Taking Vacations, Hallucinations, Dealing in General

We just got back from a week’s vacation in Branson, Mo. We had so much fun, but it was difficult leaving my dad at my sister’s house while we were gone. It reminded me so much of the first time I left my son with my parents to go out of town many years ago. Caring for a parent is so weird. We spend so many years being taken care of by our parents, and then everything flip flops and it’s like we have to parent our parents! That’s hard enough but when the parent (my dad, in my case) suffers from dementia, it’s even more difficult since the person is so child-like and helpless.

It was comforting to know that Hospice went to my sister and brother-in-law’s house twice while we were out of town to check on him but my dad was so happy to get home when we returned. Nothing like sleeping in your own bed!! My sister and brother-in-law acknowledged the level of difficulty Jim and I encounter on a day-to-day basis now that we are living with my dad. It was nice to get their appreciation of our efforts.

The week prior to our trip, my dad began having hallucinations. I heard him walking around the house in the middle of the night and to my horror, he was carrying his hat, coat and a flashlight! He said he had been waiting for someone to pick him up and they never showed up, so he was going to leave. He was completely out of touch with reality and it was really scary! I was mainly worried that he would leave the house in the middle of the night and fall, get lost, etc. I called Hospice and told them what was going on and they sent a nurse right out, at 2 in the morning! That was a relief.

They were supposed to have given us a “comfort kit” when my dad was first admitted to the program, but it never got sent. They sent their pharmacy out in the middle of the night, too, and delivered it.  Basically, it contains various medications for different problems that may occur, including Haldol, a medication that addresses the hallucinations, which apparently is a common problem. Nobody really knows what causes these, but the Haldol calmed him down and he went back to bed. That incident made me even more nervous about changing his surroundings by taking him to my sister’s house while we were out of town, but he ultimately did fine over there. He did have one episode of hallucinations while he was at their house and they had to administer the Haldol that night, too.

We have changed things around in the house now so that he can’t get out the door in the night, which is a relief. My dad had some crazy stories – over the course of 12 hours he thought he had been to a party, to a casino, on a boat, at the lake and in the hospital. Even though we were in his house he has lived in for 45 years, he would look around and think he was somewhere else. Have many of you dealt with your caree having hallucinations?

Something I’m finding difficult to deal with is that my dad doesn’t seem to understand (or remember?) about his health situation. He’s always telling me he wants to do this or that “once he gets his strength back”. He kept telling my sister when he was at her house that he was “recuperating”. We just go along with it. It seems like it would be cruel and wrong to remind him that he is dying and is going to get worse, not better. But it’s hearbreaking to hear.

I think the hardest thing right now is not knowing what the future holds. Nobody wants their loved one to suffer. So on the one hand I find myself hoping he doesn’t linger for months in pain and agony, but on the other hand, I don’t want to lose him. Knowing that death is imminent but also knowing we will never be ready for it. Knowing it’s going to get bad, but not knowing how bad, for how long. So I guess I’ll just take it a day at a time, trying to enjoy the good times!

Thanks for listening! I’d love to hear feedback, particularly about hallucinations and what to say about “recuperating”.

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3 Comments on "Taking Vacations, Hallucinations, Dealing in General"

Profile photo of Pegi
Aug 11, 2013

@Cindy, glad you were able to have a vacation and that you sister was able to experience first hand what you live. You are such a good daughter to your Dad; so sorry it has to be so difficult. Was happy to hear you’ve secure your house. My Grampa once got out in the middle of the night, in a snowstorm; wearing his PJ’s and a wool cap got on a bus and was trying to go to his childhood home. Luckily he was returned safely. We recently lost my beloved Mother, and I’m glad you’re considering the imminent. You are one hundred percent right though, you are never ready for the loss. During the months we had to put her in a facility for her safety; she often talked about what she would do when she got better. She knew she was dying; her’s was just 104 yrs and all but the last 5 months good quality. We decided to just play along with “when she came home”, It seemed to give her peace and did no harm. My thoughts and prayers are with you and your family.

Aug 11, 2013

Hi Cindy,

As long as your Dad is safe in your home, I think you all be okay. It appears the Haldol is very beneficial. I hope you will creontinue to encourage him, even though his condition is rapidly declining. I do the same with my caree, when he has an episode that he “has been to Atlanta, and needs to finish a job” or is expected to “jam” with his guitar-playing buddies, I tell him, “Great, that sounds fun!” That seems to calm him down (me too). Hope this helps.

Profile photo of ejourneys
Aug 11, 2013

Hi, Cindy — I’m very glad you were able to take a break, that you got support from your sister and BIL (and from Hospice), and that you have peace of mind with the house being secured.

My partner doesn’t hallucinate per se, but she has delusions as a result of her brain damage. (I’ve been helped by Dr. Xavier Amador’s book I Am Not Sick, I Don’t Need Help! He’s got some great communication tools.) I agree with Pegi and Marilyn — my partner’s been telling me for years that she’s going to go out and get a job and I say, “Okay.” On the other hand, when she tells doctors that she had “brain surgery” in 1982 (which is how she views her CT scans), I let them know that there’s no such thing in her medical record. It’s a balancing act.