New to This - Caregiver (not family - paid)

daizymaizy

Hi everyone!

Let me introduce myself. My name is Jane and I care for a man with Lewy body Dementia. I started working for him just on weekends about 2 1/2 yrs ago. I worked 9-5 on Saturday & Sunday. His daughter hired me, she worked the rest of the week. He did not have any care from 5pm until the next morning at 9 am. That was scary but he refused to have any staff. During the week I worked at a restaurant until 8 pm. There were a lot of nights that I would swing by his house just to check on him as the disease progressed. His daughter and I sometimes found him on the floor when we got here in the morning. Most of the time he was OK - but with Lewy body they will try and act out their dreams and I believe those are the times when he'd have a fall. He still had autonomy and refused extra help. I kept asking his daughter to get guardianship but she never would. He was accusing her of stealing from him and she quit. So now it was just me. She literally left me with all the responsibility. I hired a company and brought someone in on the weekends but with new faces he does not do well and it just made things hectic and a little crazy. I needed just one person and not so many faces coming and going. The daughter didn't continue with taking care of the bills, that even fell into my lap. I asked many times for her to please take care of that because I shouldn't have been doing it. At first he was writing the checks out but as it became harder and harder I would write the checks out and he would sign them. And trust me when I say he was on top of what he was paying! I brought in an old friend of mine and she worked the weekends. This went on for about 6 months and things were going well. I never heard from the daughter unless I contacted because something happened I felt she should know about. She always just said "I trust you". I continued asking her to get guardianship.

I'm sorry this is going to be so long!!

I still continued with dropping in at night here & there but he was doing very well, I think better than he had ever been. Even the neighbors noticed when we went out for walks. They all told him that I must be taking excellent care of him. Until one morning when I came in and found him on the floor. No injuries were noticeable and he was alert and communicating. I called an ambulance (he is wheelchair bound) to check him over. They came and said he seemed to be okay but suggested he go to the ER and get fully checked over. He refused. He was fine all that day and the next morning when the other care-giver came in she said he seemed sore but that was to be expected I thought. Sunday morning she called me and said that he was having a hard time standing and his left arm was bothering him. I immediately got in my car and drove the 45 minutes to work so that I could see for myself. I ended up taking him to the ER because I wanted that arm checked out. We got there around 11 and around 11 that night we got the news he'd broken his arm. They wanted to get it wrapped up and possibly get him into a rehab place. I was beat, I called the daughter and told her she needed to come in (she'd known all day) I had to get home because I had animals to care for yet! Anyway, the next morning she told me that they were going to get him into a rehab but it could take a couple days. I went up and visited him later that night and while I was there a dr came in and took his arm cast off saying that he didn't need it because there was no break. What?! Ok, well then he doesn't need rehab! I call the daughter to let her know the good news. Well .. somehow or another he still ended up in rehab. I visited him as often as I could, at least 3 times a week I would go up and take him lunch or dinner or a treat of some sort. And I still went to his house and collected mail and paid the bills. He was not doing well, he was having a ton of hallucinations and telling some wild stories. He was not himself at all. I didn't even recognize the man. They had him cathed so he wasn't even getting out of the wheelchair for anything until bedtime. Rehab? Right, it was making him lose the ability to get himself out of the chair and up until then he did it all by himself. I kept asking the daughter to get that cath removed and she would ask she said but they never did it. Three weeks in I asked the daughter if I could talk to someone in charge there on her behalf. She said yes and I had that Cath out that very afternoon. I kept telling her that he shouldn't be there and needed to come home. Nothing was being done. Then the daughter stopped talking to me. Upset because I was being paid even though I wasn't working. I continued visiting him and she wasn't visiting much at all they told me. I reached out a couple times with no response. Then a couple weeks later she texted to let me know he was getting out Monday and would need 24 hr care (this was a Thursday) and could I still pick him up and give him a ride home? He was in the rehab for a total of 6-7 weeks. I called my friend to see if she could work 24 hr shifts and she said yes. I called the daughter back and I met her there Monday and they discharged him .. she didn't help me get him into the car, said goodbye as we were walking out. He was very weak. It's a little shy of a year later and I am still here and so is my friend. Just us two. And this has gotten way too long so I will finish my story in another post.

Jane

daizymaizy

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