Yesterday I took Kevan to the company that sells CPAP machines to pick his up for a two week trial. They are trying to find out if this will help him with his problem of nightmares and not being able to stay sleeping.
He was edgy and agitated through the whole appointment and refused to listen to anyone but he nurse. He is always like this with me as he says I am not a professional so he doesn’t have to listen to me. No change there.
I drove him back to the residence and when we arrived he said he needed an ativan, so I sugested he talk to his nurse. He then informed me that he had a stash in his room. So I asked him to take his machine to his room and I would get a staff member to show them how to work and clean this machine. I found a nurse and as we went to his room I told her about his stach of ativan. She said “ I have to take them away” we went into his room and he threw himself across the bed sidways and covered his eyes with his arm.She watched as I showed her about the machine and then she asked for the Ativan. I asked him how he was getting this “stash” and he said that whenever he is going visiting they give him one in an envelope to take as needed. He never gives them back and I guess they think he has taken it. I told them “NO MORE ATIVAN” Now the person who is picking him up will have to go in to get it and keep it on them and give it back if he doesn’t use it. He is so sneaky. I guess he is trying to maintain his independence for as long as he can.
He then asked if I could ask them not to wake his for breakfast but to let him sleep. He can get coffee, juice and toast and penut butter and jam from the PSW when he gets up or he can go to the cafeteria for the same thing. He can also get cereal and toast. I also notice that he is shuffleing and walking quite slow. He was in the military so he always lifted his feet and walked very fast with a purpose.
I cried all the way home then cried most of the evening. I wish I had family to talk to when these things hppen but when I do they just say” You have to do what you have to do” what does that comment have to do with needing a shoulder or a hug? I am sure glad I can come here and dump all this out. Thanks
Hugs Jazzy
There I go crying again.
He just called and he didn’t get up until 09:30. He called me to tell me that he woke about 08:45 but just lay in bed until he felt like getting up. He also said he had not dreams.
Jazzy, This is very tough on you, especially since you have no one on site to talk to about it.
I agree with you that Kevan is tying to maintain his independence. He is not the first person who keeps a stash of Ativan or similar drug for “emergencies” but usually people do this because they think they won’t be able to get the drug when they need it. Maybe it would be comforting to him if the nursing staff assures him that they will give him Ativan whenever he feels he needs it. They could also explain that although they trust him to keep the Ativan (!!!) the law requires them to maintain strict control over it and they could get in trouble if he keeps a stash. It might do more for his his self-image if the nurses treated him more like a trusted member of his care team instead of like a naughty child.
Hang in there! You are doing everything right. Most of us can easily fool our spouses but given Kevan’s high level of comprehension, you clearly have to deal with issues that others do not.
Jazzy, I totally get the frustration and tears. Truly! Our advocacy work never stops. Good on you for taking action on the stash of Ativan! That could have been a dangerous situation. You will see I posted a new thread on my husband not recognizing me for the first time yesterday. I cried all evening and regularly this morning. I will get through this just like we all manage somehow with all the losses and support here of each other.
Kevan knows that the Ativan is as needed and he knows they will give him one if he asks and also knows they have to keep them in a safe place. The problem is he wants to run things his way and just insists he will have his way or else. This is part of the Fronto. " MY WAY OR ELSE" look out if you cross him. Anyone who lives with a Fronto knows exactly how it is. I am blessed that he is there and not here because he is very hard on me. Now the staff change so he can't fixate on one person. Thank goodness or they may have a really hard time. He feels the only ones who he can talk to are the registered nurses as they are professionals. Strange thing this idea he has I in his head. Before this disease took over I was the go to person in his life. Now I am sh*t on toast. As for my family, well they are in for a big surprise if I out live Dad. Mamma will be unavailable from that day on. If I don't need them now then I sure won't need them then. Then I will just have me to take care of not Dad. I'll be free from all of it. That is if I out live him and we just never know with all this stress in our lives.
I always hesitate to say "I know just how you feel" because of course, I cannot know. But, I know how I felt when in a similar situation. My husband had FTD. Although he was unable to work for a couple of years before his placement, when he was working he was not a "master of the universe" but had autonomy.
