My hb was a pilot. Twenty years Air Force, eleven with Continental Airlines. Pilots are very wary when it comes to any kind of medication. He wouldn't even take aspirin for a headache. He always said he didn't have allergies and refused to take anything. Finally they came up.with some nondrowsy antihistimines. He would take them once in a.great while. He always took vitamins, so when they suggested Aricept, I just added it to the vitamins. He tolerated that one well but had explosive diarrhea when we tried namenda. Then found out he was lactose Intolerant all of a.sudden. So after getting that under control, gave namenda another try -- same effect. When I was one month old, back in 1954, I got sick.and they gave me the new miracle drug -- penicillin. I was allergic. Had canker sores all over my body inside and out. They sent me home from hospital expecting me to die. My father held me down. My mother fed me with an eye dropper. Obviously I survived. I do not tolerate most drugs. And am always afraid to try a new one. So when hb became abusive and generally combative and everyone was suggesting medication I was leary of that. I also have some experience as a Clinical Psychologist in state mental hospitals back in the 70s. So the thought of giving those medications to my hb was not easy to contemplate. I knew he wouldn't take it voluntarily. For a.time I tried taking an antidepressant. And I tried behavior modification techniques on him, with some limited success, and on myself, to change how I react to things. I had very little success finding an antidepressant to work for me. Also I resented putting a drug in my system as a result of HIS illness! Talk about cognitive dissonance... Recently I weaned myself off the one I was taking. Have not noticed any difference. Around that time, his behavior had changed quite a bit and I decided to give Adult Day Care a try. I didn't really think it would work. On the first day I was nearly having a heart attack. He walked right in. He was even participating in the chair exercises. But he got very agitated in the afternoon, pushed a nurse around and cursed at her. I thought they would refuse to have him back. But they just suggested getting a medication from his doctor to calm the anxiety/agitation. And they wouldnt let him take their bus. His Dr prescribed Haldol and that worked for a little while. He was more easily redirected. They wanted me to give him one in the morning too. They didn't think Haldol was the best choice and suggested a geriatric psychiatrist. It just happened that I had a referral to the VA geriatric clinic at that time. Since beginning of this month he has been on depakote. This has changed.everything! He still.doesn't like to change clothes, but he gets mad at the jeans, not at me. He hasn't threatened me since the beginning of the month. It has me reevaluating everything. I am trying to remember what our life was like BEFORE. I am trying to figure out why I married this guy. Did I love him at one time? Before the abusive relationship started? Do I even know what love is? Doesn't really matter. We are well.beyond that. But if I am not being emotionally and physically abused perhaps I could tolerate trying to find something he might enjoy doing. He likes to be with me. Maybe we could be together somehow.
-2- The month of April.was.so awful and I felt threatened all the time. I collected information about Memory Care places. Didn't get around to visiting til this week though. I had visited one place last winter. Didn't really like what I saw. Didn't think hb would do well there. Was contemplating in home care when I found my notes about Adult Day Care and decided to give that a try before in home care. Truth be told I had a.bit of a.struggle hiring someone to sit and entertain my abuser while I cleaned the house and did weed abatement. But I was also concerned about liability in case he would try to punch a hired caregiver. They say they are trained to deal with that, but I don't know. Now, with the new medication he is much calmer and more easily redirected. He still paces looking for me in the afternoon, but yesterday he asked Dolores if he could leave when I said let's go home. Today he wouldn't leave with me for several tries. He was trying to figure something out. Don't know what. He has been participating in some of the activities. On Monday I toured a Memory Care place. Looked really small on the outside. Sounded ok on their website. But inside, WOW. They have a tall.wall surrounding a courtyard with a gazebo in the middle and a walking path around the perimeter. The residents can go out there any time. It is beautiful. The sales/marketing person knows everyone. Knows their story and some particulars of their care plan. They can even do hospice care there. And the fees may be somewhat less than some of the newer places. I could arrange for respite care for 2 weeks to several months. I could see hb at this place. Especially with the new meds. I may arrange for respite here for him and go back east to see my brothers. But even if I don't do that she suggested having a plan in place. She said she is frequently at the emergency room with families who can't bring their parent or spouse home and have no idea what options are out there. I am really glad I checked out this place.
