"You talk too much, I think you are talking to me but you are talking to the cats." (One dog and two cats, I guess the dog does not rate.)
This is after I have been to the supermarket. It may take many 1/2 hour but I stretch it out as much as possible just to be out of here. Then I unpacked the groceries, then made a supper of a cheese and avocado souffle with garlic toast.
Suse Orman is on, and that is not really good for either of us. Brings up all the **** that is behind and beyond.
About an hour later I bring him his meds.
"You are so quiet...." " "Why don't you talk to me?"
BECAUSE WHATEVER I SAY YOU WILL FIND FAULT WITH, OKAY?
Of course I don't say that because I have no voice.
And the pacing, my *** I can tell when it is 3:30 pm. No clock is required. Up from the bed, into the kitchen, eat crackers, go back to the bedroom, lie down, go into the bathroom for 2 minures, lie in bed, get up, go to the kitchen, search the cabinets, eat more crackers, go into the bathroom, exit after 2 minutes, lie down, get up, start it all over again...back and forth for at least 1 and 1/2 hour until news shows that he can debate start.
Every day, no matter how many meds. The N says he should be sleeping, but he is not, he is relentlessly pacing during this time and I just wish he would sleep, or at least quietly rest.
abby--sounds like my Dh early last year. Welcome to Sundowning. Up and down like a yo=yo. Mine would fret because he wanted to go to bed and couldn't. It took a little tweaking to add a single dose of Seroquel at the righttime to break the cycle. My Dh's would last a couple hours, more or less. This has nothing to do with you. Get with his Dr. for some help. I think of it as a brain chemical overlaod that needs to be reduced.
May I also suggest you work at separating yourself from these events. Most of what's happening to our LOs are the result of the disease progression and have little to do with us or our actions.
That's not uncommon. I've read about it here many times.
When the male has been in the role of 'man of the house', or the man is a strong willed type, or the disease and/or meds create changes in personality. The last two apply to women too.
I believe that if I had AD I would be fighting mightily for some form of control with a mind that is increasingly betraying me. I read the Hikergirl thread as well and I'm grateful it isn't my wife fighting these battles if I had the disease. I hate control of others but I absolutely demand it of myself and I would be rattling and smashing at this closing cage until my hands were bloody and I would not stop.
My mind which is increasingly deterioriating would be raging trying to find the faults which would be increasingly obvious and increasing in number and seriousness while the very equipment I fight that with is itself coming apart in all it's coherence which normal people absolutely take for granted.
While I'm on the roof in the rainstorm trying to fix the leak, the tools and the purpose and the idea of a roof or connection to the rain are all coming apart in slow motion. It isn't only us that are so terribly tired of this disease. It is them too.
My wife can now only shuffle. She needs help to eat, dress, wash. Yet she can say people's names at times and occasionally apologizes for her inabilities and thanks me. She is visibly relieved when I let her know it's alright. She's in there in that mess of damaged mind.
I cannot imagine the horror of going through all of that from the inside.
The first periods are the hardest I believe because that is where most of the intense suffering occurs. With each loss of telephone, writing, driving, normal/almost normal conversation to occassional conversations, to the absence of virtually any - it is the earier periods where those hit hard on fresh psyches that need time to numb and entrench to endure. I have endured all of that and am preparing for the loss of any motor skills of any kind which is no more than a year or two away.
There is only one course I believe. The sooner you and everyone in the earlier stages becomes clear inside on what the stages of this disease will change in your life as it progresses and what is required of you to survive - the better you will be prepared to cope.
Only you are going to survive this disease as he increasingly moves to not knowing what fault is or who's it is. This period of finding fault is not real and will not last. I have huge sympathy for you having to go through this; but, the only course is to try and tune it out and get your breaks where you can like stretching out the time at the supermarket and any other way you can think of.
My comments would be awful if they were in any way judgemental. They are not. You are inexperienced compared to some of us but you are on the same battlefield and those bullets are real. Tough love to help you harden to what needs to be done to survive is the only truly helpful thing to offer in my mind.
