I have DPOA, and dad has dementia. I want to respect his wishes, but I take him to his cardiology and neurology appointments. (He thought he might be able to get his drivers license back from one of them) I noticed a 1.5 cm crusty skin cancer lesion, and his teeth (which he hasn’t brushed since August) are now starting to fall out. He often takes his pills incorrectly, even though he has a pill organizer. I’ve mentiined getting a new pill dispenser but he gets angry and argumentative. I’ve showed him how he took too many days worth of pills, and I’ve begged him to let me get someone to help me to help him. He thinks that caring for him only involves bringing him a “hero sandwich” every other day! I’ve mentioned that I’d like him to see a dentist and a dermatologist, and he gets furious and verbally abusive with me. Do I LET him fall apart? I’ve stopped nagging him to shower, so he stopped showering. I figure I need to pick my battles, but where do I draw the line? I am the only person taking care of him because he refuses help from anyone else. The neuropsychologist suggested adult day care and assisted living- but Dad just sits in his apartment smoking cigarettes and watching tv. He refuses to go anywhere! I am fully responsible for him, so I’m not sure if I can step back and do nothing for a week and “see what happens.” He could die if he doesn’t take his pills, or has no food to eat. He has 3 heart issues, and I’m afraid that when his teeth fall out he could get an infection that would affect his heart. I don’t know if the skin cancer can kill him, but he makes things so difficult that I’m losing my mind! I work full time, have my own family, and I have my own serious health issues to deal with. Any advice?
As your "screen" name says, dad is like a kid.
Being a parent yourself AND a teacher, you know how contrary and cantankerous kids can be!
If the pill dispensers are the usual little plastic weekly ones, get one of the locked ones - they hold more than a week worth and it is easy to check those missed (he won't be able to "double up" either.)
As for getting help - find a place where you can hire assistance, go WITH them and introduce them as a "friend" who is there to help YOU. I wouldn't exclude women from this attempt - I've read other comments where the person actually responded better to the female aide.
You might have to take some time off, or arrange visits/help when you are available. Start with shorter visits and they do tasks and get him familiar with them while you are there. At the least you can have this person check that meds are taken and do some cleaning, which will take a load off for you. If you have them bring your dad's "hero", he may learn to look forward to those visits. Gradually over time if he meshes with the aides, he may be more willing to comply with what they ask for. We tried bringing in aides to keep mom in her condo. She did not have a lot of medical issues, just wanted to get her used to having them, one hour per day, to check on her and that she took her meds (even with dispenser some were missed.) In her case she was too "independent" (she wasn't, only in her mind she was!) and after a couple of months, she refused to let them in. In your case, if you can get this working you can still "visit" when they are there and keep up the pretense that these are your friends helping you!
With dementia, you really have to learn that giving the person "decisions" to make doesn't work. Given a choice, they will choose NOT to do what needs to be done! For doctor and dentist visits, don't ask, just schedule it and if need be make some excuse for where you are going (time it for when he needs smokes or something, and say oh, we have to stop here first...) Trickery sometimes works! Our mother responds better if I put her appointments down in a pocket calendar. Mom still can balk, but after a few "do I have to go?" or "why do I need this?" or "I'm fine, I don't need to go." I just put on the parent voice and say come on, we're late, we HAVE to go.
So, one at a time you can get all these appointments done, over a few months if needed. If it is basal cell, it can be treated (mom has had several, the last was small enough we just did a punch biopsy vs the MOHS treatment normally used.) It is also slow growing, so not as big a concern as other skin cancers. Not that I suggest you ignore it, just adding some perspective and prioritization!
