My dad is refusing to find the best care for my mom. Any advice?

In facilities aides and nurses cannot cut toenails or fingernails because of infection. Just takes a little snip where blood in present, and infection can set in. Medicare will pay for a Podiatrist to cut toenails, but not fingernails. I think the aid can file them but not cut.

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.

So dad has and is arranging for & paying for your mom to have some sort of 24/7 care and oversight now for years to accommodate mom’s needs due to Parkinson’s. Is this accurate??
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.

That your mom is having 'fainting spells' means that she needs a higher level of care than what can be provided for at home, ie: Skilled Nursing or Memory Care Assisted Living, at the least.

Highly doubtful with regard to 'nefarious plots and elder neglect' considering your mother is given 24/7 care IN HOME which is super expensive by anyone's standards, whether you agree with the quality of that care or not! You are on 'study abroad' and not even on site in person to witness what's actually going on. How would you 'legally take over the responsibility of mom's care' being so far away??? igloo has given you wise advice in that arena.

In any event, in my opinion, your mother belongs in a higher level of care at this point in her illness. Or to have an LPN in charge of her care at home.

Good luck.

If you want to comment, please read my replies to the other answers first.

nm

Others have already address all I said here.

It would be very difficult to take over care for your mother. You would destroy your relationship with your father and even with 24/7 caregivers, you would still need to be incredibly involved in her care. It isn't easy, trust me, I was in the same position in my late 20's. I think you are right that it is your Dad's responsibility and if you haven't been living his life and caring for your mother, you don't know how he is feeling. You don't know what he has been through, the stress of caring for someone and watching the person you love decline for years.

I think the only thing you can do is note all of the mistakes the caregiver is making. Ask your mother's sister to help keep track of everything that is not up to standard. Once you have the detail, present it to him with another solution. It sounds like you have tried that but I would try again with even more specific examples and solutions. However, he doesn't have to make any changes and you need to either accept that or fight it, which will be difficult for everyone, including your mother.

Lovingchild, so sorry for your mother’s tragic illness. How horrible for you and her.

I have to ask, do you really think your father is capable of deliberately hastening her decline and even death? That’s a pretty serious suspicion to have.

Holy cr*p, a four month long respite? I think I'd forget my address with that kind of time off. Btw, is daddy paying for your study abroad?

At any rate, the person that takes charge, must also take (financial) responsibility.
Only when you can do that you have a vote.

You can have a sh*t fit about it but if daddy is paying for your school I don't think it's a good idea for you.

This was heartbreaking to read. Oh the horror of thinking of my mom sitting in urine for hours. I'm sorry, it has to be killing you.

I get p'd off about how my man's disease has wrecked my life, humongously big time, but almost each time I look at my husband's once so handsome gaunt face I imagine; the carpenter, the ship captain, the diligent hard working blue collar worker that was so liked by everyone, the great son and husband, screaming from inside this hollow disabled shriveling shell, "I am not this".

It is difficult fighting the impulse for self survival, to be unselfish, to feel deserving of a less taxing life, and to want to cut and run. It's nearly impossible but these trapped innocent helpless people need and must have a champion.

You're right to go ahead with your life. It is your dad's responsibility.

Do you think Adult Protective Services could do a better job? Besides, you can't do much from long distance.

Visit you mom when you can. Do what you can for your mom when you are with her. Take a video of the conditions your mom is living in. Let the caregiver see you do that. Tell her it's a project for college, a second major, and perhaps for a vlog your about to launch. Tell she's got nothing to worry about, raise an eyebrow and smile.

Tell your aunt to go into her sister's house like King Kong with a Mona Lisa smile, keeping her mouth shut. And if she herself is not going to roll up her sleeves, tell her to bring along one of those better aids to show the bum how it's done. And then leave at the end of 3 or 4 hours, letting the crumby aid wonder what the heck happened. Tell your aunt you promise to do the same for her one day..

Wait -- you're abroad somewhere and not even there to see what's going on firsthand? Who's telling you Mom's getting subpar care?

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.

This is about Dad’s ‘girlfriend’. A guy I worked was totally distressed because his father had walked away from his mother with dementia, then in a facility, and found a GF. Dad’s view was he ‘had only one life’, and he was not willing to make the rest of it about someone who barely recognised him. My colleague thought it was disgusting, but he also lived a long way away in the city and couldn’t do much himself.

