I fell asleep for a few hours and then woke up. I laid awake listening to the sound of DH sleeping. It is funny, before, his snoring would bug the heck out of me. Now it is like music to my ears. I cried as I thought of what could of been. If only AZ had not taken over his mind, we could of had a very loving and happy marriage. I recalled the major turning point in our marriage, if you don't mind, I need to share. I feel so bad, having been so angry with DH. Now I know it was not his fault.
Four years ago, I found myself in the emergency room. Hooked up to heart monitors and having all kinds of tests done. (My mom had a heart attach at 50 and I was close to that age at the time). DH was at home and I had called him and he still had not shown up at the ER. After being there for almost two hours I called again. He was at home on the computer and said he said he was busy. I laid there and cried, thinking I was truly alone. How could your husband leave you like that. At that point any love for him died. Now almost four years later, I hate myself for that. I do love him and I want him back. I am not ready to let him go. But he is going. I see him sadly slipping away every day. I would lay down my life if it would bring him back.
Blue, it's entirely understandable and human that you would have felt abandoned at a critical time. A similar thing happened to me, and it took me a long time to realize that it had happened to others. I can't quote you from other posts, or even the explanations offered, but the apparent lack of empathy comes from the disease. It may have been Wolf who wrote about the inordinate amount of guilt we can have as caregivers (or maybe it was Carosi 2), guilt that is undeserved and that has to be fought. The burden is heavy enough and praise is due, not guilt. Love for yourself, not hate. Love from me to you for fighting the good fight.
Blue, many of us have similar stories about our spouse's lack of empathy, etc in the early stages when no one knew it was actually dementia creeping in. We had a bad situation and I made up my mind to divorce him, then found out 1 week later that he was dignosed with Early on set dementia. That changed my divorce decision and helped me to understand what had been happening in our marriage for 3 years.
Blue, I understand. I had a same type of thing happen before my husband was diagnosed. At the time I was so hurt and shocked. Don't be so hard on yourself.
blue yes I noticed that before Dado was diagnosed, I could not figure out why he was so distant, and uncaring. I even asked him if he was having an affair!, as he seem so disinterested in me...well..now I know.
I guess we're all in good company, because I noticed my DH becoming distant as well almost 7 years before diagnosis. Back in 2003 I lost my balance retrieving an Avon catalog (of all things!) from the end of my driveway, resulting in breaking my right elbow. DH was still at work at the time so I had my son drive me to the ER. I had hoped that DH would come to the ER went he got home, but he didn't bother until I called him to pick me up. The first few days afterwards I needed assistance in hooking my bra and he was aggravated that I was even asking him, as if I were being unnecessarily helpless. I even started feeling really guilty about losing my balance, since I'm overweight and it probably contributed to the fall.
All those little instances of not caring began to add up and by 2008 I also was ready for divorce. I even talked to DH about it but he was not happy about it at all -- but quite honestly more from the monetary standpoint than the loss of a relationship. But I also began to suspect that there was something more going on that year and by 2010 we had the diagnosis.
It has been very hard to let go of my resentment even though I know it was most probably the disease. I care about my DH more as a friend than a spouse now, since the marital relationship has been gone for so long. I hope to care for him as long as I am able.
One night when Dianne was still comparatively normal, was diagnosed, and I had moved into the guestroom because it wasn't possible to sleep in the same bed, I must have brought up a bit of food and inhaled it blocking my windpipe, because I woke up and couldn't get air. I stood up gasping trying to get a tiny bit of air and came out into the hall where the nightlight was already on for her. I started passing out and landed on my knees just outside the bathroom pitifully trying to get some air making a lot of noise and I saw her out of the corner of my eye turn her light on and sit up. She could see me. She could hear me. And she lay back down again as I passed out.
It hurts and I will never forget. But I don't feel resentment anymore (which I did). It was the clearest moment where I saw how much of her was affected. Dianne would have panicked but she would have jumped out of bed and raced to my side.
In that same way where my wife is now in a nursing home and I don't go that often because frankly I'm used up as a caregiver and I'm having trouble just dealing with the pieces of my life that are left, I don't blame myself too much either.
Bless you all for sharing your stories. I was thinking I was wrong in how I felt and reacted. This is what happens when you have way to much time on your hands. You over think things. I guess most of us had "that moment" when we thought what the hell is wrong with you. Makes you doubt your own sanity.
Just another way this messes with our minds and adds to the overall misery.
