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My mother was recently diagnosed with dementia about a year ago and my dad recently passed away 6 months ago which made her dementia worse. The doctor also took her license away about 3 months ago. I have two older sisters that live about 2 1/2 hours away and I am the only daughter in the city where my mother is. Since my dad passed away I moved in to help my mom cope but I have also became the primary caregiver for her. I drive her to the grocery stores and doctors appointments about 2-3x a week. We also hired assistance to pick her up twice a week during the day while I am at work.


The problem I am facing is that when I ask my sisters for more help they either get angry or tell me to ignore my moms requests for wanting to constantly go out. They basically say there is nothing they can do. My one sister has not been home since August and the other one comes home about once every two months. When they do come home they only stay for a few hours and never ever pick my mom up and bring them to their place to stay. They have more than enough room two huge homes. I feel like they don’t care and can’t handle my mom's situation and has left the burden on me. Every time I ask for help to come home often they get angry and defensive. My one sister does not work and I feel she could be here more often helping. The only support they offer is paying her bills. I’m kinda frustrated because I need to move on with my life and start a family and get married. I feel like this burden has been left on me.

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If Mom has dementia, siblings should not be the ones caring for Mom. Mom needs live Medical Professionals. There are Medical Professionals that will donate their time and expertise for Dementia patients. Mom would stay and home and have three Medical Professionals serving strictly her. The only cost is providing meals and lodging for the Medical Professionals.
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Isthisrealyreal Nov 2018
What planet is this available on?

I would not be able to trust a Medical Professional that would live with 2 other Medical Professionals to care for 1 person and only want room and board. If it sounds to good to be real, because it is.
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I stopped asking because my only sibling is a huge disappointment to me. If I have him stay with mom while I do errands, he doesn't have her check herself ( incontinent) and when I return she is soaked. He will have the TV volume so low she can't hear and watching something not appropriate for her. I have POA so if mom gets too much for me because of my own health issues, he will just have to visit her wherever she may be. Good Luck.
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I have the same problem. Although my husband has died and I am alone but so are my sisters and I am the youngest, too. The oldest sister is helping out three times a week watching my mom till I get off work but the middle sis lives in Oregon and doesn't get out here very often. So the burden falls on me. I work full time and live with my mom but I need some time to myself. She says all I have to do is ask but I feel like if she is watching her that I have to get home as fast as I can which I don't know why. My mom is getting worse by the day, you would think her other daughters would want to spend more time with her. Its just sad how one sibling ends up doing all the work and sometimes I feel like I am getting Alzheimers now. Who is going to take care of me? Just a sad situation all around.
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Unfortunately that task usually does fall to one sibling. Strange but true. You would think they would have more empathy and realize how hard it is for ONE person to handle so many responsibilities but alas that is the sad truth. I just know that when I feel overwhelmed I know that I have done everything humanly possible and within reason to assist my mom. She is still very independent but that will not always be the case and it's still hard to give up freedom, privacy, and life as I used to know it. I do plan to acquire services when that day comes. This forum definitely helps!!!
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I have not read all the responses but I would like to say, forgive me if it's redundant, that her going to stay with them, even if they would agree, is not a good idea. Alz and dementia patients have a very difficult time with change and it could cause further rapid decline. They need routine and security, moving hither and yawn is way to hard, so please do not pursue that avenue.

Also, I am sorry that you feel abandoned that they will not physically help you, but we all get to decide how much we are willing to help. If you didn't consult with them about your moving in, you can't really expect them to back you up. They didn't make that decision, you did.

You would be better off accepting the financial assistance and hiring an aide. You can not force them to care more than they do but you can cause a life long fracture.

Mmaybe its time for mom to be in a facility that can provide her with 24/7 care. It is hard to make that decision, but sometimes it is the best option. Then you can be her daughter again and perhaps have some more good times and happy memories.
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Does your mother have the resources to move to a memory care community? It is best to make the move while she's still able to adjust well.

