My inlaws are becoming an almost daily part of my life now. Not a day goes by now that either I am making a call to MIL, to the group home, or taking one from the caretakers of FIL, or MIL is calling me. There are 2 sons. Does anyone call them? Nope - they call me. Why? I would like to think it because I understand as a nurse what the inlaws are going through and know what is going on. The boys don't. Reality is probably that the sons (like most men) hand over things like this to females. They just don't want to be bothered.
Yesterday I got a phone call from the caretakers for FIL. He was going back into sundown syndrome really bad - just as he did the end of December when we had to commit him. Since we brought him home from his latest hospital visit, every day between 3 and 4pm, FIL's dementia kicks into overdrive and he turns into this angry defensive male. He thinks all food that is being cooked for him is poisoned by the Germans (his caretakers are Polish), so he won't eat. He also believes he is being held as a prisoner of war by the Germans and his German wife turned him in and did this to him. He can't be talked out of it, just recites that he is a citizen of the US and his dog tag numbers (funny the things they remember after 60 years yet can't remember our names). He gets angry the more you try to reason with him. When he gets like this, we just tell the caretakers to keep him separated from the others in the group home and stay away from him but keep him where they can see him. He actually eventually goes to his room and sleeps fully clothed. This again starts about 3-4pm and he usually ends up going to bed around 9-10pm. I have the caretakers try calming music, calming tv shows, and now we are on just plain quiet. What is even more strange is when he wakes up around 6-7am, he is a pleasant, cheerful, and very cooperative, sweet and appreciative man who eats every bit of food put in front of him and has no memory of what transpired the night before or why he slept in his clothes and not his pajamas. But his memory is about 2-3 minutes anyway. He had been on a high dose of an anti-psychotic medication called Seroquel. It has a lot of side effects especially for the elderly with dementia. He was put on it to control the anger issues with the post traumatic stress syndrome he had started going through with the progression of the dementia. He suppressed his WWII memories for so long that they have popped up now for us to deal with. We have actually learned a lot about what he went through. We have been slowly decreasing the dosage to see the lowest possible dose we can stabilize him on. Obviously this last decrease didn't work.
I posted the image above to show you that to you and me, the picture gives us a sense of beauty with the ending of the day. For those with sundown syndrome, the sun going down causes anxiety, behavior problems, moderate to severe agitation, and aggressiveness when confronted. It is a strange syndrome. For a patient with sundown syndrome, that picture depicts their need to 'go home'. They can't wrap their minds around the fact that they are already home.
As I said earlier, sundown syndrome begins in the early to mid afternoon and actually worsens over the span of the evening, resulting in increasing of symptoms of agitation and hyperactivity. It is treated with behavior management (calming environment, no aggressiveness shown to them, and appropriate medical intervention as needed. Common symptoms are: rapid mood changes, anger, crying, agitation, pacing, fear, hallucinations, hiding things, paranoia, violence, and wandering. At my FIL's group home, all 5 patients have dementia. There are motion detectors everywhere. There are 2 caretakers and one is always awake and up with the patients. They also have bed alarms on their bed.
No one is exactly sure what causes this. Some say that it is a result from brain disease, others say it is caused by a severe clinical depression, and still others say that is is just over stimulation as people with dementia or Alzheimers tire more easily and get over stimulated with the demands on their thinking ability.
In severe cases as my FIL, their behavior will progress to violence. Others will pack up all their clothes and wait to be picked up, or just pace with no apparent place to go but they can't stop as they feel the need to go, or actually wander off. Just in the Chicago area, there have been 14 cases this winter of dementia or Alzheimer patients wandering off and freezing to death. One was in a dementia home and the door alarm went off but no nurse went to check on the alarm. That lady died too.
Since every person is different, one should be careful putting their loved ones, especially dementia or Alzheimer patients, into nursing homes where there is 1 nurse per 20+ patients. This is why I looked for a small group home. There is also less stimulation in the smaller group home. Music, concerts, Animal Planet, game shows - calming activities are done throughout the day. Their largest meal is served at noon so if they don't eat at supper, they got a big breakfast and big lunch. Fluids are offered often and in small doses.
In my FIL's case, I made a cork board of all of us with our names under each picture. On the other side of the cork board is a melamine board his name, today's date, and a note to look in his pocket. I laminated a piece of paper to state that we all know he is there and he has to stay there until he gets better and we will visit him often. The caretakers put it in his pocket daily. It does help the repeating questions but it does not help the sundown syndrome.
For this latest episode, we had to up his medications. So in the meantime, someone sits with him while he is going through this. There is nothing we can do but wait for the medication to kick in. Hopefully in a few days, he will be back to what he was before this last hospital visit and we can take him out to lunch for his wife's birthday this weekend.
But it is a constant struggle. Getting old sucks.
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