I have been caring for my father for 4 years. He's living in my home with age-related decline, depression, diabetes, heart disease, incontinence, stroke, urinary tract infection, and vision problems.
To my neighbors family, and friends here: a poster opined that 'they will, in time, regret ...'.: Sisters and brothers, that is not a fact. I wish this response had been posted with a yellow triangle and an explanation mark. Family MAY regret, and even EXPRESS regret to you; AND likely, they will not. My story is: 65 y/o primary caretaker, 40+ years professional (lawyer); mom pushing 90. Mom had 3 girls, all 60+, 2 grandkids. All daughers are post-grads retirees--and genetically/DNA sociopaths. Neither will ever feel or express regret. My work has been to to educate myself about sociopathy. That was the easy part--the hardest piece has been learning about acceptance/forgiveness/releasing resentments. The good news is that it's all available to us via the www : ) God bless. Namaste
Anger (resentment) definitely is oftenly discussed on this forum. I believe it is much more common than is generally discussed here -- the elephant in the room. My question is: HOW do we members go about forgiving--step-by-step instruction, wisdom, explanation.
Many of us vulnerable primary caregivers (unpaid friends, relatives) here have never been exposed to scientific facts, nonreligious philosophical &/or psychological concepts about forgiveness.
"Is there a doctor in the house?" I.e., among us -- Monk, priest, pastor, psychologist, spiritual leader that can post?
Love your reply. I agree wit you. Do I have answers? Eh, not really. I have hope, wishes and dreams like most others do.
I feel knowing when to surrender being a hands on caregiver can require more strength than holding on. Letting go often requires the most strength.
Being stuck, trapped and drowning is so depressing but it’s conditioning. It’s the familiar routine. Negative cycles must be broken. Only then, we will feel relief and can start to have hope, perhaps even dream again.
I have heartaches in my life like many have dealt with. I am grateful for what is good in my life. I prefer to focus on that.
Is this the first you have known of them to be selfish or uncaring? Do they love your father, and feel he has been a good father? Do they live nearby and are they able to help you financially, physically or emotionally? Have you expressed your feelings to them. If you have done all you can, and they have been not responsive, then I feel it is a waste of time and emotions to think you will get blood from turnips. Just move on and pretend you do not have siblings.
I am going through the same thing, and realized the anger was draining my much needed energy. Now that we are nearing the end of our journey very soon, I have so many good memories and laughs at some of the predicaments i experienced as his care giving. There were horrible times, frustrating, emotion, draining times. But it’s not something I dwell on looking back on the past 10 years. You are doing such a tough “ job” 24/7, because you are stronger then your siblings, Please know during the hard times, this too will pass. And you are an amazing person 😉. Will keep you in my thoughts.
I am not a person who stays angry long. I am pretty forgiving but will admit, as I get older maybe not as much. One thing that may help is to not expect. Don't expect people to do it the way you do. Don't expect people to volunteer. No expect them to come forward on their own. I have stopped saying, "Call me if you need anything". They are just words. I am 70 and have learned to just do it myself. Then I know its done. I have found I can't rely on others to follow thru.
Get rid of the anger. Its only hurting you. My one brother lives 8 hrs away and works. So does his spouse with problems of her own with her Mother. My other brother lives 30 min away. Neither felt it was important to call Mom or visit. The one time my out of state brother visited, he was here 2 days. The second day he didn't visit Mom before he left because he couldn't stand to see her that way. I had to watch her decline on a monthly basis.
No, I never said to either of them "you should see/call Mom more". They are adult men at the time in their 50s. If they don't realize they have some responsibility here, I sure am not telling them.
I do suggest it maybe time for LTC for Dad. The incontinence made that decision for me. Toileting my Mom was the worst of the caregiving for me. For a man, I wouldn't have done it. I also found out I am not a Caregiver. I don't have the patience or the stamina to be one. I was 65 when I started that journey. Just retired and caring for my infant Grandson. Eventually, I placed Mom in an AL, because of money and her decline, I placed her in a very nice LTC. My SIL just placed her Mom in an AL. What a weight off her shoulders.
Hello Caroline33, I totally understand where you're coming from. My mother has been in a nursing home with Dementia. She still knows who her family. She has four daughters all within 10 to 15 minutes of her, and I'm the only one that goes to visit at least 3 times a week.... My sisters are so selfish and I'm so angry at them.....I have a full time IT job and on call 24/7 and They wont help with anything. Wont even visit.... So Pitiful and pathetic...
Michelle, They will, one day, regret their callousness. You my dear, will have a clear conscience and no regret. In my case, I my case I am the 83 yr old Mom, with my Daughter being my caregiver. I live next door to her. She is a jewel. Oldest son lives 4 hours away, yet tries to come about every 6 weeks. The other son is 8 hrs away and tries to come about every 3-6 months unless I'm in hospital. He works a full time job, while his brother is retired. My daughter has a full time job as well. I try to be extra careful, yet have fallen several times. Just try to reassure your Mom that she is your top priority. It will make her feel so good that you don't look on her as a burden, even though she knows down deep that she really is. Stay strong for YOU!!
And this is why I secretly wished to be an only child for most of my life! My best friend was an only child. I was so jealous of her.
Know what’s funny? My best friend in school and I looked so much alike! We both had reddish brown hair and blue eyes. Everyone would ask us if we were sisters.
All of my brothers have brown eyes and dark brown hair. We didn’t look alike. They were all ‘momma’s boys!’ I was a ‘daddy’s girl.’
Daddy was the fair parent. Mom showed favoritism towards her boys. God knows why? I did the most. Well, now she has them all to herself. They pushed me too far.
Parents and siblings need to be very careful because if they keep pushing they may end up losing their primary caregiver! I had enough and surrendered the job to my siblings! I did way more than my share.
They pushed so much that I went no contact for my own protection and sanity. I am loving my peace of mind. I don’t miss the agony. I miss the idea of having a family but not the heartache.