Wolf don't beat yourself up. We all have limits. Your DW is in good hands and well taken care of. Take care of yourself. (((Hugs)))
One time years ago I stopped and gave water to two stray dogs. DH was sitting in the passenger seat. After drinking, the two dogs came at me, on the attack. I began backing towards the car behind me. DH just sat there in the car. I finally made it safely back into the driver's side. DH never said a word.
It's amazing how we all share the same or slightly different stories of lack of empathy. The total uncaring and unawareness that they exhibit is unbeliveable. Their self-centeredness can not be comprended by anyone who is not living with a disease spouse.
Mary 75, I too have many wounds that are not yet scars. I really don't know if I can or will move on with all the pain and suffering my spouse has caused me. Yes, it's the disease, but none the less the pain and suffering still exists. I look at the person and they have been occupied by someone else. A person I don't know nor a person I really care to know. Wondering many times why I am in this.....Stockholms disease????
Hang in their gals and guys...I have to admit there were times early on in my dh's condition I wanted to throw in the towel or throw him out...but, the worse his condition got the easy he was to take care of. He was back to his old sweet consideraate self in the last year of his illness and the sicker he got the more considerate he was and the more he cooperated and praised me over and over for the care I was giving him. Yes, there were bad days, but the got further and further apart as he went down hill. Just maybe a ray of hope for you that need something to cling onto.
JudithKB, I have made that comment recently that the days spouse is weak and more dependant on me the nicer he treats me. On "good" days when he feels stronger and can walk better he's so darn nasty. He's nice only when he needs me. He is totally using me. I have no doubts in my mind if he could get in his car he'd be right back driving to the nearest ATM for a cash withdrawl visiting one of his "girls". My scars are deep and I am still wounded physically and wounded emotionally because this "man" pulled a John Edwards. I really don't know if I can hang on much longer. I do have empathy for him, but he repulses me for all the pain he has caused
I had surgery Monday to remove a larger margin around what had turned out to be a melanoma. A friend took me. It happened that my husband had an appointment at about the same time with the therapist we both see. In fact he was with the therapist when he got the call from my friend that I was out of surgery and doing well. I am doing well--I saw the therapist for my regular appointment today. And he told me that my husband talked about himself during the session and showed no particular concern or relief when he got the call. Seeing the same therapist is an odd triangle but the validation I get is worth the pain that the triangle sometimes causes.
Pam I am glad you are doing well after your surgery!!
After reading the stories on lack of apathy, I was struck by JudithKBy*'s statement. I wonder if the lack of caring is more an earlier/middle stage symptom? There were times in the earlier stages that Lynn too was less than compassionate. But just as she said, along came the later stages and his warm heart and compassion returned. He is very concerned about me and is always trying to help others.
I notice too that most of the residents who are able to talk and move about are sympathetic to those around them. An example is a lady I will call H, there was another lady there who was inconsolable, medications did not help. H would sit with her for HOURS, rubbing her arm and talking soothingly to her.
Time and time again I see empathy, sympathy and compassion. Perplexing......
The lack of empathy is a hallmark of FTD, though not limited to it.
Pamsc, does your husband show much insight. I am wondering if he is getting anything from it, though it sounds like, with your arrangement, it is a good source of information about him. In FTD therapy can make the situation worse.
My husband has lots of Parkinson's symptoms, and lack of empathy is also characteristic of Parkinson's. His diagnosis was changed from Lewy Body Dementia to Multiple System Atrophy because the cognitive impairment is progressing very slowly, but it bothers me a lot.
No, he doesn't have much insight and therapy doesn't truely do him any good. But he like going--he gets to talk about himself and he feels validated. Medicare pays part and his retirement Medicare supplement policy pays the rest, so there isn't any harm in it. Now and then I reassure the therapist that it is ok that he isn't getting my husband to have insight, the benefit is that my husband feels he is doing something even though he isn't. And I get validation.
Pamsc, I was told some time ago that to seek therapy for my FTD/alzheimers spouse would be a waste of time. However, because this is such a strange disease perhaps...just perhaps there could be a lucid moment where he could benefit. After all, so much is not known about this disease.
Lack of sleep: Alzheimers and it's other demenias cause of much worry and concern. So many things to do in addition to caretaking that at the end of the day I am very overstimuated and find little to no sleep. I am basically living on 4-5 hours per night. Many of the sleep aids including ambien cause many dangerous side effects of me. I have tried to limit my coffee intake ( 1 cup per morning) only because...by 5 am I am zoobie like and need to start my day. Besides, I really don't like relying on medicine (even over-the-counter drugs) are to worry about as many of these OTCDrugs were once presciption only. It's only for the insurance companys benefit not the consumer. Oh please don't get me started on the pharmaceutical companys and their false advertising! That's a whole new discussion!
