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.
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.
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.
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.
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.
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
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.
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.
Decisions need to be made. Is there a will or trust? Maybe get a consult with an elder law attorney it helped me.
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...
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.
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.
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.
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.
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.
you have your answer ... they will do nothing but expect everything when she dies.