My mother needs assistance but is refusing in-home care and moving to assisted living. I live 3,000 miles away, and she expects me to move me and my children to her to take care of her. She has the financial means to get in-home care but doesn't trust anyone in her home.
Every time I talk to her I get a guilt trip and I question her state of care. I do have a sibling that lives 15 mins away that sees her 2x/week for about 2 hours a visit. My sibling doesn't do any care for her around the house. Their visits revolve around their family events or a lunch out.
I try and take 3-4 trips a year to visit her as she is not able to fly.
I feel like I have abandoned my mother however I have a family to also take care of and she refuses to come live with me.
My question is what do I do??? I feel so hopeless and I have a lump in my chest when I call her daily.
Be appreciative of your sister's visits. That's four hours a week you don't have to worry about your mom. Finding someone to come in and do housekeeping is doable. It will take coordination and exploration but it can be done. Also, social security will sometimes provide personal care several times per week such as bathing, doctor's visits and other support. That's a few more hours per week you can get relief from worry. It's not all that expensive to hire someone to go in and doing some housekeeping for your mom. Its a lot less expensive than you traveling all that distance and you will be in charge since you'll be paying their wages.
The dynamics you're experiencing with your mom are probably the same ones that have been there all along. They just get exaggerated. Dementia may make her more demanding and less cooperative. Hold your ground; you're not wrong. She's not "the mother" in the same sense as when she was before dementia took over. You are entering the role of "parent" to your mom. Treat her as you would want to be treated but also be reasonable.
Throw away the guilt. Whatever mistakes you made in the past should stay in the past. Don't let those mistakes decide for you how to treat your mom now. Guilt is a lonely partner and a very unreliable "friend." Stay in the present in your interactions with your mom. If she gets too difficult, kindly say you'll call back when she's feeling better or when you're free to talk more at length. She may get mad, temporarily, but that's no reason for you to be bullied into things you know you can't do or you know aren't the best decision for her, your family, etc.
One last thing. Please don't let this situation be a catalyst for resentment between you and your sister. Even if you don't see it that way, treat her efforts as the best she can do right now. All the resentment, fear, worry and guilt you feel are probably also in her heart. Your mom wants what she used to have before dementia and probably what she had before she aged. She can't have that right now. If she has a hope (hope for future life such as is promised in the Bible) she may regain what she once had but for now, you and your sister are dealing with the reality of what is, not what your mom wishes could be. Stay practical and deal with the realities of the situation; don't be guilt-tripped into doing what someone who isn't facing all the facts of the situation wishes could be.
Give yourself kudos for caring. You've made the offer to let her go live with you and she has turned you down. Don't call her daily. Send cards, order her favorite food be delivered once a week, write her letters she can read again and again. Look up recipes she gave you long ago and make copies giving her written accounts of ways you've used them over the years. Send her thank you cards for her being your mom (some people actually do that other than on Mother's Day only). Buy her some new slippers or a pretty nightie and send them. These are all ways that you can show her love and not have to deal without that lump in the throat every day. Conversations that upset you every single day are not helping anyone. There are ways to let her know you love her without tearing yourself apart. Sure, call her but not every single day. Show her love in ways that help her and give you peace of mind.
I hope some of these suggestions help. Do all you can but be reasonable.
Speaking from experience twice over.
YES.
It took me a while to see that, but once I did - wow - it made so much sense!
I have since seen this same pattern playing out again with others & heard of from friends & colleagues too (+ of course this forum).
I almost relocated to live with my LO when they wouldn't move closer. This was after having a paid "companion" sit with them a couple of times a week for 6 months. Thankfully, when it became very clear that I was seriously prepping to move in, they changed their mind about moving closer.
Self-care is important and quite easy to put off, or ignore all together. I did it and had to regroup too many times. Thank goodness I spoke up to friends and family who were around and wanting to help me.
It is not mandatory for you to take care of everything. Speak up for what help you need from your sibs. If they can, or will, they will help. It is not your responsibility if they don't. She is their mother too. Seek out caregiver support groups in your area. It can be beneficial to be among others going thru similar situations and talk freely on a consistent basis.