Tune him out. By that I mean try and take in that he is damaged and is taking on increasing damage and while his manner is hurtful, and it is, you must decide what to do about it as you will end up deciding all things concerning the two of you as time progresses.
Right now while I don't pretend to know all the details, he has the upper hand in taking this tone but the truth is he's coming apart and soon enough you will not have no voice - you will be running the place.
I believe considering these ideas is the proper course because you may not be able to assert control now or take a dominant position; but, it is coming and you can't stop that. All you can do is start hardening yourself to what is necessary knowing that as time progresses you will increasingly be in control of everything and the only thing to do is learn what you can along the way while surviving.
We are the ones who have to build a shield and keep saying: it's the disease; it's the disease. And sundowning ain't any more fun than the rest of the "stuff." In other posts I've talked about key-lock deadbolts on outside doors, locking all inside doors including pantry. Bicycle lock on fridge, knobs off the stove. Knick knacks put away. Probably set speed records putting groceries away.
I totally get what you are saying Wolf, however when my DH was going thru that stage, no matter how many times I told myself it's the AD, no matter how many times I prayed help me dear God, I still struggled. It was not until my DH entered the next phase, "no longer remembering that he forgot" or sort of unknowingly surrendered, that I began to have a little peace. Another part of my transformation occurred just recently, when I took my DH for our first 3 day respite at an ALF. Something changed in me when seeing him in the facility, as wonderful as the facility was. A new awareness of compassion came from out of the depths, and now I am able to care for him, and be more patient, something I was not able to comprehend prior. As I reflect, this all part of my journey. Transformation.
That has happened to me, too, Rosiek. I visit hb at the care center every day. His behaviors haven't changed; my feelings have. I guess because I don't have to deal with his behaviors, but only walk up and down the halls w/him and sit beside him while he takes an hour or so to eat. Then go home alone. He has one-one care and two people take care of hygiene, etc.
I felt a bit better after reading your post Wolf. Since Gord's death, I am constantly analyzing everything I did and didn't do and coming up short. When Gord would start the pacing at 2 or 3PM, I would frequently come to the computer and play solitaire just to keep out of his way. Since he passed away, I am asking myself if I should have tried to redirect him or get him into some acitivity. It is amazing how hard it is to argue with hindsight. Looking back, nothing I did was right.
On a slightly different topic, I ask those of you who are nurses. Gord's last full day of life found him very still. The myoclonic jerks had stopped and I counted his breathing. He would go as many as 25 breaths and then skip a breath. Then it might be 3 and a skip. His eyes were open and I could see his beautiful brown eyes. I didn't notice that he wasn't blinking until my son asked how long that had been going on. Talk about stupid. Anyway, there is a question in here. Is not blinking a sign of the body shutting down?
Your reply above just might be THE best explanation I've ever read in regards to how a person must 'change', and I fully believe they must, to be a care giver to one suffering with as a horrendous disease as dementia. It might very well have been a form of 'tough love', but the truth is always what it is. I, like many, have had to learn many of the coping skills you've described the proverbial hard way. I hope Abby can glean some knowledge, and through that knowledge a little wisdom and relief, for going forward on this journey that she, or no one else, would ever want to take. The beginning IS hard. Maybe the hardest part. I've found it to be particularly bad I think since My DW is 'only' 53 and I'm only 57. Nope, life wasn't supposed to be this way. She has moved well past the sundowning 'era' and is now easing into the 'scrambled egg' speech stage. I can see day to day her slowly moving to the stumbling and lord knows whatever next stage. But, the only constant is she is always moving away from me. It is obvious to me, because I've known her so well for so long, that she's not doing that on purpose. I too wonder sometimes how she feels about herself being involuntarily dragged away from the 'real world'. Does she really even know? Does she try to fight it? Then, I think I don't want to know. It's hard enough to survive myself watching and dealing with it happening.
Abby,
If you're like me, all these learning curves you're experiencing right now WILL get easier for you to navigate. Maybe not as quickly as you like, but from reading your post I think you're a fighter. That attribute is essential in order to be a survivor.
