This is a call for advice. My mom has had Parkinson's and dementia for 5 years now and has slowly and steadily been declining. Our current caregivers are a mixed bag, and one in particular is giving her subpar care (refusing to cut her nails, sits her in front of TV all day, doesn't want my mom's sister over because she's bossy and points out her mistakes, can't take any critique or feedback, once had her on a wet bed pad for hours, also not skilled enough to hold her up when she has fainting spells, etc.). In her care, my mom is declining noticeably more quickly. We have other caregivers who are better and are now available to take over the schedule but my dad refuses. Context: he has a girlfriend who I believe is encouraging him to step back from my mother's care. He is currently on a 4-month long summer "respite" from my mom, so no one is there with her (I am on study abroad for the semester, a hard choice but I do feel as a person in their mid-20s it's my dad's responsibility more than mine to be there) AND he does not like the idea of this new schedule that would have only the better caregivers. The cost is the same. So the only possible conclusions I have are A) he's unwilling to admit that this caregiver is subpar because it would reflect badly on him or B) he and his gf are conspiring against my mom whether so intentionally or not, to have my mom decline faster and to the point she gets put in a home so he and his gf don't have to deal with her care anymore.
My questions are twofold: what do you think? Is it possible this nefarious plot is actually happening? And, what are the standards to define elder neglect? If I can prove that my dad is not doing what he ought to is there any way I can legally take over the responsibility of my mom's care (without my dad's consent)?
You could have APS do a well call for you. Maybe at this point Mom should be placed in LTC. Dad can have assets split and Moms half would be used for her care. When the money starts to run out, Dad applies for Medicaid. He can remain in the house and have a car. He may lose a little in the beginning but he won't have to worry about paying for the constant aides longterm. He will probably be able to keep his SS and any pension he has with Moms SS going towards her care. That will depend on how much Dad needs to live on. He should talk to an elder lawyer well versed in Medicaid.
You need to approach Dad as this will be a win win in the longrun for him. Mom will be safe and cared for in LTC. He can go on with his life.
I agree having a team of great caregivers would be better than some great + one subpar.. alas, perfect or best is not always possible.
Hearing about faints, nails, lost weight has got you in a worrying whirl but there is probably a lot of good too. As you mentioned, Mom is in her home, with caregivers she knows, her sister visits.
Scale down the worry.
Look at what you CAN do. Support your Aunt by phone & call your Mom. Support Dad too. If you take the stance of telling or implying Dad is not doing a good job, he may ignore or even distance himself from you.
No-one likes a back-seat driver or a long-distance supervisor! (Even though your suggestions come from concern & caring)
Letting go is hard. I don't mean letting go of Mom, or loving her. I mean letting go of wanting to take control.
When Dad returns, consider asking him what he wants to do, going forward.
I'm sure in the wider picture you both want to have Mom cared for - but that may look different for both of you. You can aim to stay on the same side, the same team. That will help Mom the most.
PS No staff should be holding patients up with faints or falls. Lowering to chair (if possible) or the floor is safer all round.
PPS Don't make the mistake of writing of assisted living/nursing homes for the very frail. A beloved home's familiar walls don't provide for all our needs across our whole life span. Elders need socialisation too. When mobility & accessing the community is diminished, a care home can provide more company than aging in place & getting lonely or bored with one caregiver. Depends on temperament of course, but some of my fam moved themselves into assisted care settings & enjoyed the company it brought.
Something to think on if this comes up.
if so, Imho, no way he could ever be considered neglecting his wife; he is imo going above and beyond in doing what needed to have his spouse continue to be in their home. That he has a gf or has a social life outside the confines of your parents home is his decision to make. He does not have to become a caregiving martyr to appease anyone.
Your parents situation in that they have the ability to afford and sustain a stream of in-home $$$$ caregivers is beyond fortunate. That dad has done this for years and years is beyond fortunate. Personally I think you’ll be hard pressed to find a lot of sympathy for your concerns. Yeah I know this sounds harsh but for most couples when 1 needs that level of 24/7 oversight care they end up having to impoverish the at-need spouse and have income go as a copay to a NH and apply for LTC Medicaid for the NH spouse. This is what JoAnn aptly posted about. Most Families do not have the $$$$ to have years of in home caregivers to the point of complaining that 1 of the caregivers sits mom in front of the TV too much.
As your parents are married, your dad as the well spouse is in charge of moms care. He has inhome health happening, he is being responsible. If he does respite, that’s his decision. Realize that regular respite is a given under Medicare hospice so doing respite is encouraged. 4 months is longer than what most do, but if her has 24/7 oversight and is readable as ended, well good for him.
For you to change moms living situation would mean that someone else - her Sister or a grown adult child - would hire and attorney to seek a Guardianship or Conservatorship over mom. (You probably would not be named as you have recent history of going and living aboard for months on end). Atty would file for a Guardianship hearing and your dad as her husband then contests it. Doing this will have costs, and costs that you, your siblings or your Aunt would have to front. I’d say at least 10K as upfront retainer. Your dad can use the $ he & your mom have to pay for his (their) attorney. Please realize Judge does NOT, again DOES NOT, have to name your family or your Aunt as the new guardian. Judge may decide as there’s competing family interests so will name an outside court appointed guardian and that person is now in charge of all moms care and her share of their joint assets and will move mom out of the home and into a facility. That new appointed guardian will move her to a facility as its a neutral space. As your parents are married, the court appointed guardian will be working with dad in some way in all this. You & your Aunts outside of the guardians advisory circle, guardian may meet with you but decisions not yours to make.
