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.
Yes, you need to get on with your life, you must be young if wanting marriage and a family. Your best option in my opinion is to move out, find mom a home caregiver if there are funds for that, or place her in a facility. It will be hard, but even if your twisteds were to help, living two hours away is a lot to ask. They have their lives too, and yours is what you make it.
I am in the same boat, 3 sibs who live between 1 & 8 hour car ride from our widowed Mother but they don't feel the need to visit often (every few months..and the ones living the farthest don't work.
Our parents were inseparable and on the go, yet when Dad passed on suddenly 4.5 yrs ago Mother went into assisted living they didn't seem to see the void..of companionship and more importantly transportation (Mother can't drive).
My sibs even complain that by me trying to see Mom 2-3 afternoons per week that I am setting a dangerous pattern.
Elder Aunts/Uncles have told me if the sibs can't appreciate Mother enough to spend the time now while she still is communicative and ambulatory there is probably little I can do to change their minds and just know that I am doing what our Dad thought ALL of his children would do when they promised him to look after Mother. They will just have to live with the guilt when she's no longer talking or recognizes them.
You write that maybe they can't handle the situation. I think that is part of the issue with at least one sister of mine. I wish she would just admit it..not so I can gloat..but since I know Mother's routine maybe I could suggest a different way...i.e. take her for a car ride to see the scenery, structure exactly where you will drive her, play the CD I made of Mom's favorite songs, etc. Mother is quite calm and happy just to get out of the same 4 walls (and with music playing she doesn't repeat herself as much).
There are also mediators that perhaps you and your sisters can meet with to sort out some of this? Since Mother is in Memory Facility now the staff has been a great resource and stabilizing force..before it was me against them.
Hope some of this helps.
It might be the time to have a "family talk"
Tell your siblings that you can not do it all and that the option will be to find a place for mom. Assisted Living now might work then a move to Memory Care. Or go directly to Memory Care if that is appropriate.
I am sure that once this subject is brought up either they will find a way to help out more or you can all go tour Memory Care facilities now.
This will take the burden from you as well. Once placed mom will be in a safe secure environment and you call all become daughters again not caregivers.
Yes it will be an adjustment for mom as well as you. But this is a disease that progresses and the necessary help will only increase. The important thing is mom is safe and in a place that will be able to accommodate her needs as she declines.
Instead of asking for their help, you might be a little more direct.
1. Start by stating that you plan to be away ~ no explanations or justifications, just the statment of when you'll be away. Do this with enough time to give them an opportunity to prepare.
2. State that you all need to look at options for mom's care while you're gone and that they'll need to let you know what they are willing or able to do to help mom through your absence...
3. This is NOT for you, but for your mother and she is the mother of all of you.
4. Operate from the premise that they care, but do not have to do more than they are doing because you are handling everything, and even if you complain, they can ignore your complaints and go on about their lives, which is their priority... We are not judging them, just being aware of how they are handling their priorities...
5. IF they tell you to do what you need to do, that they have no suggestions, then the next step is to outline that mom would need to go into assisted living for respite care, and that right now the cost would be... $___ and how do they want to cover that cost?
6. The conversation will then turn to finances and often times when siblings don't physically participate in a parent's care, they do step up with financial support... as you stated, they pay her bills...
7. Make sure you do get away as you stated you would, and then the conversation can be followed up with what will work for mom going forward... This may encourage the discussion regarding long term care, financial planning, visitation, etc. While respite care is short term, it can often lead to the long term care needed...
8. As was recommended previously, see what you can then do to move out on your own so you are not as consumed with the daily care and responsibilities for your mother.
9. This is about setting and maintaining healthy boundaries, first with your mother and then with your sisters... They are used to you handling everything, so making the change to let them know that this is no longer acceptable, a conversation regarding mom's care has to happen...
10. No guilt, no judgments, just lay out the facts... Focus on creating the best life you can given the realities of your mother's needs...
Wishing you ease...
I have done most of this and agree 100%.
