Bad night-Need to vent, share my solutions & discuss options.

SDianeL · September 2023

*****UPDATE*****: Another episode last night. He got up, went to the bathroom, then went into the living room and I found him laying on the sofa. It was 6:40AM. I said come back to bed and he said no! Leave me alone. I said it's not time to get up yet, let's go back to bed and he said "where?" So he didn't know how to get back to the bedroom. He went back to bed and thankfully went back to sleep until 10am this morning. Going to try putting furniture in the little hallway so hopefully it will guide him to the bathroom and back. I remember a post that said use green painter's tape?? I'll see if I can find that. I already have lights in the bedroom, hallway and bathroom. Anyone use gates?? It would have to be tall enough so he wouldn't topple over it. So tired today.

My DH, 78, diagnosed 2 years ago, recent changed diagnosis not good: Rare ALZ-Posterior Cortical Atrophy. He's Stage 4 on the ALZ-PCA staging which is Stage 5 on the ALZ Dementia Staging. He's been angry & agitated & is on 1/2 tab Risperidone am & pm which is not helping. He's also been very depressed lately saying he doesn't like himself and he wants to be his "old" self. 😪

I sent a message to his Geri Psychiatrist to call me next week.

Last night I got up at 3am to take something for pain. My DH got up to go to the bathroom, came into the kitchen instead & went to the front door of our apartment & tried to open it! I said where are you going? don't open the door! He didn't respond. It was like he didn't even know I was there. Like he was sleep walking. Before I got to him & the door, he had opened it and was going outside to use the bathroom. I calmly said the bathroom is this way and he got so angry and started yelling at me insisting he was going out even trying to push me out of his way. I got between him & the door and pointed the way to the bathroom. He was totally lost & confused. Finally got him pointed in the right direction. After he used the toilet, instead of going back to bed he went & sat in his chair but didn't say anything. I said let's go back to bed now, he yelled at me again. So I just waited. After about 10 minutes, he said "I'm going back to bed" and stood up but had no idea where the bedroom was. We're in an 840 sq. ft 1 bedroom apartment. I took his hand & said I would take him there. He went with me & got back in bed & went right to sleep. Of course I was up all night crying. 😪

Today I ordered locks for our front door so he can't get out. I also ordered a monitor to wake me if he gets out of bed. I ordered a waterproof mattress cover since the next stage will more than likely bring incontinence. I knew this was coming but it's still devastating when it happens.

I am so afraid that his anger and yelling will cause neighbors to complain & the apartment complex will ask us to leave. I haven't told them he has ALZ yet. Maybe now I should. If I can't get the Geriatric Psychiatrist to give him something to help calm him, I may have no choice but to look into MC facilities sooner that later. Should I get on the waiting list for a MC facility?? Should I call Caregiver Support at the VA and see what they say? I am devastated and feel so helpless.

Jgirl57 · September 2023

I am so sorry you had a restless night. I know that is when I am at my worst when I am exhausted. Yes, the door lock is the immediate priority . With all the not so fun options you are facing , makes it a tough decision . See what response you get from the Geri psych and then see what help you can get from VA if you have already identified them as a resource . I hope a nap is in your plans for today . Hugs to you .

White Crane · September 2023

Dear SDianeL, I'm sorry you had such a bad night. I know how rough that is. Two of my recent threads have been about rough nights. It's so hard when they are not really asleep and not really awake either. It's hard to communicate with them. And in the middle of the night, if you're like me, you're not at your best. It's frustrating and scary at the same time. Installing a new lock should help keep him from leaving. Our son recently had a new lock installed for us and it has helped a lot. I hope you hear back from the geri-psych tomorrow and get the medication help he needs. Until then, please try to get some rest. I know this is hard but everyone on this forum is here with you and for you. Sending hugs.

Brenda

ImMaggieMae · September 2023

I’m sorry you and he had such an awful night. The door lock and alarm are a good idea. Perhaps his Geri. Psych will increase his medication to help calm him. They typically start medications at a lower dosage and increase them gradually if needed. Caregiver Support at the VA may have some suggestions as well. All of these changes feel devastating when they happen but somehow we find ways of dealing with them. This forum has been a tremendous help to me. Everyone with the disease is so different so there are a lot of different ideas here about dealing with problems as they arise.

Denise1847 · September 2023

I am so sorry. That is a terrible experience and I totally understand your fears. I am not there yet, but my suggestions would be to call the doctor and tell him what happened and get meds for the behavior. The locks and alarm, as well as the VA. You see, you do have the answers and you do know what you are doing. I hope the doctor will get you the meds your DH needs. I would definitely tell the people in the building about the alzheimers so that they can be more understanding.