Good luck. You care and that is commendable.
It's hard but often it's the only choice.
The stubborn elder who needs care is not in charge of things anymore. Families make the mistake of continuing to be obedient to their demands. Often this means giving up their lives, neglecting their families and relocating because a pushy and stubborn elder refuses to allow anyone but them.
No family should ever go along with playing that game. Either the elder accepts the help they are offered by their families, or their first exposure to caregiving will be done in a nursing home.
I totally understand the lack of trust of having someone in your home. I even give my sister grief about it. She wouldn't steal anything, but she puts everything in the dishwasher, even things that are not supposed to go into the dishwasher and she doesn't put things back where she got them from. So, yes, I understand.
However, you do not have to be the recipient of her guilt trips or a participant of her pity party. She is choosing not to get extra help and thinks uprooting you and your family is the solution to her troubles (it isn't).
What are the other realistic alternatives? Maybe all she really wants to do is complain because it is easier to complain than it is to suffer the consequences of a decision. Maybe she does what she does to you because she'll get the response that she likes from you. Sucks, eh?
How do you want to be treated? How would your like conversations with your Mom to go? Try and steer the conversation in that direction.
If she continues to complain, I suggest you try and find a therapist who can help you with dealing with her complaints.
Good luck. This is the time you need to be strong....don't feel hopeless as you give your strength and wisdom away to others when you do that. Your family, not your Mom, needs your strength and wisdom.
I had her entire house carpeted with the thickest padding. I had grab bars installed throughout. I feel much better with her at home as her safety is better. Quality of life now.
She sounds like at this time she could maybe just use some help around the house. Perhaps you or your sibling could find someone she trusts nearby ...like a neighbor or friend to help with the yard or housework. She could pay them and it would be a win win. If she needs personal care than check out what services are available and help her find one trustworthy. Unfortunately your mother is absolutely right NOT to trust them. There have been many problems with theft and abuse by those visiting ...so be careful and protect your mom best you can.
Do NOT try to get her to go into a nursing home ...unless you want your mother to have an early death! The abuse and neglect in these homes is off the chart and many people when they go in there just wait to die! Do NOT do it! They killed my sister during the lock down with severe neglect. No food or water for days!!! Please keep her out of these places.
this has been over a year now - my suggestion is you have done what you can you are not going to move and take your kids away from everything they know. your mother is being stubborn and unreasonable and selfish BUT that's the way they get. I took care of my dad and he was a handful, now it's my brother. i say let her stay where she is, get her as much help you can visit when you can and that's that! you love her and aren't abandoning her but you have to love yourself first. God Bless
1. Does your mom still have legal rights to make her own decisions?
YES- And Mom still makes good decisions in other areas of her life?
--- Then tell Mom, " I am not available to help you further physically and / or financially. . You need to make other plans. "
And you inform her doctor of your boundaries and that you aren't available further because cost is too high to your family, your career, your own financial stability. It will be one- way communication; her doctor has to protect her privacy.
---- NO - Mom is making goofy decisions? Such as: overfilling bathtub to create a flood, starting small fires, wandering and getting lost, putting odd things in fridge, putting day clothes on over pajamas? Short term memory getting really poor, much worse cognitive ability after sun goes down? These are examples of onset of dementia.
Doctor needs to know. If this is the case, doctor and you can petition court to appoint a guardian for her.
You can then go as a witness - do not volunteer to be even temporarily appointed as Guardian. If you are out, you are out. Any give means you could be pressured to serve longer. If you are in your "red zone" - you can show if necessary that you are not available.
1. impacting your health - you probably have health records if it comes to that (and shouldn't because the Hearing isn't about your health, only your Mom's. If ask to be appointed, then court would want to verify your stability). This includes you have disabilities which make it impractical to do what is needed ( can't lift 50 pounds, issues with walking, standing, stooping, bending, twisting, turning, sleep or anxiety disorders, bipolar, clinically depressed, have PTSD, etc.
