I have heard from Bill's regular doctor and his neurologist just called. We have an appointment the 14th with the psychiatrist.
Bill has been reluctant on taking his meds and his anger has increased in the last six weeks.
Regular doctor was very clear I could stop the cholesterol med. and the aggrenox (helps prevent another stroke). This could shorten his life by maybe six months. But if he gets angry about taking it, it's not worth the fight.
The neurologist just told me to stop both the aricept and the namenda because at this point it probably wasn't doing any good. I questioned him about a rapid decline after stopping them and he said I shouldn't notice any. He told me I could increase the seroquel even more. Also he reminded me that he had connections at the hospital where he could get Bill in for up to ten days for med readjustment. He was there in July and did well after he got home.
As of today He is off his aggrenox, zocor, aricept and namenda. Leaving only seroquel and synthroid. I hesitate increasing the seroquel until we see the psych. the 14th. But if things don't quiet down, I will go ahead and increase those.
The last week he has been waking up anytime from 4am on. I'm tempted to lock him in his room at night so he can't roam around the house. Doors are all locked so he can't get out, but I can't take any chances, so I am also up. I did lay in bed until 7 this morning just listening and as soon as I got up He layed down on the sofa to go to sleep. I was so irritated with him that I kept waking him up. Talk about childish, that was me.

I feel guilty about stopping his meds, but with all three doctors saying the same thing I'll do it.
_________________

Joyce,

I can only repeat what I replied to one of your other posts. YOU need help - you cannot continue to do this alone, or you're going to be the one in the hospital. Please think about getting a home health aide, or, as much as I'm sure you don't want to do this, it may be time to look into placing Bill in a nursing home. Very, very, painful decisions, but what good will be served if you end up too sleep deprived and sick to take care of him?

joang

Joyce,

I can honestly say I know what you are going through. I too went through this about 8 months ago. I used a Home Health Aide for 6 mos. ,but, then I knew it was time for me to make that very painful decision to put my LO in a Nursing Home. I did find a very wonderful home for him and I see him everyday. He seems to be doing better here than he did with me. Not that I was not the very best Caregiver I could be, but, at times I was so tired and irritable that I know that made it hard on both of us. When a caregiver stays up during the day and then with the wandering, most of the night, you tend to start feeling the sleep deprivation, you don't eat right, you start feeling depressed and it will take a toll on your body. My LO started to also get very angry and agitated and as time went by, it started to get a little frightening to me. He is very tall and larger than me. Like the doctor told me, when they get angry and agitated, they become a lot stronger and can move faster than normal and he was right. About a week after putting him in a NH, he was still very agitated and angry, so, they had to send him out to Gero-Psych for 7 days. This helped tremendously and the change in Meds helped his demeanor, but, as we all know the progression of Alzheimers was still going on, and he now needs help with feeding (on pureed foods), toileting, etc..

When my LO was at home, he had sundowners really bad, so, he wandered most all night. He also got to where he slept on the couch most of the time. Usually I tried to stay awake when I knew he was very agitated and was wandering, but, one night I must have fallen asleep, and I heard water running, and jumped out of bed to find all our faucets in the house running wide open. Luckily, I had heard of this before and had all the stoppers removed in the sinks. One of the friends in my Alz. Group had her LO flood their home as he put the stopper in and when she woke up water was all over the house. I also took the nobs off my stove at night and had my front and back door key locked from both sides.

Like I said in the beginning of my post, I was my LO 24/7 Care Giver for over 5 years. Once it got to being up most of the day and then the sundowning at night, it started to take a toll on my health. My blood sugar plummeted due to the stress and sleep deprivation I was experiencing. I knew my health was deteriorating fast and if I did not do something immediately, I would no longer be able to help him. Even though they are in a NH, you still have to be there for them. We are both a lot calmer and really enjoy our time together. He is in a wheelchair now, but, I take him for walks, sit with him, read to him, etc. It is just a whole different stage. Also, I am not advocating you place your LO in a NH, but, all I am trying to do is let everyone know that your health can and will be affected.

Please Joyce, try to take care of yourself, as you will be no good to yourself or your LO if you get sick. Take it from me. I have walked in the shoes and I do understand. Kay Kay

Joyce,

Some of the same things are happening here. Going without sleep is a detriment to your own health. As I said before, get some help.
We get irratable and in turn our LO gets aggitated. It sounds like you are on the right track as far as getting help with his issues. I will be taking Ralph off of the AD meds as soon as I run out of my supply next week.

I will be placing Ralph in a small AD home in a couple of weeks. His psychiatrist told me two months ago it was time. I have been looking since then. There is only five people cared for in the home. The owner did not like the larger care homes for his mother,so he started these small care homes around town. It has been an emotional day, making this decision, but everything has fallen into place and it does feel right. I am exhausted and feel like I could sleep for a solid week.

You are in my prayers Joyce. Take care.

