Mom and I decided the other day that we were going to cut down on the nursing home visits. Today would be the first day we didn't go to see Daddy. Then at about 10:15 I got a call from one of the nurses. She told me that Daddy had been combative during the morning and had struck out at her. (She assured me that this happens with dementia patients all the time, though I felt bad that it happened with Daddy). This is the second time this has happened in about a week. Last Sunday evening we got a call about the same thing and we headed over there to sit with him for a few hours because the evening nurse thought it might help calm him down. It did, but we obviously can't run to the nursing home every time something like this happens. The nurse this morning told me that they ended up giving him some medication and had him stretched out on his bed to hopefully sleep. She didn't think it would be a good idea for my Mom to see him like this and was relieved when I told her we hadn't planned to come for a visit today.
This type of thing has never happened with Dad before. While he was still at home he would occasionally become agitated and shake his fists when he was unable to get a thought out, or would get irritated about something. But for the last week or so he has become noticeably more irritated and grouchy.
I apologized to the nurse (a really great girl) but she brushed it aside, saying that this is just a part of certain types of dementia, and told her to call me if she needed anything. I told her that I really didn't know what was going on with Daddy, that he'd never done this type of thing before, and that I didn't know if something was bothering him or if it was just the progression of the dementia. She felt that it is just his dementia progressing, that individuals get this way as they go along, and that she was afraid of him hurting himself, not someone else.
This is distressing. I'm not sure whether I should burden my Mom with this, as the nurse didn't seem to want to. But it just hurts very deep inside me that Dad is going through this. Yesterday when we visited he didn't want to talk, was very restless, sat staring into space with no expression on his face, told Mom to leave him alone when she rubbed his shoulder, didn't want the hospice aide to shower him.
Is anyone else going through this with their loved one? I'd really like to know that we're not the only ones going through this (though I know we're not). Things just seem to be piling up at a more rapid rate suddenly. Its difficult to know which way to turn and what to do....
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Alzheimers patients have the ability to read body language and voice inflections long into their illness.
They will still feel frustration, anger, loss, happiness, sadness, joy and love
BUT…they lose the ability to channel those feelings productively due to their brain.
A change in Environment is devastating, heightens behavior problems, disrupts sleeping, eating and toileting problems also impacting greatly on the caretaker.
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twopupsmom -- Its so good to hear from you. Is your husband in the transition nursing home BECAUSE he became combative? I'm so sorry. Dad just got to the point where he couldn't be taken care of at home anymore. His sundowning (if you could call it that) was beginning earlier and earlier in the afternoon -- had crept up to about 5:00 PM, then gradually began starting in the earlier afternoon, around 2:00 PM. His neuro added a dose of Seroquel for the late afternoon, but Dad fought it so hard that it didn't help at all. He would be up and at it, wandering around the house, pacing, saying he needed someone to take him to work, or he needed to call someone, searching the house for certain things that didn't exist, etc. He wandered and paced for hours until he was so tired and stooped that his hands almost touched the ground. His appetite was diminishing (and still is). Mom was getting to the point where she couldn't toilet him because he wouldn't move or sit on the toilet. I know he was beginning to have this agitation and grumpiness before we moved him to the nursing home; but maybe we didn't "bug him" (as he calls it) so much then because he was at home and we didn't feel we had to try to get a response out of him. I just think we see it more now than we did when he was at home because we were around him all the time. I'm sure he IS miffed at us at some level; but when Mom told him we'd have to move him to a nursing home so he could be taken care of, he told her he understood and said he was surprised she'd been able to take care of him as long as she did. That was in one of his more lucid moments (few and far between now) and I know he doesn't remember it, so yes, he's mad because he is where he is and we put him there. The nursing home isn't aggressive, doesn't use restraints, the people are good to him, he gets wonderful meals, etc. The first time he became combative was one week ago today. I think the agitation stemmed from a minor thing that happened. Dad was apparently sleeping when his roommate's wheelchair/bed alarm went off (one of those things that's attached to the patient and the wheelchair so that if he falls or tries to get up it becomes disconnected and an alarm goes off). The nurse said that when they went in to take care of the roommate, Dad came out of the door ramrod straight and staring with wide eyes. While Mom and I were sitting with him later he kept talking about the MPs coming to get him, an ambulance, spotlights (car headlights he was seeing through the window) hostages being held somewhere, etc. The alarm had to have set him off. Dad has been taking all the same meds as he did at home with a couple of exceptions. He was given Trazodone for several nights to calm him and help him sleep, but it didn't work. He continued to roam the nursing home halls. He's now being given a combination in gel form when he gets extremely agitated. I don't know how this is working out yet. I think the problem is composed of several things -- the move itself, possibly some side effects from the new med, and the progression of the disease. I believe it was beginning to progress more quickly at home, but the move exacerbated it. I also believe there will be no more "plateaus". He is getting worse and I don't think he'll be with us at this time next year. I'll keep you in my thoughts as you work to bring your husband home. I hope that works out for you in a positive way.
Veronica91 -- Thanks for your kind thoughts. I'm sure they're trying to work out what meds will work for him for the combativeness and agitation. I'm sure we'll be talking with a number of people from hospice during the week, as we have every week. The hospice nurse visits him quite frequently and I'm sure is seeing what is going on with him. We usually run into her as she's coming in and we're leaving, so we'll speak with her soon. The chaplain is also stopping by to visit Mom this week at home; she stopped by the nursing home while we were there this past week also. I know that the disease is progressing and that Dad can't control it. That doesn't make it any better, if you know what I mean! Thanks again for your input.
It sounds as though he is in a good place with very compassionate and experienced staff
It is really hard to watch someone who you have known all your life turn into someone you don't know. Why not have a talk with the hospice social worker so that she can reassure you that what you are seeing is part of the disease and nothing your Dad can control. it is OK if either you or your Mom find it too painful to visit Dad often this is perfectly natural and not a failing. People handle things in different ways and it does not mean you do not care, rather that you care very much. You absolutely did the right thing to place him where he would be safe and well cared for, you could not risk him harming himself of one of his loved ones when he no longer could control his own actions. All you can do is keep on loving him.