As noted by others, DPOA allows you to make financial and medical decisions, but as for getting him to move? No. That's how I ended up on this forum. Mom wouldn't allow help in, but also refused to move (despite having planned for AL when the time came!) Elder attorney says we cannot force her out, but facility would not accept "committals", which was implied if we sought guardianship. We had to "trick" her - she got cellulitis, which is serious, and one brother drafted a phony letter from "Elder Services" at the hospital where she was seen in the ER. It told her she either goes where we choose or they would put her someplace. Madder than a wet hen, but she went to the MC unit. They did have to resort to a mild anti-anxiety for the initial transition, but otherwise despite wanting to go home (first condo, now previous address), she's "okay" there. Staff should know how to "manage" those who are contrary, if they are any good.
If you can find a MC unit that will accept him and TRY to work with him, you won't have to worry about the smoking. I seriously doubt you will find any place that would allow smoking indoors, and in a MC unit he cannot get out to get any smokes, so patch or cold turkey is it!
The smoking issue is a huge thing for dad. I appreciate your advice about the caregivers. I’ve met with an agency and although they initially deemed that he was ok alone, im going to pursue a “friend” for him to come and visit. I told the agency that I thought it was better to have someone established now so that when his care needs go up, it’s already someone who is familiar with him.
God bless and thank you for your understanding!
There's a great Facebook group for Alz and Dementia caregivers. Good source of info as is this page. Consider seeking the services of an "elder advocate." A great friend recommended one to me and my sister here in Fla and she has been great. She connected us with a senior housing specialist who knows the ins and outs of the local market of housing facilities of all types - large and small, including private homes with maybe 5 or so residents. Your dad won't quit smoking (unless he can't get access to them anymore), so maybe a specialist who knows the market can find a facility that's more amenable to smoking. It's scary because they can cause harm to others, fires, etc., but let's be honest - you know he won't give it up.
My sister and I are paying the elder care advocate with Mom's funds and the housing specialist will be paid by the facility in which we ultimately place Mom. If you have the wherewithal to consider an arrangement like that, it will lift much burden from you. They know the questions to ask, and we have been very upfront with how difficult our mother is so she's not asked to leave where we place her.
I wish you so much luck in finding a suitable solution, so you can live your life again. And congratulations on hitting the 5 year survival rate. You can do this.
i decided I’m going to take one day a week off, so dad will have to remember his pills and get his dry cereal himself.
i know that in the long run, everything will come to an end. I think that once dad has a medical emergency, the next change will happen.
Bless you! Hang in there!
Does your dad have financial resources? If so, go pick out an assisted living community for him. Find one that you like and that will take him (smoking may be an issue, but there are ways to manage). DECIDE that he WILL move. That's the important thing. Be more stubborn than he is. Give up EVERY other battle but this one.
Good luck and, again, take care of yourself. Be upfront with your dad that you have to deal with your own life and will, if necessary, leave him to his own resources if he doesn't allow you to help him. Given his dementia, it will likely go in one ear and out the other, but it will help you to say it.
If anyone knows of an AL facility that allows smoking in the rooms please let me know. I’ve researched high and low and they all have “smoking areas” or “smoking lounges” but don’t seem to allow it in the residential rooms. (And Dad is so belligerent, he lit up in the hospital!)
Who is your back up? Because the 'what happens to him if anything happens to you' question needs answering asap, I'd say. What does happen?
Everything else is a question of mental capacity. If your father is still competent, then I'd say you are making a sterling job of it just getting him to key appointments. Once he isn't... it's a new world, of which you Will Be King. Mwahhhhaaahhhaaa...!!!
Try not to elaborate problems, though - mouth infections can be associated with cardiac infections, it's true; but compared to smoking the risk is negligible! - and besides you don't have to wait for his teeth to fall out for those bacteria to be having a rollocking good time in there. If you can get him to see a dentist, loud hurrahs. If he won't... he won't. Try again later. Try mouthwash. Try one of those fancy-pants electric toothbrushes with a timer and a pressure sensor to make them interesting to use. See if there's a visiting dentist who does outreach in your area.
Be comforted, you are fighting an incredibly difficult fight in a very carefully judged way.
