I just left my life to move 600 miles away to live with my 93-year-old father, but the rest of the siblings refuse to call me a caregiver. They insist I am simply living my life parallel to my dad. You know this is not the case if you know about memory issues. This has shown a lot of dysfunctions in my family. Most of all I am so lonely. I miss my life. I work from home so am keeping my job and being companion to my father when I am not working. The day I got here my older brother who was doing the Dr appointments was diagnosed with cancer so basically he handed me a list of the appointments for the next month and left to start chemo. Sister lives across the country, other brother does nothing, keeps distance. I am youngest and was always the black sheep. I am reeling with these new circumstances. Looking forward to reading other's experiences here, I am lonely.
Secondly, you can play rough too. I call it a note in your purse or wallet. Your siblings give you a lot of noise. I call it yang, yang. They want to drive you into their vortex ( a red-herring) instead of taking personal responsibility and listening to your concerns. Most of us can make appropriate decisions when we are being heard. A note in your purse says No matter what is flung at me, I stick to my message. And what is your message? I’m getting out of Dodge, and returning to home. Whether you are the executive or not, your father needs to be placed in a dimension center. What pisses me off is how the are using you. You came, evaluated the situation, and came to this decision. Talk to his doctor about his plan of care or to his social worker. and how to place him in the proper setting. You don’t have to be stuck. And ps. You have nothing to be guilty about.
Thank you for your honesty
Dr Edward M Smink caregiver for almost 40 years. Author of “The Soul of Caregiving, a Caregiver’s Guide to Healing and Transformation.”
Don't count on anyone else stepping up, this is when you lose friends and family. Being too busy is a pandemic excuse because being a caretaker only appeals to a few. Ask the lawyer to help you strategize a more fulfilling life.
You might curb your loneliness by changing jobs and joining a few clubs of interest. Help dad find a pleasant place with an activities director.
You may call yourself, "the black sheep," but I'd say you are the hero. Heroes must take good care not to get sucked into the vortex of caretaking that imprisons them.
Here's some info of you to learn and explore. Better for Dad to hire his care, at home or in a facility of his choosing.
Every family is the same. But your sibling did come down with cancer. You don't want to take on too much and be in the same boat.
Ask once, if the rest of the siblings refuse to help, believe them the first time around and start making other plans.
Everything comes down to $$$. It's fine to move cross country but you have to secure your finances so that when your loved one passes you are not out on the street.
Study your loved one's medical insurance. Really know what is covered and what is out of pocket. Study the OTC card (over the counter), what home services are provided and be sure to sign up for the portal. The Primary Care Doctor is important for any referrals.
I know you are a newbie at this but the help may not come from the people you would have expected. The technology is ok but you need people. It has it's place, it's convenient but you need relationships-in person NOT Facebook, Twitter, tons of emails and texts but actual people that you sit and break bread with.
Don't waste your time on people that don't want to pitch in. If it's a closed door, move on.
Keep your $$$ separate and keep any and all receipts for anything that is purchased through your father's checking or debit card. Keep an envelope for each month and check off each morning online what checks have cleared.
Buy a notebook from the Dollar Store and use this as a ledger. If you take out $20 from the ATM from his account, write down on the receipt what it was for.
Start off on a system that works for you. If you have a routine if something turns up the 80/20 rules usually applies. Eighty percent of your day will go ok, the other 20 is the "unexpected".
A girls gotta get out...join the Y (swim class, etc.) know your neighbors, have the Church people in on a Sunday and do for the one's that do for you. Get your hair done, put clean clothes and makeup on every day.
Get a library card, know what's going on in the world. I'll be honest with you, my siblings are traveling the world. I am doing all the work. It's been a long haul but I am aware of what is going on. I contribute to my future (pension) every month, eat well, have my hair colored, swim twice a week, keep my ties to the Church.
It's has not been easy but I didn't want to believe at the beginning that they really meant they didn't want to help. It's only this past week siblings are calling in because there is a family wedding and sis wants to make sure people show up.
People work out of self interest. Don't fight with them...instead keep your life in order and save your energy. Don't explain, just your make your own plan. You will learn on the job and on this forum. You will become a different person along with the way. You may gain some new virtues from being an unsung hero.
Some days I feel like when Jesus left the crowd when there was so much work to do, went up to the mountain and prayed quietly.
