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My family moved in with my father (81), who has advanced Parkinson's. I do the cooking, cleaning, laundry, medications and my husband takes care of the upkeep on the house. We do have a contract for a care plan which will allow us to retain the house if and when he has to move into a long-term care facility (and not lose the assets to Medicaid). My father is physically frail and has some cognitive decline, although it mostly seems to affect his executive function. I have basically replaced my mother's role for him. (She is currently in a memory care facility as a result of Alzheimer's, so we have the added stress of caregiving for her, as well.) She waited on him hand and foot. He has very few manners, so we don't get many pleases and thank-yous. He has lost much of his ability to read and interpret social cues, so he's completely oblivious to the busyness and chaos of our lives and will interrupt at almost anytime to ask for my help with something. He's super cheap and questions us almost every month when we pay him our portion of the bills (which is half of everything). I think he just has trouble keeping track, but his lack of social graces make his manner of dealing with us very frustrating. He's not super demanding, but his manners and interactions with us are really grating on both me and my husband.


On top of this, he has some unpleasant addictions that are really troublesome. He smokes (which we knew when we moved in, so I just grit my teeth and deal with that, although he never smoked growing up, so it's not something I'm used to), but it's still very annoying when he knows how much I dislike it, but he'll smoke right before we all eat dinner as a family so that he reeks, or he waits until after he smokes to take his Parkinson's pills, when he knows that the smoking makes him shake uncontrollably, which makes it difficult to get his pills out. I've also discovered that he has an online porn addiction, which is just...YUCK, but hasn't caused any real issues for my family, as he has his own space in the house. But, I discovered last summer that he regularly goes to an erotic massage parlor, spending $200-$300 a pop. He's spent up to $800 in a month. Couple that with how cheap he is about other things, it creates an infuriating situation. I realize that his medication can cause addictive behavior, especially sex addiction, but I have no idea if this was an issue before or not.


Then, there's his unsafe driving. He's gone through a medical review with the MVA at least three times, each time with us praying that he would fail. Each time he passed, though I have no idea how! He rarely drives faster than 30 MPH, crosses the center line, has trouble seeing at night, etc. We shared our concerns about his driving, but he's very passive aggressive and just ignores us. But on Memorial Day, he was in a head-on collision after a egregious error on his part. Thankfully, no one was hurt too badly, but his car was totaled. He does still has an old pick-up truck that we keep for trips to the dump. My brother and I told him that the accident was it. He needed to stop. Since then, my husband and I have been rearranging our schedules to make sure that he has rides to anyplace he needs to. But, everytime we leave the house, he takes the truck out, usually to feed his "habit".


I could go on and on but my real question is have you ever gotten into a caregiving situation with a relative with whom you've always had a wonderful relationship, only to have your new perspective on that person (or perhaps their new behaviors) really cause your feelings to sour? I love my father and we've always had a great relationship, but I'm really starting to find it hard to like him at all. I don't know what is him and what is his cognitive decline (though I suspect it's a pretty balanced mix of both) but I feel terrible that I have such negative thoughts and opinions of him after 44 years of a being a daddy's girl?

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I think it’s perfectly understandable that the things you mention would change your opinion of your dad. I think they are the kind of activities that would give anyone pause about another person, say if you discovered them about a friend.

It doesn’t mean you don’t love your dad or he doesn’t have good qualities or that your past relationship with him wasn’t special. But I think being so up close and personal, living with and among all the negative behaviors would be unbearable to me.

Is there anyway to retrace your steps and extricate your family from this environment?

So sorry you’re going through this.
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Your father is acting like it is his house – which it is! I would not choose to live in anyone else’s house as a permanent visitor ‘obeying’ their rules. Certainly not if I was waiting on them hand and foot as an unpaid wife replacement. You paying your share of the bills TO HIM reinforces that it IS his house, and his rules.

Perhaps you should re-think this whole arrangement. There are many posts on this site about people who have sold their soul in the expectation of inheriting the house, only to find that it didn’t work out that way. A porn addiction (on the net or in the flesh) can get through a lot of money, even before he meets a bloodsucking lady (and he sounds like a prime candidate for that). Aged care can also get through a lot of money. You should be paid NOW for what you are doing, not keep waiting for pie in the sky. That separates you from being an unpaid wife, and should at least in theory lead to a more respectful employer/ ee relationship.