I wrote a song about dementia that was inspired by the plight that DW and myself have found ourselves in. I called it "She Died In Her Mind". I won't write the whole thing down here, but the first two lines of the refrain say basicly how I've come look at things, and adapted to them.
"Now, every day brings something new, but every day's the same..."
abby--I agree with Carosi, sounds like sundowning. Unless he is a danger during this period to himself or to you, try to ignore it. From my experience, you don't want to medicate him to sleep during the late afternoon/early evening, because it may interfere with his sleep at night. Once my DH was on a lot of "calming" meds, we gave him caffinated coffee at breakfast and lunch so he wouldn't doze during the day and would sleep at night.
On the conversation issue, it sounds like you're in the stage where you should limit your conversations to strictly pleasantries. I learned the hard way that I couldn't complain or cry on Steve's shoulder at all during the early stage, it only upset him and things escalated from there. Ironic, when our lives were in disarray and I needed him the most, I had to hide my stress from him. It was difficult, but I found that I needed to always speak in positive terms, no matter what was happening. Wolf did a terrific job in his post above, describing what it must feel like to someone with early AD. I wish someone had sat me down and said those words to me 5 or 6 years ago, it would have saved my husband and myself considerable heartache.
It is a long, hard learning process. I fought it every step of the way, but finally had to accept it. Right now, you are falling into the trap all of us fall into in the beginning. You are responding and reacting to your husband, and expecting him to respond and react to you - AS HE WAS BEFORE ALZHEIMER'S DISEASE. If you are going to get through this nightmare, you are going to have to learn, as we all did, that although they may LOOK like the person you married, they are NOT. The disease has changed their brain. You cannot expect them to act, talk, or reason like they did before AD. And you cannot expect that you will get anywhere with them by acting, talking, and responding to them as they were before AD. You have to learn that their reasoning button is broken, so don't argue with them. You will never win. All of this has been written in my blogs - I will try to find the ones most relevant for you and post the links here.
I would highly recommend that you log onto the home page - www.thealzheimerspouse.com - look on the left side of the website where all the resources are, and scroll down to the woman in the life vest - it says "need help" - Click on that box and read "Understanding the Dementia Experience" by Jennifer Ghent-Fuller. It is the best explanation of how dementia affects both the patient and caregiver. It is well worth reading. Also, at the top of that left side, there is a box labeled - New to the website, newly diagnosed - There is a lot of good information in there to help you understand what you are facing and how to cope with it.
I am constantly being reminded why I am so thankful for this site...reading all of the comments on this particular topic have reinforced this. The transformation we go through as the spouses of our loved ones is a slow and difficult one, and as we go through each change we come to adapt and cope a little better, and I think we gain a little more compassion and love. Abby, thank you for beginning this topic....you will survive this phase of the horrific journey we are all travelling...it is definitely not an easy trip, but please continue to post and vent...whatever it takes to make things a little less trying. One of the things that have helped me is to imagine what it is like "from the inside" for my DH...I cannot imagine
the turmoil and frustration they experience, especially with the early changes they experience...but even now George will exhibit such confusion and anger in his facial expression. I can see and feel his devastation....it is awful!
The hurtful part to me is that Abby doesn't want to hear any of this. As so many have said she doesn't WANT control. She wants to earn his respect and his love and is truly hurt that he is being an @sshole (pardon me). I wish I could help but all I can do is try and toughen her.
I love women. I think women are heaven on earth. For so long I would come into the well lit bathroom and see the lilacs she grew near the window when they bloomed. Those were her mother's who was born in 1909 and now only two are left and half the plants in the forest that was our home have died. I want to save them and nurture the cats the way she always did - who are clearly looking for what they had and has gone missing; but, I am trying to survive the destruction of everything I cared about and do what I can. It's not the same.
The male side reading this calculates the dates (mom was 42 when she gave birth to the accident I married born in 1951). The female side understands exactly what I really meant.
Think of old Don, Frank, Bob, and all of us in the kitchen with an apron on reading how you make a white sauce. It cuts both ways.
now I am crying, again. thank you for being so understanding.
Thank you so much for telling us about the lilacs. Plants are my true best friends.