Care giving can be lonely job so try to keep in touch with your friends back home via social media or Zoom but with a few exceptions don't be surprised when many of the back home friends dwindle down to a birthday or Christmas card. It isn't that they don't like you anymore but you are now driving on different highways.
Call the local Office on Aging and get some resources from them including some support groups. If you or Dad have a religious affiliation call some of the local churches, temples, mosques and see if they have people who might be willing to spend a few hours with Dad while you run errands or better yet.... exhale and do something you like.
You don't mention finances but regardless of what they are, please get Power of Attorney and Medical Proxy if you don't have them. Make sure Dad's will is current. Find out who is the beneficiary of Dad's insurance polices because you will need access to funds immediately in the event of Dad's demise. Of course, your brother may have already paid for a pre arranged funeral and if so, that is one worry off your mind. Please remember to document every expense.... from groceries to the roof repair and keep receipts for everything.
Wishing you peace and blessings on this journey which can be difficult at times.
You can boldly ask what they can do to lift this burden, but don't expect anyone to jump and say "Me! Me" I'll do that!"
It's worth a try. My OS would do nothing for mother or dad. Her take was that if they needed her they'd call.
Well, they wouldn't, and mother always wondered how T was doing. T was doing what she always does--lives her own life. She's not a bad person, she' simply didn't get a 'compassion' gene.
What do you EXPECT from them? They can't know if you don't tell them. And I know that's hard, but it needs to be done, once and then if they choose not to he involved, well, you know what they're going to be like.
What were you doing prior to this situation arose/ Were you helpful to OB as much as circumstances allowed, or were you content to let OB handle everything. (no judgment, every family is different!)
I wish you all the luck going forward. Please hire some CG's so that you can have a break and recharge. Minimally, somone to clean and possibly one of those 'meal kits' that require some prep work but provide complete meals for 2-4 people. I relied on those during my bout of chemo.
PLease try to get out of the house for a long walk each day, if possible. I hope you make some new friends there, also.
Good Luck--you'll find your pace and it will be OK.
Document everything!
Make sure that will - trust is in order. Funeral arrangements are made now so you are not making emotional decisions.
Get a helper so you get some free time - visiting angels.
Make sure you have a hobby or try those paint nites - you don't have to know how to paint and you can go alone.
Find a church - church families are always willing to help. Maybe dad has a home church he is a member of.
I read your brother started chemo - call him and ask for advise not all the time but keep him in the loop. He understands the stress you are going through.
Text all your siblings so they know what you are doing. It doesn't matter if they respond or not but you can start the text or email... Dear brother/sister to keep you up to date about father....
Blessings and prayers for you!
Also, to get things clear with your siblings as to what you are doing as caregiver. The hours, the individual chores, the companionship, all should be documented. Who has POA? You should. If your father's memory issues are such that he cannot sign that over to you, get guardianship so you are the decision maker on all things concerning your father. In other words, take charge of this situation in whatever ways it needs to be done. If he eventually needs placement in a facility, don't be afraid to do that for him and for you.
Mostly, be well, and admire yourself for stepping up to this important challenge. It already has changed your life. If you decide to stay with it you might find it the most difficult and most personally rewarding thing you have ever done.
My experience with siblings was that I thought they were going to be supportive and they were not.
I’m going into my 4th year as my Mom’s primary caregiver. My best advice to you is to seek help elsewhere.
In the beginning I asked over and over for help and was constantly told a million excuses as to why they couldn’t. I am also the youngest.
Isn’t the definition of insanity doing the same thing over and over expecting a different outcome?
If your Dad has the funds or is on Medicaid get some home care even a few hours so you can get out to do something you enjoy. If home care isn’t an option look for others that may be willing to help like from the community on aging in your area or friends, neighbors etc I was amazed at the people that were willing to help
with my Mom even when her own daughters wouldn’t. I will note that this takes a lot of time and effort on your part. But it’s worth it in the end.
Hope this helps you and hang in there. It is a tough journey that no one should take on lightly as it’s not for everyone. Take care of you!
One sister understands as she went through it with my dad; brothers though...no. Additionally, it created a rift with one of my brothers when I lost my temper at him just one time for his not being there for years, and while I was not proud of how I handled it his reaction was to also be negative about me to family, and frankly, relationships with some of my beloved nieces have not been the same since. I have had to learn to accept that the family I thought I had was perhaps a bit of a fantasy.