You should not have to shoulder the burden alone, but your siblings have the right to differ with you in their opinion of what is the best way to care for their mother and maybe that's moving her to a community.

If they don't want her to move to memory care AND don't want to help care for her, then that's another story. If they are offering to pay the bills, hire a home care companion for as many hours a day as you need and get on with your life. If they won't take her when you need a break, arrange for a respite stay at a local community (usually they'll take someone if they will stay for at least a month). Your siblings can pay the rent.
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Stop trying and get someone who CAN and WILL help.
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First..you can not get them to help unless they want to help so look elsewhere.
Start looking for Adult Day Care for your Mom. This will give her a place to go, friends she can make, things she can do. Some also go on outings if she is able to join in.
Sooner or later you will not be able to leave her home while you go to work. She will either need a care giver or she will definitely need Adult Day Care, or you will have to look for a Memory Care facility for her.
If she has the funds look into that. If she will have to go on medicare start the process now. Many facilities will accept Medicare only after they have been "private pay" for a given time period, usually a year.
There is a lot that goes into caring for a person with Dementia, is her house set up for it? Barrier free, large bathrooms to use a walker or wheelchair? Bedroom on the first floor? These are just a few things that will make caring for her easier.
Also know you will probably have to leave your job if you plan to care for her full time. You will loose friends, you will become isolated, if you are married with children make sure they have some input into any plans.
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Do the best u can to spend regular
quality time w/mom as you seek paid live in helper. Is senior day care an option for you? My mom lived it even as her condition got worse,she enjoyed riding to/from.
Good advice to sit w/family to do financial PLAN for long term care and the short term helper(because
your moving. 'Mom can stay with one of you or we split all costs for her care..and we put it in writing")
Memories fade..make a WRITTEN
plan.Even if it's in the form of a family "mom care plan" meeting
summary.If no one contradicts it in writing..it's fact. I found wonderful
helper for 2-4 days/wk,plus day
care. We took turns getting her up dressed&fed before day care. The facility served 2meals,changed her
diaper and got her to walk and do
activities (music,movie,games). My
mom had 11 doctors, so I learned
a lot about aging. Acupuncture was Godsend,we dropped 6 docs!
She had Reiki 1-2x/wk it calmed her.We repeated "everyday and in every way, I expand my mental capacity' (said 7times several times) I tried to make her laugh, especially when I was tired.I took
some weekends OFF by hiring TWO helpers (1/2 day each, they
were check &balance)and stayed til she was asleep.Second came early morn.YOU make a plan so you can have a life and care for her
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Gods Only Knows!!!
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I agree with SusieW314. I am 11 hours away from Mom and am the only sibling who does anything. I don't even get help with paying bills, and her bills are high. I send my love and support to you, but I have no hope that you will get help if you are not getting any help already. I don't understand it, either. I could never behave as my sibs do. But I've had to just accept it.
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anonymous770773 Dec 2018
I completely agree. Siblings who don't help seem to manage to get tears in their eyes when talking about our mother but some of them can't manage to even pick up the phone and call, or go visit, or ask if they can help by doing something so you can have a vacation. They have convinced themselves that they don't have the resources (as if you weren't yourself spending what you would have put into retirement) and that the parent won't know the difference and that you are just playing martyr. That's how they live with themselves. When it comes time for services and burial and money distribution, if any, then they will have all kinds of advice. It's amazing how what we internalize as the definition of integrity is so different even among siblings of the same parents. I'm with you and I sleep well. I don't see how they ever could, but they must. Of course, I will have nothing to do with them ever again, I'm so disgusted by their lack of empathy and their ability to lie to themselves.
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If they are not already regularly there with her and helping with her care; they NEVER will be.

Read that^^^ again. I know it's heartbreaking to read that, even overwhelming, but sadly, it's true.

I learned this the hard way. It was very painful to find out that some of my siblings are not who I thought they were for my entire 50+ years of life. All 5 of us siblings live in the same metropolitan area as my mom did; all of us are white-collar professionals with our own families.

