican moves around a topic depending on who's in front of them.
Like many I suspect I can find the acceptance in my mind; but, the reality of the many blows to any normality or any consistency are hard to take. One day my DW is happy, then she is out of it in a new way, then she is fearful, then she doesn't eat, then she sounds like herself, then she falls hard and can't tell me what happened, then she gets up three times in one night to go to the bathroom but brushes her teeth, then she sleeps ten hours, then she doesn't know who I am, then she's grateful and sounds a bit like herself, then she's worried about all the people in the house who aren't there. And so on.
I just got to thinking about the "lies" the LOs tell...or the cover up stories..it is not a lie..it is their reality...they just don't know really how far off the mark they are...it is their version of a fiblet.
Brennie--I think you are right about wanting to change doctors. If you have described your husband's behavior and all that was given was Aricept and Namenda, then your doctor doesn't understand the seriousness of the situation. Those drugs may help your husband function at a higher level, but probably won't improve his mood. It would be better to use a doctor who specializes in the treatment of dementia, and as others have said, get him on some anti-psychotic drugs. It is important to have a doctor who is experienced in their use, and they will probably have to be "tweaked" from time to time.
Mimi and others...there are two terms the professionals use to describe dementia patients own "fiblets". They are "compensating", i.e., more or less consciously trying to cover up their deficiencies; and "confabulating", which is actually making things up that they believe to be true. I've read posts here where caregivers have become very upset with their LO's for lying, I think it's important for us to understand, they aren't doing it deliberately...it comes with the disease.
Brennie, please change doctors. The neurologist who saw my husband knew he was being physically abusive towards me (I told him about each event) but only prescribed Namenda and Celexa. His advice was for us to choose a word like stop when DH was getting agitated which would signal he should calm down. Can you believe that? How was DH supposed to remember what that word meant? He sent me to the local sports store to buy pepper spray to use should DH become abusive. Oh by the way, the Namenda only aggrevated his abusive behavior resulting in me calling the police.
Ahhh Bella, there is nothing wrong with "putting our heads in the sand" from time to time. I did it for years. It was my only way to cope at the time. I still KNEW without a doubt what was happening to Lynn, to us, but it was freeing to let some of that worry go and just enjoy the moment we were in. I couldn't change our tomorrow's, so I tried to make our "today’s" better.
I am already remembering our "good ol' days" I am surprised, but pleasantly so! at how sharp, vivid, the memories are coming back. I can even hear his wonderful laughter, and see the love shinning in those spectacular eyes of his. I am remembering more and more of who he was, who we were, and it is balm to my broken heart and aching soul. Even still deep in the abyss, the love remains, and it gives me the strength I need to face another day. It gives me the courage I need to help Lynn's through his journey.
I think it is fantastic that you are working on your husbands "bucket list" what a wonderful thing to do. I think that will bring you much peace in the later stages ((hugs))
moorsb, it is funny how little, the "big things" seem now isn't it? I have redefined my entire outlook on life, and what a "good" day is. It is amazing to me what we can cope with, what we can and DO adjust to. Warriors, each and every one of you. ((Hugs))
I think denial is underrated. The top of my reality "to do" list today is to research what's available out here in terms of a new neurologist for DH (his old one moved), home health care agencies, and on and on. This kind of stuff turns my stomach into knots so as soon as I've accomplished a reasonable amount I'll be looking into some denial.
LFL--I can't believe it! Your husband's neuro prescribed Namenda and Celexa (an anti-depressant) and referred you to a sports store for PEPPER SPRAY to control agitation and aggression? I think you should change doctors and report him to the medical board.
The title of this thread is FACING REALITY....Someone needs to tell that so called doctor that HE needs to face reality. I cannot imagine he would EVER have suggested PEPPER SPRAY. That burns...and did he promise in his OATH to "FIRST, DO NO HARM". i would NEVER go to a hospital where he practiced. Imagine how they are with people in pain and agitated? Does he give the nurses orders to use PEPPER SPRAY there? I would write that man a letter if you cannot face him and simply question the logic in his recommendation,....and...I PRAY you did not buy pepper spray!! PLEASE!
I've just gotten around to reading this thread. We all have to be thankful that Joan has created a place for all of us to come and share our innermost thoughts, to be among others who know what we are going through even though our individual situations may be somewhat different. We basically form a 'virtual support group' on this site. This is the ONLY site I come to daily, most days just skimming/reading what others have said, sometimes posting my own comments, occasionally starting a new thread. Along with members of my weekly support group, this site always gives me comfort and many helpful hints. Living with and observing our spouses 24/7 provides us with firsthand knowledge that doctors' tests do not always reveal. We don't need a test to tell us what our spouses can or can't do, know or don't know. We LIVE it every single day!
marilyn, no he was NOT kidding. Yes I bought the pepper spray (we were just beginning this journey and I was so uninformed) but put it away and have never used it. We no longer go to that neuorologist because 2 weeks after the "pepper spray" visit, DH became physically abusive to me. When I called the dr he refused to take my calls. I wrote him a letter advising that DH had become so violent I had to call the police, finally heard from him in a note which said in part " I am sure you felt it was necessary to call law enforcement." What a quack.