Meet got together with a elder care attorney for an hour appointment. At that meeting he took charge and told us to stop focusing on all the little things. We decided at that meeting that there would be no judgement, no expectations of each other’s contributions. Our Dad did nothing to plan for his future and he put us in this mess.
We are now not criticizing each other. We are siblings that unconditionally love each other. Each of us have our abilities and reasons for what we can or cannot do.
It is working for us. No one can say what others should do.
Just love hearing this... I think you said this before—if you did, I loved it before. This is how things should be in every family. Some people are better at some things than others.
"We decided at that meeting that there would be no judgement, no expectations of each other’s contributions. Our Dad did nothing to plan for his future and he put us in this mess.
We are now not criticizing each other. We are siblings that unconditionally love each other. Each of us have our abilities and reasons for what we can or cannot do.
It is working for us. No one can say what others should do."
needs are only going to increase over time and her mobility will decrease so it’s important that you firm something up ASAP. Maybe your mom goes to stay with each of them for 3 months straight? She could see doctors in their city. Good luck.
"she goes around telling people she was abused as a child just to make herself look like a victim."
Wow. This is why people don't talk about abuse. Were you with your sister 24 hours a day, throughout every step of her life? I was a victim of molestation by my brother and nobody in my family can believe that the favorite member of the family did this to me. He is, and always will be a hero in everyone else's eyes. Only he and I know the truth. Please don't ever question the validity of someone who claims to be victimized. You can't truly know the truth of what happened to her. It certainly isn't kind to shame a possible victim when you don't know the truth. People do lie about some situations, but if a person were to make up stories, this would be a person who needs serious help—at least show some sensitivity towards her.
To caring12s
You also cannot understand why a person will not help out with parents. In my case, my parent with dementia was neglectful and abusive. Not everyone lives a happy life and many siblings are treated differently because of parent bias. You may not have been aware of it during your life or seen the difference in how some of your siblings were treated when growing up. Be grateful that they are helping with money. That's a good thing. A lot of people don't even do that. I'm a caregiver that has been shunned and shamed because "I didn't do enough" when those accusers lived out of state and did absolutely nothing. I did something for years. They neglected our parents in the past and now when I have taken a break from my parent's abuse, they criticize me again. There are always unknown factors in any relationship and being bitter and resentful is not a way to get anybody to help out.
I have 5 other siblings, and we were all treated differently. My mother played favorites, and I was not one of them. One of my sisters took care of our mother for a very long time, and my mother was nasty, difficult and demanding. I personally think my sister was a saint for dealing with her for all those years!
I was asked many times over the years (by my siblings who were off living their lives) why I was not helping my sister more with our mother's care. My mother was never there for me growing up, she destroyed my self-esteem, and physically abused me! My life was pure hell growing up! I was the only one brave enough to stand up to her later in life, and held her accountable for what she did to us! In the last few years of her life, she made an attempt (in her own way) to repair our relationship, but it was too late, the damage was done. I helped my sister whenever I was able, because I felt bad for my sister, not because I wanted to. I am now grieving for what I never had. I had a bizarre love/hate relationship with my mom, and I never understood why I just didn't completely cut her out of my life, but I just kept hoping that she would give me a sincere apology. In the end all I got was her getting angry and telling me that she was an excellent mother...HA!!! Thank goodness that I learned from the experience, because my daughter and I have a loving, close relationship.
Please remember that not all siblings are horrible because we distance ourselves from our parents. Many of us have perfectly good reason to! Yes, some siblings are selfish and self-centered, but not all. If you were a victim of abusive parenting, my heart goes out to you, because it is one of the most heartbreaking situations to be in. After our parents gone, the scars remain. Blessings to all the amazing caregivers out there!
Jan
you have your answer ... they will do nothing but expect everything when she dies.
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.
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.
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.
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.
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.
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.
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...
Decisions need to be made. Is there a will or trust? Maybe get a consult with an elder law attorney it helped me.
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.
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.