And you’re right.... the smoking is FAR more dangerous for him. After 70 years of chain smoking, I’m honestly baffled that his lungs and heart are still functioning. I’ve given up on the dentist for him. He has always avoided the dentist, and i know that whatever dental work needs to be done will be ignored anyway.
Doctors really don't want to hear the messy truth. They can't do much about it except lamely giving their patient instructions (that your dad, if he's like mine, will interpret as he wishes). I started writing letters to his doctor. All written communication has to be made part of his medical record. It may come in handy. During visits, I can tell that his doctor has read the letters by the questions he asks dad. My dad's behavior and answers confirms for the doctor that what dad says and how he's doing are two different things.
If my dad had the financial resources, he'd be in an AL yesterday. Stop suggesting. Pick an AL that's near you and that you like, and start the process of moving him. He will be better off, no matter what he thinks.
Im so glad that you mentioned therapy. I’ve thought about it... just to iron out my anxiety in caring for my dad and my family, while dealing with a brain tumor myself. My fear is that my dad will outlive me, since I already have a “5 year survival rate” number attached to my life... and he has the best lab tests he’s had his entire life now that he’s eating, properly medicated, and detoxed from alcohol. The neuropsychologist (who suggested he consider outside help) asked him in front of me “what are you going to do if something happens to her? WHO will do all of this?” And he said he’d be fine “on his own.” 😳
bless you!
Im just torn between “picking my battles” and going against what he wants in order to make sure he’s safe and healthy. I will never get him to stop smoking, but the teeth and the skin cancer???? I’m torn between listening to him saying he’s NOT interested in getting them checked, and deciding if the fact that his teeth are falling out and he has a very large skin cancer lesion are things that are worth the battle.
perhaps you could take him to an attorney to do a”living will” and let the attorney take it from there.
Can you ask his doctor if hospice or palliative care should be set up?
From what you describe your dad has no quality of life so please don't try to increase his quantity. I know that is hard.
Hire caregivers, tell him whatever will get them through the door, oh yea, hire a smoker or it won't work out. Even just someone that can hang with him, make sure he takes his meds and has food.
You need to do what you have to, to ensure he is safe, you can't ask or explain, just implement. Which is hard but if he can stay in his home and get the care he needs, even if its just companionship, then let him, if he has the money you are in a better place then lots.
It will take time to find people he can mesh with but it will take a huge load off you and give him some quality for the time he has left.
I wouldn't get APS involved except as a last resort. If they do anything, big if, you loose all input, it will be up to them and he is nothing to them, just someone to house safely. Don't give up until you are truly defeated.
Best of luck! May God send people right away that will fill your dads needs.
im not defeated yet, as every day brings new challenges, but I believe that everything works out eventually- if just for the fact that time goes forward.
Maybe you should get APS involved or Office of Aging. Let them evaluate the situation. They may tell you that there is nothing you can do. By doing this, it will show you didn't abandon him, it was his choice and APS said you can't do anything legally.
My sister and I are co-caregivers to our mother with fairly advanced Alz and now, a debilitating knee injury so she can't even walk. We decided it's time to get her into a place where they can at least keep her fed, showered (she hasn't had a shower in 2 years), and relatively safe. To help us navigate the ins and outs of an incredibly complex world of elder caregiving, we have contracted with an elder advocate who also works with a senior housing specialist.
The $1,325 we have paid so far for this out of Mom's accounts has already helped. They are also willing to be the "bad guys" when it comes to explaining to Mom that she can't live by herself anymore. The worst is yet to come - we've just started this journey - but to help you see things more clearly, prioritize which battles to fight, and remove some of the guilt that comes with the child/parent dynamic, consider an elder advocate in your area. Just google that phrase and see what comes up. Mine came highly recommended to me by a friend who went through something similar. We are lucky in that we have the most fabulous geriatric physician on the planet (we're in Fla.), too.
