Last spring my good friend of 35 years asked if I would be interested in working part-time for her dad. His wife died 10 years ago and he had gotten to the point he needed someone to clean the house, cook and freeze meals and fill his medication box each week. He was confused and recently diagnosed with dementia. It was early stage and he did alright with just a little help.
We had a fun summer, laughing a lot about the things his daughter and I got up to when we were teens. I got to know him on a completely different level than ever before and realized this man is really fun, I grew to love him like my own father.
I could tell his confusion was getting worse and kept his daughters informed on how he was doing. The last day I was here part-time, I sent a message to both his daughters.. Dad is extremely confused today. I'm concerned about him being alone over the weekend so one or both of you should check in with him. That Sunday I got a message saying his younger daughter had not been able to reach him by phone & thought his phone was off the hook again. She came over and found him undressed and incoherent. She called 911 and he was admitted to the hospital.
He didn't improve, if anything he got worse. He got agitated, then angry, then violent while in the hospital. When it was time for him to be released, they couldn't find a rehab center willing to take him because he had needed to be restrained once in the hospital.
That's when I came back into the picture. Would I be willing to be his full-time caregiver? Well yes, I care deeply about him and he can't be alone. He was released on Saturday and I moved in on Sunday. The first 3 days were fine. I cooked, cleaned, made sure he took his meds and was just here if he needed anything.
On day 4 he lost control of his bowels. This was something that had never happened before and we were at a loss as to why. This went on for almost a week before we realized he had a fecal impaction. For a week I was the only one who was here to help him. He was just aware enough to be embarrassed, I did anything I could to let him know I understood, but can only imagine how this must have made him feel and I didn't mind cleaning him up. Yesterday he was finally able to clear his bowels and that thankfully hasn't been a problem since.
The problem is, I'm not a trained caregiver. I was a CNA in my 20's and though I do remember much of it, I don't remember everything from 30 years ago. He has now started spitting his medicine out each time we try. He has sundowners syndrome, so my initial thoughts were give him his pills before the sun goes down. Up until today he has always taken his morning meds without issue. But today he spit those too. I can't force him to take them, and knowing he did get violent in the hospital, I don't want to do anything that might make him more agitated, leading him to that possible outcome again. I tried hiding them in his favorite ice cream, but he wasn't even a little interested.
Both his daughters work full time, one has kids of her own and the other has a husband with mental health issues. They're busy with full lives and I get that. But I do feel like I was just dropped into the fire with a good luck and little else. I truly want to help him, but I feel like I need a crash course in being a caregiver to a dementia patient.
Right now my biggest problem is how to get him to take his meds.
In the short term, I recommend a little research to determine what is the impact of not taking his medications. Skipping a dose or two of some meds doesn't have an immediate impact while skipping even one dose of others has an immediate increased risk of stroke or heart attack. Then I would prioritize getting him to take the important medications and not push so much for the others.
Next, I suggest finding a time when your patient is calm and relatively complaint more than a schedule for taking his medications. Some people are easier after breakfast and a cup of coffee. If your habit has been presenting morning meds before breakfast rather than after, a simple change may have a big impact. Many meds need to be given about the same number of hours between doses, not necessarily morning and bedtime.
Music, talking about something assuming or visible in the yard relaxes many dementia patients. If you can find something that works consistently, it can be very helpful for any task that needs cooperation.
Good Luck!
As long as you’re around to clean the poop, keep him calm, and do all the dirty work... they’ll just leave it all to you. Out of sight, out of mind. Either they don’t realize how much he has declined, or they do and just don’t care much.
Maybe apple sauce or encouraging him with rewards?
Did they figure out why he had such a sudden decline and have they addressed that?
His daughters need to realize that you can not do 24/7 with no help. You won't last as a caregiver because it will burn you out. Hopefully you are being paid accordingly and they are paying you legally so your social security is being contributed to. I know you didn't ask about that, but it sounds like they are taking advantage of you and you matter in this situation as much as anyone else.
The crazy thing with sundowning is it can happen anytime of the day. So keep an eye on when he starts and if there are triggers. I recommend a midmorning nap, I think it helps to keep them from becoming overly tired, just like a baby. Short time span of energy, smaller meals more frequently, like fix a sandwich and feed him quarters throughout the day.
You are in a tough situation and you need to make it clear to his daughters that you are not plan A, B and C. They need to provide help and time off for you for your wellbeing.
Hugs! We all wish we had a friend like you.
Speak to his family & voice your concerns!
All the best