I accept dh sundowning, his never talking, and that, he must be SO lonely.
Abby it is all the same here. Thank God I came here to even discover what sundowning was. Jang, I am going to try to redirect him next time, and see what happens, good suggestion.
I cry as I sit here and know that I have done my best, that MOST days I am pretty darn good, and that I take amazing care of him.
And I cry, for a lifetime of my own insecurities, for now, for letting anything even $@@%% getting to me. Why can I not just let it go, that people are often mean, and selfish, and that won't change. (This is almost harder for me in this horrid assignment Abby, the reaction of others)
On the "bright side", I have gotten back on the getting my eating back in order and catching myself before those unhealthy Christmas pounds escalate. I am proud, of doing that, as many of you know, food can really be an escape, and a curse.
Abby...Since most of us here with various experiences know the one thing that never works is trying to reason with your spouse. I know about this because it was difficult in the beginning to accept that fact...like...why does he do this. When he would come into house from maybe being in the garage he would say..."We need to talk"...I knew what was about to happen a 2 to 3 hour discussion/argument. Believe it or not...this went on for several years even before he was dx with alz. and continue for a couple of years after dx. I look back and think I must have been a slow learner. When I finally realized this "discussion" he wanted to have went no where for either of us, I would response to his "We need to talk" by just saying, well I have to go the the bathroom, I have to run to the store, I have to do this or that or I would think of any excuse not to respond to "discussions".
Now he know longer does that. Now, I have found out that when he wants to talk, if I change the subject to something in the past...like something that happened to us on a previous vacation, something we purchased years ago that he liked, how he use to like doing this or that. He loves that type of talk...because he still can remember the past to some degree.
My above post printed before I was finished with my response to Abby: Some that are new, including abby, maybe don't know this, but I recently read someplace that one of the comforting things you can do for you Alz. Spouse is talk about the past..even if you tell fiblets about the past..because, most of them lose their memory backwards...like their memory right now might be for less then 5 minutes and then it keeps increasing for a longer and clearer memory the further back in time it is. You might want to talk about happier times in the past with your dh...he might like that.
Oh Abby, what everyone else said here is true! You have to just remember that (as Joan has said) his reasoning button is broken. He looks like the man you married, but he isn’t. You have to learn that you can’t respond to him like you used to because he doesn’t understand. That being said, I STILL have trouble remembering that DH’s reasoning button is broken, especially when he “seems so normal” at times. We are beyond the sundowning (went though it) & the aggression (he is on Seroquel to help that). But I have to catch myself when I start to have a normal conversation with him because most of the time he doesn’t know what I am trying to talk to him about & he will constantly say, “WHAT?” & I can tell by the look on his face that he has no idea what I mean. My brain knows he has AZ, but my heart just doesn’t want to accept it.
Wolf, your words are wise and very few here can express these things as well as you and Phranque. I know what you mean about acceptance of this disease and what it does. Just the other day at Bible study we were talking about the Annunciation, where the angel came to Mary and told her she was to have a son..how she wondered? but the Angel as much as told her God would take care of that part and she accepted the will of God. Then later Joseph, who could have disowned her was visited by an angel and was told not to worry, to take Mary and all would be well..not fully understanding he too accepted the will of God. It struck me how here in ancient times these two biblical people just accepted something they could not fully understand and how in my situation I am being asked to accept something I really don't fully understand either.
There are days when I get it, I guess those days are the ones where things are pretty much status quo. But on New Year's Day, DH was reading about Lady GAGA and asked " what is a Diva?" This from a man who knew all sorts of 5 dollar words I had never heard of and could write like nobody's business. Later in the morning he held up the maple syrup and asked what that was and where did it go? And last Monday we went to a matinee and saw War Horse which he enjoyed. It got out at 6 PM and when he asked what time it was and I told him, he asked if it was morning or night? And today watching EWTN Mass where the Pope was baptizing the new borns in the Sistine Chapel he asked who painted the ceilings and walls.This coming from a man who knew all the art masters of the past was amazed that it was Michaelangelo.. It is times like this, when what was once obvious to him is now a surprising mystery that I get the kick in the gut and have to make sure I don't answer with that tone that says you know who this or that is...fact is now he doesn't.
