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?
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.
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!
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.
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.
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?
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.
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.
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