Most of my siblings did not have the same sense of responsibility for our mom as I did, some kind of indebtedness, or empathy for our mom and how she wanted to live out her life in her own home, (as long as it was safe for her to do so). She was our parent, the person who gave us life, but they didn't feel enough indebtedness/ appreciation to physically be there in her life when she needed and wanted them there the most...at the end of her life.

If your siblings are only willing/able to help financially, use that help.

They will not change. They will not suddenly start visiting more often, no matter what you say to them. They will not invite her to their homes for any extended stays, because they would have to take care of her physical needs and her safety. They will not change who they are for her. They are not willing to invest their time or their physical effort in her care, only their money.

As much as you love your mother, you have to love yourself more. You are NOT expected to give up your chance at your life, your dreams, by caring for your parent. I would even venture to say that your siblings don't expect it of you, but I'm sure they are thrilled that you volunteered to do it...because they never would have volunteered themselves.

This is a VERY COMMON SITUATION!!!
One, sometimes two siblings bear the physical burden for the caretaking of the parent(s).

Your mother's situation is going to deteriorate and she is not going to become easier to handle and care for as time goes by.

You and your siblings need to develop a long-term plan NOW for her LIFELONG care that does NOT involve YOU as the MAIN caretaker. You need to be assertive and up front with them that, just as they are not physically caring for your mother, you can no longer give up your own life to care for your mother.

Research, discuss, and then decide on a long term plan. Likely involving hiring a 24 hour live-in caretaker, (which your siblings can help pay for).

Once the caretaker is situated, you should start the process of moving yourself OUT of the house while still visiting daily. Slowly removing yourself from the caretaker role to becoming a regular visitor.

When the time comes where she can no longer be cared for at home, she will need to go into a facility that can handle her medical and emotional needs.

I know this is VERY hard to handle, and that you wish things were different, but you need to open your eyes and realize that THIS is the situation you are in. And it will not change, or improve, unless YOU change it.

Your siblings and their actions have already made it very clear how they plan to handle your mother's physical care...they're going to have someone else do it!

If YOU CHOOSE to continue being the main in-home caretaker for your mother, then you can discuss that your siblings can start paying YOU for YOUR time, since they are not willing to be present themselves.

It is YOUR decision on how you live YOUR life. Your siblings are CHOOSING how they live THEIR lives.

Helping with your mother can and should be a PART of your life, but not your ENTIRE life, unless that is your calling.

Tough decisions lie ahead, heartwrenching, but necessary for your mother's care, as well as your own. Nobody wants to see your life destroyed because you overhelped in caring for your mother's.
Keep reading/posting questions here, you'll find answers and also find that you're NOT ALONE in your feelings. We all here have had experiences.
May God bless you.
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Geesh, it seems there are a lot of us who have family who won't help. I have been my brother's caregiver for 8 years. My brother's off spring will not help me or visit him and my sister lives in Hawaii. His kids say they can't handle it. Like I can!!!

I love my brother and have put my retirement plans on hold. (I'm not a spring chicken either) Some times I do get resentful. When I do - I just don't go up for a few days. His condition is advancing rapidly and he thrives when he gets affection. That kind of settles me down when I am feeling sorry for myself - I just hug him and stroke his head. He is wheel chair bond, but thinks he can walk a marathon. He's good for about 5 steps before he has to sit down and regain his breath.