This also includes if you are a survivor of childhood sexual, physical, emotional or mental abuse or trauma by parent in question- or this parent enabled the abuser, and you have unresolved severe anger issues blaming this parent
2 risk of losing career or job and you or family need the income
3. are you under contract or assignment and can't do both - on a grant for research?
- a licensed professional who isn't available ( surgeons/ doctors, first responders (police, fire, EMTs), lawyers, accountants, forensic investigators, architects/ engineers, union workers, entertainment industry professionals ( behind the camera and talent), overseas contractors, active military
4. risk of financial wipe out of financial assets
5. risk of losing your business- would cause others to lose their jobs
6. impact on your family - spouse / partner with disabilities or special needs kids at home?
7. Other care commitments elsewhere
8. You live out of state/ province or country
9. If you run any charity almost single-handedly, this can be included
10. Family pets might need rehoming if you are traveling back and forth and not around to give them proper attention. Many pets also are emotional support animals. If yours qualify, get a letter of acknowledgement from your doctor. Many pet owners ( or pets who "own" their pet parents) consider the pets as their four-footed kids. In law, pets are a property. Law has not caught up to present day thinking.
About 14 states have elder abandonment laws.
MY STORY:
I ended up court ordered in a state and country where I didn't live to care for my elderly estranged parent who killed my mom. My mom and I were very close. I am a childhood sexual and physical, emotional, mental abuse survivor of that man.
No lawyers I talked to told me to go to court and appeal that ruling! I was stuck 3-1/2 years with his BS. Daily abuse and his threats by phone. His mind was still very razor sharp at 93. He was a pedophile, sociopath, narcissist, charming or chilling depending on his need. He was former KKK.
I lost my company. Furloughed contractors. Wiped out financially.
PTSD reactivated.
DO NOT GET STUCK! Let Mom or others figure it out. Not you
Why was your father not made a ward of the state he was living in.
I don't understand why you did not seek out the legal services of a lawyer in the state you were living in.
How can there be abandonment if you do not even live in the same state as a person?
Guilt is self-imposed. My husband had no guilt when it came to his Mom who chose to move 900mls away from friends and family. A 2 day trip by car so not one we took often. After my FIL passed, she chose to stay there but started the "you need to move down here". When my DH worked, it was "there r jobs down here". When he retired, it was "there is a house for sale". She got me on the phone one day talking about the house behind her up for sale. My husband had never told her "no its not happening". So I did. "No E we are not moving to Florida. I have my Mom, girls and grandson so I am not moving. She said Mom could come with me. I said No, she has her Church and friends and I am not asking her now she is in her 80s to uproot herself. You know what she said "We all have to compromise" I thought, Yeah E, everyone but you. We all change our lives because you want something. I think that is the last time she said anything to DH about moving.
I think the elderly forget what its like to have a job and raise children. The time that goes into working a f/t job and getting the kids to their xtra curricular activities. It is not realistic to think your going to uproot yourself to move 3000 miles. Her moving near you is unrealistic too especially when ur sister does seem to be there for her. Maybe not what Mom wants but she is there. Never consider moving Mom to you.
I would wonder why its so important for you to move to her. Where you the child she could manipulate? The one she could make feel guilty. If so, you definitely do not want to move there. You will become her 24/7 caregiver. She will have you doing everything for her. Stay where ur. Its not want she wants but what she needs. And something will happen where her need will be an AL it LTC.
Love "Nothing will get an elder a one-way ticket to a nursing home faster than being stubborn". This is so true. She needs to realize this. You need to be firm and say "One more time Mom, NO I am not moving 3000 mls. You have the money to hire the people you need to help you. I am not being your Caregiver, I am not giving uo a job I need to support myself to be your Caregiver. You either hire aides or you go into an AL. We will not talk about this anymore because its not going to happen. If we can't have a conversation without you bringing this up, then I won't be calling as often and I will hang up as soon as you get started."
