My mom passed away in October. Before that, my dad had been experiencing dementia symptoms for quite a while. Since her passing, he deteriorated quite a bit. My sister lives with him. She does so much for him. From cooking to reminding him to take his meds, etc. She has even helped him when he was impacted and he refused to go to the hospital (she is a nurse).
I am an hour away but I go there once a week to spend time with him.
We have a step-sister (he is my step-dad but has been my dad since I was 5). My step-sister hasn't been a part of our lives for years. She comes around maybe twice a year. She will talk to him on the phone a little more than that.
My dad has forgotten to turn off the stove, burning things. He could not figure out how to turn the oven off (that could be due to having cataracts). My sister opened the lid to his nightly medicine and he took those but also opened the next night's medicine and took those too. He will start to do something like empty the dishwasher, walk away and forget he was doing it. He will stop talking in the middle of a sentence and forget what he was talking about. He was trying to call me using the remote control (that could be because he has cataracts). He also tells us he just wants to die (we don't think he will hurt himself and are a little less sure that he might take too many meds). He also gets very angry and mean. There are more things but I wanted to give you an idea.
My niece is his POA. He trusted her immensely. She got him in to see an ophthalmologist who told him that he had very bad cataracts in both his eyes and he needs surgery. She told him he should not drive except for short distances, in the daytime and in good weather. He didn't listen to that though.
My niece also got him in to see a neurologist. He went thinking we would finally be told by a doctor that he is fine. That did not happen. After some tests, he was told that he should not drive at all and he needs to have someone with him at all times. He wants him to get an MRI and an EEG, which he is refusing to get done. He also told him that he is to come back after his cataract surgeries and then he can take a driving test in the car simulator that they have. So, for now, he is not "officially" ill with dementia.
I put a post on FB explaining we are looking for a companion to sit with my dad while my sister works. My step-sister took this information to my dad and filled his head with a bunch of horrible things about us. That we are just trying to control him and that he is the owner of the house and he doesn't have to do anything that he doesn't want to do. (this is the same person that told me that he is an adult and if he doesn't want to take his meds, he doesn't have to). He now doesn't trust any of us. Not even my niece. He also thinks the neurologist is a crackpot and doesn't know what he is doing.
A little more background info...he only has enough money to keep him in his house for maybe 6 months. My sister starts work in 2 weeks so she will be able to help but I still cannot see them in the house for even a year. He refused to go to a facility and he refuses to have anyone come in and sit with him. We had wanted him to sell the house and use the proceeds for a facility).
We do not know what to do. We fear he will fire my niece as his POA. We have an appt with an elderly attorney to get information but that isn't until Friday and who knows what he might do between now and then.
Does anyone have any suggestions or advice? We have calls into a few organizations but thought I would ask you all also.
I am sorry this is so long but I feel so sad and overwhelmed. This tears me apart. My dad and I have always been close and for him to not trust me, it kills me
My mother had an EEG in the doctor's office. An MRI was never recommended.
I’m so sorry this is happening to you. It is very sad but important for you to take a step back and remind yourself: you KNOW your dad is not all there. That he is having these various lapses and that there are neurological findings. You can’t let this tear you apart because he is in a very vulnerable state and is being manipulated. That isn’t a reflection on you or your relationship with your dad.
The great news for you is that you have multiple additional family members who have been deeply involved and in a position of trust. And you have those initial neurological findings. I agree with JoAnn - have a follow up call with the neurologist and explain the situation and ask him/her for a letter regarding capacity. Explain that he is being influenced to make decisions (driving, health care) that are not in his best interests. Hopefully the Dr. will be able to clarify things and that will be great input to share with the lawyer you are meeting with. I think you’re doing all the right things with that meeting planned. Have the three of you confronted the half sister? What is her situation?
Hang in there. I know it is incredibly sad to be maligned and undermined in this way. But just remember it isn’t a reflection on your long relationship with your dad. It’s a reflection of his vulnerability. Good luck and keep us posted.
Others may have OK memories but have lost judgement & reasoning skills. These folk don't 'feel' different so don't believe the Doctor, family, other people etc. (Medical term: Anosognosia. Search the topics for this).
Stress seems to make dementia symptoms worse in my opinion. This can be physical stress eg commonly: operation, fracture, chest infection, UTI or mental stress - & most definately grief.
If step-sis sees Dad infrequently, she may honestly not have seen any deteriation yet. Especially if his vocab is still good on the phone. Or maybe she's a bit slow to see it, not as observant as yourself or RN sister.
Or maybe she smells a house she feels entitled to.. You know her - be wary if you need to be.
Now as to Dad. Talk to his Doctor about if it is time to enact the POA.
To win back his trust, step the medical talk back a bit. Keep up 'checkups' as needed with his Doctor. Allow him to keep/gain trust there. (My no no no Mother will have a test/scan/procedure if a professional Doctor tells her to).
Dementia Drive leads to a whole new town - you must get your bearings. Then get used to it 🙁 Plus, it keeps changing!
In this new town, if Dad cannot stay home alone safely, hired help comes next ie the sitter. That's often the *keeping someone at home as long as possible* stage. It can be stable for a time which gives you time to forward plan.
But if Dad's temperament is to keep firing sitters, won't allow them in or is unsafe it becomes a 'showdown'. Sometimes the legal Guardianship type.
Let's just get through this week first.
Work out the medical facts as can be gained. Start getting the legal ducks in a row. Get your bearings. Take deep breaths. Debrief with your sister. Keep updating if it helps.
1. Power of Attorney/Power of Medical Attorney - The POA your father previously signed off on cannot be revoked if he can't make informed decisions. Know the difference between POA and POMA.
2. Health: If Dad has a diagnosis of dementia and cataracts, and you or the POA have documented a list of challenges he is experiencing, bring this info to the attorney. I also provided a list to my father’s neurologist. You will need the formal diagnosis and recommendations IN WRITING from the physician on letterhead.
3. Treating Anger/Agitation/Hallucinations (seeing things that aren’t there)/delusions (false beliefs such as you can no longer be trusted): A good neurologist can prescribe medications to help. They were a Godsend for my father and, no, he was not sedated or 'out of it.'
4. Step-Sister: She doesn't run the show legally. Bring her actions to the attention of the eldercare attorney to seek advice. Dealing with a contentious family member makes a hard situation even more difficult. Support each other as best you can.
5. Driving: As hard as it is, you can anonymously notify the state that your father is not competent to drive. I had to take this route with my father. It was heartbreaking but Dad was a danger to himself and others; thankfully he never knew that I was involved.
6. Housing: If it's time, the POA can move him into AL or MCU and sell the home. Proceeds can be used to pay for his care. I wouldn’t tell the step-sister that you’re moving him until he is moved and he gets settled. Many facilities have a process to help patients with the transition and ask that visitors wait until such time as the new resident has started to adjust.
Best of luck as you all journey forward. Dad is lucky to have all of you.