Is this challenging? Yes. Is it sad he thinks his kids visit him and they don't? Yes Is it a hardship for me to make sure he is cared for properly and taken to his Dr appts? Yes Does he have major medical issues? Yes Do I have to alter my schedule for his? Yes Do I love him and want to continue to give him a little joy in his horrid life? Yes Being a care giver is all of that and then some. I do get support from forums and Dementia groups and that has helped me in a big way. I also went to a 6 week course that the Senior Services provided for caregivers. It helped me understand what my brother is going through and how to best help him. It definitely helped me coop with my feelings. I would highly recommend contacting your local Senior Services and ask if they have such a course or program. Good luck - know you have support.
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Its a hard situation but you cannot change anyone. Sounds like they are willing financially that's a good step. However need a family meeting if not already. Who has financial DPOA & medical POA?
Decisions need to be made. Is there a will or trust? Maybe get a consult with an elder law attorney it helped me.
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I am so sorry you are the chosen one, but know you will be blessed in ways you could not have imagined. In a critical situation as this, there's one of us that does everything as a loyal person should and then the others feel they have no responsibilities. Been there done that. LOVE your MOM unconditionally while you can and expect nothing out of the useless ones! God bless you
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Be thankful they even help out with that. Her bills are no small feet to take care of-believe me. My brothers can't help out at all with my mom. Your life can wait til your Mom goes-that may be a few years so I'd say stop being resentful and accept that your sisters are in the stage of denial. Until they get a grip, get a life and grow up when dealing with your Mom's dementia, there's nothing you can do to help them. Hang in there, do what you can for yourself and keep taking care of your Mom. Good luck.
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Same boat here...

I feel for you, and my 2 siblings are local! Had to put my mom in a NH earlier this year, and they can't "deal" with her questions and seeing her this way... Like it is easy for me! I have always been called "tough" one, not out of choice.... Please don't forget, you are entitled to a life... The guilt will pass, I see my mom twice a week. Some times the visits are good, but mostly not... She blames me for everything, but no one else goes to visit, so I get the brunt of it....

I wish you the best, do what you have to in order to keep mom safe, but don't lose yourself...
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Caring12S:

You stated that your sisters live 2 &1/2 hours away. That is a four hour round trip.

Don't you realize it is unrealistic to expect them to help or visit too often.

It is time, however, to have a family conference about using moms savings and monthly SS for assisted living facility or a nursing home, as others have suggested

If she has no savings, she still has options. There are homes for people who are poor.

Who has control of your mother's finances? If it is solely you, you need to be transparent with your siblings.

I work with families in your situation.

Many times, the real problem is that the caregiver sibling does not want to SPEND mom's savings on her care. Or, they have taken total control of mom's finances and will not allow the siblings to get involved in decisions.

Many times, too, the caregiver sibling lives with mom rent free and they are afraid that medicare will come after the house and they will be displaced, if they put mom in a qualified facility.

You sound overwhelmed and an overwhelmed caregiver is never a good caregiver.

I took care of my grandfather for four years. No one else helped, but I did not care because it was a labor of love to care for him. My parents lived too far away and did not have the time to visit often.

I did not feel overwhelmed.

I had options, as far as assisted living or a nursing home, but it was my choice to care for him in my home. I understood that, and held it against no one that they did not have the energy or desire to care for him at home.

Again, it was my choice.

You have a choice. Contact an elder care attorney to find out what type of benefits are available to your mother. Almost all offer a free consult.

If you have old baggage with your mother, it will make you feel justifiably resentful of having to care for your mother.