Over at alzconnected Mr. Toad said something I can't get out of my head. He is really something else. He has grown on me though. He does have good suggestions and is certainly worthy of respect. But the first time I read something he posted I had to throwup and take a.shower. He is so lovey dovey, ooey gooey, perky and positive about everything. I had no way to relate. Anyway, someone said she was so frustrated because she had brought her flowers in from the patio because frost was expected. Then she found her hb had put them back outside. Mr. Toad commiserated and then suggested she press some of the flowers as a memory of the time he tried to help. It has been so many years since I could come up with ideas like that. It is hard to remember, did I ever feel that positive about things? I have.memories like that of my mother in law during her alzheimers journey, but not of my hb. I wonder if this medication will be enough to allow me to find a tiny bit of that.
Bhv, Just checking in to do quick spam check before bed and saw part 1 of your post. I am so relieved that all is well. (Well, it isn't really, but you know what I mean.) My husband was also like that about medications, so I had to sneak them into him.
I see that now there is another part, which I'll look forward to reading in the morning.
bhv - I'm glad to hear you've found a place you like & are considering it. I agree with Charlotte - place him for respite - it will make a difference in your life. The decision to place my husband in a private residence was easier for me to make after he'd been in respite. That was a turning point for me. The respite residence he went to was not the same as the private one I chose, but that didn't matter. Good luck!
Depakote is one of the meds my wife is on (bvFTD). Without it she is manic and violent. Since starting on Depakote she has always been on a large dosage and currently is at the maximum. Since she was becoming manic after removal of other meds (which were sedating her) a small dose of Topamax has been added with large benefits. Topamax is related to Depakote and can be used in conjunction. So if someone is at maximum Dpakote dosage and there are still problems it is common to add some Topamax. Plus we hope that the Topamax will help her lose the weight she has gained in the past 4 years.
Thanks paulc. I forgot to mention how Infelt after reading the side effects of depakote. I mean, really, people prescribe this for migrainea? There are several potentially fatal side effects and several that are irreversible if they occur. I almost didn't give it to him, but then realized that a potentially fatal side effect would not necessarily be considered a bad thing in alzheimers world.
Keep in mind that many listed side effects might be very rare. I know of some where the doctor gave the warning and said “I’ve don’t know of any cases where that happened.” And with dementia we take some risks to get certain benefits.
I know people with difficult to treat migraines. They will gladly take risks if the med will relieve them of the migraine.
Hi bhv, I'm so glad you are getting some relief from the constant caregiving. When you're constantly "on duty," often all you can manage to do is survive for another day. It's almost impossible to plan, much less to think creatively about how to solve problems.
It is much calmer and no longer aggressive. Follow up was good with the Geriatric Psychiatrist at VA on Monday. Disappointing that we.have to get blood work done every 3-4 months and then see her. That's way more exposure to doctors than I like. But will see how it goes. Left paperwork with her to file for "catastrophcally disabled veteran". Had a.bit of trouble finding out how to file it. Hope this works. Met the Social Worker I had only talked with on the phone. She is really nice and doesnt give up. Glad she is on our team. They are happier with his behavior at day care. But when I pick him up he is most often waiting in the nurses office so he can see me as soon as I walk in the door. But when I ask how his day was , he thinks about it for awhile and then says it was good or nice or funny. They say even if he just watches what's going on, it is a form of participation. They think it is good for him, but they still assign a person to keep an eye on him every day.
I am having trouble with the day care process. Thinking of quitting it. At the beginning they wouldnt let him on their bus. I've been driving. It works out to 2 hours on the road every day. Sometimes I can combine with errands, but it really is out of the way for everything. Spending more time and money at gas station. Setting alarm to get up early. Getting him all cleaned up first thing in the morning so they don't complain about "personal hygiene issues". I have to pick him up earlier than they said originally since he gets agitated. By the time I get him home now I end up taking a nap. I never liked being in traffic jams. Claustrophobic. I have been retired for years. I am now pretty much unable to calm myself down when caught in a jam with him.
I am going to talk with them tomorrow about the bus. May also be able to apply for Dial a.Ride. But have to see a.doctor for that application and you have to be within 1/4 mile of a traditional bus route. So I'd have to meet the Dial a Ride somewhere. Trying to figure out the closest safe place. Another pain in the neck.