It is hard and all of us gals who had strong hubbies and we want to be cared for again but it is not going to happen and we have to get our heads around this and it is not easy. Just as for the guys with the with the aprons in the kitchen trying to make white sauce who would like those roles reversed again too.
WE lie awake wondering what our next step should be when the next shoe drops..how do we know when we need to consider placement, what about in home help, how are we going to manage the almighty dollars and so much more.
None of us here want to think about this stuff much less hear the sage advice of those who have travelled farther down this horrible path than we have. But if we don't listen and consider the advice given by such experienced people such as Phranque, Jane, and so many many more , we do so at OUR own peril which in turn could put our LOs in even more peril than they already are and have some knowledge some how that they have something wrong.
Abby has raised some serious questions and is seeking answers and reassurance that she is not alone. By now she should know she is not alone and not ignored when her posts are not answered each and every time. It is up to her to take into account those suggestions that best fit her situation. We all wish her good luck with the decisions she must make..her DH can't do that anymore and his condition makes things even more difficult. Her situation is harder than some so someone in her position surely needs more support. And who knows, those of us blessed with the docile personality may well find in the blink of an eye that even that changes.
So Dear Abby, stick with us. Share your worries and concerns, share what you have tried and what works and what doesn't. It is the only way we learn from one another and it is the only way we will survive this ordeal.
I have a notebook where I wrote all the things I wanted to say to all of you. It is under my comforter, currently under the custody of one of the cats, so I can't disturb that.
Judith, I often wonder if it is better to mention the past, or better to just let it be.
The Christmas season is hard for me. December is my birthday and sets my "delicate" mother on edge. Christmas Eve was always a special time for H and for me. We had a long time ritual when at home that has not been able to be fulfilled for the last couple of years.
Kind of a Jungian, I have thoughts of what all of this has meant for H. I know he got a lot from his previous role in life.
For example, for appts with docs, he always instists on the suit and tie. He has not worked for more than a year but wore a suit every day of his working life. A behavioral thing? He almost always went to doc appointments during the workday; always, of course, wearing a suit. He has not worked for more than a year, but he still wants to wear a suit for those appointments. I think it is so that he can think of those as meetings, not appointments.
Abby, you mentioned the idea of talking about the past. There have also been suggestions about having a photo album. I am finding now that my DH remembers people in pictures but ask him about a trip we took in 2008 or 2002 he remembers none of it. What he seems to relish right now is going through his military scrap book and p photo book and showing off our ceremonial sword.. I am finding now that I feel more let down when I try to have a chat about something we did once upon a time and find out more and more the things he doesn't recall. I almost fear to tread there anymore.
I too, Abby, am a December baby..the 29th. I always loved Christmas time and still do. But this year I found it more stressful to try to get the decorations up...now I am trying to get them down and I have company coming tomorrow and the house is still a mess. It distresses me when my house looks unkempt..
What folks who don't deal with this situation don't understand is how fractured our days become and how hard it can be to get a project finished when we are interrupted to change the DVD or help in the bathroom or clean up a plugged up toilet etc etc etc..It is just so hard to keep up with it all.
Marilyn...you always say exactly what I'm thinking. Must be an early December Sagittarius thing. ; )
Yep to everybody here--The early years ARE the most emotionally trying, imo. It is quite a wrenching transition that can only be accomplished with a combination of will and time, weaning yourself off the relationship as it was to the point that you're a solitary actor, keeping your own counsel* and presenting nothing but the therapeutic façade of your personality to your ill spouse.
*(this is why you need other people + this message board in your life. Nobody can completely keep his/her own counsel.)
"...Nobody can completely keep his/her own counsel.)"
Ain't that the truth. When one fights at that fact they could find theirself in serious trouble, both emotionally and physically. I've found that boards like this in cyber space are in a way life savers. Especially for people such as myself who can't afford the cost of professional therapy. Most find that sooner or later friends and family tire of our story/stories of our problems in regards to dealing with our LO's disease. And who can blame them, they have their own concerns and problems to deal with. But, everybody sometimes needs a "ventilator". Finding it here on the www, for me anyway, sometimes feels rather far off and detached, but every little bit helps and for that I'm grateful.
