I need advice on what, if anything, I can do about my mom's lack of care for my dad.
My dad is in the mid stages of Alzheimer’s. He has been diagnosed and is on meds. My mom is his primary caregiver. Two sons live within 2 miles of them, I live about 20 miles away. I’ve accepted my siblings are going to be of no help, that is ok.
My worry is that my mom is not taking good care of my dad because she is in denial and mostly doesn’t want to have to deal with it.
Neither my mom nor my siblings are willing to read or watch any of the info I have sent them, which I have read and watched first. (Teepa Snow videos and a book that was recommended here, along with online support groups). I realize I can’t force them but I’m worried about my dads health and well being.
My dad, along with Alzheimer’s has: a shunt in his head because of excess fluid, a left knee replacement, a left shoulder replacement, neuropathy (sp) in his feet, and is a fall risk. He falls at least once a month.
Here are the issues I find concerning:
Mom and Dad went on a 3 week vacation to Australia last year. Mom slept almost the entire 18 hour flight home without ever making sure my dad got food or drink or got up to use the restroom (she already has him wearing pull ups and would rather just let him go in those than help him go every few hours). By the end of the flight my dad was incoherent and barely conscious. Even with oxygen he couldn’t remember anything about where he lived or who he was. They thought it was a stroke and he spent two days in a hospital in California and my 2 brothers had to drive down from Oregon to bring them home when he was discharged. Thankfully it wasn’t a stroke, he was severely dehydrated, hadn’t eaten and was getting sick so it created a perfect storm I guess. Since it wasn’t a stroke my mom thinks the entire situation was no big deal.
Last month they went to Hawaii for 2 weeks. The first day there they went on a coffee farm tour (super uneven ground) and he fell and broke his collarbone, they waited 2 days to go to a hospital.
He has started having visual hallucinations but they don’t upset him at this point.
The kicker happened a couple of days ago. Apparently they were at Home Depot and since my dad didn’t want to go inside my mom left him in the car without the keys and locked it. She was inside for an hour! My dad could not open the door and even a stranger in the parking lot tried to help him and he still couldnt figure it out. He was about to use their emergency tool to break the car window from the inside when my mom finally came out. It was probably at least 90 in the car. And the only reason I know is because my dad brought it up when I saw him.
She also just bought a new bed for their guest room so she can sleep in there because he wakes her up when he gets out of bed to go to the bathroom, and he has fallen several times already. She has to call one of my brothers to help get him up because she can’t do it by herself. She has no plan in place to alert her when he gets out of bed if she is sleeping in a room across the house.
She also still lets him drive even though he shouldn’t because it is convenient for her to have him run to the store for her or take himself to church when she doesn’t want to go.
They are resistant to having someone come in because my dad doesn’t think anything is wrong with him and my mom can’t admit they are at a point where they need help.
My question is what do I do? She does the 24/7 caregiving and it’s hard and I don’t want to diminish that. But I don’t know how to help her since she refuses to get educated about anything. She spends hours on her computer playing solitaire, looking up recipes etc so she has the time to learn she chooses not to. What are some suggestions to get them to get a caregiver. They have plenty of money to pay and I doubt they will ever qualify for Medicaid.
I am 35 with a husband and 2 kids. My husbands job means he is away from home for several days in a row and it’s never the same days each week and includes occasional weekends and holidays so I can’t be the free caregiver that my mom and siblings have assumed I will be. Thanks for letting me have a place to let out my worries!
I kept reminding her that her mom knew who the father was (he's always been narcissistic) and chose to be with him when she was young and healthy. She had a very sad and unnecessarily heartwrenching end, but no one was going to be able to change that. That die was cast many, many years ago.
So I support you going low-contact with your parents and establishing firm boundaries, just to keep YOU healthy. Your uncle can keep an eye on your father. I'd let him know you're concerned, but he's also probably powerless to effect any changes either. You can only do what you can do. You don't rule the world. {{{Hugs}}}
So, while Dr can't answer your questions about the patient, Dr should be informed of problems that Dr might not be aware of from just an office visit--unsafe driving, for example.
