I took my brother out tonight to Dunkin Donuts. It was not our usual routing. I took him out by myself, and an evening earlier in the week because my husband and I are busy tmorrow night. My husband had a work event tonite, so he didn't come.
This time, I ate at home first. I was really hungry, and preferred to eat something healthier than I could get a Panera, which is where we usually go Wednesday nights. WE both had coffees (I was super tired and afraid of falling asleep as I drove back to my house) and to my surprise, my brother ordered a donut. He wouldn't pick it out, he made me do it.
He started talking about the different nursing homes he had stayed in and started sayiing how much better the previous homes had been. I asked him why he thought that way, and said I thought he would have been dead by now if he has stayed at them, that they had all almost killed him several times through neglect. He said the other nursing homes had been better about showers (which may be true), but I said I was surprised he said t hat because at least they shaved him at his present home.
Lately he has been voicing more discontent. I think he is suffering from not having people to talk to. As he puts it, all the patients at the nursing home are senile and can't converse decently. I want to remind the reader that my brother's intelligence is uneven, he can be quite articulate about certain things and then can be tongue tied and stopped in his tracks when he wants to speak, especially about emotions and any kind of interaction. It is very difficulty to keep up any kind of conversation with him.
But he said something that really caught my attention. He said that the way to survive a nursing home is to not care. That's what he said "not care". I knew immediately what he meant and it made me feel badly for him.
I am fortunate that he, up to now, has not gotten irritable about being placed in a nursing home. In fact, when I drop him off, he usually says something jovial to the receptionist, like, as he said tonight,"oh well, back to reality".
this is a diary of a sister/sibling who is caretaking her brother who is developmentally disabled and who also has cerebral palsy. Others are invited to post and comment about their own situations as well.
Tuesday, April 26, 2016
Wednesday, February 3, 2016
hearing aid and other maladies
A couple of weeks ago, I was woken up by the nursing home at 4:20, to let me know that my brother had a head cold, had thrown up, and that his temperature had been over 103, but had gone back down after receiving aspirin. I asked what his blood pressue was and it was 101 over something. Anything under 100 is cause for alarm and we start thinking of sending him to the emergency room. However, he seemed better and I reminded the staff to give him a lot of fluids so he wouldn't get dehydrated and go into bad afib.
Of course, I couldn't sleep, and got up and went to work. After work, I went to the nursing home and found him curled up in a fetal position in his bed, sleeping. They raise one half of his bed so he doesn't choke on his vomit, and rather than sleeping that way, he chooses to curl up.
I immediately asked his nurse to take his vitals. I woke him up and he asked me to stay with him. His blood pressure was under 100, and the nurse came in to get him to drink, some water, which he had refused earlier. He turned off the light, and asked me to say with him, which I did, sitting in the dark for the next hour. His breathing seemed labored, so I asked a CNT to take his vitals again and his blood pressure had gone up to a more normal level, so I left.
I called the next morning and asked that the nurse practitioner see him. She herself was home with the stomach flu but got a colleague to see him. I went back that night to see him, and although he was very congested, he felt a lot better, and I was very relieved.
A couple of days later, my husband and I took him out for dinner and his cough was very, very bad. The next morning I called the nurse practicioner again and asker her to listen to his lungs, that I was worried he was developing pneumonia. She orderd him antibiotics, and since then he seems to slowly be on the mend. However, he hasn't been moving around a lot and seems very weak, and his balance is off. I know I need to get over there and get him moving to rebuild up his strength, but I haven't done a very good job of doing that. The weather has been wet and I am reluctant to keep him outside for very long, just to get him in and out of the car so we can go out to eat. He has been stuck inside for at least two weeks because of his cold.
Meanwhile his hearing aid has gone on the fritz twice in the last two weeks. The first time was because it needed a cleaning. The second time was today, and the issue was the nurse who put in the battery didn't check to see if all the adhesive from the orange tape that comes with the battery had been scraped off. Cleaning the hearing aid and watching that the battery is accurately inserted are simple tasks, and it infuriates me that I can't get the nursing home to deliver on it. My brother becomes very isolated, and very crabby, when he can't hear. It makes me feel this is just one more reason why I can't leave town for more that a week and a half at a time.
Of course, I couldn't sleep, and got up and went to work. After work, I went to the nursing home and found him curled up in a fetal position in his bed, sleeping. They raise one half of his bed so he doesn't choke on his vomit, and rather than sleeping that way, he chooses to curl up.
I immediately asked his nurse to take his vitals. I woke him up and he asked me to stay with him. His blood pressure was under 100, and the nurse came in to get him to drink, some water, which he had refused earlier. He turned off the light, and asked me to say with him, which I did, sitting in the dark for the next hour. His breathing seemed labored, so I asked a CNT to take his vitals again and his blood pressure had gone up to a more normal level, so I left.
I called the next morning and asked that the nurse practitioner see him. She herself was home with the stomach flu but got a colleague to see him. I went back that night to see him, and although he was very congested, he felt a lot better, and I was very relieved.
A couple of days later, my husband and I took him out for dinner and his cough was very, very bad. The next morning I called the nurse practicioner again and asker her to listen to his lungs, that I was worried he was developing pneumonia. She orderd him antibiotics, and since then he seems to slowly be on the mend. However, he hasn't been moving around a lot and seems very weak, and his balance is off. I know I need to get over there and get him moving to rebuild up his strength, but I haven't done a very good job of doing that. The weather has been wet and I am reluctant to keep him outside for very long, just to get him in and out of the car so we can go out to eat. He has been stuck inside for at least two weeks because of his cold.
Meanwhile his hearing aid has gone on the fritz twice in the last two weeks. The first time was because it needed a cleaning. The second time was today, and the issue was the nurse who put in the battery didn't check to see if all the adhesive from the orange tape that comes with the battery had been scraped off. Cleaning the hearing aid and watching that the battery is accurately inserted are simple tasks, and it infuriates me that I can't get the nursing home to deliver on it. My brother becomes very isolated, and very crabby, when he can't hear. It makes me feel this is just one more reason why I can't leave town for more that a week and a half at a time.
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