I'm 2 years into caregiving for my 72-year-old dad, and things are declining. Could use some advice.

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Hello everyone. I stumbled upon your forum yesterday while researching assisted living places and signs of dementia. I've since spent the last 24 hours visiting your site off and on and reading the heartwarming and disheartening stories on your threads. Oh how I can relate to so many things you all have shared. My heart and hugs to you who are struggling in this often thankless, seemingly insurmountable, whirlwind of a role called caregiving.
I am the oldest (42) of two daughters; we are jointly tackling providing caregiving to our 72 y.o. father. His health has been a roller-coaster of events over the last decade. It began with Stage III Melanoma, few months later his first stroke, then a battle with invasive bladder cancer and a second stroke in December of 2013. A few years ago he was diagnosed with 3 aneurysms (2 aortic). Went in for surgery in early 2016 to address the triple A but it was too invasive for the surgeon. Referred to a specialist but my father threw in the towel. He decided he will not go through any more procedures or tests- he simply resolved to taking his umpteen meds and living out the rest of the life he has. (My sister and I respect his wishes and understand it is his decision.) Until 2015, his common law wife (20+ years) lived with him and provided caregiving. Though I say that loosely. She scheduled appointments, went to doctor's visits and cooked meals but beyond that there was no emotional support, no interaction (literally sitting in the same room for hours and never speaking to him), the house was not cleaned regularly and she frequently left him to go off with friends. To her defense, my father is not an easy person to contend with. Incredibly opinionated (at times hateful), he knows everything and can do it better. Our entire life, conversations with him were typically 1-sided. He seemed disinterested in our lives and rarely if ever, even asked how things are going. I do know my father loves us - in his own way. For most of the last two years, he has been able to care for himself. Though he's had a plethora of health issues, he is mobile and still able to drive. Does his own grocery shopping, picks up his meds, and visits the flea-markets on the weekends. He does suffer from dysphagia (cognitive issues and broken speech) - a result of his last stroke. He has been banned from a store for his behavior. When his partner decided to leave mid 2015 (to "enjoy the last few years of her life") - my sister and I automatically assumed the roles of caregiver. He's our dad - you take care of family. Right? We knew this would not be easy. My sister travels for work 3-4 days per week, I own my own business and have 2 children. We are both married. Sadly, my father does not have any friends and therefore no other outlet. There were few things my father enjoyed: fishing, woodworking, target shooting and hunting, and he was a gear head. He is unable to do any of those things. He not only has cognitive issues, but limited dexterity in his hands. He spends much of his time walking around his yard picking up sticks, doing trivial cleaning tasks and watching tv. Offers to take him to the park, fishing, etc. are often passed on because he tires easily as well. My sister and I have tried to get him to move in with one of us so that he can have regular interaction and for somewhat selfish reasons - it is so difficult for she and I to maintain 2 homes (ours and his). He always has a list of things for us to do: schedule trees to be cut down, order a carport, have a sidewalk poured, get the inside of the house painted, bring in an electrician to fix lights, order dirt/gravel and spread it and the latest, new flooring. We visit him regularly (at least once a week) and pay his bills, balance his checkbook, call in prescription refills, etc. We both have POA (financial and medical). We got that taken care of when his partner left. The last several months we have noticed possible signs of dementia. He has begun drinking every afternoon as well. Yesterday he called for a family meeting and requested my sister and I along with our mother (who he has been divorced from for 35 years) be present. When we arrived, he was confused why we were all there and said he only wanted to speak with our mother. My sister and I obliged and went outside while they spoke. He is questioning our handling of his finances. He told her he doesn't see his statements (though they are delivered to his house, he opens them, inspects them and then my sister and I balance the books and pay bills). The checkbooks are left with him so he has access to the info and he carries a debit card so he has his own access to funds. He had a fire on his stove last week as well (though he was able to extinguish it and went and purchased a fire extinguisher the next day). I have reached out to his doctor to ask him to test him for dementia. He has an appt at the end of the month. He has siblings but they live 1000 miles away. Any advice?

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@Sunnygirl1 and @jeannegibbs, thank you for your replies and suggestions!