Am.seriously thinking of just quitting the day care. Today I felt more stressed out than I have ever felt, except in Monday's traffic jam, and it was becase of the day.care! We haven't had diarrhea all month. I can leave him alone for short periods. I could start getting him to go for a walk in the morning. And try planning day trips together.
Bhv, Bonnie. I want to recommend that you don't drop the daycare program for a number of reasons.
You already have a process in place. Iit can take time to reestablish involvement back in the program when you find you really really need it.Situations change quickly as everyone in caregiving knows - and there will come a time when it is imperative that he be in a safe place because you really need to be in another place. You will be able to do that because of daycare.
Two, he is willing to go. Routine is good for both him and you. I will tell you the truth. I never really cared what my partner was "getting out of it". It truly was irrelevant to the equation. We were both getting space from each other which we both needed. I seem to remember you talking about him shadowing you all the time. Now there are times when he is not doing that because of daycare. There are times in your day now when hypervigilence is not required. Less burnout.
Three, while transportation may be a pain in the neck now it seems to me your current arrangement is not necessarily a long term one. Maybe they can pick him up if that is the time of day that he is calmest. Then you can pick him up at the end of the day. That might cut the demands on you by one half. Or maybe you can find another solution like the dial-a-ride. I personally liked picking her up because I didn't have to worry about missing the transport van when she came home because of a traffic delay or something.
Four, you have both witnesses and support for what you are going through. Their input and experience can help with balancing the meds, and suggesting new approaches or resources. Like on this page you can decide whether their input is helpful to your immediate situation or not.
I know rush hour can be a pain in the butt. I usually stream music when I am in that situation and apply the mantra "You are retired. You don't have to be anywhere at any given time. Breathe in. Breathe out." It works some for me.
As always I'm wishing you the best. And am encouraging you not to be too impulsive in this decision. Daycare is what saw me safely through with both my mother and then my partner. If you need a rest, meet me at the virtual cottage on the lake. We can eat wild strawberries.
I agree. I would also definitely investigate the dial a ride. That is who pics up my husband. When The Arc took it over the drivers were much better. Since they deal with people with all sorts of problems I feel they are a lot more understanding. this morning when the driver I love arrived, he did his normal of getting out and loudly asking 'can Art come out and play?". As he was leaving he said "I'll bring him back". I answered: don't hurry and he gave me a thumbs up!
I checked mileage to some places I might meet one of the buses. Not much help. Today I went grocery shopping. The first time it was so luxurious to shop and put things away alone. Today I was so stressed out once again and had difficulty calming myself down. I am paying $60 a day and driving 50 miles for the privilege. When I picked him up I talked a bit with the social.worker and decided to try two days a.week next week.
Also asked what the nurses thought of the current situation. At first with the depakote they didn't need the haldol But today she said there is only one left. She gave one at 10:30 today. Also today he peed in a trash can in an unoccupied room. I have been concerned they are having someone watch him individually. SW says that is no problem. It is part of their mandate. If they needed to they'd have to hire more staff. They aren't charging me extra for that, but I am private pay so that's probably more money anyway.
Next week I will take him shopping with me and see how that stress level compares. I think it will.be less. And that would be another day without the haldol for him.
I continue to be astonished at how different things are now that he is not threatening me all the time. I have been getting him to go for a walk with me every few days. He walks slowly and lags behind but he has been a trooper. He is very tired when we finish.
Today he came out to find me in the field. When I asked what's up, he said he wanted to see me and he loves me. Before, that would have just made me laugh. Now it seemed nice. I am still wary though.
Hey Wolf, I remember several conversations about treating caregiving like a job. Sometimes this worked for me, but when he was being so threatening and aggressive it didn't help much. Recently I toured a MC place and observed some of the workers there. With the new relaxed environment here at home I find myself acting more like the caregivers at that MC place. I am MUCH nicer. Sometimes.
This week I took him to Day Care two days only. Tues I played golf by myself. No one behind me so I played two balls on each hole. Scored very well for my situation. Happy with my progress. Nice playing alone. Quiet. Wed I did some house cleaning. Felt pretty stupid paying someone to watch him so I could vacuum in peace. But didn't know what else to do. Thurs I took him grocery shopping with me and a few other errands. It went ok. Usually the big problem was putting stuff away. He would undo everything and make me crazy. I turned on the tv and he stayed in there! So it was a better day without driving the extra 50-60 miles to and from day care.