I am having a really bad day. Robert was upset with me from the get go today. He was yelling at the kids this morning and yelling at me about how the kids treat him like crap - an every morning ordeal. The kids are cranky in the mornings and he nit picks so they argue.
I remembered after getting to work that I forgot to send money with Ryan to pay a deposit for a school trip he is taking in March. I called Robert to see if he could run this up to the school. He was really short with me and all sulled up. I asked him what his problem was and he said that he had read an e-mail that I had sent to my sister a few months ago and had talked about him in a negative light.
So, he was really mad at me. I don't know what the e-mail said. It was probably written at a low point back before Robert's AD meds had started to work. I'm not sure what I'm gonna go home to tonight. I have been at work for 2 and 1/2 hours and all I've done is cry. I feel like I'm losing my grip on everything. I called my counselor, but she doesn't have any appointments.
Robert said that he would like to go with Ryan on the school trip (to New York City). I told him that I didn't know if that was a good idea given his illness. I wasn't sure if the school system would allow him to go. That went over like a lead balloon. I don't know what Robert will be like at the end of March. He might be fine - but he might not. What if he decides some kid on the trip gets on his nerves? What if he starts to verbalize his dislike with how things are organized or scheduled?
He's never been to New York and I have so that complicates things further. I am so tired. Every move I have made in the last year has been wrong. I am at my wits end. I really hope and pray that the resperidol kicks in soon.
I'm so sorry for how you feel right now. I just wish I could reach through and give you a great big hug, because it almost sounds like your husband and mine are clones of each other. The kids are cranky every day, DH nitpicks, and they all cause me a ship load of anxiety. DH is also prone to want to do things with the kids, in my opinion to be spiteful and prove to everyone he is still capable. But with him being labile, quick to change, I would not encourage DH to do anything with a group---especially a group of kids. AND, it is sad they feel this way, but my kids would rather back out than have their Dad go on any extended field trip, especially if I wasn't there to try and temper Dh away from conflicts.
I am so familiar with the feeling of starting the day with a lump in my throat. DH was mad yesterday over anything.....like me taking the trash up to the street with my son. "That's my job." Uh, I just thought I was helping. It is so hard to know how to treat these guys one minute to the next, because we are never sure how they'll react. You may go home and find he has gotten over all of it and is only frustrated with an obnoxious commercial he saw, or another simple issue.
I just wish you could feel better. Just want you to know how I truly can empathize with you. Here's to a better day.........
And I feel so bad for both of you. Just the fact that you have younger children to experience all this got to be a daily nightmare. Leighanne, is it possible you suggest some day sooner than the field trip you and your LO go to Nyc as a sort of a date because you need the time together for the day. Just a suggestion it may or may not work. I went thru alot of my LO paranoia and negative stuff. Makes you feel like you are always doing wrong but you are NOT And the false accusations you do not deserve. Thank God it slows down or you just learn to walk on thin ice. New Realm and Leighanne, I will continue praying for your strength thru this. I send my love and hugs to you all. Thanks for sharing, PAT
Diana, I feel so much better knowing that I'm not the only one dealing with this stuff. I was able to get into the couselor's office over my lunch break. She's telling me that I need to get myself and the kids away from him over Christmas and Ineed to think long term. She said that maybe we would have to live in separate homes, etc.... Then I get a call from Robert on the way back to work and he's fine. He's over this morning and wants to have lunch together. When I explain that I had a counselor's appointment and have to get back to work, he gets mad telling me that he never knows whats going on. He didn't know about the appointment so I'm obviously keeping something from him.
Then he calls me back later and says he's sorry and that he knows he's hard to live with, etc.....
I feel like a rubberband that has been stretched to the point of snapping. You're right about Ryan, I don't think he would go on the trip if he thought his dad was going with him.
I guess I'm just going to have to get up earlier and try to head off the fussing and fighting from the start. The counselor made a couple of statements that I'm having a hard time sorting out..
She said that Robert has lived his life - the kid's lives are just beginning. So, I have to do what I need to do to protect them and their childhoods.
She also said that I should try to get guardianship over Robert so that if I needed to place him, I could whether he liked it or not.
My head is kind of spinning and all I want to do right now is crawl under the covers and hide.
I'm sure it will be better tomorrow after a good night's sleep.