NeedHelpWithMom, karma is going to come back soon to them. You are so lucky that it isn't you that is stuck with Dear Mama as this inevitable pandemic effects come barrelling towards us.
I’ll tell you how I got past it. I am the third of 4 children and the only girl. I have been caring for both my parents for the past 6 years. My mother, who did most of Dad’s care passed away last May. I had the whole kit and kaboodle alone. My brothers visited every other month for 2 hours and got fed. I went to Mom and Dad’s house every single day for 5 years. I was so bitter for the first two years and then I realized that I will have not one regret when my parents pass. My brothers, however, have already voiced to me that they have regrets not seeing Mom more before her passing. I will know that I can sleep at night because I have done everything I can to give them a good life’s end. God bless you and keep you strong.
You have a right to angry at them. But you can not let it consume you. You may not like this, but you need to accept the fact that they have the right to make their own decisions and they do not owe you or your father anything. This does not mean I think what they're doing is good - nope, it stinks but you can't change them. Only can change how you deal with this tough reality.
You are probably burnt out. Get some respite care. Hire someone to come in for at least a few hours so you can get out alone. Or even put dad in a nursing home for a week or two of full-time respite care so you can recharge your batteries.
Or maybe it's even time to consider placing him somewhere full time.
"Let go of the grudge; it's only poisoning yourself." Yup, that's what I finally figured out myself, several years ago. They want to contact mom or ask how she is, they know how to contact me. So far, nothing. Funny thing is mom doesn't even ask about them anymore. Once in a while she would, but hasn't for a long time now! She still knows who I am.
First, acknowledge the hurt from unmet expectations.
Did your siblings promise to help in any way? Have you been close to your siblings in the past? If the answer is "no" top both, then you miscalculated the relationship. Mourn your loss and move on. If the answer is "yes" to either or both questions, have a heart to heart conversation with each sibling. Explain your needs and your father's need. Ask - not demand - how each could help meet those needs. If you come up with no help, mourn the loss and move on.
In the end, many well-meaning people are at a loss of how to help a difficult situation. Money can buy hired home aides - take it. Others have time to give you a break - not many have this luxury. If your other loved ones can take on chores such as running errands or getting some supplies, it is help that frees you up a bit. If no help is offered, find help through your friends, your church, your community, and home health care agencies or aides.
In the end, it is not just your dad's life that matters, but yours as well. Treat yourself with kindness. Accept help for others - whoever they may be. Let go of the grudge; it's only poisoning yourself.
You must be exhausted ! It sounds as if your father belongs in Assisted Living - too much for one person.I was an RN for 30 years.Your siblings sound selfish and so don't waste energy on them.Get your father into a Home before you get sick ! May God help you with your burdens !
I wish I had the answer but can tell you some of our siblings just are who they are and the only thing we have control over changing is ourselves or our reaction to them which is a very hard thing to wrap myself around as true as it is. My mother is 96 with mixed dementia. Things could be worse. Way worse...but the daily frustration and fatigue of dealing with her and my active 100+ year old father is wearing at my 60+ year old part-time working self. It would be for many reasons I won't detail here, a mistake to change the living arrangements. My sibling left town and is a plane ride away more than 16 years ago. I was angry for a long while. I came to accept it and realized my burden was contributed to by some of my own choices as well. But what really irks me is that if I write and tell her what is going on, she can't even acknowledge it. I know she has access to the tech stuff and is instantly notified when a message comes in, but I picture her just moving on to the next message and never reading mine until she feels like it, if then. It makes me feel more isolated and alone. There is no one else, it's all on me. The only thing is take comfort in knowing we are doing a good thing, we're not alone, and hope to survive with our health. I sadly wonder how the story will end...and will I feel relief...and then guilt, in addition to loss.
Oh, gdaughter, your story is mine : ( I didn't know that people can be so gratuitously mean. A word, a gesture, even acknowledging the situation would have changed my world. Absolutely free, no time sacrifice, no effort, but how, why not, eh?
You speak the absolute truth: We're doing the good and right thing, and we are NOT alone. I left a year ago, and have been nursing my wounds, which just won't heal and never will. I pray that we ALL will survive with our health. I also sadly wonder how the story will end. I don't and won't have guilt, thankfully. Actually, the emotional trauma has been so great that I rarely even think about my mom's actual passing. That's pretty tragic. All for lack of a smidge of compassion or kindness. : ( Thank you for sharing your story with us.
Caroline, I spent the past 28 years living with my Mom and care taking with all the problems your Dad has and more. I kept Mom home and had no respite- mistake on the respite- you need it. My two siblings did nothing while I did it all! She passed away exactly 2 months ago today at almost 101. It takes so much sacrifice-of health, emotional health, friends, vacations etc etc but I know I'd do it again in a minute. My siblings have lost the relationship that Mom and I forged and have to live with that. I tried everything to get them involved but they chose not to be in any way. For me, it was better to focus on Mom and I and what she needed than deal with people who won't change. I ended up sending out a once a week email detailing Mom's problems and my work but not in an accusing or begging- for-help spirit- just a "report to keep them up to date". Even that I don't think touched them. Caretakers live in a lonely world but I truly believe that we have help from beyond when things get super tough. Love your Dad, try to take care of yourself as much as you can in that situation, watch those UTI's as they often don't know they have one and it changes their personality, find some respite time if you can, find support right here and do what you need to do- whether that is looking into homes or whatever. hugs!
Caroline33, you are not alone, as you can see. I am taking care of 94 year old mom who is in AL. After dad died 20 years ago, I have always been there for her and helped with whatever she needed. She also babysat my 4 kids, so I was glad to help.
For the last 2 years her health has really declined and she needed 24/7 care. I have one brother who lives an hour and a half away, retired for 30 years, empty nester for 20 years and had abandoned my parents, since his first wife hated us and did not allow him to to talk to us. He feels he was the victim there, he did not feel he abandoned us. So my parents put their house in a trust in my name a long time ago because of my sister in law, who ended up passing away. He is 11 years older. My kids are grown but 2 oldest have physical and mental health issues since there teens and cannot live on there own. Youngest two come and go while still in college. So my house is full.