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?

If Dad is away, he may be of the mind 'if it ain't broke, don't fix it'.

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.

Are your mother's caregivers agency hired? If they are, there are very strict rules about what a caregiver is allowed to do and what their not. Agency aides are never allowed to cut finger or toe nails. They're usally not allowed to handle medications either. They can only give medication "reminders". Check with the agency and have them show you your mother's in-home care plan which will outline exactly what the aide is supposed to be doing.
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.

Burnt hit some points I was going to after reading your response to me.

"move on with our lives" I did not say that, I said Dad could. And I am sorry I said that now I reread my post.

If Mom is covered by LTC insurance, policies differ and some don't cover that much. Usually with LTC insurance, as Burnt said, you must use an agency. This insures that payroll taxes are taken out of the aide's paycheck.* There may be only certain agencies the insurance will allow. I just read that depending on how much you pay in premiums depends on how much you receive daily for care. Could be $100, could be $200. $100 does not even cover a shift of one aide care with an agency. $200 may cover a shift of one aide. If there is more than one shift, that is coming out of Dads pocket.

*When an aide is hired privately, the IRS requires the employer to deduct payroll taxes and match the Social Security. A W2 has to be provided at the end of the year.

Placing an urgent request to Adult Protective Services, for a welfare check and placement eval, might be in order here. A Medical doctor appointment might be helpful, too (Geriatric Specialty). See if "abandonment" might be cause to get her placed immediately.

My husband with Parkinson’s, who was very OK for first 5 years and then all the sudden progression is happening very quickly. And he has best care, best nutrition, day programs, alternative treatments etc.
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.

You are quite astute for a young woman / daughter in her 20s. Very impressive.
If I were you, I would:
A-first: start recording everything in a binder/notebook - date, time, who, what and when - of all situations that are a red flag. This information / in a chronological readable format will or could be very valuable later on, esp if any legal matters are involved;
B-What is your mom's sister willing to do? SHE IS THERE.
She needs to be held accountable. It is HER sister.
If she is 'standing around watching this go on,' she needs to know that she is morally and ethically responsible to her sister (and what are the circumstances or relationship between them?) - Her sister might be held legally responsible in some to allow this to go on.
1) CONTACT SOCIAL SERVICES ASAP / elder care and discuss the situation.
2) find out if your dad has POA (Power of Attorney) for your mom and what, if any, other legal authority he might have. At the least, they will hopefully send someone out there - when the caregiver (subpar) is on duty. The more written and documented about the level of care, the better for your mom, and for you to make changes.
3) Contact a non-profit organization that assists family on low income (yours ? / your mom's).
4) No one has a crystal ball regarding your dad's motivations. He has a girlfriend, which isn't so unusual after five years w his wife being disabled although some may think it is 'wrong.' That isn't the point. He may be influenced by the gf or not. We don't know.
5) Are there other family members who can talk to him? If so, consider having a 'family' discussion.
6) Contact your mom's medical provider and tell them what the issues are so they can document and perhaps advise.
7) Yes, it would seem that your dad is the responsible party for your mother. That he isn't doing what he should be doing is (or would) alarming (to me).
8) Can you speak to your dad now? Zoom ? What does he say when you talk to him about the level of care he's providing (via caregivers - and personally) ?
9) After he shares with you his feelings and 'reasons' for his behavior, ask him what he wants to do as something needs to change. You could tell him his behavior could be considered abuse - and it well might (check with authorities).
10) It might be best to have your mom placed in a care facility. It is not easy to care for a person with these disabilities. Most caregivers are trained. They are generally now well educated, have limited language (English) skills, and some may do the absolute minimum, or try to get away with whatever they can (as this person is apparently doing). This should not be allowed to continue on.
11) You dad may be saying "I don't want your mother living here with me any longer. Although he isn't coming out and saying that.

If you are abroad, how do you know the specifics of this particular careprovider 'watching tv' and not attending as she should be to your mom? Is she hired through an agency? Can you call them to discuss?

Gena

* * *

Becoming your mom's legal guardian is expensive and a lengthy process. You would have to prove (which you haven't done in this message) that your dad is neglecting your mom and her health needs. Suspicions are not enough.

If it is only the one caregiver, help your dad to see that this person needs to be "helped" to find a situation that fits his/her skills and abilities (not caring for your mom). If she is part of an agency, contact them about your concerns.