Sorry to have to put in my thoughts because they are so unlike what the counselor tells you. If you have a Durable Power of Attorney then there is no need for guardianship. It does not seem that Robert is to the point of placement and the Counselor could not possibly know what is best for Robert, only his Doctor would know that. So many times I feel the Alzheimer patient's feelings and rights are completely left out. Through sickness and health and the counselor is already telling you that you may have to seperate.
I kind of see both points of view. That's a toughie, no question. Does the counselor in this situation have any particular experience with AD? The rights and needs of the patient are an important aspect, I don't think anyone would deny that. But I still think that if I absolutely couldn't work things out, with the patient remaining home, so that the environment was healthy for a family I'd put the kids' needs first. I wish you could do win-win with this illness.
I was kind of taken aback when I read what the counselor said. I wonder, like Emily, if the counselor has any experience with AD.
You are in a really tough situation - it doesn't sound like Robert is at the stage in the disease in which he is ready for placement, but the needs of your children are important. It is hard enough for us adults to deal with the AD outbursts - it has to be doubly difficult for children to have to deal with them.
I'm wondering if you could get Robert into Daycare, and the kids into some kind of couseling to help them deal with this. Which brings me back to my soapbox about the Alzheimer's Association waking up to the fac that there is an explosion of EOAD, which leaves so many children in need of support and counseling.
In the meantime, you and the kids need a break. Can you send Robert to a relative's for a few days during Christmas vacation?
I agree with you guys about Robert's feelings. I sometimes wonder how do you balance it - between the kids and him. Who comes first?
Right now, I think we just have to wait out the medication change and see if that helps. Robert is so frustrated that he can't work. And the kids really do treat him badly. They are very disrespectful. I have tried to reason with them and have fussed at them until I feel blue in the face. I feel like I'm loosing control of the whole situation.
Robert and I talked again this afternoon. I suggested maybe we try and make up some new rules about the morning routine. I need to try to get up earlier (boy is that hard for a non-morning person). But, I thought maybe if we can get the kids to lay out their clothes, backpacks, shoes, coats, etc... the night before it would help in the morning. We could discuss the weather so the kids would know what type of clothing they needed to wear. I think that's part of the problem. The house is so disorganized. They are scrambling around in the mornings trying to find everything. Plus, they don't get up when Robert first tells them too. Maybe if I get up earlier, it will set a better example.
I'm desperate enough to try just about anything. I certainly do not like the idea of separating and I think on some levels the kids would resent me for abandoning their dad when he needs us the most. I just think they are dealing with their own anger about the situation and it all comes out at him.
I think we all need a break from each other, but I'm really afraid to broach the subject with Robert. Maybe, I'll see how things go over the next couple of days and test the waters a little.
Jane, I don't know about DPOA and the nursing home but I do know that DPOA is no good when it comes to commiting someone to a neuropscy unit. You have to have guardianship. At least here in Mich. you do. Unless Bill agrees to stay where he is right now, even with DPOA, I would have to go to court for guardianship to keep him there .
I don't know how those with children do what they have to do. It's so hard without having children to worry about and to take care of, I can't imagine how hard it is with them.
Joyce43, that is correct, even in a Nursing Home you cannot keep them there if they are of sound mind, but then who would want to? Most people in a neuropscy unit are there because a Doctor placed them there, not a spouse. I think too many times a person's rights can be violated before you know what has happened. I have to put myself in the place of Robert, and I think that a counselor who would advicate leaving a person in this condition is not my cup of tea. Just always remember the Alzheimer patient will not always do everything you want them to and neither do we.
I live in the South Texas area in Corpus Christi. In order to admit someone into the Neuropsych you need to have a Mental Health Warrant. This is issued by the courts. I noticed in May of this year my husband's Alz. started to really progress. Along with it came anxiety and anger. He is very tall and strong and when he got angry during this period, they do seem to have more strength, despite the AD. Unfortunately, on Mother's Day of this year, I ended up calling 911 and they were so wonderful and helpful. The police got the Mental Health Warrant for me and he was admitted, but, only for 3 days. After he got out the medicines worked on behavior, but, the progression of AD still continued and unfortunately, I had to eventually place him in a Nursing Home. The Nursing Home had to place him one more time for evaluation in Neuropsych, but, they got the Mental Health Warrant for him. I do have the DPOA and when admitted to the Nursing Home, he was not of sound mind. My husband was in the latter Stage 6 and did not know his name, where he lived,and barely talked, etc.