I hired a caregiver for my mom but that was a nightmare so she is now in AL. I have asked my brother for help, several times, only when I desperately needed it, but he has ALWAYS declined. He does visit my mom about once a month and she blames ME for the rift between my brother and me, because I do not call him. “Men don’t call, the women need to do that.” She asks me why I’m angry. I am past anger and have accepted the situation. I need to keep the distance for my own mental health. But she keeps stirring the pot every chance she gets. I do everything for her, yet to her I am an awful person tearing the family apart. My brother told her he doesn’t read minds and doesn’t know I need help. He has not called me ever, not once, to ask if I need anything. Does he think all her supplies get replenished by magic fairies? How does her medication get there all labeled so she doesn’t get confused? How does her refrigerator her replenished? Who is restocking her pantry? How does she get to the doctor? How did she even get to that facility? How did the furniture get there? Who is getting her house ready to be sold? Oh, her house is being sold? Does it really take a mind reader to figure out a house is not going to sit empty indefinitely when funds are needed to pay for her care? Do you really need to be a mind reader to look around her room and know someone is taking care of her needs? Yet my mom blames me for EVERYTHING!
She is now insisting that the proceeds from the house sale be split evenly between my brother and me, and is somehow blaming me that I own it. She and my brother have been discussing that they have no ownership of the home, which my parents put in a trust in my name 20 years ago, and I had no idea they even did that. I just found out now that I actually own the house since I am ready to sell. I now have to pay capital gains tax on it as well. All the money from the sale is going to pay for moms AL , which I have repeatedly told her. If she outlives the money, it will be my husband and myself paying for her care. I guarantee my brother will not be pitching in.
Yet, I am an awful person in her eyes, and dementia or not, it wrecks your heart and soul when your own mother tells you you are going to hell.
I will always take care of her the best I am able, but, sadly, it’s not done out of love, only obligation.
You know what, you might just say, "Since I can't make my mother and brother happy whatever I do, I should just do what makes my husband and me happy." That means, NOT splitting the proceeds between your brother and yourself. You've earmarked that money for your mother. DO NOT give any of the money to your brother, who will then spend it on himself. And also, make sure you do not foot the bill for your mother if she does run out of money. Instead, place her on Medicaid.
Release yourself from the burden of trying to make them happy. It will never work. Please take care of yourself, your husband, and the others including your children who you are in a reciprocal, healthy relationship with. Of course, you can still help out your mom, but do not take on the impossible burden of trying to make her happy. Spend your emotional dollars on yourself, your husband, and your children.
Hello Caroline 33 To get past your anger, there must be a few solutions. One that comes to mind is financial help from your siblings. In my country, France, by law, all children, depending on their income, is obliged to contribute financially to their parents upkeep. The siblings of the parents as well if the children cannot contribute sufficiently. Also, caregivers in France are given a salary and have respite carers to give them a break, holidays etc.... If u can obtain this to be put in place, by law, forget verbal agreement, you could afford to pay someone to take on some of your duties. Plan breaks and holidays + help. I cross my fingers for you.
It is great that you have laws to protect you and help provide for you, but it is VERY sad that it should even have to come to that! Unfortunately we really don't have laws here in the US for that. We can't make anyone pay or contribute in any way. Sure, there are a few states with "filial" laws, but in general they are not used AND if they are used, it is to pay NH costs, not the one who shoulders all the work at home. Sad, but this is how it stands here.
Sometimes a person can qualify for Medicaid, but the rules and benefits are varied by state, the hurdles are great (income limits are ridiculously low!), and even if approved, sometimes there are no beds available (IN GENERAL, this won't cover any AL or MC, usually only NHs, but the criteria for getting in them is also restrictive, i.e. just dementia usually is not sufficient) Sometimes one can get approved for some in-home care money via Medicaid, but it isn't easy and isn't guaranteed!
I will never get past it, I am done with them and it's been 3. They just want their inheritance and have put me in debt. Dad gone mom still with me, they have graciously paid themselves back for expenses in selling his house but won't help, pay me back, have lawyer want me to sign on dotted . line. Family are the worst get scammers and no one will help you. Get an agreement .
Caroline most Caregivers find themselves in the same circumstances as you since the Caregivng usually falls on the one Family Member. You have a kind heart and you are very loyal and loving, and obviously your Siblings are very different. The only way you can find peace and joy in your heart is to let it go and accept Life as it is. This will end eventually and in your heart you will feel a great peace. That is all that matters is knowing you did right by your Father. Consider getting Restbite Care for Your Father which would give you a two week rest, also consider hiring in help another Carer to give you some free time off.
Yes let it go, but that includes harboring any anger as it only impacts you, not them! I had this issue, and started to write an email to each brother, pointing out the issues, edited them a few times and there they sit in my draft folder. I didn't bother sending them, as like the anger, it wouldn't impact them. It would just likely make THEM angry (not a bad thing!) and lash out at me, blaming me for it all, so it wasn't worth it. I was just able to express myself and then work on letting it all go. We can't make them step up and we can't change them, so better to redirect the time and energy spent on anger to taking care of yourself and your LO!
H'm, your father's young, isn't he - only in his late sixties when all this began.
How many siblings, and what is their take on this do you think? I'm wondering if it's that they're not thinking about it, or if they are thinking about it and deciding to stay (or run) away.
[I think you meant "... not only NOT helping with my father but not even..." etc.]