Ed1937 · September 2023

I also think the neighbors should know. Most people are very understanding when they know there is a problem like that.

I wouldn't automatically say this is progression. I'd be asking if it might be due to a UTI or possibly another infection. It could be, and they're easy to check for. I'm sorry you had to deal with that, but hope you soon find a solution one way or another.

gampiano · September 2023

SDianeL,

I am so sorry.. Your experience last night mirrors mine almost exactly, even to the hour. We live in a house, in a rural setting, but I have lived in apartment buildings for much of my life so I appreciate your concern and worry about the noise. Hopefully we can find the appropriate medication for our spouses. I'm picking up Seraquel tomorrow and praying that it will give us both a good night's sleep. The bathroom issue is driving me crazy, and i have lost my patience when sleep deprived, as you have. Once the outbursts begin, we have to be the ones to de escalate, and keep quiet. (im terrible at this, but learning that silence after the episode is the way to go.)

I would mention your husband's condition to your neighbors. Most people are sympathetic and even helpful at times. You are doing the right things, and getting the waterproof mattress cover is a must, Also, layering the bed so that you don't have to re make everything at 3:am. There are several threads on how to do this. It saved me from having a complete meltdown most recently.

Ed is right about checking for UTI. I find that my DH behaviors and hostility are magnified during these infections, big time.

Meanwhile, as much as i don't want to, I'm napping when my husband falls asleep in his chair during the day. Hope you can catch up on some sleep as well. It's probably the most important component for us at this point.

Sending you a very big hug,

Maureen

gampiano · September 2023

Diane,

I forgot to mention the VA. You have a lot of resources available to you as a caregiver, as your husband is a combat veteran. BY ALL MEANS reach out to caregiver support. Keep us posted on your progress there. I wish you a better day today, and a peaceful night tonight. We are trying th new med tonight. It could be great, or it could make things worse. I'm gearing up for the latter.

Sending hugs,

Maureen

SDianeL · September 2023

https://alzconnected.org/discussion/comment/183486#Comment_183486

thank you Maureen. The VA Caregiver Support contact has been very helpful. Can't say the same for the Neurologist. We have a new Geri Psychiatrist that we saw one time. I have a message in to her but she was out last week. I'll call Caregiver Support to see what they say. I don't really know what they are supposed to do. I took their training and got approved for respite care and they come and check on us quarterly but the last person that came last week seemed to only want to get her "checklist" done. She really didn't offer any help. Also the problem is that when we see the doctors or Caregiver Support it's always with my DH there and he gets so upset when I try to discuss his behaviors wit them, and he contradicts what I tell him.

toolbeltexpert · September 2023

Sdianel

I did the locks, mattress protector , cameras. But in the end it didn't stop the inevitable of " I couldn't do it anymore." Only you know what's right. My wife has been in the same room at a mcf for a yr and still can't find the bathroom, she walks right by it and at times no recognition of the instruction she gets.

I know your doing a great job and I hope you can get the help you need for you both.

Stewart

Drapper · September 2023

If your husband gets upset when you discuss his behaviors in front of him, give them a note to read regarding situation. I do this with my DH neurologist and it has proven to be very helpful. Dr told me she finds it very helpful.

gampiano · September 2023

HI again, Diane,

Most recent;ly I have been documenting some of my husbands behaviors and sending them through secure messaging to the VA doc. This is usually read by the nurse, who always replies and sends the message on to the physician.

Also, I cant remember if you have tried a day program for your guy. Mine lasted only a few months, but it was great to have that time to myself.

What we really need is a BREAK from care giving. I hired an aide to stay with my DH for a few hours on a sunday so i can get out by myself. I usually just go to a park or a library and sit in peace. Is this possible for you? Also, MEALS ON WHEELS! what a blessing that is, and at no or very little cost. I resisted this for 3 years and finally signed on last month. Its a gift. Give it to yourself...

Maureen

SDianeL · September 2023

https://alzconnected.org/discussion/comment/183522#Comment_183522

thanks. I do use secure messaging. I could use day program but MY DH still is very aware of what's going on and is not incontinent. He would hate it and I can't do that yet. I do have respite care through the VA which has been a life saver. Originally I used it every week but have cut back to every other week. On that afternoon I go visit my sweet sister who also has dementia. I used the respite care to catch up on all my doctor appointments and now I don't have anywhere to go. I need to work on that. Maybe a book store with a coffee shop? thanks for the Meals on Wheels tip. He's not able to identify certain foods and he no longer likes many foods so it's a real challenge. We're down to 2 breakfasts that he will eat. We only twice a day, a late breakfast & early dinner and so far I'm managing that OK but will keep Meals on Wheels in mind.

Bad night-Need to vent, share my solutions & discuss options.

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