I would add one bit of advice - don't take it personally. No matter what your husband says. Even if what he says is personal - don't take it personally. Just repeat in your head, "It's not him talking; it's the disease."
Abby...the reason I mentioned the past is because your dh may still have lots of memories from the past and very little memory of what you said 10 mins. ago.
I even make up stuff about the past just so my dh and I can have a conversation or comment about old movies, old paper routes, his high school, college friends...etc. I didn't even know my dh then. So I just ask questions so he feels like he is participating in a conversation where he still remembers what happened.
Isn't it funny that what works for some does not work for others. Gord could never see that I was the person in the pictures of me. The first time he didn't know me, I cleverly whipped out the small family picture that I keep in my purse. He knew everybody but me. When I showed him my driver's license thinking the official document would prove something even to him. Wrong! He looked at it and said anyone could get one of those. That was in 2006. He would take the family portrait and ask if I had met his family. I don't agree that the early years were the worst. A friend whose husband also has Alzheimer's told me that with each new stage you long for the last one which seemed great in comparison. I found that always to be true as each new stage came along.
You know, I am thinking dementia treatment is still somewhat in the Dark Ages in terms of the psychological aspects--vis-a-vis the effect on the patient and family. Ok, so a scientic study determined that the level of stress in dementia caregiving is so great, it causes all kinds of illnesses in caregivers. So where are the interventions???? To me, one standard practice should be therapy sessions for the caregiver from day of dx on. I only know of one member here who was able to see a therapist in conjunction with her husband's neuro visits. When I mentioned the idea to the head of the Memory Clinic where my husband was treated, he made an excuse about lack of insurance reimbursement.
Why should we have to go it alone and educate ourselves? I had absolutely no experience with dementia in friends or family, and although I did a lot of reading and Internet research, it was no help to me in developing what Emily called the "therapeutic facade". I found out through trial and error and a lot of unnecessary suffering. Support groups can perform this function, but many people aren't interested in a live group and effectiveness of individual groups vary. I tell everyone I can about this website, but sorry I didn't find it during the most difficult (early) period.
Emily, back at you about being on the same wavelength!
marilyninMD, I also had absolutely no experience with dementia of any kind in family or friends. Everything I know, I learned here at Joan's place. After about 3 and 1/2 years here, I'm almost an expert. <grin>
Ditto here too...I knew nothing at all...now I am going to open a clinic since I am an expert..(joking). My dh called me "Mom" yesterday...that was a new one...one other time her called me Mrs.....He couldn't remember my first name.
Ditto, ditto here too..I have learnt so much here.. Dh once called me by our DD's name..and asks when is my Mum coming to visit us again, she's been passed 17 years now. I think each new stage has it's own challenges..I do think it's sadder, because you know that's another bit of decline. When dh starts taling about years long gone, I just let him go and I listen, he's happy then, that's all that matters.
This is not just true for Caregivers of Dementia. I started Caregiving DH with Mental Illness. Searched the internet. In 1988-89 searched forin-person support groups. Barely available, and the one I found wasmulti-disability, with no care for the carereceiver. Then when I asked about accessibility of building where they met, because of my own disability, I was informed it might be better for me not to attend, as my condition might inhibit the other participants from participating. The Dr.'s response was that I was"doing fine. Your instincts for dealing with him are great." I DIDN'T FEEL THAT I WAS DOING WELL AT ALL. FLYING B Y THE SEAT OF YOUR PANTS, IS NO WAY TO CAREGIVE. Finally, after his VaD Dx, I picked up a little info from the Drs. and found my first online support group. A little bit of help. I met Starling there and she brought me here. By the time I landed on Joan's doorstep, I knew a fair amount, but I gained the most just from no longer being alone in the trenches. From March 15,1988 through Aug.2006 alone Caregiving Schizo-Affective Disorder and from Aug. 2006 until I joined AS in June 2008, alone with VaD added. Finally, I found a supportive family to help. Don't get me wrong. My family is suppportive and will help whenever I ask, but they don't really "get it"--they'll learn more now that my Mom's been Dxd with VaD. DH's family has never gotten it,;hasn't wanted to, even to being interferring and obstructionistic. They are only now beginning to try a very little bit, and I am on constant guard because of their past behaviors. Our daughter is the best. Growing up she was actually better in some ways with Dh than I was--probably because I was doing so much alone. (Can't lay much on a kid's shoulders). Now she lives in California.But sahe is stiull 100% in tune.
