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!
And I think if someone doesn't have the experience to recognize some symptoms, there's more likelihood of missing critical issues. How we can alert ourselves to those critical symptoms isn't always an easy task. I think it can be easy to rationalize a situation and miss the telltale signs.
I've been thinking that caregiving classes should be more available, perhaps through hospitals, or SNFs or memory care facilities. I would have welcomed insight on how to detect signals of change or other aspects of aging, including for myself.
I really think people need caregiving classes more than they need the literally proliferating exercise classes with gimmicks. They remind of the classic line in Gypsy - that "you gotta get a gimmick." Whatever happened to just plain exercise?
Gardengurl, I wish I had some advice to offer you. It must be painful to see your father being mistreated or ignored, but right now the only recourse I can think of is involving APS. But you don't really want to punish your mother - she just may be missing the seriousness of the situation.
Does she take him to medical appointments, and if so, could you brief the doctors before the appointments so they know what to look for and how to raise the subject of proper care?
Would she read any literature on Alz? Or go to any free classes? Do you think the preoccupation with solitaire is an escape activity?
If she doesn't want to care for him, could you bring in help, or would she resist having a caregiver in the house? Perhaps if you interviewed agencies, tried to set up some meet and greet situations....would she be more responsive if you took the initiative to get help?
Another thought is to contact the Alzheimer's Assn. and ask one of the social workers for suggestions.
Armed with this info ( what the level of care needed, available resources) you can perhaps have a plan in place for when mom falls ill and dad needs more care; or if dad falls ill, to provide a baseline of his functioning.
has she always been so self centered or is this a new development?
Leaving all that aside how has their relationship been over the years. Does Mom really dislike Dad and simply wants as little to do with him as possible?
I know it is a HUGE ask, but this way you can assess him, see what it is like to actually walk a mile in her shoes and may be get Area Agency on Aging to get an assessment done?
The biggest problem with doing this is, that you get sucked it and end up taking care of one or both on them. So be careful!
Such a problem. Good luck.
I only want to say that do not offer to be caregiver, if they can afford it, it should be a trained professional. Your brothers think you should offer yourself for free caregiving aid, are they worried about their inheritance?
See if you can convince dad to wear a life alert, this will provide help when he falls in the night.
It sounds like your mum is playing ostrich or she herself is having some cognitive issues.
As others have said, sometimes it takes an emergency and pray it's not a tragedy that could have been avoided.
God be with your parents and keep them safe, and may He send you answers and help so they are both getting the help they need. HUGS 2 u!
My mom has always been self centered and unable to have empathy for others. It wasn’t as obvious until now just how bad.
I grew up in a multigenerational farm family, my brother is the 3rd generation and one of his daughters will probably be continuing that tradition to make it a 4th generation. So my dad was very independent and a hard worker and would still be working if he could. He finally had to retire at 72 because of the Alzheimer’s, although I don’t think he retired in his mind. He will be 75 this fall.
I do the majority of their lawn and garden care (about 1.5 acres of lawn and flower gardens). So for a good part of the spring/summer/fall I am there and my mom makes sure to send my dad out to ‘help’ me. Which is fine with me because he is the sweetest most kind man. He is happy to hoe weeds and then sit and rest where I can see him. Sure, I have to modify what I am doing and make sure he is doing something safe while still feeling like he is contributing. My kids love being there and working outside too and my six year old even helps by bringing us glasses of water every couple of hours. I always make sure he has a snack or lunch depending on what time of day it is. When we have family functions I usually sit next to him so my mom can interact with others and have a good time. I know this is not at all the same as 24/7 and try really hard to remember that and not be unfair on her.
There was another incident last night. My brother was by their house feeding heifers (the pen is less than 200 feet from my parents house). My mom decided my dad needed exercise at dusk and sent him down to my brother to return a pan. My dad often falls when he gets going because he can’t stop his feet when he gets going, this is not a new problem it’s been going on for years but is getting worse. My brother wasn’t able to get to him fast enough so my dad fell, hit his head and had to go to the hospital for stitches. My mom didn’t even go and instead made my brother take my dad. He then had a reaction to the numbing medicine and his heart rate went really low for about ten minutes plus the hospital said he was dehydrated.
The only good to come from this is that my brother now actually agrees that we need to meet with mom and talk about things. Unfortunately he thinks talking to mom will then cause her to suddenly become a capable caregiver. I’ve been trying that for over 2 years, it’s not going to happen. So I am hoping to get him and mom on board with hiring in home caregivers. Hopefully that goes well, we are going to meet within the next few days. I already have information about in home caregiver agencies ready so hopefully I can at least make my brother see reason. He is the oldest and my parents tend to listen to him while treating me like I’m stupid and have no idea what I’m talking about.