As the disease progressed he became increasingly angry and frustrated. I felt it was, as you and myrtle said, a reflection of his feelings about losing his place in the world. He took Ativan as well. While in placement it was given to him dose by dose.
You mentioned that Kevan woke and then rested before getting up and also said he did not have dreams. Was he using the CPAP? Does he use Ativan as a sleep med? I think that Ativan can depress respiration while sleeping. To add to this, CPAP can dramatically alter REM and the sleep experience. So, I was wondering if the CPAP provider knows about the Ativan and the Ativan provider knows about the CPAP.
I am surprised that he was able to build up a stash of pills. At my wife's ALF the staff has to watch the pills be taken unless there is a trusted person (e.g. relative) with them. Her previous ALF got in big trouble due to poor handling of medications.
I agree that this is his attempt to keep control over his life. After my wife moved into her current ALF the staff pointed out that many of her behaviors were attempts to maintain autonomy even though her behaviors led to being overwhelmed.
He is under the care of a sleep Doctor here and was referred by the resident Dr. All his Meds info were forwarded to him. No he does not take Ativan to sleep. He takes it at 08:00 and 17:00. And sometimes at 12:00 if he is upset. He take his nighttime meds at 21:15 then off to bed.
The CPAP is to try to get him into a good them sleep as he wakes up around 03:00 to 04:30 and can't get back to sleep. He also keep saying he is awake all night but the staff are checking him more often and the say he is sleeping not awake in any way.
It's just how this disease is affecting his brain and we will just have to ride it out. If the CPAP readings are 5 or lower after this test then he will not need a machine.
I have been dealing with this sleep problem for 10 years and the only change is that he no longer has the violent nightmares anymore.
His memory is really deteriorating and I notice the shortness change each week now. Long term is going and he is not using his computer like he did. Faster changes right now.
Jazzy, sending you hugs and support. My DH did not have the same symptoms you are dealing with but sleep was always an issue. I tried the CPAP years ago and he could not tolerate it. He was always a mouth breather and it made him feel like he was suffocating. I finally gave up. The last two weeks of his life he was sedated in order to get him to sleep. We all do,the best we can. God bless
I went to visit K this morning and found him laying on his bed with his arms over his head. When he saw me he jumped up and threw his arms around me and told me that he was so scared and frightened. The CPAP machine was causing him so much fear because he is not able to handle it the way he would have. He was going to his nurse to try to figure out how they would clean it. Nothing connected in his mind. I got him settled down and took him for coffee. I came home and a friend told me to go and get the machine and tell them no more tests. He was so happy that I was taking the machine away. He said he was so frightened and scared. I also found out that a lot of staff thought that he was being controlling because he made such a big deal about them wearing name tags. The fact is that he can't remember them from one of end of the hall to the next and he gets scared. They know now. The nurse told him that he has to drop this front he shows and tell them when he is afraid. He says he will try. When he wakes in the night they want him to come and sit at the desk with them until he is alright.
I am tired and now I have to make sure the staff know he is frightened.
You speak of cleaning the machine. The only thing we do is change the filters monthly. My hb has never used the humidity nor wanted to with it, which does require to dry it daily.
I often think he lays in bed pretending to sleep until 10 or longer sometimes cause as soon as I get up (if I have stayed in bed that long) he is taking his mask off.
All is calm in this FTD world. K is back to himself. No more machine to frighten him but he is very scared and frightened of just what I don't know. I guess we will never know. He wants me there right beside him every minute and hangs on to me like I am a log in the water that will keep him floating. My K was never afraid of anything and now the fear is so strong. I wish I could take it away. I just hate to see him like this. He has decided that he doesn't want our children to visit. I wonder if he just doesn't want them to see him going down hill. He has always been the life of the party. I think I have two Dr.'s and a CPAP company ticked at me for pulling the machine test off. I just couldn't believe what it did to him. Never again. I don't know why they keep trying to do this test. He is terminal. Just leave him be as happy as he can. He sings and dances with all the elderly ladies and hugs them. They just love him. All the men think he is a flirt and avoid him. I guess he is now a real ladies man. LOL. Well the catastrophe is over, back to normal for a few days. What is next. I feel like am going from a roller coaster to a merry go round and back.