What I see is a big gap, still not being bridged well, between the medical field and the social work/support field. From what I understand, from my sister, when she was Dxd with Breast Cancer, between the Hospital and Dr. she was hooked up to support groups and individuals immediately. Ditto when her husband's blood condition caused Strokes. She's a 5+ years survivor and he's survived 4 Strokes and is doing well. This is what we need to be happening. I can be "the best tool" in DH's Dr.'s tool box to treat him, but think how much better I could have been early on, If I had had more knowledge and back up to pull on.
DH talks quite a lot but none of it makes sense, I understand the words but they aren't put together so you can follow what he is trying to say. Sometimes I can figure out what he is saying but most times I just agreee or make appropriate noises! His sister is in Alz. facility in Ohio and I guessed she had Alz. before she was dx'd. As far as I know she has never seen a neuro but her doctor must have figured it out.
It has been a little over 4 years since DH was dx'd and I never had a clue. I just thought he had turned into a bad tempered old grouch. When his memory started getting bad and they had the ads on TV is when I took him to our family doctor who sent us to a neuro. That's when he had an MRI and was put on Aricept and after going to a different neuro he was also put on Namenda. I still didn't know what I was in for until I found this site and learned from the people here. I have probably learned more than I ever want to know. grin.
I make up stuff too. Like JudithKB said. So often, I will try to prompt H into a feeling of content, so I will "remember" things that might make him feel better about himself. Within the past year, I really wanted him to feel better. So, I made up something that he had aspired to, but never really came to fruitition. His response was so favorable that while I felt guilty for my lie, which is the real word for what I did, I also saw the, whatever you want to call it, the hopeful, happy expression on his face.
Guilt, but to what end? He is never going to be out there in the real world again, and if he can hold it in his mind, even for a few moments, that he did this, that or the other thing, what harm is that?
Now, I am not, I hope, taking advantage of his condition. I am not making up crazy stuff, I am just letting him think that things he hoped to achieve, he did achieve. Things that were within the realm of reality had this disease not taken over his mind.
joang, I think you said this : (I have read and searched so sometimes I am not cognizant of what I read recently and what I read while searching, as as you know, the searches can go back several years). Anyway, I think it was you who said this or something close to it; "the neurologist said now it is your job to make him happy".
Actually, regardless of who posted it, and I think it was a woman, I cried all night about that, thinking whose job is it to make her happy?
>>>>he made an excuse about lack of insurance reimbursement>>>>
Unfortunately, that is what it boils down to - the almighty dollar. Caregivers of all kinds do not get the support from the medical community because the money is not there. IMO
I must add, My DD said if nothing else, through all this heartache, she has seen me step up and out of my comfort zone, take charge of our situation and not let anyone tell us or push anything onto us that's not in our best interest...she said she is proud of me for sticking up for what I think is right for her dad. This, I thank to what I have learnt here, that has given me the strength to do that..
Julia--so what you have done, inadvertently, is provide a wonderful role model for your daughter. Hopefully, she will never encounter the challenges you have, but if she does--your example will serve her well.
I have also seen this in my situation, with friends. Those who are very close and have observed what Steve and I have gone through, the role I have been pushed into by the situation and disease, etc. Some have let me know that it has given them inspiration to deal with problems in their own lives.
I have read your posts here, on this topic, so many times...
I guess it takes me awhile to process things, and "life" or so it is called continues on in the absence of this forum.
"Rattling and smashing at this closing cage".