You should also have some rules that let you live there by MUTUALLY acceptable rules. OK you knew about him smoking, but there is no need for him to make it so offensive. Perhaps he should eat separately. You should be able to do the bill paying differently. Does your ‘family’ include children as well as you and DH? Your children should not see you being treated like this.

You grew up seeing your mother waiting on him hand and foot – in other words, being treated like a doormat. Getting treated the same way is making you reassess the joys of being ‘a daddy’s girl’. Don’t ‘feel terrible’ about it. If you want to keep your love for him, either make some changes or move out. And get paid first!
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To be blunt, Parkinson’s carries with it a number of difficult and unpleasant to manage symptoms.

Loving caregivers need to be FULLY PREPARED IN ADVANCE for the differences between the parent (patient) you knew in the past, and the patient you’re living with now.

If you’d known about the many MANY problematic issues you’d be encountering BEFORE YOU changed your lives to care for him, you might have very reasonably decided to “help” him by managing his care in ways that could have worked better for all of you, and ESPECIALLY, for you and your husband.

Temporarily, see if you can “reframe” this situation to realize that in fact, almost nothing about this is really in the best interests of ANY of you.

Right back to square one, you don’t “….lose the assets to Medicaid” when someone owns property NEEDS CARE. If the house belongs to him, you sell it at some point and spend HIS assets to take care of HIM. If the house ISN’T ENTIRELY HIS, you have some legal figuring out to do.

Are you (WERE YOU) aware that a very small but segment of Parkinson’s patients experience the symptom of “hyper sexualization” as a result of their illness? That would have been a horror for me as a “daddy!s girl”.

So, back to “reframing”. Can you find a way to realize that you are a loving, devoted daughter who loves your dad fiercely, AND DESPISES THE DISEASE that has caused him to become SO TOTALLY DIFFERENT from the dad you knew?

And then, can you admit to yourself that your presence as a full time caregiver isn’t working well for ANY of you, and LEAST WELL for you and your husband (who must be a really GREAT GUY).

You and your husband have to determine your father’s financial status, his care needs, and how cognitively lucid he is to participate in development of his care plan.

THEN? TOUGH LOVE. Realize that any attempt you make to extract yourself will be VERY DIFFICULT forALL of you. But like a long neglected visit to the dentist, it will take EXTRACTION (of you and your husband) for THE THREE OF YOU to HEAL.

You and your husband are GOOD PEOPLE. So is your dad. He needs your help and support. You need your lives back.
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Yes, his house his way. I had a spoiled father too. I told my brothers early on that if Mom went first, they were caring for Dad.

If you can prove the accident was caused by his Parkinson's then the DMV will probably take his licence away. Hide all keys to the truck or disable it,

"We do have a contract for a care plan which will allow us to retain the house"

Unless Dad has turned the deed to the house over to you or its been placed in a trust, Medicaid can put a lean on it when Dad passes. And those two things can't be done within the 5 year look back period. Its considered hiding assets.

Lets say Dad still owns the house. He needs Skilled Nursing with Medicaid paying. First, he is only allowed 2k in the bank. He has to spend down what Medicaid considers assets before he can go on Medicaid. His SS and any pension he has will be used to offset his care with Medicaid paying their share. As his Caregiver you will probably be allowed to stay in the home. But, you may have to prove you can pay the bills and maintain upkeep. The house is considered an exempt asset at this point but when Dad passes it becomes an asset that Medicaid can recoup what was paid out for Dads care. You may be able to stay there but a lean will be placed on the house and will need to be satisfied if you leave, sell or die.

So I hope that your contract was drawn up by a lawyer versed in Medicaid law.
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marysunshine76 Jul 2021
Thanks for your kind advice! Luckily, we are working with an elder care attorney, so if we are still caring for him when he does have to move into a facility, Medicaid shouldn’t be an issue. We are on the deed and in Maryland, if you are living with a loved one and providing care that is keeping them out of a facility for at least two years, the deed can transfer fully to us with no penalty. 🙂
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Blimey. If I met an 81 year old who was spending $800 in one month on sex I'm not sure I could look him in the eye, let alone live with him.

