Q: Dear Regina, My dad has dementia and has lived on his own for many years. He is not able to live by himself. He can still do a lot for himself but needs supervision and encouragement to help himself, like eating regularly, and not isolating himself.
We hired 24-hour assistance care for him 4 months ago and he still at times tells the carers to go home or that he needs to go home. He has been in his home for over 40 years. It becomes a big argument and a nightmare getting him to calm down. How can we overcome this? I know it is hard for him to have strangers in his home.
A: Indeed, it is hard to have strangers in your home. Wouldn’t it be hard for you? Imagine people coming in and out of your home telling you what to do: telling you to do things you have done all your life or not being able to understand what the strangers are saying. Are they speaking a foreign language?
It doesn’t matter if the carers are being super kind and patient. They are strangers in your dad’s home. Telling your dad what to do is different than getting him to do it on his terms. The caregivers need to have the approach as a companion/friend-like relationship.
Arguing with your dad about going home is getting you and the caregivers nowhere but exhausted and more frustrated. Figure out the danger of your area and if it is safe for your dad to go out or not. Two tips for this situation: (1) Ask him to tell you about his home and what he likes about it. As he is telling you about his home, you can start guiding him where you want him, and (2) Allow him to go home. Let him figure out how to get home. Say, “Okay, Dad, do you want me to go with you?” More than likely he will say no. Let him go if it is safe. You follow him from a distance and you will be surprised to see how far he will go. Assist him if he needs help; by that time, he will welcome your help if you are subtle.
Many times if you say “okay”, “be careful” or “goodbye”, they open the door, take a few steps and come back. Other times, they will walk the block. Sometimes getting them in a car for a short drive will help, too. It is tiring at times to do all the things we can to help the comfort of a person living with dementia and this is one of the things that wear on a person; therefore, it is really important to have respite relief.
Q: Dear Miss Regina, My sister has Alzheimer’s and her doctor has lots of tablets for her and I am not sure what they are all for. I do not think the tablets are working because she seems more confused than before she had them. I didn’t go with her to the appointment. My second sister took her but she doesn’t know what they are. I am not sure what to do other than to take her back and tell her doctor they are making her worse or just don’t give them to her. What is best?
A: The best thing to do is take her back to the doctor with a list of changes since she started the medication and then have him/her tell you in detail what the medications are for. You as the family caregiver have a right to know what you are giving to your loved one and you should make an effort to know. Having a lot of medication can complicate things if not properly given. How can you properly give it if you are not given both verbal and written instructions?
I have witnessed instructions on medication to change with each refill and noted that people are not reading or understanding the changes because the first instruction was what they were told or remember. For example: Lasix 20 mg — take 1 tablet once a day. Pharmacy refills and it reads Lasix 40 mg – take half a tablet once a day. This has potential for taking too much medication if the person doesn’t read and just goes by the first instructions.
It is important that the pharmacy brings to the patient’s attention the change so that the patient doesn’t overdose or under-dose. The pharmacy changes the instructions based on what is available to match what the doctor wants the patient to have. Therefore, the pharmacy has some obligation to let the patient know it is the same medication with different instruction to obtain the correct dosage. People living with dementia will have the most errors with this system unless someone helps them and this should be a team participation process.
Ask her doctor to eliminate tablets that are not needed to decrease the amount she is taking and ask for the side-effects so you can help monitor and communicate this to her doctor.