I know that is H. He worked hard at his career. He also contributed to the community. Some, but not all of it was occupation related. Some of it was issue related; things he cared about; animals, the aging, the environment.
Just today I had to get together his neuropsych evals. It stuck me so hard, HE WAS, HE WAS!
I need to work more on compassion; less on pity, less on "self".
Thank you MarilyninMD...I never thought I had it in me.. tomorrow is another day at the day centre..lets hope this second day is even better than the first, for me too!
The period of time your are a caregiver to your spouse is one of the most terrible times you will experience in your lifetime. But it is not forever. Just a few years. They will eventually pass away. Then you can put your life together again. They can't help what they say or do in Stages 6 and 7 very much at all. As they regress from their real age to their 20s, teens, youngsters, toddlers and babies, it is our job to keep them safe, fed, clean (up to a point - some of you have spice who will no longer shower!), and all we can do is our best.
Their emotions will mirror ours. If you are happy, they will be. If you are frustrated, they will be. If you are angry, they will be. I preferred happy. I didn't argue, because he didn't understand. I tried redirection. I got me a Kindle and iPad for my pleasure while he watched the same movies over and over - and when he was bedridden and had to keep me in his line of vision....I was his safety net, though he didn't know my name or that I was his wife. My toys kept my mind occupied so that I could cope.
I came through it okay....Come here to ask questions, to get reassurance, and also important, to let off steam that you need to get rid of - with those who will understand!!!!! We have to gripe, but only other caregiver spice can truly understand what you are going through!
You are inspriring. I am trying to do what you said you did. One of the things I miss most is discussion and I guess along with that, argument. I mean rational, spirited argument of a point, not sarcasm, meaness and raging.
I realize I will never have that with him again. So, I am trying to, sheesh, who said it here and just within a couple of days; maintain that "therapeutic facade". (That term should be copywrited.)
Already some months ago, he said "don't glare at me". I didn't think I was but I am going to give it to him that my frustration showed on my face. So, I do my best to put on that facade; to smile when I want to scream, to laugh when I find nothing funny, to answer questions that have no basis; all of it.
Either he is the best actor, which I doubt, or he truly has lost the ability to reason and be rational. I am coming to believe, as has been stated here, that to at least some extent he will mirror my mood and my spirit. He seems especially sensitive to tone.
Also as others have advised I try to tune him out emotionally. Yes, I monitor the meds, I cook (actually a release for me), clip his hair, etc. Because, I guess, I am finally coming to accept, or at least deal with the fact that my feelings, thoughts and emotions are nothing to him.
Time helps alot. I even amaze myself sometimes how sweet and calm I am 75% of the time. The other 25% I probably am not too nice. Before this ALZ I didn't take much of anything off my dh. But, now he is so grateful for anything I do and I have found that even when I get mad and then say to him that I am sorry...he smiles and says I didn't notice you were mad. He can't even remember when I am being a real b**ch anymore. Amazing.
abby--"don't glare at me" reminded me--people with dementia become very attuned to body language, facial expression and tone of voice (to the point where they may overreact). As their ability to interpret the spoken word diminishes, those other factors increase in importance. My husband would always say "stop yelling at me" when I wasn't yelling; it was because of this. All the more reason for the therapeutic facade (Emily coined that one, I think).
OMG for years leading up to DH dx he kept saying I was always yelling at him. I feel like such a dummy for not seeing it. I am still learning everyday :(
If I stay happy DH stays happy and life is just a little easier for us both. Also DD stays happier too....
Sorry, sometimes my "halo" slips and I raise my voice at DH. The other day I was helping him and he said you are so much nicer than some of these girls around here. They just yah yah yah. Of course I am those mean girls.
I try, and try and try not to let that halo slip. Mostly because I am afraid of the consequences. I have come to try to think: what is more important, to be myself or to summon all the patience and kindness that I can muster?
Me, to, Abby. I wasn't a patient mother and now at 83 I have a 88 year old toddler. I pray so much for patience that I am ashamed of asking the good Lord again. The halo is going to slip but the important thing is forgiving your self and trying to do better.