.This winter I was alone in my hometown and it was the darkest months of my life. The loneliness of caring for an elder especially one suffering with memory issues can break you--please don't let it. You are NOT alone.
Also I don't want to be Pollyanna here because the ugliest moments of my life have been in this past year; resenting my mother; resenting my family; loneliness sometime beyond bearing. BUT--I will say this to you: "This too shall pass." That kept me going those dark months. And still does. And while I wish every day for my mom to pass so I can be free (sorry but...it's true)--and she can be out of her fear--I remind myself that I won't regret this and once it is over, I will have the satisfaction of knowing I did the right thing. AND--the pain will be gone.
But--the biggest mistake I made was not taking care of myself. Doing everything for her comfort. Not wanting to let a moment pass where I was not in control. In the process I have grown resentful and very very angry. I only took a break this past month and it feels like heaven. And guess what--my mother has been relatively fine without me (she is in facility but still, needs to be watched over).
Also: Someone wise pointed out to me that the scapegoat in the family is always the one who does the most work for the parent. It was true in my case. You are NOT alone. We have all been through it. Hang in there and be proud of yourself for your courage and strength and remember this will pass.
Also--take a break and leave if you can even if just for a few days. I finally did that and it made a big difference.
I learned a lot in this experience, One thing is--I gave up too much to do this. I don't regret it-- but not sure I would advise it for anyone else. On the other hand, not sure I would do it differently. But when you find yourself suffering deeply by taking care of an elderly parent, it affects both of you and eventually you can grow to hate them. If I had to do it over--I would have left more often and stopped trying to control everything, But it is hard.
No one does this perfectly. Modern medicine is enabling people to live long past the point of independence and only creating more suffering in many cases. There is no easy answer. Just keep reaching out. You are not alone.
I say this as an 86 Y/O who never intended or wanted to outlive my basic functionality or financial resources. I never thought I'd see my 76th b'day, let alone 86th. My husband (93) and I still live independently so far with a wonderful hired housekeeper 2-3X/month and periodic home/yard maintenance assistance.
However, I cannot deny that life has definitely become more challenging--to use the politically correct term--as I become less physically able. But here we are. Personally, my POLST and healthcare directive decline any "heroic" medical measures in an EOL situation.
( which you are already experiencing), frustration, anger, and a host of other roller coaster emotions. Fatigue and " caregiver exhaustion" are a real concern. So, not sure why this path was chosen but remember that the primary caregiver does still need in home support and not necessarily from family. You cannot change anyone and family dynamics are hugely impacted in such situations. So, in addition to being the " primary caregiver" be sure that all legal documents are in place designating you as POA so that you can make decisions on behalf of your father. If an Elder Law Attorney has not been consulted, advise you to do so ASAP as the ins and outs of elder care are deep and wide. Protect your father and yourself by consulting one.
Confer immediately with your father's PCP for an accurate " level of care needs assessment" for your father and have PCP refer you to home health and/ or hospice agencies in the area so that you can get professional in home help with him. This will be very supportive for you as well in multiple ways. Ask the PCP to refer a Geriatric Case Manager to you and your father; this is usually a licensed social worker who can help guide you through home care options to provide vital assistance to you and your father. And remember that 24/7 care is beyond demanding for the family " primary caregiver"; be prepared to also consider a memory care facility placement for your father at some point. You say that you have " left your wife" , does that mean that you left as in left for possible divorce or you have left her to care for your father and will try to keep your marriage intake? Jobs,working and caregiving 24/7 is a recipe for you becoming ill, burnout, and a host of other not pleasant and potentially unsafe conditions.
Please follow through with getting an appointment with PCP and home health referrals ASAP as well as conferring with Elder Law Attorney.
Stop trying to communicate with siblings who have made their decisions to not be involved.
While I do not have experience in this / your specific area, I offer the following:
1. I wonder how old you are, being the youngest?
2. Is there a history of silbling dynamics being 'dysfunctional' - and how has this played out over the years, if not decades?
3. While I understand you feel alone / lonely, is this 'new' in terms of interactions with your siblings.
4. I question / need clarity as to why their 'opinion' of the role you are in, i.e., caregiver 'matters' - to you? to them?