Thanks for the excellent synopsis for all of us!
Sticking your head in the sand is a strategy, you know. Particularly when, as in your case, you have been deliberately excluded from decisions by the people you aim to help.
Read 'Being Mortal' by Atul Gawande. Given your parents' living situation, the fact that they have the resources to support considerable freedom of choice, this book is a particularly relevant discussion about what really is in their best interests. You, like most of us caregivers, want your parents to be safe, well cared-for and happy, in that order probably, with their autonomy and dignity as nice-to-have icing on the cake. What Dr Gawande points out persuasively is that your parents' order of priorities is likely to be quite different - ranking autonomy, freedom of action, happiness and continuity much higher than you do, and accepting a much greater risk of harm.
The question that remains is at what point do you become a) entitled to intervene; b) morally obliged to intervene; and c) legally required to intervene.
As things are, the answer your mother is giving you is "never!"
Let's say, okay, never. What happens next?
If your mother had managed your father in the way that she did during those trips, if they had not been in public with other people around, your father would have died. She was "wilfully blind" to his physical needs.
Bear with me, and think the unthinkable here. Supposing he hadn't received treatment, and he had died. And?
The thing is, what we family caregivers are really aiming for, when you strip everything away, is a soft landing. We know that our elders are going to die, probably before us (though watch out - caregiving is bad for your health). We don't literally believe they can live for ever (may they live forever!). So what do we want to happen? We want them to be supported through their last years and the end of life so that they do not experience pain, fear, loneliness or neglect; that they die at their proper time, loved, in comfortable surroundings, and at peace.
I'm not saying that your mother wants your father to die. But her feelings about it must be complicated. He is suffering. He is not the man he was. His difficulties intrude on her. Even getting help for him would disrupt the environment she likes to have around her. She wants none of this to be happening. Well, would you?
The trouble we still have is that your father is a vulnerable adult. How he is cared for and protected is no longer solely your mother's business - actually, it's now a societal problem. He is not in a position to make decisions on his own behalf, so we can't ask him what he wants. But we can refer back to any statements or directives or preferences from earlier on, when he was fit and well, and see if that gives any guidance about what his choices might be now if he were still able to voice them. And it may be that no, he chose your mother, he never expected her to turn into Florence Nightingale, and he would still rather be with her, in the place that is home, than better cared for somewhere else.
Okay, next, what can be done for him if he isn't to be "rescued"? Your mother doesn't want a team of caregivers coming in and tramping round her house and needing supervision and BOTHERING her. She doesn't mind if you do it because she can control you - never mind that you're not a trained nurse or personal care aide, that there's only one of you, that you have your own life. Well! - you can't force her to compromise there. You can only find out what services are available, and keep prompting her to consider them.
The other thing you can do, and I would loudly, is insist on objective assessment of your father's condition and needs. You are free to tell whomever you like about your concerns and about what you have witnessed. You can tell your uncle, your parents' doctor, their local social services, anyone you like. Most families get pretty shirty if one member talks about family business to outsiders. Yeah? And? Bite me. There is an expression: "tell the truth and shame the devil."
Consider the difference between these statements, just for example:
"Mother won't help dad with washing or dressing, she just leaves him in his soiled clothes."
versus
"Dad needs more help with washing and dressing."
One is an accusation - mother is being a bad wife, callously indifferent to her husband's suffering.
Two is a statement of your father's needs.
What you want is not condemnation of your mother's shortcomings, it's improved support for your father. So keep your opinion of your mother to yourself, and just keep plugging away to get your dad what he needs.
First I should have probably started with the fact that they aren’t telling anyone my dad has Alzheimer’s. They just say he is slow.
As for my parents finances they have over 1.5 million in a retirement account. They receive over $5000 a month from Social Security (which than what my husband makes). In addition to that they receive around $70,000 a year in land rent from the farm. Their house, car and land are all paid off. The farm pays their electric and water bill. So they have a lot of disposable income. Which is awesome that they were able to pay everything off several years ago.