Your mom's "fainting spells" need to be evaluated and treated by a doctor. This is not normal. When you get back from your studies abroad, move closer to home to become more involved in your mom's care. Then, you can see more closely what she needs and be a good advocate for your mom and her needs with your father.

igloo,

I'm not concerned about what my social security will look like with remarriage to my second husband. I am the one who benefits financially from that union because I never earned anywhere near what he does. I always worked and was able to support myself, but both of my husbands earned far more than I ever did, even though private caregiving work pays well.
I was married to my first husband for over ten years and he never remarried. My second remarried for five minutes more to spite me than anything else. I'll collect one of their social securities because either will be higher than mine.
When I met my second husband he was a widower with a two year old. I legally adopted that baby and he's my son. He's grown now and in college. Neither of us had any other kids. My ex is business and finance guy. He set up my mother's property. The one good thing she did was let him take care of this. I wish my father had listened to him. It's all good.

OP, I’m not surprised that you are p*ssed off with some of the replies, but we didn’t ALL belittle you. You have a very difficult problem, set inside a very unsettling situation. My guess is that if there was an easy solution, you would already have found it. Certainly no-one else has found it. As to 'trying to figure it out', it sounds like the old line about ‘when balls are full, head is empty’.

I hope that you and your mother manage to cope as well as possible, and send you my best wishes – not much more anyone else can do!

firstly , sorry for those who belittled you and dismissed your concerns. I am assuming that your aunt has expressed her concerns with this caregiver since you are away (and deserving of that ). There is nothing you can do about your father choosing to have a girlfriend , though it is unfortunate that he doesn’t do that more discreetly. To me, he should have prevented your knowing about that circumstance as you watch your mother decline in her illness. It is good that he has kept her in her own home as long as possible though , I do think many elders decline even more quickly in an unfamiliar place. The refusal to dismiss a subpar caregiver , especially with better ones easily accessible IS concerning. Not sure why he would choose to do this , unless just that he doesn’t even want to think about it or has had repeated interference , in his view , from the rest of the family . My suggestion would be for aunt and others to visit frequently , especially when this person is working . They can thus keep a better eye out. If the caregiver doesn’t like it , we’ll, tough , it is not her home but your mothers . If she is annoyed enough, she might choose to leave on her own, and the better caregivers then can be hired. Also, wondering if the insurance would cover having physical or occupational therapy which could help slow deterioration .
Try to mend your relationship with your father. He may be doing the best he can and is simply stressed from this situation. Give him some understanding in having another relationship , though it is hurtful to you and would be to your mother if she knew. Try not to become adversarial and work together for your moms benefit . Perhaps you can find someone to mediate in this ..a trusted family friend, a clergy person, someone from aging care , a relative . Good luck to you .

If you suspect neglect, there is an organization or a government agency that will look into that. Check your phone book or call your hospital for information, or ask your senator. Both Dad and the inferior caregiver should be "checked out" by the elder care inspector.

If you have a close neighbor or friend, call or write to them and ask if they could find the time to make frequent "checkups" on the situation at home. S/he, as a third party, could report any harm or neglect to the authorities or your pastor, if you have one. She/he could be your eyes and ears while you are away. Once there is another witness or someone who even suspects there is trouble, action will be taken to ensure your mom's safety and best health. I would certainly make it a point to discharge that caregiver who really isn't caring at all. You might even have to take authority into your own hands concerning your Dad's attitude about caregivers. He owes the best care for your Mom since she gave her best to him when she could!

How long has it been since you saw your mom? I think it is a normal human reaction to exaggerate a situation based only on what we hear. We automatically leap to the worst possible scenario. The imagination is a terrible thing especially in these sorts of situations.

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?

Burnt I would be especially careful remarrying! I wonder how SS would handle the ten year rule to collect SS under a new spouse. Their rules can certainly get complicated. My mom could not collect on her husband's until they had been married ten years. When he passed on the tenth anniversary of their marriage mom still was not able to collect his SS even though his was significantly more than hers.

