I've brought this up before but things have gotten worse. Mom is in hospice-dementia and terminal cancer. The dementia is worse than the cancer. Actually her body is a lot better and stronger than when she was at home with me. I visit every day and stay for hours, but by the time 5-6 pm rolls around, she forgot that I came. The other night she called me 3x pleading and crying that I come and pick her up to take her home cause she thought that she was dying and wanted me to be with her. My therapist, sister, and the staff at hospice all said the same thing. Do not jump in the car and come to her aid and comfort her. She is alright. True, but her mental state is suffering tremendously Therapist said that even if I stayed for 12 hours every day she would forget by the next day. But my way of viewing it is that even though she forgot that I came one day, for that time span of several hours that I did spend with her made her soooooo happy with ecstacy that it was well worth it for her, even if she did forget by the afternoon. For that span of time, she was happy beyond words, and that makes ME so very happy. But I would like to hear from you men and women who are CG to see what your opinion/advice is. I told hospice to give her the med [that she's already on-maybe increase the dosage] Lorazapam [anti-anxiety/agitation] meds when she gets like that because she truly suffers emotionally and the med will release her from that suffering. Also, should I jump in the car when she is really crying and pleading for me to come over and comfort her? It kills me to hear her voice like that. We hang up, I put my head in my hands in emotional pain, tears and do not know what to do. Please help!!!????
Something else to think about is the time. Read up on "sundowning". Essentially, as dementia progresses and destroys the brain, the circadian rhythms get scrambled, resulting in confusion. One possible aid for this is melatonin. Melatonin is a neuro-hormone produced in a healthy brain, where it helps regulate circadian rhythm. You can pick up a bottle of melatonin at your local drug store, it's usually in the herbal remedy aisle (I don't know why, as it's not herbal. They get it from the pineal gland of animals...too much info, I know). Talk with her doctor about it. Another possible cause of sundowning might be that 5-6 pm is either meal time, shift change at the facility, or both. The heightened activity confuses her, and she calls you for comfort. Again, it's "I want to feel safe, because I'm confused."
My dad, who has advanced vascular dementia (also called multi-infarct dementia) is on Lorazepam, and while it does decrease a lot of anxiety, he still does the "I want to go home" thing, despite the fact that mom and I care for him in the home he's lived in for over three decades. That's because the dementia has destroyed his brain's ability to process input. What he sees, hears, etc., is gibberish to him. He's confused and wants to feel safe. An increased dosage of Lorazepam won't fix the problem, because it's unfixable. His brain is dying, and you can't revive those dead cells. Again, your mother may not have progressed that far, I'm just sharing my experience.
So, aside from melatonin, what can you do? I can really only think of one "trick" that might help. You say she calls at the same time every day? If she calls every day at 5:00, call her at quarter 'til. Engage her in a conversation about the visit you just had. "Remember earlier today when I was there, and we were talking about...blablabla. That was SO funny!" Don't overwhelm her with details, as it will only add to her confusion. Try to subtly suggest that you have everything under control. You might also say "I'll see you tomorrow!", although that has its own danger. If she dozes off for fifteen minutes, she may think she's slept all night, and wonder where you are.
Well, that's all I've got. It's really not much, despite the fact that it looks like a novel. Hope it helps.
Under these circumstances, I do not see the reason for not jumping in the car and going to comfort her WHEN YOU CAN. I also see no reason to beat yourself up or feel guilty when you cannot. I think there must be more to this picture if your therapist is saying don't go to your mother when she calls. I can understand that Hospice is looking out for your welfare, too, and would discourage you from overextending yourself. Perhaps it would be helpful to sit down with the hospice staff and have a serious conversation about your goals and reasons and their concerns.
You told hospice to give to give her more Lorazapam? For heaven's sake, why aren't they the one's suggesting that to you? My husband is on hospice care now, at home, at that drug is in the comfort kit I was given the first day. Just as I'd use one of the pain medications for physical pain I would certainly use that medication for emotional pain. RichardJ is right that it only treats symptoms. Your mother and my husband are at the end of their lives. They are not going to be cured. Treating the symptoms is the best we can hope for. I certainly am not going to withhold temporary comfort just because it is temporary! And that would also be my reason for going to my loved one when my presence would be comforting.
If you do have a conversation with the hospice staff, I would very much like to hear how it goes.
Mom has lost the concept of time and after lunch she says she didn't eat and is ready for breakfast, vice-versa, etc... Yes, I believe that calling a little bit before she calls me is a wonderful idea. I am going to do that from now on.
Dear bookworm-I'm happy that both you and richardj feel that way about me getting into the car when I can and shouldn't beat myself up or feel guilty when I cannot. Hospice did increase the dosage about two weeks ago from half of one, to one, now Mom is on two pills of Lorazapam. And its only been very recent that her agitation and anxiety increased and that's when I spoke to the charge RN to increase it from 2 pills to two and a half and she said Ok and Mom can even have 3 when they see signs of great agitation and confusion. So they are doing their job.
Hospice gave me materials to read and one of the signs of decline is the advanced agitation, then calmness, then agitation again, etc.. I must read the materials again, but its so hard to pick them up and read them again because then I would have to face reality again. And also you are right when you say to tell her that I'll see you tomorrow, that calms her down a whole lot and she gets relief from that.
I've been in a very sad and depressed state lately. Even sis noticed it in a very worried look at me yesterday when she came over to bring me some food. She is worried about my emotional state I think.
The only earthly relief and comfort I get is from all of you men and women and I thank God for all of you every day and pray for all of you every day.
Thank you my dear friends......