Sadexecutor’s response is a good one. It also points up a critical problem: the basic unavailability of support for caregiving. Historically. this has been women’s work, which means it 1. doesn’t pay, and 2. Is considered menial. My oppressively conventional Mother expected everything of me & nothing of her 2 sons. And it’s much worse in cultures other than our own. Slowly - much too slowly- we are beginning to face the reality that “unpaid” “women’s” work is everybody’s work: if mom & pop both work outside the home, then they BOTH do their share in the home. This is a hard won battle that isn’t over yet. We have to win that “war.” Additionally, it must be recognized that ONE person can and should NOT do it all. We all have a right to a life, even if our elderly need help & care. We need to push for further resources; affordable caregiving that supplements what we can/ should do. Medicare & Medicaid need to be expanded to provide these necessities. In an overpopulated world, government must play a role and provide this help - more than is available now. Lastly, we who have had this responsibility dumped on us must learn to say no and draw the line. Often aging parents want a particular child to do everything; this is neither realistic nor doable, even. I wish you luck: I’ve been there and survived, but not without a toll on my mental & physical health. Things are changing; I hope they will in time for you!
One more addition to your post, before they come out of the woodwork - to those who say we should manage this ourselves, like they did 'back in the day':
1. We are not living in 'back in the day' 2. Many of us *must* work, not just do work 3. Some of us are not physically capable of the care-giving needed 4. Since many are living longer, those of us falling into this care-giving role are now seniors ourselves!
My dad's younger brother lived with his mother until she passed away.
My mother and her sisters took turns having their mother live with them, many months at a time. My parents were probably in their 50's at the time, and my grandmother was mobile with no dementia. She was EASY to care for! She was gone before my parents retired and they had a LONG and WONDERFUL retirement together!!!
About the time I realized my mother was starting down the dementia path, she was still living in her own condo and could *mostly* functional, but I was still working then. Both brothers were also working, one not local. I had to take on some duties, esp when we took her car away. Not too long after, I was laid off my job. Sure, it gave me more time to help, but it was costly and with no income, plus 1.5 hrs each way to her place, yeah, fun.
For a variety of reasons (age, physical ability, etc) there is no way I could physically care for my mother. BOTH brothers, when they found out the cost of care during first AL tour, said for that amount THEY would take her in!!! YB is still under retirement age, so he wouldn't be there all day and OB is NOT someone you would want to care for your dog while you are away!
So, the best solution was putting her savings to work, finding the nicest place near to where I live and move on from there. OB will likely never visit again (it's been almost 2 years since he was last here, and he "didn't know what to do with her" when he did visit!) I really don't think YB visits much, if at all. Mom doesn't even ask about either one now, but still knows who I am! When I texted him to say today might be the last chance for a visit as they will likely order restricting visitors tomorrow, his reply was he was back and forth about it, thinking perhaps he might have the virus... well, we've been hearing about this for WEEKS - did you not consider visiting back then???? AND you think EITHER of these two should be mom's primary care-givers?
I am in a similar situation also. I have been taking care of my mother for 4 years and when she fell in January 2019 and her doctor told me that she couldn’t be left alone anymore. She has dementia and not to soon after that one of my sisters decided that we needed a family meeting where we decided to come up with a schedule to share the caregiving duties. Well that didn’t last but a couple weeks when my other 4 siblings didn’t show up when they had volunteered to help. I was told by one of the sensible siblings to hire a caregiver that could help me and it has given time to do the grocery shopping and to visit my therapist and other doctors appts. I have found that a couple of the siblings were stealing different items from my mother’s house while they were here and helping themselves to the bank statements. I was accused of stealing my mother’s money. While they are out taking vacations, going out to dinner, enjoying life, and seeing their friends, I am here every night ready to take care of our mother at no cost to anyone. I have been used and abused and I’m sure they will be waiting for their part of the inheritance. I hope they are happy with themselves. It must be a wonderful thing to be so greedy.
I know and sympathize with this! I felt very angry and disappointed when I carried most of the burden with my dad but after he died, I realised I had not communicated what it had been like or asked for more help. This time with my mother I am far more open with information. I have had not that much more help (but that is a lot to do with practical barriers) but much more understanding and emotional support. I update my siblings a lot! It helps me and them! We should NOT suffer alone! Ha ha!
I hesitated to jump in on this very sensitive topic but I want to agree. In addition to more communication, I would suggest being as flexible as possible when accepting help. I think because of the great responsibility the main caregiver feels for the well being of patient they can sometimes become very controlling of the help they will accept. No one wants to be micromanaged. People will offer the help they can offer at the times that work for them. Demanding they conform to the caregiver's schedule and scolding them for not following the caregiver's protocol will not encourage additional offers of help.
I understand sometimes it's important to stick to the plan. "Don't give mom solid food- she will aspirate it" is an instruction that needs to be followed. "Mom wears this sweater today" is an instruction that maybe you can dispense with.
We have a caregiver in the family who is honestly carrying the weight of the world on their shoulders and doing an amazing job. They are very angry that we don't appear when they tell us to and when we are there, they have a million instructions on things that honestly do not affect the health and welfare of the patient. It's just a way for them to control their anxiety about leaving the patient. We don't look forward to helping them.
You'll see in other posts on this site that there are a lot of us in similar boats. For me, I do not want to split the sibling relationship for the remainder of my days, so I get mad, grumble/cuss under my breath and move on. I don't have the energy for the aftermath of a huge blow out anyway -- and neither do you. If none of them have stepped up to the plate in 4 years, they won't. --- But just to look at it from the other side: Have you asked them for help? Do they live close enough to offer frequent help? If they live far off, have you asked them to come for certain period of time to give you a break? Bottom line, have you really asked with specific wants...or are you expecting them to offer?
If finances are available, use them to get some help. So many people try to be so frugal with $$ because they are saving it for inheritance. If it's available, use it now to get yourself a little respite here and there. You might contact Medicaid office to see if there is any kind of in-home care he might qualify for. Even the doctor can order some home health through Medicare. A little cleaning, bathing, etc is not huge, but is helpful.
RE: asking for help (I am sure most everyone who has complained or chimed in that family doesn't help HAS asked, begged and pleaded!)