If the person is of sound mind, they will have to admit themselves to the Neuropsych, (unless they pose a danger to themselves or someone else) and they also have to admit themselves into Asst. Living or Nursing Home. They can also leave at any time if they are of sound mind.
I too would also have to place myself with Robert and not advocate what the counselor said about placing him when he is still of sound mind. I do feel that getting the meds adjusted might be another thing to try. The many years I was my DH's Care Giver, there have been alot of up and downs and many obstacles to get over. This is a very cruel disease and with children, I cannot even imagine how hard it can be. My prayers are with everyone. Kay Kay
KayKay, my husband is also in late stage 6, does not know his name, where he lives and cannot talk. Would you telll me how long your husband has had this disease? and also how long he has been in a NH? Was the late stage the only time the anger presented itself? I have not yet seen the agressive side of my husband. Any help you can give I would appreciate. I am still careing for him at home.
My husband was diagnosed with AD in 2003, but, as we all know it begins a lot sooner, but, we just have trouble recognizing the signs. My husband is 12 years older than me, so, I just thought some of his problems were age related, but, boy did I get a surprise. My husband has always been so laid back and never in the 26 years of marriage had he ever yelled at me or raised his voice, so, that evening when he started yelling at me, trying to come after me and also yelling at our neighbors, this scared me very bad. I knew something was not right and I knew I needed help. Like I said the police and EMT's were just wonderful and they knew how to handle the situation. They sent the crews that has dealt with AD before, so they knew what to do to calm him down. I had no clue. I also knew I was not getting close enough to attempt it. It seemed the harder I tried to calm him down and talk to him, the worst the agitation and agression became. Luckily, all my neighbors were very close to him and understood the situation. They all care so much for him and just wanted the best for him, so, it made things a little easier for me.
It seems like this incident was the turning point in the AD where I had to place him in the Nursing Home. I placed him shortly after this incident because he was starting to wander everywhere, turn stove on, turn faucets on at night, you name it, we went through it. I was getting no sleep because he started wandering everywhere, both day and night. I tried Home Care, but, he would just start wandering away from them also. He was even going into our neighbors yards and trying to walk in their house, not knowing where he lived. This was a very stressful time. He would pull the covers off of me at night and just wander through the house, sometimes he would wake me up and demand that we get up and go to work. He would talk to himself in the mirror and sometimes get very angry at himself, because he thought he was talking to a stranger. This was scary. I was his 24/7 Care Giver for the last 3 years, before that he was able to function on his own.
All my friends and family say that they feel this incident was his way of telling me to let him go and it was time to place him. Of course, we do not know this, but, he has done so well since and is doing really well in the Nursing Home. But, after this incident of agitation and aggression, he did start declining in his AD. I believe it was just another Stage he was entering. Also, Jane, you may never see an aggressive side to your husband. I really hope you don't because it really hurts when this happens. You know it is AD, but, it still hurts deeply. My husband has been in the Nursing Home for approx. 7 months. He is in a wheelchair, does not talk, eats pureed foods, is incontinent, but, he still has the biggest smile when I walk in. I took him outside today as it was 82 degrees and so pretty. Thursday is the residents Christmas Party and Santa Clause is making a surprise visit. They will have music, etc. , so, it will be fun for them. Hope this answers some of your questions. Kay Kay
I am so sorry that you are having such trials. It has to be so hard with children. My husband is in the early stages of MCI and had been argumentative and very ugly for a year and a half. It was getting worse. I wound up in the ER with exhaustion and the ER doctor said I could not go home if my husband was there. My husband even came into the ER and started fussing at me telling me that it was my fault that I was there, etc... The doctor said that we needed some time away from each other. It was such a relief that someone took charge and told me and told him what was going to happen. He was able to go and stay with my daughter for three weeks. During that time, I was able to get back on my feet and assess what I needed to do differently. The point I am trying to make is that someone else with authority took charge and it was out of my hands - and it sure did feel good. I was so caught up in our "stuff" that I couldn't see an easy solution. Nor would he have listened if I said it. It also made me realize our situation is much more serious than I had thought. My prayers are with you and your family.