If you are resentful, and you do sound resentful, you will not be a able to competently care for your mother.
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Not to be discouraging but you need to accept the fact that they aren’t going to help. Since they seem to be willing to help with expenses I suggest that you hire a full time companion for your mom. This person can be there while you are working and take your mom wherever she wants to go.
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Unfortunatelly this is happening all around. I've been through this for about 4 years. And what I have done so far was exactly this. I hired 3 caregivers in the beginning of this year and let them pay the bills. They did not complain until now, lets see.
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Unless you are involved in the daily care, you don't really know what a person needs. I banged my head for years trying to get siblings to jump in and help. The furthest away with the most on her plate visited quarterly. When things got critical, she took her vacation time from work to come up and help me. The two brothers living within a 45-min drive in the same city (neither are employed) found all kinds of reasons not to even visit but the spouse of one (who does work) recognized when I was burnt out and has come forward with concrete assistance. The two who have been unhelpful have always been self-absorbed. It will be their (and my) turn someday to need care. I will not be there for them; I hope someone else is. I know they will not be there for me.
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I’m so sorry you feel like your life is on hold and they are responsible. In my family I am the whipping boy and my siblings send directives for me to complete.
My father died three weeks ago and the sibs flew in and took over. Hospice left an unbelievable mess for me to clean up including used syringes on the kitchen island.
We can’t change people.
Only you can make positive change happen.
Look into care facilities that offer daycare. Find help for the weekend. If they will pay let them.
Let your mother’s dementia be a part of your life, but don’t let it rule your life.
As sad as it is to face, eventually your mom will need constant care. If you are growing bitter because of the sacrifice it might be best for everyone to go ahead and make the move sooner.
I don’t count on my siblings for anything other than grief. My parents gave me a lot of lip because I was the oldest and I had to take care of the three little ones. They still expect me to do the heavy lifting.
I hope your situation changes for the best and you move on towards happiness.
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SEE an ATTORNEY! Absolutely see an attorney and review her will, trust, whatever. I was in the same boat for 14 YEARS with neither sister doing anything. If she has assets, start by arranging payment to YOU for what you do, documentation is paramount. This will also allow you to spend down assets before Medicaid will kick in. With my mum it never did and when she died my sisters and I inherited equally, although they did absolutely nothing and I toiled for 14 years. You bet I’m bitter. Please don’t make the same mistakes I did. Protect yourself first.
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caringson12 Nov 2018
100% true. There is no medal for being a "used caretaker." Do what you feel is right and expect no recognition from anyone. It truly is a wonderful lesson and a way to not end up bitter.
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I doubt your siblings will ever step up. Some people are just not good at providing care. Realizing that will make choices easier. Understanding your mom's needs, as you do, since you are so close to her, means you have to arrange everything, even when you are not providing the rides, etc. Make it clear to your siblings that you know how to care for her, that you are there, and that it is healthy for her to get out of the house and whatever else you do for her. You are only a year into this. My care of my mom was 7 years, with my stay in her house 4 of those years. She eventually needed to go to assisted living, but I found a place close to my home, so I still see her every day and make sure she has what she needs and knows I'm there for her. After a couple years of fighting the issues of her care, I gave in to it and accepted that I was the one to do it, even though I am still working and my brother is retired. He hasn't visited her in 6 months, but lives only 30 minutes away. She doesn't know who he is anymore and that is sad. I watched and helped her take care of my grandmothers and knew back then that this was what was ahead for me. I just didn't expect dementia. My suggestion is to hire more and more home care as time goes on if there are finances for it, so you can have your life, but still offer whatever care is possible for you to give. She'll love for you to tell her about your experiences when hers become fewer and fewer.
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I am so sorry about what you are going through. You have a good heart, doing what you already do, for your mother. Is there another close relative like an aunt or cousin who can either help out or reach out to your sisters? They need to be aware of how much you are giving and what they can do to ease your burden.
Sometimes, married sibs with families assume that the caregiving will fall on the single sibling and this is unfair. You have the double whammy of being the only child in the area in which your mother lives.
You could write a letter, itemizing the things you do and then the things they could do to make this a more equitable situation.
Look into day care near your mother's home. They can offer a safe outlet with social activities and usually health care workers on site. Some offer transportation.
Reach out to your mother's house of worship too. Some offer volunteers who will visit or cook meals or even take to appointments.
I hope you find some solutions.
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I wouldn't get my hopes up depending on family members. You've got to take control of the situation. Ive taken care of my grandmother for almost 5 years. My husband and I have put huge parts of our lives on hold but I'm not putting her in a home. He works and I stoped working about a year ago as she needed more care. She has 2 daughters and 2 adult granddaughters and we all live in the same city. No one makes an effort to come by to say hello let alone help with anything. Its terrible. My grandmother is a wonderful person and her daughters are living in houses she bought them. Even if they are here and shes voices for something everyone just sits there beacuse she called my name. Ive voiced my frustrations and how I feel they dont care. A few years ago we agreed on a care plan where they helped 1 day a week. It didnt last long before their lives became more important.