In my case, telling one brother it was all too much to handle, he bellowed at me to "Give it up!" No suggestions as to how to manage everything, at that time including getting condo ready for sale, just give it up (BTW, he has no POA or anything like it and isn't local.) The other, more recently when I asked him to take over appt trips (since one is a long haul, 4x/year and because she no longer will stand or walk without help and I can't support her weight) and said it was all too much, he naively said THEY (meaning the facility) take care of it all. No, they don't. I manage finances, pay bills, keep track of meds, both Rx and OTCs, have to order/buy, save receipts somewhere for taxes (have to have for both the trust and mom's taxes), other supplies like briefs, pads, bed pads, keep track of and schedule appts, incl hair cut, and so on... They do the hands-on, provide meals, clean, laundry, etc, but there is STILL so much more that needs to be managed!
I have said many times and repeat here: I think I got all the brains in this family!
I'm a little confused with your question. I'm not sure if you phrased it right. Are you saying that both your father and you are not well and no one will help? I am going to answer this question from my experience. I can honestly say that I have been given both good and bad advice on this forum. I take in everything and weigh it in my mind. My particular situation is being dual power of attorney with my sister. I was the one who recognized that mom had problems 4 years ago. I immediately started journaling and talking to doctors. My step father passed away during this process and I had to become mother's full-time caregiver. I took over all of her medical care, the cooking, her hygiene, doctor's appointments, maintenance of the house inside and out (and it's a very big house.) We also put cameras in her home so that I could watch her when I wasn't there. It has been difficult because my sister, who only lives 10 minutes away, only visited every two weeks. She would only occasionally ask how my mother was doing and was uninvolved in any kind of daily care , cleaning, yard work, doctor visits Etc. Now mother is in a nursing home and she has become very involved because we have to sell her belongings and the house. She comes down and starts claiming an abundance of expensive items of my mother's. When I explained to her the proper way to handle things she did not like it. We ended up having a meeting with the attorney who told her the legal way to handle things. She stomped out of the meeting. She is 100% involved in claiming what she wants. It is extremely frustrating because of all of the mental and physical drain this has all taken on me. It is my understanding that there is at least one sibling in every family who is like this. I have received a lot of advice, but the one that sticks out in my mind,is that I will simply have to let it go. The sibling is not going to change. There is nothing I can do other than make decisions in the best interest of my mother. Am I bitter? Yes. The advice is to let it go. Do what needs to be done and walk away. If that means that you have to disconnect from that sibling then you do what is best for your own Mental Health. If you have health issues of your own, and are unable to take care of your loved one, then you need to start taking steps to find them a nursing home or assisted Care Facility. Most of us on this forum are in our 50s. This kind of stress takes a huge toll on our bodies both mentally and physically. We have to take care of ourselves. Many of us have children and grandchildren that we would like to enjoy. We are not professionals, we are loved ones. The professionals know exactly how to handle our loved ones and are able to separate the emotional aspect. Please consider this if you have health issues. It is okay to walk away from caregiving in order to care for yourself. I absolutely wish you well. I wish you peace. I wish you a long healthy life.
Though it sounds counterintuitive the best way I know to get past it is to forgive. None of us can expect people to be who they aren’t. I spent years upset over a sibling before fully realizing I couldn’t change someone else or their behavior, the only one I can change is me. We’re on speaking terms now, it’s a shallow relationship with many topics we don’t touch, but it beats the tension and anger by far. The forgiveness isn’t for them, it’s for you, it allows you to let it go and move forward in peace
Good answer. If you keep banging your head against a brick wall, no matter who is watching, you are the only one getting the headache. It's not easy to avoid the feelings you get when no one will step forward, or even outright tells you no, but if you dwell on it each day it just makes your current tasks even harder. You can't change someone who sees no issue with their actions...not sure who said that, but very true.
Caroline, you can't pick your family. Also, anger is caused by an unmet expectation. If you had an unspoken expectation that they would help and they didn't...then there's anger. If you did ask them and they declined to help, that is their prerogative — they are not obligated to do so. I realize it seems incomprehensible for them to be this way. It is so so so disappointing. Please just make sure you are taking care of yourself first and foremost. Your dad is very young and IMHO it would be better to transition him to AL so that he can get all the medical help he needs and have a richer social life -- and so can you. Because he is living with you I think your siblings think you've "got things covered". I'm positive they have no idea what caregiving entails. I've done some passive-aggressive educating of my family in the past: I typed up an email "log" of what I did with and for my LO that day. Unemotional, no commentary, just an "update". Of every little thing. Then I emailed it to everyone. I did this every day. Yes, they had no idea what caring for my MIL entailed. Even if they ask "why are you sending me this?" just say politely so that everyone knows what's going on with dad since he's everyone's dad and not just yours.
Also I'm hoping your dad has all his legal ducks in a row: assigned you as durable PoA, created a living will, healthcare directive, will, or trust, etc. He MUST have this in order or later on it could get very messy and unnecessarily so. I wish you all the best and lots of good times with your dad.
I was in your shoes. I had my mom for 15 years in my home. It’s a long messy story. Anyway, I burned out. Mom is now with my brother and sister in law. I was like Ahmijoy, I internalized it also. Then the cork came off! I had so much bottled up that I exploded.
I had to go no contact in order to survive. Do I miss my family? That’s hard to say if I were to be really honest. I miss the idea of having a family. I don’t miss the agony. I feel relief.
You are perfectly normal to feel as you do. Don’t bottle it up like I did. Honor your feelings. There isn’t a right or wrong way to feel. We all process things differently. Don’t compare yourself to others too much. We are individuals and you need to figure out what works for you. The anxiety, depression, anger and resentment was killing me. I needed help. I was doing everything alone for so long.
I love this forum. I received great advice. There are various opinions though and that’s okay. Everyone is entitled to their own opinion but I did benefit from one on one therapy to help reach important decisions.
Go speak to someone. I ended up in therapy. I should have gone sooner than I did.
My mom pitted us against each other. My brothers and I were not all that close so I was used to them not being involved. It was the awful criticism when my mom stirred the pot if she didn’t get her way.