Just today my husband had me so nuts. I've really been working on trying to temper my responses to him, particularly when I feel he is attacking me verbally, attempting to start an argument. Still a rollercoaster ride hour to hour, but the more "matter of fact" I am, the shorter my answers, and the more level I keep my voice, the better things tend to be. But, when I get so worn, so tired it is so hard to stay calm. I found myself doing all I could to remain calm in his presence, even saying, "I will not argue with you on this" and leaving the room, only to find myself standing in the bathroom feeling ready to cry my eyes out. So then I question if I'm doing myself any good by holding it in and getting to the point of tears. Damned if I do, and damned if I don't.
Anyway, today the usual questions start first thing in the morning, and the incessant talking, and repeating. I have not sent one Christmas card or done any shopping. I have one Grandbaby on the opposite side of the country and hadn't even bought her anything yet. Everytime I would try to put together one card, and small package for my Sister's family I couldn't. I couldn't sign the card and get it addressed in one sitting. I was really beginning to crack. Yes, I'm grouchy, so I don't need him MAKING ME grouchy only to have him COMPLAIN TO ME that I'm grouchy. Arrrgh!
After school daughter had a friend coming over to make Gingerbread Houses. She is 17, rarely has friends come to our house. But she did today. Wouldn't you know, not 5 minutes in the door after school, DH starts in with his "stuff." Saying I had an assistant here last night, "that gal who was here." Then he proceeds to say, "you didn't care that you left your babies here. You were out with your boyfriends." Uh, Oh! Daughter spoke up, "Oh, my God. I can't believe you are doing that in front of my friends." It kept up over several minutes, many insinuations. I fixed him some herbal tea in hopes he'd enjoy that and relax, but NOooooo! It kept on to the point I said, "You and I need to be taking a ride." Oh, of course he wants to go anywhere I go. We hit the highway, and drive around a mall parking lot. I had NO desire to go into any store and shop. Not with him. Finally I decide that I have the one Grandchild, and I will feel so bad if she doesn't have something from her Meemaw in time for Christmas. This is probably the closest I'll get to a store before the weekend, so I'd better try to go in anyway and find something. So into Macy's we go. DH is stuck to me like glue. As in stuck in front of me, behind me, beside me. I could barely move around. Real frustrating. AND, saying to me every few minutes, "do you love me? I love you. Will we be going to your house tonight?" People looking at us. Then him wanting to kiss me in Macy's. Aaaaaack! STOP!!! Then he's got to find a bathroom. As usual. Then he gets back after we find one and now he's pushing me to get something and get back home. Pressure! I finally go ahead and grab two outfits, then a puppet that was displayed right by the register. He wasn't even giving me time to shop for a toy.
That's it! I might just have to use my kids as a distraction. The kids are on Christmas vacation starting tomorrow. I plan on getting up and hopefully escaping out the door without him. I have to get a couple presents for my own kids. I've done nothing at all. Also have to shop for the ornament exchange party we have this Saturday. My daughter tells me now she is "worried about taking Dad to Aunt Katie's party, because I'm afraid of the things he is going to say around everyone." These are the kind of days when I can't help but think my husband has to go, to save my kids. I am sorry for how that sounds..........but it's the truth.
Although my husband was always kind and gentle with me (before AD), in the early stages of this disease there were a couple of times I did fear that I might be physically assaulted. Because he is so much bigger and stronger than I am, I knew that if that ever happened, I was in serious trouble. But I was also afraid that if I called anyone for help, that he would be treated badly. Early in our AD journey, someone advised me to call and register my husband with the police, the paramedics and the fire deparment. This way, anyone who responds to a 911 call will know that there is someone with dementia in the house. I would certainly never have thought to do that on my own. On a similar note, they also told me to post all the medical information (list of meds and medical history) for both of us, as well as our emergency contacts, on the refrigerator door, because that's where emergency personnel would look for it. My husband is on so many medications that I don't know if I could remember them all in an emergency situation. And if I wasn't able to give contact information, it could really complicate any emergency. Every time I think this is too hard for me to deal with, I think about those of you who have children at home, and absolutely do not know how you can manage. My thoughts and prayers are with you.
What a day!! I think your bad day was worse than mine. At least, I have work that gives me time without Robert to sort of clear my head and think. I also do alot of online shopping at that time. I really love Wal-Mart's new site to store thing!!