4a. This seems to be a major trigger for you and it is important not only for you to understand why; it is important for you to let them know how you feel. I wouldn't encourage 'justifying' your 'duties' / role to them although you may want to start tracking your day-to-day activities/responsibilities (i.e., make appointments, coordinate medical needs, fix meals, do laundry, etc.) - you may be able to get payment as a family caregiver either now or down the road so this documented activity is important.
4b. Are you wanting / asking for approval from your siblings? What exactly hurts you in how they are responding to you - saying you are NOT a caregiver?
- The issues may be (much) deeper than the surface response "you are not a caregiver). And, then I wonder what has happened in these relationships for them to NOT appreciate what you are doing / have done.
As is possible, I would recommend you write out / journal all your feelings and 'get it out' - perhaps even see a therapist to deal with your pain / hurt / feeling perhaps abandoned by your family. These are very deep feelings of loss.
As you feel able, ask to have a Zoom meeting for you to share your feelings - or somehow have a family conference / conversation so you can share how you feel ... not a meeting to 'convince' them what you do. You want to do this to 'empower' yourself. Trying to 'prove' to them what you do may translate into you giving your power away / feeling vulnerable, seeking their approval.
In terms of feeling lonely, I think many people experience feeling lonely and we each need to figure out how to 'fill that void' with (by developing our self-esteem, self-worth) whatever we need to feel good about our self. Consider / be aware of the 'self-messages' (are you constantly putting yourself down ... "I'm not good enough?" or are you aware of all that you are / and doing and acknowledge yourself?
- Feeling lonely also would mean to me to develop outside interests and develop new supportive relationships. Engage in activities you enjoy - meet people. Get caregivers for respite as you need - and you DO need time off, be it a few nights a week or a weekend, a day. Get out and enjoy nature / hiking - whatever will 'fill you up' emotionally.
That you say you were always the black sheep tells me that you've always felt 'left out,' and that this has affected how you feel about yourself, understandably. We all (?) want to be accepted and loved by our family although the reality is that we must FIRST learn to love ourself and the rest is 'extra' - as we are not psychologically / emotionally dependent on others' opinions or feelings about us. This is a life long process. I would guess that most of us / in society / do not have the 'family relationships / support that we want.'
While you are not ready to do this, as you heal yourself, you'll realize that FORGIVENESS of others is how you personally heal. You do not hold on to pain that others trigger in you by forgiving - you let it go. However, you need to do the inner work (perhaps / likely 'first') for forgiveness to be authentic and a healing process.
Gena / Touch Matters
I agree that you shouldn’t give up your job and preparing for your own retirement security! I also feel that caregivers, even family caregivers (maybe especially family caregivers) should be paid. They are providing a service that costs them dearly—emotionally, even if nothing else. Being compensated for your efforts also can prevent hard feelings when the elder passes.
What do I mean by that? Some elders make extra bequests to the child that cared for them—bad feelings from the other siblings who get less. Or the children share equally—caregiver child feels their sacrifice wasn’t valued.
Anyway, I wish you the best and hope you find a good support system. When the time comes that his needs are too much for you, be sure to hire help, with dad paying, or consider professional care.
But definitely get in touch with the local Area on Aging to find resources and support. They can help with respite care and other things you'll need. If you're in the City of Berkeley, call Case Management (510) 981-5180. You may find that living with Dad isn't necessary.
There is a lot of support here but finding local support can be really helpful.
I think you'll hear a lot about not letting the lack of support from your sibs hurt you. When it comes to caregiving, one basically becomes an only child, no matter how many siblings one has.
Never forget self-care and, if your employer offers it, take advantage of the Employee Assistance Program (EAP) that can help with work/home life.
You'll be okay.
Are you being paid?
Are you looking for validation or a change of heart from your dad or siblings?
If your dad has dementia, he has a progressive, fatal disease that will require increasing levels of care.
When Dad needs to move to a facility and his home sold to pay for that care, what will your life look like?
Please read this:
https://www.agingcare.com/discussions/if-you-are-going-to-become-a-caregiver-480769.htm?orderby=recent
It seems like you have been tagged as a caregiver without having the title. Take it from me, “caregiver” isn’t a title that is rewarding in any way. In fact, it’s a huge burden.
Please hold onto your job. I truly regret that I stopped working when I was my mom’s caregiver.
Have you looked into assisted living or skilled nursing care for your dad? You could then return to being his daughter or the “black sheep” who has offered to be your dad’s advocate.
If your dad is placed in a facility it is important for someone to oversee his care.
Best wishes to you and your family.