I don’t know your specific details and it’s none of my business. Whatever is going on, I sincerely hope things improve somehow, some way for you. Best wishes.
I do understand how you feel. On a somewhat similar note, my husband has a large family. In the past, whenever any of them needed help, it seemed like he, and by association, I, were first on the scene. But, for the past 7 years, he has been disabled. He worked at the family business and when he began to “lose it”, instead of getting him help, they fired him. None of them has ever offered help. None of them has ever called me to ask if I needed help or even wanted to go out for coffee for respite from caring for him. They visited him in rehab once.
So, how have I handled this? By myself. I count on no one for help. I don’t ask for help. I don’t WANT their help. Don’t do me any favors, you know? Live in your $400,000 condo, travel the world and don’t worry about your brother and me. I’ll let you know when he passes away, and you can ignore me then, too. Yes, I internalize the anger I feel. But it doesn’t change the fact that whatever needs to be done is up to me. I simply just deal. You can’t force people to do what they don’t want to do.
Many of us vulnerable primary caregivers (unpaid friends, relatives) here have never been exposed to scientific facts, nonreligious philosophical &/or psychological concepts about forgiveness.
"Is there a doctor in the house?" I.e., among us -- Monk, priest, pastor, psychologist, spiritual leader that can post?
I feel knowing when to surrender being a hands on caregiver can require more strength than holding on. Letting go often requires the most strength.
Being stuck, trapped and drowning is so depressing but it’s conditioning. It’s the familiar routine. Negative cycles must be broken. Only then, we will feel relief and can start to have hope, perhaps even dream again.
I have heartaches in my life like many have dealt with. I am grateful for what is good in my life. I prefer to focus on that.
If you have done all you can, and they have been not responsive, then I feel it is a waste of time and emotions to think you will get blood from turnips. Just move on and pretend you do not have siblings.
Get rid of the anger. Its only hurting you. My one brother lives 8 hrs away and works. So does his spouse with problems of her own with her Mother. My other brother lives 30 min away. Neither felt it was important to call Mom or visit. The one time my out of state brother visited, he was here 2 days. The second day he didn't visit Mom before he left because he couldn't stand to see her that way. I had to watch her decline on a monthly basis.
No, I never said to either of them "you should see/call Mom more". They are adult men at the time in their 50s. If they don't realize they have some responsibility here, I sure am not telling them.
I do suggest it maybe time for LTC for Dad. The incontinence made that decision for me. Toileting my Mom was the worst of the caregiving for me. For a man, I wouldn't have done it. I also found out I am not a Caregiver. I don't have the patience or the stamina to be one. I was 65 when I started that journey. Just retired and caring for my infant Grandson. Eventually, I placed Mom in an AL, because of money and her decline, I placed her in a very nice LTC. My SIL just placed her Mom in an AL. What a weight off her shoulders.
I totally understand where you're coming from. My mother has been in a nursing home with Dementia. She still knows who her family. She has four daughters all within 10 to 15 minutes of her, and I'm the only one that goes to visit at least 3 times a week....
My sisters are so selfish and I'm so angry at them.....I have a full time IT job and on call 24/7 and They wont help with anything. Wont even visit....
So Pitiful and pathetic...
They will, one day, regret their callousness. You my dear, will have a clear conscience and no regret. In my case, I my case I am the 83 yr old Mom, with my Daughter being my caregiver. I live next door to her. She is a jewel. Oldest son lives 4 hours away, yet tries to come about every 6 weeks. The other son is 8 hrs away and tries to come about every 3-6 months unless I'm in hospital. He works a full time job, while his brother is retired. My daughter has a full time job as well. I try to be extra careful, yet have fallen several times.
Just try to reassure your Mom that she is your top priority. It will make her feel so good that you don't look on her as a burden, even though she knows down deep that she really is.
Stay strong for YOU!!
Know what’s funny? My best friend in school and I looked so much alike! We both had reddish brown hair and blue eyes. Everyone would ask us if we were sisters.
All of my brothers have brown eyes and dark brown hair. We didn’t look alike. They were all ‘momma’s boys!’ I was a ‘daddy’s girl.’
Daddy was the fair parent. Mom showed favoritism towards her boys. God knows why? I did the most. Well, now she has them all to herself. They pushed me too far.
Parents and siblings need to be very careful because if they keep pushing they may end up losing their primary caregiver! I had enough and surrendered the job to my siblings! I did way more than my share.
They pushed so much that I went no contact for my own protection and sanity. I am loving my peace of mind. I don’t miss the agony. I miss the idea of having a family but not the heartache.
You are probably burnt out. Get some respite care. Hire someone to come in for at least a few hours so you can get out alone. Or even put dad in a nursing home for a week or two of full-time respite care so you can recharge your batteries.
Or maybe it's even time to consider placing him somewhere full time.
Good luck.
Did your siblings promise to help in any way? Have you been close to your siblings in the past? If the answer is "no" top both, then you miscalculated the relationship. Mourn your loss and move on. If the answer is "yes" to either or both questions, have a heart to heart conversation with each sibling. Explain your needs and your father's need. Ask - not demand - how each could help meet those needs. If you come up with no help, mourn the loss and move on.
In the end, many well-meaning people are at a loss of how to help a difficult situation. Money can buy hired home aides - take it. Others have time to give you a break - not many have this luxury. If your other loved ones can take on chores such as running errands or getting some supplies, it is help that frees you up a bit. If no help is offered, find help through your friends, your church, your community, and home health care agencies or aides.
In the end, it is not just your dad's life that matters, but yours as well. Treat yourself with kindness. Accept help for others - whoever they may be. Let go of the grudge; it's only poisoning yourself.
You speak the absolute truth: We're doing the good and right thing, and we are NOT alone. I left a year ago, and have been nursing my wounds, which just won't heal and never will. I pray that we ALL will survive with our health. I also sadly wonder how the story will end. I don't and won't have guilt, thankfully. Actually, the emotional trauma has been so great that I rarely even think about my mom's actual passing. That's pretty tragic. All for lack of a smidge of compassion or kindness. : ( Thank you for sharing your story with us.