Darlene

Thanks to everyone for your advice. I am getting plenty of sleep so far. Don't feel tired or stressed. But I am always on alert for what may come next. I didn't reread my post and I don't remember if I told you that the psych. told me to call him whenever things got to bad and he would admit Bill to the psych unit at the hospital for ten days. So I have that short reprieve if I need it.

He has been just sitting around most of the day. He didn't eat anything today and for the last three days now he has turned down dessert. That's a hugh change. So is not eating. He went to bed at 5:30 tonight so I have just been resting and doing nothing. I'll let you know if he sleeps all night.

Jane, I am happy to share. A day in our life is pretty boring...LOL....Since he is completely unable to do anything for himself I get up and then clean him, change him and feed him breakfast. I then go about my day until lunch and do pretty much the same thing. I check him a few times during the afternoon and if he looks awake I will give him a drink or snack and then we repeat everything at dinnertime. I give him a drink before I go to bed. He is contracted...his arms are bent and his fists are up under his chin. He wants to contract his legs so I am constantly fighting that. Changing him is difficult because he doesn't want his legs apart. He doesn't speak but sometimes will utter a word or phrase but does not respond to anyone speaking to him. He has been this way for four years now. No one expected that he would still be alive...least of all me. I have someone come in to give him a bath and stay with him if I am going on vacation or away from home for more than a few hours. Otherwise I feel free to leave and go to water aerobics, shopping, lunch or dinner with friends or just take some time for myself. We are in year 11 of this nightmare but I have to admit that the last years are much easier than the first ones. My husband was a corker...no cooperation, fighting with me all the time, spitting out his meds, peeing all over the house....you name it he did it. It has been a challenge to say the least.

I just take one day at a time...this has been going on so long now that it is what is normal for me. I am sure to an outsider it must seem like a horrible existence but it works for us. I am just thankful that I can do this...it has surely saved us a fortune....when he was living in the AD facility for almost three years it cost us between $6000 and $7000/month. Once he was unable to move or get hurt I figured I could save a lot of money by doing this myself. I can buy a lot of help at home for a lot less money.

I hope this is helpful...any other questions I can answer, just ask.

Sandi
Thank you so much for sharing this with us. Somehow knowing someone else is going through this and enduring even more than I am makes me even more determined to see this to the finish. My problem is that I would worry about leaving him alone and going out. Do you not worry that something could happen? I think the isolation of not even being able to go to the grocery store and leave my husband alone has been the hardest thing for me so far. If I could only go out for two hours and leave him it would make it so much easier. Have to take him with me and believe me it is so hard it is not even worth it, can't even get groceries unless someone sits with him or I drag him and never know if he will go with me into the store or not.

My heart hurts for you and others in this latter stage and the previous storms you came thru.
It is scary for me to hear what might come to us but someone told me one day at a time
Thanks for sharing
PAT

Jane, I don't take offense...no, I am not worrying about the legal part....I don't worry about what might happen...too much crap happens for real....LOL! If some entity wants to put a 60 year old woman who gave up her life to care for an AD husband in jail because she left him to go to the grocery store, so be it....at least there I wouldn't have to change anyone's poopy diapers....!

But seriously, if I were truly worried I would install an alarm system which could notify the authorities in case of an intrusion or a fire.

Jane, I hope you don't get to this point either. It is certainly a trying time for everyone and especially my husband because I know that he would not want to live curled into the fetal position with no help of a cure. He used to beg me to kill him.....he cried and sobbed and begged. Not easy to listen to. I am glad that he can no longer communicate as I could not listen to that every day.

Please know that I would never leave him if he were actively dying.....but, he has been in this condition for over four years. Do I just sit there and wait just in case he takes his last breath? During the time I am home, which is most of the time, I am not in his room, I am downstairs watching TV, in my office on the computer, in my bedroom reading or cleaning the house, doing laundry, etc....so, he very well may die alone but not because I didn't want to be there, it would just happen.

Of course, at this time I am not sure he won't outlive me......

Jane, your comments to Sandi are exactly the way I feel. You said it so well. Somedays I get on a pitty party and then I realize that although things will inevitably get worse, I need to enjoy today for all that it is and take one day at a time. I too will surely think of Sandi's situation in the future and I know it will make me stronger.

Sandi, I have another question that I wonder about in the bedridden stage of this disease. How do you handle the medical issues that come up? Can he be transported to the Doctor, how about Hospice? How do you handle all those those.

The doc advised me to stop my husband's Aracept and Namenda too, but I waited until after our daughter's wedding. Thank goodness I did! He was able to walk with her down the aisle (there wasn't a dry eye in the house). After the wedding I stopped the meds and he took a huge nose dive, got agressive with his caregiver. I ended up placing him in a nursing home 2 months after I stopped the meds. I'm not even saying that is a bad thing, just to be aware that it can happen.

When my husband was in a very good psych unit the staff asked ME if I was sure of the diagnosis as the meds they were using didn't work. I tried to be patient and explain that my husband did not have AD and suggested that not all dementia patients will respond the same to the cookie cutter approach to treatment. Another AD site warned over and over not to permit the use of Haldol. I refused its use until hubby decked a patient and started on the staff. I ok'd the haldol and it worked very well. At that point I wasn't concerned with long term side effects.