I gave up on depending on them for help. Mainly for my own well being. I couldnt take the arguing anymore. Its very hard but ive let most of those negative feelings go. This has been one of the hardest times of my life but caring for my grandmother is very special to me. I love the time we have spent together and I know one day i will be so very thankful I got to be with her. Shes on hospice now and my family knows they are welcome anytime and just how much she enjoys seeing them. Its been 4 days since we have seen anyone. I hope you have better luck with your family.
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I'm in the same boat. Though it is my MIL. Her own daughter decided to move far away so she couldn't help, but feels the need to call me to tell me what to do. My hubby was DPOA until he was diagnosed with Vascular Dementia.
Step Daughter doesn't work, is 2 hours away and says she is soooo busy. But she can tell me what I need to do also.
MIL has a Guardian that was appointed by the court.
I refer my SIL & SD's advice to the Guardian.
I still see my MIL and do things for her. SD and SIL don't understand that I juggle extra care for two people in different households with Dementia.

And they won't help.
I suggested to both of them to come and see MIL.
I find it ironic that they
'know' best but won't participate.

You are awfully young to be a caregiver.
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Enshope Nov 2018
I too, am experiencing a sibling who lives in another state....comes once every two years for about three days and only contributes a tiny amount each month for our 93 year old mother. I have repeatedly asked her to come for two weeks to give me some relief a year but she cannot even do that.
I have heard over and over how her own financial health is so poor, but
she and husband get to go on two vacations a year and have extensive gardens which must cost a fortune in upkeep. She has everything to say about what I should be doing and she intervenes by calling doctors, when she has no idea what is happening.
Meanwhile, my husband and I help support financially and in every other way, my mother who has multiple health issues and some dementia. She is currently in her condo which has a reverse mortgage so she could afford being there. She needs a lot more help now and we can no longer sustain this situation. Because we cannot afford assisted living, we plan on bringing my mother home with us and I converted our dining room on the first floor to an accessible bedroom for her.
It has been very difficult, giving up most of my waking h ours, for my mothers care but since there is no help to be had from my sibling, then I just need to do what has to be done. I hope that I will feel less resentful of my sibling one day and hope you will as well.
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I agree with caringson ... expect nothing.

you have your answer ... they will do nothing but expect everything when she dies.
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I too am "the one" in the family that has been designated - against my will - as mother's caretaker. I am the youngest and have been the closest to her, however none of us got the care and attention we should have had from her when we were children. When she started crashing her car into things and neglecting the care of her home, we took her from the 15 room farmhouse she had lived in with my stepfather prior to his death, and moved her in with me. I did everything for her: cleaning, cooking, laundry, chauffeuring, shopping, paperwork, banking, When I couldn't be there because of my full time job, my teenage son filled in. That went on for five years until she started wandering off in the middle of the night. Fearing for her safety and my sanity, I moved her to a memory care facility. At no time when she was living alone, living with me, or living at the facility have my brother and sister visited her on a regular basis. She sees my brother probably 4 times a year. He lives about 15 miles from her facility. My sister goes a little more often - at least once a month - she lives about 12 miles away and her daughter, whom she visits often, lives a couple of blocks from the facility. I have tried pleading, bribing, guilting and shaming to get them to call or visit more often. They flatly refuse. While doing so, they constantly criticize me for just about everything I say or do regarding mom. I have to agree, I don't think anything you do will change your situation. I wish it were not so, but I'm in the same leaky rowboat. I'm going to be having surgery in a few weeks, which will limit my mobility for a lengthy period. My brother and sister both know this, however, I do not anticipate it will make them shoulder their own share of the burden, much less mine. I guess it's just the way some people are. I do have the comfort of knowing that when mom is gone, I will have done everything I could for her. Wonder how my siblings will feel?
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Expect absolutely nothing from your sisters. Review all documents your parents may have created with a lawyer such as wills, trusts end of life directives financial statements etc. Make sure you are in charge since you are the caretaker. If your sisters only want to contribute money get a clear idea of how much and what the expenses will be. You then have to decide your level of involvement in being a caretaker.
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