For the last 2 years her health has really declined and she needed 24/7 care. I have one brother who lives an hour and a half away, retired for 30 years, empty nester for 20 years and had abandoned my parents, since his first wife hated us and did not allow him to to talk to us. He feels he was the victim there, he did not feel he abandoned us. So my parents put their house in a trust in my name a long time ago because of my sister in law, who ended up passing away. He is 11 years older. My kids are grown but 2 oldest have physical and mental health issues since there teens and cannot live on there own. Youngest two come and go while still in college. So my house is full.
I hired a caregiver for my mom but that was a nightmare so she is now in AL. I have asked my brother for help, several times, only when I desperately needed it, but he has ALWAYS declined. He does visit my mom about once a month and she blames ME for the rift between my brother and me, because I do not call him. “Men don’t call, the women need to do that.” She asks me why I’m angry. I am past anger and have accepted the situation. I need to keep the distance for my own mental health. But she keeps stirring the pot every chance she gets. I do everything for her, yet to her I am an awful person tearing the family apart. My brother told her he doesn’t read minds and doesn’t know I need help. He has not called me ever, not once, to ask if I need anything. Does he think all her supplies get replenished by magic fairies? How does her medication get there all labeled so she doesn’t get confused? How does her refrigerator her replenished? Who is restocking her pantry? How does she get to the doctor? How did she even get to that facility? How did the furniture get there? Who is getting her house ready to be sold? Oh, her house is being sold? Does it really take a mind reader to figure out a house is not going to sit empty indefinitely when funds are needed to pay for her care? Do you really need to be a mind reader to look around her room and know someone is taking care of her needs? Yet my mom blames me for EVERYTHING!
She is now insisting that the proceeds from the house sale be split evenly between my brother and me, and is somehow blaming me that I own it. She and my brother have been discussing that they have no ownership of the home, which my parents put in a trust in my name 20 years ago, and I had no idea they even did that. I just found out now that I actually own the house since I am ready to sell. I now have to pay capital gains tax on it as well. All the money from the sale is going to pay for moms AL , which I have repeatedly told her. If she outlives the money, it will be my husband and myself paying for her care. I guarantee my brother will not be pitching in.
Yet, I am an awful person in her eyes, and dementia or not, it wrecks your heart and soul when your own mother tells you you are going to hell.
I will always take care of her the best I am able, but, sadly, it’s not done out of love, only obligation.
You know what, you might just say, "Since I can't make my mother and brother happy whatever I do, I should just do what makes my husband and me happy." That means, NOT splitting the proceeds between your brother and yourself. You've earmarked that money for your mother. DO NOT give any of the money to your brother, who will then spend it on himself. And also, make sure you do not foot the bill for your mother if she does run out of money. Instead, place her on Medicaid.
Release yourself from the burden of trying to make them happy. It will never work. Please take care of yourself, your husband, and the others including your children who you are in a reciprocal, healthy relationship with. Of course, you can still help out your mom, but do not take on the impossible burden of trying to make her happy. Spend your emotional dollars on yourself, your husband, and your children.
To get past your anger, there must be a few solutions. One that comes to mind is financial help from your siblings.
In my country, France, by law, all children, depending on their income, is obliged to contribute financially to their parents upkeep. The siblings of the parents as well if the children cannot contribute sufficiently. Also, caregivers in France are given a salary and have respite carers to give them a break, holidays etc.... If u can obtain this to be put in place, by law, forget verbal agreement, you could afford to pay someone to take on some of your duties.
Plan breaks and holidays + help.
I cross my fingers for you.
Sometimes a person can qualify for Medicaid, but the rules and benefits are varied by state, the hurdles are great (income limits are ridiculously low!), and even if approved, sometimes there are no beds available (IN GENERAL, this won't cover any AL or MC, usually only NHs, but the criteria for getting in them is also restrictive, i.e. just dementia usually is not sufficient) Sometimes one can get approved for some in-home care money via Medicaid, but it isn't easy and isn't guaranteed!
How many siblings, and what is their take on this do you think? I'm wondering if it's that they're not thinking about it, or if they are thinking about it and deciding to stay (or run) away.
[I think you meant "... not only NOT helping with my father but not even..." etc.]
Slowly - much too slowly- we are beginning to face the reality that “unpaid” “women’s” work is everybody’s work: if mom & pop both work outside the home, then they BOTH do their share in the home. This is a hard won battle that isn’t over yet. We have to win that “war.”
Additionally, it must be recognized that ONE person can and should
NOT do it all. We all have a right to a life, even if our elderly need help & care. We need to push for further resources; affordable caregiving that supplements what we can/ should do. Medicare & Medicaid need to be expanded to provide these necessities. In an overpopulated world, government must play a role and provide this help - more than is available now.
Lastly, we who have had this responsibility dumped on us must learn to say no and draw the line. Often aging parents want a particular child to do everything; this is neither realistic nor doable, even.
I wish you luck: I’ve been there and survived, but not without a toll on my mental & physical health.
Things are changing; I hope they will in time for you!
1. We are not living in 'back in the day'
2. Many of us *must* work, not just do work
3. Some of us are not physically capable of the care-giving needed
4. Since many are living longer, those of us falling into this care-giving role are now seniors ourselves!
My dad's younger brother lived with his mother until she passed away.
My mother and her sisters took turns having their mother live with them, many months at a time. My parents were probably in their 50's at the time, and my grandmother was mobile with no dementia. She was EASY to care for! She was gone before my parents retired and they had a LONG and WONDERFUL retirement together!!!
About the time I realized my mother was starting down the dementia path, she was still living in her own condo and could *mostly* functional, but I was still working then. Both brothers were also working, one not local. I had to take on some duties, esp when we took her car away. Not too long after, I was laid off my job. Sure, it gave me more time to help, but it was costly and with no income, plus 1.5 hrs each way to her place, yeah, fun.
