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.

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I'm not going to say much about getting respite care or talking to the daughters about getting their father placed in proper LTC because others have already addressed those issues. Please know I fully endorse seeing your patient placed in appropriate LTC.

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!
Helpful Answer (1)

You indeed have been dropped into this and you’re on your own. If the daughters truly wanted to be part of his care, they would have made a way. They put all this on you and walked.

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.
Helpful Answer (1)

Have you tried everything you know to get him to take his meds?

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.
Helpful Answer (2)

I think you are facing a much bigger problem than how to get this man to take his meds. You are not qualified to be a full time care giver for him, and you feel out of your realm and worried. As would I. As should his daughters, busy or not. I'm so sick and tired of hearing about people's 'busy lives' and how they don't have time for their parents, or their grandparents, or whatever other excuse they're making! Give me a break. It's time to have a serious talk with this man's daughters to let them know you cannot continue doing this job. What if he DOES become violent? It seems to me like he needs a SNF for his needs rather than staying at home with a live-in care giver.

Speak to his family & voice your concerns!
All the best
Helpful Answer (4)

Some meds can be crushed and put into food. You need to look them up to see if crushing is ok or ask the pharmacy. (Time release capsules usually cannot be opened but others can.) Then perhaps they could be more or less “hidden” in whatever he’s eating. My mom sometimes refused or spit out her meds. They found that putting them in chocolate ice cream instead of pudding or applesauce (ugh) helped.
Helpful Answer (1)

Although you have very good intentions you are in over your head. You need to talk to the daughters and tell them you cannot manage this on your own. He needs professional help and 24/7 care, which is too much for one person to provide.
Helpful Answer (5)

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