Her demands are ridiculous and my brother and I deserve to have our own lives away from her
Mom gets to live her own life too. Some people enjoy sharing their misery and discomfort. If she is basically OK, no out of control health issues, adequate food and sanitation, then she can complain all she wants and you can chose to listen or not. I vote for your calls being about her grandchildren, short and sweet.
Listen to your sibling. Support the one who is closest and most involved. They need and deserve it. When they decide Mom must move, then you can take a trip and help. Otherwise, nothing to feel guilty about.
Make sure she knows this.
Now, I want you to show your mother this post. I have worked as a caregiver (mostly to elderly) for 25 years. Homecare and assisted living.
I would tell her what I have told so many, many other elderly people who were being stubborn and refusing all help if it wasn't going to be done by family members of their choosing.
"Nothing will get an elder a one-way ticket to a nursing home faster than being stubborn".
No truer words have ever been said or written.
So it's either accept the help that you arrange for her or she's on her own. It won't be long until the state places her.
Don't you play her games and fall for the guilt-tripping and manipulation.
You have not "abandoned" your mother. You are willing to get homecare set up for her. You are willing to manage all of it to help her.
Many of elderly "loved ones" aka senior brats think that unless their families are willing to jump through hoops, cater to their every whim, and give up their lives to live in miserable servitude to them then they're abandoning them.
Pleasr for your own sake and your childrens' don't get guilted into this. Stop calling her every day.
When you do call her refuse to discuss anything that is not related to setting her up with either homecare services or her moving into a senior community.
A crisis will happen. Then your mother will no longer be making her own choices between homecare and AL. The state will and she will get placed in a nursing home.
Show her this post. If she values her independence, she'll knock it off with the being stubborn nonsense.
My mother long before she was a senior has always guilted us kids to whatever she wanted. Now that she’s an elderly woman we are exhausted.
Set the example of what’s acceptable for your kids, don’t kill yourself helping folks that are being selfish. Politely guide them in the right direction so it doesn’t become generational.
As I read your post, I wonder, is the social withdrawal typical for her? What was she like when she was younger? Some people are introverts, and they aren’t going to change into more outgoing individuals as seniors. Perhaps her inability to get involved with others is related to anxiety or she may be experiencing grief from entering a phase of life during which she is losing her independence. Just a couple thoughts!!
One idea might be to invite her to your home regularly for a nice long visit. When I was a kid, my grandmother would come to visit for a chunk of time (3 or 4 weeks). I loved that and cherish memories of those visits. Maybe once or twice a year, your mom could do something like that. It doesn’t solve your problem, but it gives Mom something to look forward to.
Another thought I had was what I did when my mom needed help cleaning. I had a friend who did housecleaning on the side. My mom “did her a favor” by hiring her a couple of times per month. I was with mom while she met with my friend and during the first time she came by to clean. My presence at those initial times made a big difference. She NEVER would have followed through without me there at first. My friend even brought along her sweet young son to do his homework while she cleaned. He definitely was more interested in chatting with my mom than homework which of course Mom loved!!
My cousin, who is much more assertive than I am, told her mother that she had to do ONE activity a week. She somehow got her into a bowling league, and that was her only “thing.” Her mother ended up absolutely loving that.
Baby steps are usually best for elders during times of transition. I’m glad you have a sister to collaborate with! Perhaps you two can think like teenagers again and figure out ways to gang up Mom to get away with what you want.
Best wishes! Let us know how things work out!!
She has chosen not to cooperate.
SHE'S the one who needs care and thus needs to be the one willing to be flexible.
You have no reason to feel guilty.
The lump in your chest is "waiting for the crisis". Talk to ANYONE who has had an elder in their life and they will understand what you mean.
Most of it, I did not mind, but I CLEARLY drew the boundary line that I would be HOME with my spouse in the evenings and at night. I worked on her for over 2 years trying to convince her to move to assisted living. Finally her health got so bad that even she realized she could not stay alone.
As many have stated here, the health issues and falling injuries make the decisions for them. DO NOT uproot your family. DO NOT!