Lulliebird, I have found that Ambien (.5mg) has helped me sleep with no side effects whatsoever. I hope you can find something that helps you sleep, which can give you the stamina to handle the daily challenges we face.
I you use Ambien the bottle of Ambien should be kept in your bathroom and NOT next to your bed. The reason is that you might get up in the middle of the night and take another, not remembering that you took an Ambien earlier. This can lead to Ambien toxicity (overdose). It happened to my wife and she ended up in the psych ward. Fortunately a nurse was able to figure out very quickly exactly what happened and told us that putting the Ambien away from the bed helps prevent you from taking extra pills.
I just wanted to let everyone know that I got back my biopsy results from the lymph nodes and extra margin taken around my melanoma and they were negative-no further cancer found. So that scare is over. But it is a lesson in taking care of myself, by myself.
Good news pamsc.. back to the sleep issue, I was put on zoloft recently and it has helped with the sinus region migraines I have had as well as lessen the the anxiety and stress level I deal with day to day. then, later, for some reason, after a hike, I started to get muscle spasams in my right hip area. My doc put me on some Flexaril and in addition to finally helping with the muscle spasam problem, I found I slept well, the first couple days on the med I was a bit on the drowsy side but after a couple days, that side effect vanished save for a bit of dry mouth. But the decent night's sleep was wonderful. Last night I forgot to take flexaril and had a hard time getting to sleep. Flexaril is not supposed to be habit forming as far as I know. I am now sleeping most of the time in the other room. I cannot sleep with the Cpap machine or the snoring when he takes it off.
Pamsc, wonderful news, but sorry you had to go though the C scare.
Ambien: Okay, now don't crack-up, but several years ago my doctor prescribed ambien as a sleep aid for my insomia. Each and every morning I was waking up to crumbs on my pillow. Finally after several incidents of occurance I found a whole couton laying next to my pillow. Yes, I was getting up in the wee-hours and eating coutons in bed!!! Well, that explained the emptied boxes and a few extra pounds of unexplained weight gain. Then one morning my spouse asks me, "what were you doing in the office at 3 in the morning on the computer?" I couldn't remember ever being in the office in the wee-hours let alone on the computer. I paniced....what was I doing on the computer? I doubled checked all my emailing making sure my "sent" emails were apprioate ...I checked the history making sure I wasn't behaving badly--lol- Yes, I was sleep-walking and sleep-eating and operating a compute without my knowledge. This could have been a nightmare as I could have used my credit card on-line! For those of you who live alone please take care using this prescription medicine. It's side effects can be very dangerous. Also, operating a car has been know to happen! I think at this point I will stick with a 1/2 dose of xanax or over the counter the p.m. aspirin.
Ambien amnesia isn't unusual. I wouldn't say you were sleep-walking (and sleep everything else) but you surely don't remember doing those things. There are reports of people doing all sorts of behavior on Ambien, including driving, and not remembering.
Also, were you on the 4 hour or 8 hour pill? The 8 hour pill is wonderful if you have trouble sleeping through the night.
My wife is on Trazadone to help sleep and it lasts longer than the normal sleeping pill, which is usually 4 hours.
Paulc, I don't really the strenght of the ambien as if was a number of years ago. I did some research on the medication on line and read of a man in sleep-walking during the winter months and froze to death. That was enough to frighten me that I was not a good candidate for this medication. I really would like something that could help me sleep as I am so worn out. This disease can really take it's toll on the caregivers. So much to worry about...so much to do...and so little support from family.
lulliebird, holy crap! Glad nothing horrible happened. That's just crazy!
I no longer have the constant worry of keeping Lynn safe so I am able to take medications now to help when the pain keeps me awake. I have a huge fear of addiction to any medication so I don't take a sleeping pills. What my neurologist suggested was good ol Benadryl. He said it was safe and non addictive. It has always made me sleepy so it's a win win for me.
paulc, I have heard melatonin is good for sleeping however, it also has side effects (blood thinning properties). I will do more research on it and run it by my doctor. Thanks for this advice Paul
Nikki, I agree with you on the fear of an additiction to medication. I have been on xanax on in the past and never got hooked, but I don't take them often as I am afraid of the dependency. I really liked your suggeston of Benadryl. I have used it in the past for hives and it makes me sleepy also. Thanks for the suggestion!