I can see how Parkinson's might stimulate a sex addiction. I can't see how it could stimulate a need to go out and start smoking if you never had before; and I don't know how you could not know that someone you have a great relationship with is a smoker. Which, I hope this won't hurt your feelings, leads me to question how authentic that earlier great relationship was. You love him, but did you ever get to know him?

How important is it to you and your family to fulfil that contract and keep the house?
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marysunshine76 Jul 2021
We did know he smoked. He just didn’t smoke when I was growing up. He stopped for about 25 years and started up again when I was in college during a particularly stressful time in his career. He’s never smoked around us until we moved in. As I said, we knew that going in and though it bothers me, I knew that was part of the deal. I feel confident that I knew him as well as most people know their fathers. I can’t imagine that most fathers publicize their porn addiction to their adult children. Irregardless, our changing dynamics are disappointing for me and I know that even if we were to move out, our relationship would suffer due to the fact that my brother and I will have to practice tough love. My question was more about how to deal with the emotional fall-out. Thanks for you input though.
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It sounds as though you have got into this to inherit the house and avoid it going to Medicaid to pay for his care. You have clearly gone to a lot of trouble to make that work. It’s turned out to have a downside that you didn’t expect. This adds another option to ‘move out or change the rules’ - just live with 'the emotional fallout'. Or perhaps yell a lot.
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Frances73 Jul 2021
Just a note to clear up Medicaid misunderstanding. Medicaid doesn’t "take the house." All of his assets ate expected to be used to pay for his care. A spouse is allowed to retain the house as long as he/she lives there. Once he/she moves out or dies then Medicaid will expect part of the assets from the sale be used to reimburse Medicaid for his care. Medicaid is for people who have no money, no assets, no a savings. It’s not automatic that everyone is entitled to it.

If they are doing this in the expectation of inheriting the house they should really sit down and decide if it is worth all the aggravation and second hand smoke.
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Illnesses can bring out the worst in a person. Add in mounds of different medications that also change their personality, it can be alarming to family members. I never saw the mean, fighting side of my mother until now with her advanced dementia. It’s very unappealing and making me dread being with her in these final days. I say to myself that my real mother died years ago. She was replaced with this mean lady that I’m caring for. I pray that I’m able to forget these last years and remember only the good ones.
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Seems it is time to have your father evaluated by his doctor for mental competency. It appears your father's executive functions have declined to the point that he can not , and will not, make competent decisions for himself or others. If he is declared mentally incompetent, then the person holding his Powers of Attorney - usually 2 legal documents that deal medical and financial affairs - start to handle his concerns. If you do not have POAs, please consider getting those drawn up by a lawyer BEFORE his doctor's appointment.

At this point in life, you need to create boundaries for yourself and your father. The boundaries are pre-determined by you and your husband to deal with irresponsible behavior of your father. Example, keep his truck keys locked up so he can not drive his truck. Another example, tell him his financial accounts have been hacked and give him a prepaid "debit/credit card" with a limited amount of money he can spend monthly. Another example, tell him his computer has been hacked and install "child controls" on his computer and/or change the access codes so his online use if safer. I like any of the books by Townsend and Cloud about "boundaries" to help in dealing with problem behaviors. It might also be useful to meet with a counsellor to work through the process of setting up good boundaries for your father.
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Well, you are actually being nosey to find out about your Dad's portfolio or massage parlors.
What he does in his private life is not your concern as long as he can afford it.
As you said,, you knew he smoked before you moved in.
If you don't like living with him then you need to give Dad time to make other arrangements and then ya'll move out.
Maybe Dad could hire Caregiver help?

If Dad was in the Military, he can get up to 30 hrs a week free Caregiver help.

Check with Dad and see if he thinks he would be more happy living in an assisted living place where he would have his own apartment they have things to do and a place to go eat.

I'm sure he's very bored. Maybe you can arrange for him to go Adukt Day Care or places that he can go to during the day for lunch and bingo or cards so he can socialize.

Have you thought about hiring a Live In and have them take care of both your mom and dad in their own home?

Prayers
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Imho, disable his truck (even though you use it for the dump, you may have to find another alternate for that) by any means possible as he's already totaled one vehicle.
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