I think for me it's hard after a period of time when Robert has seemed almost "normal" and then he exhibits AD behavior. Last week we had a couple of doctor's appointments where Robert scored in the normal range on memory tests. It's easy to let yourself start to think maybe this isn't AD....... And then you get kicked in the gut with it all over again.
I don't know. Right now, Robert is preoccupied with car shopping. I've given him a dollar limit and he's been looking for days. He's going out with his brother today. We went for 6 - 8 months where he never drove and I thought his driving days were over so I sold the 2nd vehicle. Now, (thanks to Namenda) he's driving again and wants his own car. What do you do? Fortunately, I didn't spend the money we made on selling the car a couple of months ago. So, that's his budget.
I have made a lot of poor decisions this year and feel like I'm constantly undoing things that I just did. But I'm trying to look at the big picture and focus on only what's really important in the long run. Even if he only drives for another year or so, if he gets enjoyment out of the vehicle he gets for a little while then I guess it's worth it.
Hang in there.... I would get everyone gift cards or cash for Christmas...... It would be easier on you..
My heart goes out to all of you with spouses in the early stages. It is so hard to understand why all of a sudden your loving, caring spouse turns into someone who you do not regonize. I think I cried for two years, wondering why I was being attack by this man who had always been a kind, caring person. I wish I had some magic formula on how to get through this stage, but I don't. Hang in there and try to take care of yourself. You cannot take it personal, but I realize those are empty words, as it is really difficult to remember that it is the disease that has turned your life upside down. God bless you. Darlene
Just know, we all want to send to you all hugs and love. Everyone seems to be having too rough of a time., But know you are all doing the best you can. God, we pray to have this AD erased from the world or a fast cure to end this horrible disease. In any case we need relief and comfort. Yes, hang in there everyone and know that you are loved by your LO (even though its hard to feel it these days) and family and us and our dear Lord. Thanks for sharing PAT
I thought my day was bad yesterday. Gord and I went shopping. I left him on a bench while I went into the bank. There was a long line-up. When I came out, Gord was gone. I walked around the bench twice before I could believe my eyes. I had not thought to check my cell phone and the battery was almost dead. I used a payphone to call Gord's cell and it was off. I had not checked it and he does not know how to turn it on. I went out to the parking lot and our car was gone. I tell him how to get everywhere although usually he can get home from anywhere. My heart was in my throat. I called a friend and asked her to watch for his arrival. I started walking home and then took a bus. She had him by the time I got home. He had told her that he hadn't seen me all morning. I also called my son who came over as well. The rest of the day was good and bad. We went to bed and all of a sudden, he got up and got dressed. He said that he didn't feel comfortable. I decided not to make a fuss and said nothing. I stayed in bed for a bit and then went to the kitchen and said I needed a cup of tea. His body language told me that if I sat with him, there could be trouble. I came and sat at the computer with a sick stomach and a racing heart. After about 20 minutes, he came in and was all happy. He asked me if I could sleep on the futon as the bed in our room used to be his mom and dad's. I told him it was never theirs and I was going to bed. He asked if he could come with me. I thought if he made a pass at me I was going to slug him, AD or no Ad. It was a long night and I couldn't sleep much. I am really, really tired. I hope he is OK tonight. I agree that you have to be nonchalant if you can manage it and keep a level tone of voice and don't argue. Are we superwomen or something?
jan...what an amazing story, among many. All I've had to deal with today is deflecting the usual "What can I do now that I'm retired? How about if we buy a house for me to renovate?" I deflected it in the usual way, by pointing out our unvarnished woodwork and unpainted walls. He decided he'd work on building a door for a small closet in our bedroom, then couldn't find Home Depot to buy plywood and came home emptyhanded. I will help him obtain the plywood, maybe tomorrow, since attempting to build a door doesn't involve applying sharp tools to any existing parts of the house. That's what I live in fear of. That he will decide he needs to take something apart and redo it. That's when all the tools may have to mysteriously disappear.
Last week I had an episode with DH where he called me ever vile name there was and said some very nasty things to me. This wasn't the first time and when I read that there are other spouses that have / are going through this (though I wish you weren't) it makes it easier for me to deal with this. But I still want to slug him!!!
The neurology appointment is Jan 2nd and I will be glad to start getting some answers.