For a variety of reasons (age, physical ability, etc) there is no way I could physically care for my mother. BOTH brothers, when they found out the cost of care during first AL tour, said for that amount THEY would take her in!!! YB is still under retirement age, so he wouldn't be there all day and OB is NOT someone you would want to care for your dog while you are away!
So, the best solution was putting her savings to work, finding the nicest place near to where I live and move on from there. OB will likely never visit again (it's been almost 2 years since he was last here, and he "didn't know what to do with her" when he did visit!) I really don't think YB visits much, if at all. Mom doesn't even ask about either one now, but still knows who I am! When I texted him to say today might be the last chance for a visit as they will likely order restricting visitors tomorrow, his reply was he was back and forth about it, thinking perhaps he might have the virus... well, we've been hearing about this for WEEKS - did you not consider visiting back then???? AND you think EITHER of these two should be mom's primary care-givers?
So, the holier-than-thou crowd, FLUFF OFF! =^..^=
I understand sometimes it's important to stick to the plan. "Don't give mom solid food- she will aspirate it" is an instruction that needs to be followed. "Mom wears this sweater today" is an instruction that maybe you can dispense with.
We have a caregiver in the family who is honestly carrying the weight of the world on their shoulders and doing an amazing job. They are very angry that we don't appear when they tell us to and when we are there, they have a million instructions on things that honestly do not affect the health and welfare of the patient. It's just a way for them to control their anxiety about leaving the patient. We don't look forward to helping them.
If finances are available, use them to get some help. So many people try to be so frugal with $$ because they are saving it for inheritance. If it's available, use it now to get yourself a little respite here and there. You might contact Medicaid office to see if there is any kind of in-home care he might qualify for. Even the doctor can order some home health through Medicare. A little cleaning, bathing, etc is not huge, but is helpful.
In my case, telling one brother it was all too much to handle, he bellowed at me to "Give it up!" No suggestions as to how to manage everything, at that time including getting condo ready for sale, just give it up (BTW, he has no POA or anything like it and isn't local.) The other, more recently when I asked him to take over appt trips (since one is a long haul, 4x/year and because she no longer will stand or walk without help and I can't support her weight) and said it was all too much, he naively said THEY (meaning the facility) take care of it all. No, they don't. I manage finances, pay bills, keep track of meds, both Rx and OTCs, have to order/buy, save receipts somewhere for taxes (have to have for both the trust and mom's taxes), other supplies like briefs, pads, bed pads, keep track of and schedule appts, incl hair cut, and so on... They do the hands-on, provide meals, clean, laundry, etc, but there is STILL so much more that needs to be managed!
I have said many times and repeat here: I think I got all the brains in this family!
Now mother is in a nursing home and she has become very involved because we have to sell her belongings and the house. She comes down and starts claiming an abundance of expensive items of my mother's. When I explained to her the proper way to handle things she did not like it. We ended up having a meeting with the attorney who told her the legal way to handle things. She stomped out of the meeting.
She is 100% involved in claiming what she wants. It is extremely frustrating because of all of the mental and physical drain this has all taken on me.
It is my understanding that there is at least one sibling in every family who is like this. I have received a lot of advice, but the one that sticks out in my mind,is that I will simply have to let it go. The sibling is not going to change. There is nothing I can do other than make decisions in the best interest of my mother. Am I bitter? Yes. The advice is to let it go. Do what needs to be done and walk away. If that means that you have to disconnect from that sibling then you do what is best for your own Mental Health.
If you have health issues of your own, and are unable to take care of your loved one, then you need to start taking steps to find them a nursing home or assisted Care Facility. Most of us on this forum are in our 50s. This kind of stress takes a huge toll on our bodies both mentally and physically. We have to take care of ourselves. Many of us have children and grandchildren that we would like to enjoy. We are not professionals, we are loved ones. The professionals know exactly how to handle our loved ones and are able to separate the emotional aspect. Please consider this if you have health issues. It is okay to walk away from caregiving in order to care for yourself. I absolutely wish you well. I wish you peace. I wish you a long healthy life.
Their case was different, but shares aspects. My response to Daughterof1930 covers the anger issues (been there, done that!)
Also I'm hoping your dad has all his legal ducks in a row: assigned you as durable PoA, created a living will, healthcare directive, will, or trust, etc. He MUST have this in order or later on it could get very messy and unnecessarily so. I wish you all the best and lots of good times with your dad.
I had to go no contact in order to survive. Do I miss my family? That’s hard to say if I were to be really honest. I miss the idea of having a family. I don’t miss the agony. I feel relief.
You are perfectly normal to feel as you do. Don’t bottle it up like I did. Honor your feelings. There isn’t a right or wrong way to feel. We all process things differently. Don’t compare yourself to others too much. We are individuals and you need to figure out what works for you. The anxiety, depression, anger and resentment was killing me. I needed help. I was doing everything alone for so long.
I love this forum. I received great advice. There are various opinions though and that’s okay. Everyone is entitled to their own opinion but I did benefit from one on one therapy to help reach important decisions.
Go speak to someone. I ended up in therapy. I should have gone sooner than I did.
My mom pitted us against each other. My brothers and I were not all that close so I was used to them not being involved. It was the awful criticism when my mom stirred the pot if she didn’t get her way.
I don’t know your specific details and it’s none of my business. Whatever is going on, I sincerely hope things improve somehow, some way for you. Best wishes.
So, how have I handled this? By myself. I count on no one for help. I don’t ask for help. I don’t WANT their help. Don’t do me any favors, you know? Live in your $400,000 condo, travel the world and don’t worry about your brother and me. I’ll let you know when he passes away, and you can ignore me then, too. Yes, I internalize the anger I feel. But it doesn’t change the fact that whatever needs to be done is up to me. I simply just deal. You can’t force people to do what they don’t want to do.