For the last two years I have been staying up all night and sleeping? during the day. I feel like a vampire. I don't get it...during the day he doesn't do anything but sit in front of the tv with his earphones on but at night...WATCH OUT anything could happen. A few days ago he told me that he has been having chest pains and lung spasms and he is having more periods of time when he quits breathing. I am such a light sleeper that I hear that, anyway, he also told me that he has been peeing in a tea jug because he can't get to the bathroom at night sometimes. I go days without talking to anyone but I am going to be getting a puppy in 10 days so hopefully that will help with the loneliness anyway. I know it will be more work but the companionship might make up for it.
Fiona68, I hope so too! I think that is going to help me a lot, of course, sometimes all puppies want to do is play and not sit still and give love and attention. I might have to wait until she grows out of the puppy stage.
Charlotte, I cant' get the dr.(VA) to tell me anything. He just does the blood workup and talks about his test readings. We only see him 1 time a year and the only time I would be able to see him again is if there is any emergency. I told his other dr., the one that did the MRI, I can't think of what he is called and he just told me that he has his days and nights mixed up no big deal! They are all treating him like he is 75 years old, almost dead, so just leave him a lone and let him be. I would love to get him to another dr. but we can't afford it. I don't think I am going to get any help with him until he ends up going to the emergency room or something and so far that hasn't happened. I am just existing to care for my husband, and for that matter I don't really have a husband, it is just a person who is still breathing, he barely even knows I am here.
Deb: I took my DW to her primary care dr only for the last two years. The ones you are going to now have told you that there isn't anything they can do and they are right. However, our dr prescribed medicine that I gave her in the evening to make her sleep. Since she didn't take any during the day, she was more likely to stay awake. It is to late to worry about addiction. Just do it.
Someone on this site has said 'sanity thru chemicals'. In my case, it was my sanity. Just do it. You can't keep this up.
deb so sorry to hear you aren't getting any rest. its not acceptable that hes got it all reversed and you get no rest. his Dr -Va or not, should be helping you cope with his symptoms. you could opt to change drs even if its another va dr. all drs are not alike. many of us have to change to get the needs met. Ativan or something to get him calmed down enough to rest at night shouldn't be such a problem to convince a dr to give. there are many sleep aide options. I agree at this point, addiction is secondary. have you tried melatonin its otc. if it were me, I would find a way to give something to him in his meal so you can get some rest. they also need their sleep. if they don't sleep at night it makes for a very weary tiresome day. mine has also had mixed up hrs. but I give Ativan when needed and had no issues with having an rx from dr. I even threated to give one to him one to me when its bad:)) you are at a stalemate like you say til something more significant happens to him so in the meantime take care of you and get him something to sleep. divvi
I think so many drs do not know what to do with EOAD. At our last visit with DH neurologist in Dec he said it was time for him to go to daycare. We ended up with Hospice in Feb. I felt the neurologist was sort of clueless with what was going on. He was treating this like a slow moving illness and did not see the pace that this was moving. Our PCP was the only one who seemed to get it. I think many doctors just don't know what to do when the person is not like a textbook case.
deb, my hb reversed his days/nights and it was stressful, tiring and awful. MarilyninMD suggested that I give him 3-4 cups of caffeinated coffee in the mornings to keep him awake during the day. I also tried Trazodone at night to get him to sleep when the klonopin was no longer working. We went through a variety of meds - Lunesta, Trazodone, Ativan, Klonopin, melatonin all of which didn't work. Now he's on 10 mgs of Melatonin an hour before bedtime and at bedtime .5mgs of klonopin, 200mgs of Seroquel and 400 mgs of Neurontin. This combination seems to be working-mostly.
You absolutely need a dr to help you with this - how can they expect you to care for him when you're not getting any sleep?
See if you can change his VA dr, if not, call the one he has and say it's an emergency, because it is!
I agree with Dean Haywood - I see nothing wrong in getting help (ie. DRUGS!) for him to be able to sleep through the night. I also believe that at this stage of the game, addiction is not a concern. I stopped hubs going to the VA & he is cared for only by our PCP - the VA & our doctor don't with one another on this, the VA would change meds our doctor had given him (for cholesterol). We're fortunate that our doctor has actually gotten to KNOW us, instead of us being just another chart. We surely can't afford to be taking him to every doctor/specialist. To my way of thinking, they can't do anymore than our PCP (just my opinion). If you aren't getting sleep, it makes everything so much more difficult to deal with - difficult enough WITH sleep!
I hope that you resolved your insomnia issues. The lack of sleep lowers my tolerance levels when caring for my husband. My former doctor would not prescribe any relaxants or sleep aids because he believed they were addictive. I changed doctors. I now have a low dosage of Xanax which I use only occasionally, but it's there for when I need it.
Life is to be embraced. As a caretaker of a spouse with alzheimers it's a daily struggle. We have our highs and lows...peaks and valleys....many lows and many valleys, but press on!
Thanks for all the advice, the meletonin is good because it is an otc. I tried sleeping pills for awhile but they didn't do anything. I take tranquilizers and they help me pretty good for about 4 hours but that is about it and then on the weekend I stay up so that I can be able to go to church and then when I get home I sleep for about 4 hours. Believe it or not there are good things about it. I can clean the house with him in his room, I can think without being interupted. I guess I am just trying to get use to an impossible situation.
Since ancient times a ship's watch was four hours. I've read that's the minimum we need. If I went too long without that, I simply collapsed somewhere and then nothing Dianne did woke me up until hours later. Sleep is an odd thing. When I need to sleep the last thing I need to think about is that I need to sleep because if I do - I won't.
I think it's like not scratching an itch or a bite. The more you think about it the itchier it gets. Or in juggling where the saying is "if you're juggling and you're thinking - you're not juggling anymore".
Wish I had some advice to add. I hope the puppy is easy to train and becomes good company.
What type of doctor (other than his primary care doctor) does he see at the VA? My husband has his pcp plus a geriatric psychiatrist. The psychiatrist is the doctor who handles his meds for his FTD behaviors. She is wonderful and I couldn't do this without her help. Try and get a mental health referral if he doesn't already have a mental health doctor.
deb, I never even thought of that!!!! If I heard you right the geriatric psychiatrist is in the VA too? That is a wonderful idea. Wolf, that is true, I sleep better even if it is only a few hours if I just do it and not think about it. I don't know...I just can't see myself living like this for very much longer and there is just no way of being able to tell how long and it is upsetting. It is like water torture. Drip drip drip... :)
yes, his geriatric psychiatrist is at the VA. We got a referral from his primary care to the Mental Health Clinic and they did an assessment of what my husband needed (I was present) and they assigned him to a doctor. She has been a godsend.
deb, that is great! I am so glad that she is there for you. Did your H fight having to go? I can barely get my H to go see the primary care dr. let alone someone else. He had a really bad experience with the neurologist. It was 3 1/2 hours away and we tried to get him to take a wheel chair and wouldn't do it but he could barely walk and almost fell a couple of times and that was 2 years ago, I have no idea how I would get him there now. I don't even have a car so getting out of town was a feat. I had a friend who rented a van and spent over 8 hours taking us around and waiting for us to finish. Thank goodness we were able to reinburse their gas money.
Depending on what VA area you are in, there may not be a geriatric physician. But, I would certainly push for a new neurologist if they don't have one or psych dr at the very least. If you go to the VA website and find the clinic you go to, it will list doctors available. That will give you an idea of what is availble. If you can't get satisfaction, see if you can meet with the social worker. If not here, find your nearest VFW and they will have a person(s) that will fight for you.