Divvi, I was thinking about the same thing. But then I thought well in a nursing home, the patients are left unattended and unchecked even, for hours at a time. The doctor said my grandpa was on the floor at least two hours before a nurse found him. Yet, they are not charged with negligence. So I don't know. I too don't know what I would do if faced with the situation poor Sandi has either... just so wrong to stay alive so long like this.

Note that though this came up on the front page, Sandi hasn't posted to this thread since last December.

Sandi, how are things? I too will leave my husband to run to the market for maybe an hour at most; he's not in Stage 7 but he's not very able to get around easily and hates getting dragged out to go with me on errands.

Thank you brie, I hadn't noticed that, I kept seeing her name coming up and just assumed they were recent posts. I too hope things are as well as they can be Sandi

Sandi's husband died a while back. At that point hospice had come back into the picture and he was under their care when he died.

When I first heard Sandi's story I felt like a lot of you. How could she leave him all alone? But frankly she had been told by both nurses and aides that there was literally nothing they could do for him. If the worst had happened, and there had been a fire, she wouldn't have been able to get him out anyway. I know that in like circumstances I could not move my husband out of this house by myself.

I've gotten deeper into this "mess" and I find that I'm doing stuff, like letting my husband go off on his walks alone, that I never thought I should do. But really, exactly how am I supposed to stop him. I don't look like I'm partially disabled, but basically I still am. I had nerve tests yesterday, and it looks like both legs have problems, and I have this really strange feeling that the report isn't going to be a good one. And in any case his "range" seems to be 2 to 3 hours. On what basis do I stop him?

My point really is that we do what we have to do. And that is the way it really is. And at some point I will be stopping all kinds of meds and doing so will probably hasten my husband's death. I won't be doing it without the advice of a Hospice doctor, but ... We do what we have to do.

I've been thinking about removing my DH from aricept and namenda so he could qualify for the Dimebon drug trial. He would have to be off for 90 days before qualifying for this trial. I'm scared to make the change and I don't know what to do. We were in the Flurizan trial and it was a bust.

oh I am sooo sorry Sandi, i didnt realize your DH had passed. well in the end this topic has closed and I hope you are at peace and trying to get your life back on track. my thoughts and prayers are with you. mercifully your DH is now released from the agony of AD.
personally if i had known DH would be so much better off without namenda or any of the AD later, i would have taken him off a couple of yrs ago. note i say latter stages, in the early stage i believe it helped. each person has had different experiences removing them from the meds..my best to each of you who are considering it. divvi

They've stopped selling it for allergies in Russia. Other people have been trying to find a way to get it, without any luck.

You do what you have to do to survive.I left my husband alone for most of the disease. I had no choice. I had to work, I didn't make enough to support us and pay a full-time caregiver, I made too much money to qualify for any kind of help. At the end of his time at home I had help from friends and family plus a small grant from a caregiver support organization and found a friend on SSI who was willing to stay w. him for $10 an hour. That lasted about 7 months. Now, he's in a facility. I was afraid he would get in trouble or kill himself accidentally, but then I thought - so?

Sandi's situtation was different, her husband could not have even done anything to harm himself, he was helpless. but on the otherhand if you had left your husband and he killed himself or accidently hurt himself and if he were to the degree in this disease process that he was incompetent, then you better believe, it is consider NEGLECT just the same as if you left a child alone.

I would hope that DSS would go after anyone who did that and I for one would report them if I knew about it.

Starling, Not one thing was mentioned in the previous posts concering protecting yourself from someone trying to kill you, not one thing. The thing that we were discussing was leaving a person alone that might do harm to themself.

I am off this board for good. I will not listen to this.

Ah, Starling, don't feel bad. Some posts get people more worked up than others. I felt the same way about the driving posts..how COULD people let AD patients drive? And a lot of people are all het up about the woman who has the school bus driving husband.

I see the point you are trying to make...hey, they are an adult and if they want to walk out the door, that's the way it will be.

Unfortunately, there was just a story TONIGHT (what a coincidence) about this exact topic. Legally, it boils down to that if a person is a caregiver for an elderly or mentally incompetant person (no matter the diagnosis), they are legally obligated to keep them from harm. Otherwise, they face abuse charges, same as allowing a child to walk out the door.

Sounds great from a caring society point of view, but not a lot of fun when a screaming husband wants to go on a walk and you don't. Having a toddler scream at you is one thing...an adult is another. And then you get a doctor who won't help sedate because he doesn't 'believe' in it.

And what is next on the 'abuse' idea? My DW wouldn't take her meds; was that abuse? Did I abuse her when I couldn't get her to take a bath for a week? When she won't eat...I guess that will be legally my problem, too?

Talk about a rock and a hard place. I still maintain that people need to walk in our shoes before they decide what is best. Not just the shoes...walk in my shoes, shirt and underwear and you'll see what life is like in the looney bin.\

It's all good.
yhc