My sister and I have POA (I am primary) which includes medical care.
We are aware of his wishes in so far as he will continue his routine follow ups with his PCP so that his medications can be renewed but he is not willing to have any further imaging tests, surgeries, etc. (They found a spot on his lung before the triple AAA repair surgery was to take place and he refused any further work up or follow up on the "spot"). I read about the MRI and neurological testing. I am not sure how I am going to get him to comply with that. Even though I have medical POA, I don't think I can physically force him to do the test. Can I?

We do not know what his wishes were about long term health care as he never discussed that with us. I am sure he assumed his common law wife was always going to be there (she was an RN). In the past, when I have said I would like him to consider moving in with us (me and my family), he has replied "This is best." Meaning him living alone. I will be calling his former partner today. They were together 20+ years and I know that they had this conversation. My father was always a very private person (he wouldn't even tell my sister and I who he voted for saying "It's none of your business"). Two years ago he handed over his financial records and asked us to handle his finances. I know that was probably one of the most difficult things for him to ever do.

I have been told on this forum and have read other posts stating that their parent moving in was not a good idea. Maybe this is true and maybe we will not go down that road but I am not ruling it out. Along with possibly building a small apartment on our property and hiring a home care provider for during the day. We are waiting to see what his PCP has to say about the state of things at our upcoming visit.
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It sounds like you are doing things right! Congratulations. I hope the next doctor visit will provide you with some additional insight.

I think that for your father to move in with either of you would be a wrong turn. It can work -- my mother lived with my sister for a year before her needs increased and she needed a nursing home -- but the odds are against it. My mother was a docile sweetheart. It sounds like your father is not. It is great that you respect who he is, but having him live with you is another matter.

First things first. I hope the doctor can talk to you without violating confidentiality concerns.
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I'd make notes about all the things that you have observed with your dad and provide them to his doctor before the appointment. Things like fire on stove, resistance to care from family, avoiding going out, making unreasonable demands on family members, making false accusations, etc. can be warning signs of dementia. With my LO, I didn't know the signs and was very confused by her behavior. I didn't understand why she didn't want to go out, visit, shop, etc. What I didn't know is that people who are going through this mental decline get confused easily. They can't remember things and they fear embarrassment from this. Thus, they want to stay home in a familiar environment and even then they are scared. That's why they make call often and want the family members with them a lot.

The doctor can order tests and may even refer him to a Neurologist for diagnosis. Usually, the neurologist will order MRI and a Neuropsychological evaluation.

I'd make sure you are clear of dad's wishes for future medical care and/or intervention. Does he have an Advance Medical Directive? Is he able to sign one now?

I'd also read on this site about how moving a parent with challenging issues into your own home can be a very stressful thing and often it doesn't work out well.   I'd consider all options, before making that huge decision.
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Thank you jjariz. I will look into NeuroPsych testing - I haven't heard of that. I am unsure if the dementia (if that is indeed what he is experiencing) is from a reversible health condition or not. I read somewhere that B12, internal infection and some other health conditions can cause dementia and that type of dementia can be reversed with medication. I am of course new to this aspect of things so I don't know how true that is. If he were to move in with me, we would need to hire a daytime caregiver to at least ensure he takes his morning meds and eats. In the evenings we are home most of the time so I am "thinking" we could handle caring for him in the evenings and through the night. I did look into an independent apartment facility for seniors today which is outfitted with emergency call features in each room that would ring the adjacent assisted living facility 24 hours a day should he have an emergency. When I say adjacent, the assisted living facility is literally maybe 50-100 feet from the independent apartments. It is off of our little downtown Main Street area so he would be able to walk to restaurants, the produce stand, a few shops and my office is almost directly across the street so I could be there in less than 2 minutes (at least during the day). I am waiting to approach the subject after his doctor's appointment (hoping to be armed with the doctor's determination that he is not fit to live alone anymore). I am dreading this process as I anticipate him fighting us tooth and nail. With that in mind, I want to try and present it in a way that he feels like HE is making the decision and we are not forcing it. I don't know how realistic that is though.
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You're both doing good work. And all the signs are there for dementia. It's time for NeuroPsych testing - talk to the doc. Remember that all of these dementia symptoms are going to get worse. Rather than consider that he move in with you, maybe it's time that he move to assisted living?
Blessings,
Jamie
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Windyridge - thank you. Yes, my sister and I agree he expects too much. She is much better at saying no to him. I however will question if I am not doing enough - until recently when I decided - yes I AM. He however is not considering us. He feels living on his own is "best for everyone" but he is not thinking of the hoops he is expecting his daughters to jump through on top of managing our own lives. The recent fire is the final straw and we know things are going to get ugly with forcing him to either move to an assisted living apartment, in with one of us or allow home care visits. I approached his doctor to set that ball rolling. A little more about my dad. After his last stroke, they ordered speech therapy to come to the house. On the third visit, he threw them out. He thought it was pointless (I think it is more that he did not see the improvement he was making and he felt "stupid" and embarrassed). My sister and I took it upon ourselves to work with him for a period of 3 months we went over there (his partner was still living with him). My sister and I made flash cards, downloaded aphagia and dysphagia apps to the iPad and worked with him 2-3 times a week. He would agitate quickly, huff and puff and eventually storm off (even though he was making progress!) At month 3 - he refused to keep working with us. That was 4 years ago.