They can help with alternate sources of financing, veterans benefits if that's an option, and so much more. The short answer to your question is yes, it would be to everyone advantage to step in and override your father's poor decisions.
I wish you luck.
My dad died about 18 months ago and I had been estranged from my family for about 10 years leading up to that point. When I came back home I realized my mom was not the person that I remembered. She wasn't taking care of herself in any way, she was living in filth, and despite having been an accountant she let her finances fall into a state of disrepair (including attempting to purchase a property with excessive earnest money) such that it took a year for me to clean up the mess and prevent her from going bankrupt.
In the beginning I had no idea that it was Frontotemporal Dementia. We thought maybe she was just depressed. We argued with her to let us intervene, but she was completely obstinate.
Eventually I took action, got DPOA, fixed everything, etc. But I realized that she needed even more than what I could provide with just DPOA. I hired legal counsel and petitioned the local probate court for guardianship and today am in the final stages of having her placed in assisted living.
The best advice I can give you is this. Start the process ASAP.
If you don't intervene now, the damage caused tomorrow could be much more costly than what's required to get things under control today. The sooner you get the guardianship process, the sooner your dad will have the care he *needs*, even if it isn't something he necessarily wants.
Sadly he’s to a point in his dementia where he’s not processing things normally and he’s combative. I had to get an automatic pill dispenser for our dad before he went to AL. It worked great but was quite expensive. I could monitor it and control it wirelessly from my computer. I still have it and if you lived in OK, I’d sell it to you cheap. But anyway...your dad's physician should be enlisted to talk to him but you said he won’t go. What is his diagnosis of dementia...vascular? How old is he? If you could put something about your dad under your profile it is helpful to readers like me.
dad is 80, and we just moved him 6 months ago from 3 states away after mom died. We took him straight from the hospital to an available apartment. Also he has NPH and was supposed to have a shunt put in but the surgeon canceled surgery the day before because dad smokes and won’t quit. Surgeon said he “won’t have a good outcome”...
Neuropsychologist said “you’ve got a complicated case here. You certainly have your hands full.” 🙄
You may think that you are breaking a promise to him but the real promise is that you care for him and his health. Don't feel guilty about this transition because you will be taking care of his health and the staff at these facilities will care for him and deal with his stubbornness. You have a family and yoyr own prpblems to deal with. Take the strain off yourself. You need professional help at tjis point.
Because he has dementia and is a smoker, he is at high risk for setting his home on fire. Where does he live? What is the risk of a fire burning down other structures?
His health is poor. Perhaps it's time to discuss prognosis with his doctor and prepare for giving your father the best quality of life for whatever amount of time remains. If that means hero sandwiches every day or two, then enjoy that time.
Rather than mentioning things to him like getting a new pill dispenser, just do it. That is something that is within your control. Get him an automatic pill dispenser and reorganize his pills for him. They are expensive - $60-$75 - but they work for seniors with cognitive decline. Lock it and you keep the key in order to prevent him from taking extra medication.
What is his financial situation?
How do you pick your battles? Depends on how bad Dad’s dementia is.
If he is willing to see the cardiologist again perhaps have a chat with the doctor ahead of time and have the Doc tell Dad he needs to have his teeth seen to to prevent his heart worsening?
Skin cancer? My Dad is fastidious about having his skin checked after his first round of skin cancer 20 years ago. But he will not go to the dentist anymore. Like I said which battles to pick?
There will come a time when Dad can no longer live in his own. Perhaps start looking into options now, but do not tell him.
Dad will die at some point. Perhaps ask him if he would rather die of cancer, heart disease, stroke, malnutrition, COPD or some other malady? Then tell him you will not facilitate his death by neglect.
Remember you do not have to ask him about a new pill dispenser, just go buy it, load it up and take the old one away.
It is crazy making when they refuse help, then expect others to clean up the mess they create.
Sorry no real answers, just someone who understands the challenges.