My mom is definitely in denial. I think her vision of retirement was lots of traveling plus she was used to my dad working all day and she was free to spend her days doing whatever she wanted. She hasn’t accepted her new reality and has a 2 week cruise to Alaska already planned for this summer and is talking about a trip to the British Isles next year.
I suppose I will see how the meeting goes and then decide what to do after that.
First, you can stop looking at your Mom as Dad's caregiver, because she is no longer qualified, may be burnt out too.
If this continues down the same train track, an intervention will be necessary, and they will be separated into different facilities or housing. That is never ideal.
Looking for an assisted living apartment for both to be together could work, if it i s not too late for that.
This was his reply:
I think she is probably right but we need to make sure if she needs a break we step in. Cooking and cleaning are things that Mom loves. So I think she actually gets enjoyment out of taking care of dad. She likes to feel needed. She also doesn’t want to feel like they are giving up their independence. I think this last fall that dad just had has made Mom realize that she cannot have him do certain things. I guess we will try and monitor that here in the next couple weeks and see what he is doing. It is a tough situation because 99% of the time dad is not doing much and he is perfectly safe and happy. We just need to make sure mom knows what he is doing. And does not tell him to do crazy things!
My brothers involvement so far in taking care of my dad is to stop by the house for cookies and cakes that my mom always makes and trips to the ER with my dad and the occasional overnight stay if my dad has to be in the hospital overnight because my mom refuses to stay at night.
He is obviously in just as much denial as my mom and I feel there is nothing more I can do. I will not enable my moms terrible behavior. She won’t even turn on music or a tv show my dad likes when he is spending the entire afternoon sitting in his recliner. She is mentally and physically capable of caring for him, she chooses not to. He can still get dressed, showered etc. and in and out of chairs by himself so she isn’t having to physically maneuver him.
I am pretty angry right now but I have to step back. If anyone is so inclined I would really appreciate prayers because this is going to be hard. My brothers wife and my mom will be telling anyone who will listen what a rotten horrible person/daughter I am once they realize I am not going to be the child that ‘steps in to give her a break ‘
We don’t live in the same town but they are both rural and close enough that everyone knows everyone, or is somehow related, lol. They both have pretty narcissistic personalities so this will be nothing new.
I have done all I can and whatever happens is on them. I am so thankful to all of you here, I have no one to talk to about all this who has dealt with it.
Someone needs to get to your mom and kindly and lovingly talk to her about what’s going on. If they can afford those trips, they should be able to afford an aide to come in once a day. The aide can monitor Dad’s health and well-being, and Mom’s as well. The aide can also suggest alternate placement and put it in such a way that Mom and Dad will agree. Unless you’ve walked a daily mile in Mom’s shoes, you don’t know the day to day trials of what she’s going through.
My Mom was the same way except she was a helicopter spouse when it came to my Dad, thus very caring and hands-on but not realizing that being in their 90's, a simple fall for someone decades younger may result in no injuries, a fall when someone is in their 90's can be worrisome.
My Mom was still seeing Dad as this guy who could fix anything on her honey-do list, thus still thinking he was in his 50's instead of in his 90's. My Dad was still climbing up tall ladders. Also Dad would tumble over when outside pulling weeds. He would tumble over when trying to tie his shoes when sitting in his recliner. It wasn't easy for him to get up.
My Dad was just as much at fault regarding denial. Whenever he went outside he asked my Mom to keep a watch for him in case he fell. Dad forgot that Mom was legally blind and had lost most of her hearing. Numerous times neighbors would find Dad face down in the dirt, and my Mom looking out the window not quite sure what she is seeing... [sigh].
I tried to lure my folks into a tour at a wonderful retirement complex which had an indoor pool [Dad loved to swim],and very large 2,000sqft apartments. They looked at the brochure and said "maybe in a couple of years"..... oh, great guess they are waiting until they are 100 !!
Many of us here had to play the waiting game. Thus wait until something very serious happened before anything could be change. My Mom refusal of caregivers and moving into something safer was literally her down fall.... she spent her remaining months in long-term-care. And Dad sold the house and moved to Independent Living.
Your mother isn't in denial, she is in hiding.
I don't blame her. She must be furious to find herself dealing with this. She is stuck with a useless deadbeat imposter instead of her husband. It is onerous, strenuous, depressing and miserable; and the light at the end of the tunnel really is only an oncoming train.
But your father needs better care than this, and your mother needs MUCH better, more structured support. The family isn't listening to you. Fine: then let them hear the reality from the professionals.
There is a plan to protect the Well Mate's assets!
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.
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.
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 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.
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!
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.