The farm itself (buildings equipment etc.) is a separate entity that my brother, uncle and cousin own as they are the ones who farm. Plus my parents sold a business they had shares in 6 or so years ago and received around $100,000 a year for 5 years from that. This is their first year not getting that influx I think, and that money has been spent, none was saved for future possible care needs. So I feel they have had the means and ability to save very well for their care needs.
My dad was diagnosed before this sale so they had the ability to plan. They have an estate planner and a financial planner so seem to have that all taken care of.
They would never let me go to a doctor appointment or have any access to doctors.
I am all for my mom sleeping in another room to get a good nights sleep. What bothers me is she has literally no plan for having any sort of set up to alert her when my dad gets out of bed. The rooms are on separate ends of the house. She has had to call my brother to help my dad get up multiple times in the past year, so he has already established a pattern of falling.
This week has been eye opening because she asked guess who.....me if she could hire me to watch Dad. I said I could if I was available but she needed to have some sort of back up plan because I can’t do it all the time. I was hoping this would help he transition to finding and hiring caregivers. She got pissed that I asked her that and told me she wanted to be in charge and didn’t want to talk about it any more.
My mom is definitely narcissistic and my oldest brother is the golden child along with his wife (who is definitely narcissistic, I have witnessed the narc rage although I called it an adult temper tantrum) and their 2 children. I am definitely the family scapegoat.
I finally went and talked to someone about all of the anxiety and issues I was having and they recommended the book called Boundaries. I read it and oh my word was it eye opening and freeing. I have spent my whole life thinking it needed to make my mom happy. Knowing I am not responsible for her feelings and especially for fixing her irresponsible choices lifted a huge weight off my chest. It’s sad it took me this long to find out how normal relationships should work.
Anywhoo, she admitted she had not back up caregiver plan other than me and had no interest in making one. Then tried to guilt/shame me into complying and just being the family work horse again.
So, I realized her pattern of behavior wasn’t going to change and set some boundaries. She got pissed and decided my dad would be going with her because the housekeeper would be there that day and he didn’t want to stay there. Which is not true she has left him with her before and she’s the sweetest lady ever and he has no problem with her. I realized I dodged a bullet and told her that I needed to take a break from things to work on my own emotional/mental/physical health problems and I loved her and would still be part of family get together and would respect her wish to not talk about anything and only engage in small talk. So I will be low
contact from now on with my family.
My brother and his wife would never want to travel with my parents because they have no interest in doing any actual hands on caregiving. They went to the Cayman Islands with my parents and would leave my parents at the condo and go out and go snorkeling and do stuff. So they would not be helpful. There are no friends to go with them because my moms terrible behavior has driven them all away.
What do you guys think about this idea? My dads brother who is a retired Dr. lives a few miles away and does visit my dad regularly. Should I talk to him and tell him what is really going on and see what his advice is? My brother said he would watch the situation over the next couple of weeks and see how things are going, but he really thinks that just talking to my mom about her behavior will make it change, it won’t, I have tried for 2 years in every way possible. But maybe if he sees she won’t change then he will be on board with paid caregivers. Or maybe I’m just sticking my head in the sand too.
Thanks again for reading and any advice. I’m so thankful for this group!
This didn't work for my in-laws because Mom wouldn't relinquish any of the care-giving--she just paid the care-giver to sit around--but it sounds like your mom might be accepting if you presented it as getting his care off her back so she could have her own fun.
Perhaps you could suggest a doctor visit for your dad before the next trip, "just to make sure he's up in shape to travel, since he got so sick the last time," and tip off the doc in advance so he can address your dad's needs, including driving competence as well as the freedom it would give Mom to hire some help.
As others have mentioned, it's a good idea to visit an Estate Planning or Elder Care attorney NOW. You may find that your dad could qualify for Medicaid in the future while preserving the family farm, if that's what they hope to do; but if you wait, opportunities may be lost.
That is the life force in her and it is still a powerful energy. For that all her children should be grateful. I suggest a kindly, no-blame meeting to discuss what is possible to help both parents have what they would like to see happen come true in their retirement years.
Look at mom for some issues too - your dad should not be flying all over the place - does he want to go or is it mom's not too brilliant idea?