Parkinson’s is a cruel dehumanizing disease. That your mom is declining and it’s scary obvious is what Parkinson’s does. It is not ever going to get better & could get worse if she starts to exhibit Lewy Dementia as that often happens with end stage Parkinson’s. (My mom had Lewy). When you return after living abroad for 6 months, you’ll likely be gobsmacked as to how she looks. I’d suggest that you join a Parkinson’s support group now to help you with the reality of what the situation is. Being pissed at dad, causing friction with him, the caregivers and his gf, will only estrange you from your mom in her final years and your dad & his world in the future.
Sounds like you will be able to visit soon as the semester is nearly complete. What an awesome opportunity to spend the semester abroad!
Is mom's husband your biological father?I
Is aunt a drama queen?
Have you tried talking to dad with compassion and.understanding?
Have you looked into joining a virtual support group?
AND your dad -- who I presume is still married to your mother -- has a GIRLFRIEND?
How do you propose to take over her care when you're thousands of miles away?
None of this makes sense.
Why should this be shocking to anyone? I've had two husbands and will likely remarry my second one soon enough. We're older now and I told him that I would not have no problem with him having something on the side if I was invalid, or had dementia, or was in a care facility. He agreed that he wouldn't mind if I did under such circumstances.
Have discretion about it. If you abandon your ailing husband or wife in favor of your mistress of lover, that's wrong.
As for your aunt coming over to boss and critique the caregiver. It's not for us workers to decide who can visit a client and who can't.
I've encountered many bossy, visiting knit-pickers in my time like your aunt. They learned fast that I won't be micromanaged by people who have no idea what caregiving work is about. I don't think so.
Your mother has dementia and Parkinson's. She also has fainting spells. TV is a big part of the day for clients like that regardless of who's taking care of them. Or if that care is in-home or in a facility. People see ads on tv for care agencies where there's a delightful old person laughing and doing a puzzle with their worker. It's NEVER like that. I've never done a puzzle with a client nor has one wanted to, in almost 25 years as a caregiver. I had a client with Parkinson's who had fainting spells too. There's not really a lot of activities the caregiver can do with them. I considered it a good day if she fed herself. We're not entertainers. Hire entertainent if that's what you're looking for. If your aide is not well-trained request a different one, but please do not make her a scapegoat for why your seriously ill mother with dementia is declining. If the agency sent a poorly-trained, unprepared aide with no agency support available, that's on them not her. It is her supervisor's job to make sure she can handle the care and to provide outside support if needed.
Your mom would probably be better off in a care facility. As for the other thing.
Does she know that your father has a mistress and that he's off seeing her? How French. Anyway, it being summer and all, school's out. There's no reason why you can't come home and oversee your mother's care. As for dad, well a person can have multiple spouses throughout their lifetime. You only get one mother though. Don't care for guilt-trips? Who can blame you? I don't care for them either. I'm sure your father doesn't care for the one you and others are very likely trying to lay on him. He's taking a break. Nothing wrong with that. He gets points for not putting her in a nursing home.
No matter how good anyone's caregivers are, there ALWAYS needs to be a trustworthy person that is family or as good as, regularly checking in on the situation. If not daily, then at least a few times a week. Same as when it's a residential care facility. You don't just leave it to caregivers and hope for the best which is exactly what this situation sounds like. Maybe your aunt can make herself useful in this way instead of as a bossy nuisance to the people your mother literally depends on.
You don't help with your mom's care because you feel it's your father's responsibilty. Yet you want to take full responsibilty for it. Don't put the cart in front of the horse here. Have a talk with your father. A respectful talk with your mom's care needs and best interests at the center of it. No judgments and no guilt-trips. I'm sure the two of you will be able to make a better plan for her. Good luck.
Research the use of "your" vs "you're."
How can your Dad speed up Parkinson’s with neglecting Mom?
As caregiver to husband with PD i know few things, and of course not even the best specialists are sure of disease trajectory.
PD after five years often escalates for different reasons, could be meds, obviously neurologist should determine that.
PD is characterized by slow progression generally, but with dementia could progress rapidly, again, drs opinion needed.
It is true for different reasons, many people with PD do better at home, again, as my husband is highly functional and exceptionally cognitive and often people in facilities are put together, assumption being made they all have PD and dementIa, which is 40% of PD.
Quality of life is important, again, it does not diminish or speed up progression.
You, being good daughter have concerns, but, I suspect you are getting part of the story from your aunt, whose opinion is rather subjective.
Objectivity and facts are necessary with this disease. And simple fact remains nobody got better with Parkinson.
Many adult children find the idea of a surviving parent having a new relationship, a new love life, very confronting, whether before or after the death. It jeopardises inheritance, and seems disrespectful to the memory of the parent who is no longer the focus of attention.
Perhaps you need to focus on what your mother needs, and forget about the ulterior motives that you suggest. Can you get someone else in to assess the situation and report to you both, without the head of steam that comes with this patch of turf? Find better alternatives that your father can organise easily?
So long as he has a measure of discretion and does not as they say, rub his wife's nose in it.
The fact that he hasn't put her in a nursing home is a pretty good indicator that he cares about his wife and is trying to do the best he can by her.
Parents getting involved in other relationships does not have to jeopardize any potential inheritance. An aging but lonely parent who cares about their family doesn't allow that to happen.
You should discuss it with neurologist, it does happen, what I learn about this horrible disease is beyond comprehension and my husband has no dementia, but other symptoms appear daily/ weekly.
Neglectful caregivers is different matter, but, not cutting nails is not neglect, if caregiver is not strong enough hire somebody else. I will always give any caregiver benefit of doubt, as it is the hardest job.
Your Mom‘s sister could be too critical, not knowing all the facts.
Your father, maybe marriage is over and some people cannot feel, deal, or have any emotions, sympathy etc.