Countrymouse - yes, thick-skinned comes from tough parenting from my dad. I am always searching for the silver lining of being raised by him. One of those linings would be raising two independent, self-sufficient and tough daughters. Though we like anyone - have our weak moments. Yes, he is still driving. We had a concern about that and asked his doctor after his last stroke AND the large aneurysms, if he should be allowed to drive. The doctor said he cannot deem him incompetent. He is cognitive (to many degrees), he is able to drive a stick shift, understand road signs etc. The doctor said anyone could have a heart-attack driving so he cannot restrict it at this time. With the possible dementia issue - that may change things (I am hopeful and yet not looking forward to it either as I know that is the last bit of the independence he enjoys). I had to have a difficult conversation a couple of years ago about him no longer being allowed to take his grandkids anywhere for fear that he would have a medical incident and wreck. I am not offended or taken aback by the aneurysm rupture issue you mention. We were made aware that when it ruptures, he will die quickly and before medical help can intervene. He has refused surgical treatment and even imaging tests to track its growth. His doctor is frustrated but given my father's umpteen health issues - understands that he is "done" battling things. I have resigned myself to calling him daily to check in and my sister and I know every time I pull into his driveway - one day, it will likely be to find him.

Thank you both for your replies, encouragement and candidness. It is helpful to learn we are not alone in these struggles and because of our relatively young ages - our peers often cannot relate.
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You're doing all the right things: working together, keeping your own lives going, recognising the limits of what is possible, recognising your father's right to be himself and make his own decisions (though that may be about to change, of necessity), and reserving judgement on your former stepmother, too. Well done.

I'm not sure how you'll take this, but with your father's medical history you must be pretty thick-skinned by now so here goes: if either of those aortic aneurysms gives way your father won't know a thing about it. I'm not sure what you and your sister are hoping to hope for, but it might be comforting, in a strange sort of way, to bear that point in mind.*

You've also very much done the right thing in approaching your father's doctor, who I hope will prove helpful in planning the next stages too.

It's excellent team work, well done to you both.

*As long as he's not driving at the time, of course. You don't say, but is he still driving? Gulp!
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If you've been reading stories on this site you know that your situation is quite common. There's no easy, simple answer.

I think your father expects way too much from you and your sister. You both need to set some ground rules and step back. Put your own lives and families first.

If dad has financial resources see if he'll let you set up some home care services.

Still driving huh. Oh boy. That may be you next adventure.

And a fire on the stove. That's a big red flag that it's time for in home care or assisted living.

If he won't agree to either, and he probably won't, then you're in the same boat as the rest of us, waiting for the crisis or mishap that forces the issue.

I've been watching my elderly parents hang by a thread the last 4 or 5 years while they refuse any and all help. Welcome to the club.
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