AAA is going to email me a list of geriatric assessment providers, which may or may not be covered by Medicare. We may have to private pay, who knows.
I realize each state is different. I just wanted to share what I just found out ASAP.
If God is with you, who can be against you? This is a hard trial but, you can approach it lovingly and full of compassion. Maybe SIL can be moms travel companion, this will give you a chance to get a caregiver or 2 or 3 in place for dad. Removing them from their home is not the only solution, let mom cook and clean, have caregivers do only for dad. You will never change your mom, so forget that front. You will be able to get your dad the additional care he needs by persistence, love and compassion. Always present the situation to your brother from the side of, if dad fully understood don't you think he would want to take this burden off of mom? It takes a very strong person to stop being the narcissists whipping post and be able to not jump and fetch and dance and do their bidding, children raised by one are conditioned from birth to follow orders blindly and without consideration for anyone but the narsisist. Pray for your siblings to have their eyes opened.
May God give you strength and courage along with wisdom for this hard trial. By His help you can do this! God bless you for caring enough to say, time for change. HUGS AND LOVE 2U!
It sounds as if your mother may have diminished mental capacity, too, or perhaps she has always had NPD.
Still, it is very difficult to have someone declared incompetent in order to have them put into a care facility or take over their finances.
One attorney told me that a person can be walking around in their skivvies, talking to unicorns and you still may NOT be able to have a court declare them incompetent enough to have them admitted to a care facility against their will, or take over their finances, against their will.
Getting your social services for the aging, in your state, to evaluate them, may not do much good. But it will at least document that you cared enough to call them.
As far as having help come in, given your father hospitalizations, a CNA might be paid for by medicare for a few days a week.
The reason many older people are reluctant to have in-home health care is because If you talk to older people, they will often tell you horror stories about thefts and secret mistreatment from these people, that they have heard from other elders who have had them in their home.
There are six states that do not even require a criminal background check for nurses.
the nurse licensing systems in Colorado, Wisconsin, New York, Vermont, Maine and Hawaii rely on self-disclosure and complaints. The porous process allows nurses disqualified from obtaining licensure in other states to obtain a license in one of the six states with less scrutiny.
beckershospitalreview.com/human-capital-and-risk/6-states-don-t-require-background-checks-for-nurses.html
Therefore, once hearing such horror stories, many elderly afraid to have in-home health care workers whether a CNA or a nurse come to their home.
Also If you mother does have NPD rather than dementia, you will not be able to override her caregiving decisions regarding your father, only social services can do that, and that is only a maybe.
But "they did not need any help"..........
In my neighbor's case, the husband was taken in by family, then placed. The wife placed in a senior apartment without care and died from a diabetic coma within a few months.
What I saw happening is that no one took any positive action in time. It was too late, and hapened over the period of approximately a year from the time some family members were notified of their needs.
It is not an easy course you are a part of. Decisions have to be made that never sit well with us kids. If I had to do it all over again, I would have moved him into my house and gotten care for him, and helped out too. It would have been a big job, but he was so lovely and kind and I had great love for him and I was broken to see him the way he ended up. I would have been happy to do it. That is my only regret. So I traveled back and forth to see him every other week in the NH for months. When my dad died, my mother had no one and so guess who lives near me now? Yep. My demanding mother who wants me to do everything for her. She has been here for over 6 yrs and is 92 yrs old now.
Sorry for the long, depressing version. I wish my parents had made better plans for themselves in their later years. There is no fast, easy answer and we have to reap the outcome of their decisions. Hindsight is 20/20. Go with your gut and move on with what you think is right. You can be more objective than your mom and I hope your brothers help with the decision making too so it’s not all on you.
There is a government plan to protect the Well Mate's assets! The assets are divided; some may be put on hold. Enough remains for the well mate to live (and to keep the family home, if it is paid for or w/in the official limit, mortgagewise). And the one in need of care goes on Medicaid!
It may not be of interest to your parents - or family - for now. But it's worth knowing about, even planning for the possibility in advance.
This would have covered much of my husband's care, if we'd known about it in time. It may take months to get it in place.
A good Elderly Care lawyer will know how to set this up.