Is it possible that hospice can be involved or a visiting nurse? Others will know better than I, but it seems someone like that might be helpful and able to make an assessment. They would have a better understanding of how your Mom's diseases can effect her. And how she is progressing. One episode of an unchanged diaper or linens in all those years sounds like an unfortunate fluke, not neglect. Your Aunt does not sound like an objective observer, not surprisingly. I would get your Mom checked for objective signs of neglect by a knowledgable person. Finding a reliable caregiver over a long period is actually a gift. I wouldn't change it lightly, and you may not understand the circumstances since you are abroad. Most communities have assistance for the aged with staff who will visit and assess how the person is doing. I understand that this might be very helpful to you. Contact the Office of Aging in your area (the County Commissioner or Mayor's office will have information). Tell them your situation and ask them to visit for your peace of mind.

Is it possible that hospice can be involved or a visiting nurse? Others will know better than I, but it seems someone like that might be helpful and able to make an assessment. They would have a better understanding of how your Mom's diseases can effect her. And how she is progressing. One episode of an unchanged diaper or linens in all those years sounds like an unfortunate fluke, not neglect. Your Aunt does not sound like an objective observer, not surprisingly. I would get your Mom checked for objective signs of neglect by a knowledgable person. Finding a reliable caregiver over a long period is actually a gift. I wouldn't change it lightly, and you may not understand the circumstances since you are abroad. Most communities have assistance for the aged with staff who will visit and assess how the person is doing. I understand that this might be very helpful to you. Contact the Office of Aging in your area (the County Commissioner or Mayor's office will have information). Tell them your situation and ask them to visit for your peace of mind. Or contact your neighbors and ask them how things look to them. Send flowers to the best of them and say how much it means to you that they visit your Mom and let you know how she is doing. They have been observing her over years and should have some idea.

I have read some of the responses, but not all. I think your concerns are valid. I am not surprised that your dad has a girlfriend, but I am surprised that he feels comfortable enough to leave your mom for 4 months and hope that all is ok. If she has someone in the home caring for her and only her, their focus should be on her 100% of the time so there is no excuse for her laying on a urine soaked pad for 4 hrs. My apologies if you have already answered this, but why won't your dad take your calls? How are you getting your information...from your aunt? Did you have a blow up about all of this or is the guilt over having a girlfriend making him want to avoid you? How much longer are you studying abroad? If you are going to report your moms situation to Adult Protective Services, you need to be there to pick up the pieces should they pull her out of that home. Keep in mind that once you report this, your dad will more than likely cut ties with you, but it sounds like he sort of already has.

Loving Child, I am with you. Your compassion for your mother is admirable and touching. I hope she is unaware of your father's "other". You are quite correct that being in her own home is probably the best thing for her. I am caring for my dis-abled husband in our own home (which he designed as an architect) and I am pretty sure he is grateful (he has dementia and is disabled from post-polio syndrome). I am fortunate to have incredibly wonderful, kind and supportive neighbors and friends, plus 2 brothers close by. Some of these folks are urging me to consider other alternatives but I am resisting.

Did you say “no one is there with her”? If no one is there with your mother now then this is an urgent situation where APS need to be called immediately. You can’t leave someone with dementia and PD alone period.

Loving child, what a tough situation! I had a few thoughts…

First, your mom would want you to enjoy your time abroad, no doubt. I say this as a mom with a child your age. She would be upset if she thought your time was being ruined by her health issues.

Second, I'd approach Dad via email or text and tell him you're both on the same team, you understand how tough it is to see his wife decline and that he needs a break (kiss ass a little, in other words). Tell him you know SHE would want the best care for HIM, and given the specific things you've seen, you know another caregiver would be best, and phew, thank goodness we have the means to cover it.

Talk to the agency and express your concerns. And as others have said, ask some friends and neighbors to stop by.

Hang in there, sweetheart.

You won’t like my answer but it’s something I’ve seen and heard time and time again, the people least involved ( you said your in another country) have the most opinions on a family members care. It sounds like your making some assumptions about your parents and the caregiver. By the way it’s not typically considered part of a caregivers duties to cut someone’s nails, most seniors nails become very hard and sometimes ingrown. If they’re diabetic it’s more challenging- it’s best for her to have her nails cut at a podiatrist or cna. You’ve chosen to focus on studying and that’s completely fine but don’t turn around and criticize your dad, I’m wondering what your relationship with your dad has been like over the years if it’s possible your biased in your view of him, since he’s there it’s a fact he’s much more familiar with it than you are, and may be aware of something w the other caregiver that gives him reason to keep the current one